Coping with my daughter's severe disabilities

  

Finding Sanity Through Scriptures and Strangers

  

"Writing Brings Healing the Soul"

The moment I gave birth to my daughter Elizabeth in December of 1989, I felt a stab of fear--her head was so small, so deformed. Within 12 hours, I was told she had been profoundly disabled by congenital CMV (cytomegalovirus). The neonatologist said, "If she lives, she will never roll over, sit up, or feed herself." He was right.

Writing (and Scripture) was how I dealt with my initial shock and grief--organizing my thoughts of despair by getting them down on paper stopped them from endlessly swirling around and overwhelming me. Getting my revelations and stories inspired by Elizabeth published made me feel less alone as I connected with others. Sharing my story with others not only healed my own soul, but according to the letters I received from readers, my candid thoughts were also bringing some healing to them. Eventually, even my sense of humor returned and I found that I was able to start writing about other things.

In my book about my daughter, I didn't put my terribly dark thoughts into "Anything But a Dog! The perfect pet for a girl with congenital CMV," because I wanted to share the fun side of Elizabeth's life. Despite living in the mind and body of a three-month-old, she did, after all, have a good, fun life, and I in turn, had a rich and rewarding life with her. But since "Anything But a Dog!" has been released, I'm being contacted by parents who are sometimes in severe distress over their child's disabiliites or poor health and are in need of some extra coping skills.

I found my biggest help from above. Despite wrestling with God the first year with "Why me?, "I was often comforted by an act of kindness from a stranger (I always attributed God with sending me that person) or from a particular Scripture that seemed meant just for me and my particular anguish at the moment. The first several months after Elizabeth's birth and diagnosis, I wallowed in the bitterness and suffering of others, especially in Books of Psalms and Job where I found: "My days have passed, my plans are shattered, and so are the desires of my heart." Job 17:11 The Scripture that helped me begin my road to recovery from deep depression is "Perfect love casts out fear" (1 John 4:18). I dwelled on that when I was first frozen in terror over Elizabeth's forcasted bleak future. Although I prayed for a miracle all the time, I began thinking that I needed to concentrate on loving and caring for her at that moment and not dwell on what tomorrow could bring. I found it to be so true when Jesus said, "So don't ever worry about tomorrow. After all, tomorrow will worry about itself. Each day has enough trouble of its own? (Matthew 6:34). It sure does!

Examples of strangers who held out their hands to me or to Elizabeth are the tattooed carnival man and an elderly, overweight black women. One afternoon, struggling with Elizabeth?s wheelchair through the muck of an upstate county fair, I was feeling depressed because children were staring at my little girl who could not even hold up her head. "She looks funny," kids said loudly to their embarrassed parents. Sadly, it was true--with Elizabeth's small, misshapen head and need to breathe through an open mouth, she was no beauty queen. In the midst of my dark thoughts, a heavily tattooed carnival man, who looked like he had been drinking for years, ran from behind his game booth and came right up to me. My alarm melted into tears of gratitude when he handed me a large, brown teddy bear from his stash of prizes and said, "I want your little girl to have this." It didn't matter to me that Elizabeth did not have the physical skills to play with a toy--all that counted was that she mattered to someone. Someone who appeared to know what it was like to live a life some considered at the bottom of the barrell.

Another time, and this is an excerpt from my book, "Anything But a Dog!", I was in the emergency room because I couldn't get Elizabeth's seizures under control. Once she was stabilized, I needed some adult conversation so I reached out to the elderly black lady in the next bed, separated from us only by a white curtain. Drawing the curtain open so she would know I was speaking to her, I asked, "Why are you here?"

"I was eatin' some Chinese food and I felt a heart attack comin'," she replied, seemingly happy to strike up a conversation. "My friends called 911. The doctor, he says I'm havin' a heart attack because I'm so fat, but I say it was somethin' they put in that Chinese food! Now why is that precious little girl here?"

"Seizures," I said.

"Why, she's too pretty to be havin?'them seizures!" She went on to tell me about her handicapped son who also suffered seizures. He had passed away years earlier. "My son, he was a good boy. I sure do miss him."

He was lucky to have such a jolly soul for his mother. And she was lucky to have him?he probably never told her she was fat!

 

Other stranges in "Anything But a Dog!" include those that rallied around Elizabeth when she and I were trapped on a train during Hurrican Floyd. If you would like to read an excerpt of "Anything But a Dog!?" visit: http://anythingbutadog.blogspot.com/ or visit my book on Amazon and click on the "LOOK INSIDE" feature. 

The following excerpts are from the book I wrote about Elizabeth called, "Riding the Train with Elizabeth" (that book is no longer in print). That memoir is more about my thought and prayer life as I tried to cope with raising Elizabeth. It is written from a very different perspective than my current light-hearted one, "Anything But a Dog!", which is tells the story of how God brought the perfect companion into Elizabeth's life.

My thoughts that follow are meant for parents of disabled children or those who work with or care about them (please forgive the many times my computer turned ", ', and -  markes into ? marks--I will try to fix that soon!):

PREFACE

As I've reread this story, I am amazed how many adventures Elizabeth and I have had--both good and bad, but on the whole, exciting. Most adventures entailed meeting strangers who inspired me, comforted me, or simply gave me a hand when I found myself in some very desperate situations.

I always wanted an adventurous life, but I was hoping for something more glamorous than raising a severely handicapped child. Yet when I read of people surviving places like the South Pole, or even conquering them, I realize they didn?t have much glamour either. Their adventures were also filled with terror as well as thrills ? and deep heartache. It took me a long time to realize that raising Elizabeth fit the criteria of a true adventure.

I felt called to write this story. It started as a series of form letters to my family and friends to update them on how my husband Jim and I were doing after our second daughter, Elizabeth, was born with a severely damaged brain. I wanted them to know how to treat us and in what light to view Elizabeth. It was much easier to write about our circumstances than to wait for loved ones to ask me terribly painful questions like, ?How are you doing emotionally?? or ?What is Elizabeth's prognosis?? or ?Is she sitting up yet?? I could not bear reflecting on those topics over and over again. I preferred to let everyone know through my letters, so that when we spoke, we could speak of more pleasant matters. My soul needed to see cheerful faces around me, not ones filled with awkwardness and pity for our plight. Jim and I wanted to be treated like a normal family.

As I turned these letters and additional thoughts into a readable book, my faith grew stronger. I remembered the many ways God healed my soul and gave me hope through scripture, friends and strangers. I needed those reminders, especially during those times when I doubted God's promise that ?all things work together for our good.? The writing process then became an important part of the healing process.

This story lays my heart bare. My hope is that it will let others know how to relate to families like ours; to inform professionals in special education that their words have the power to either hurt or heal; and to help people experiencing their own hardships to find hope and laughter ? and adventure ? in the midst of adversity.

My book is also for those who want to see how one woman learned to accept life's difficulties, rejoice in God's gifts, and overcome crises of faith and family. It is for those who still believe in miracles.

.2.

Shattered Dreams:

Elizabeth's Birth

?My days have passed, my plans are shattered,

and so are the desires of my heart.?

Job 17:11

 

As soon as I saw my newborn baby, I felt a stab of fear. I knew there was something very wrong. My immediate thought was, ?Her head looks so small. So? deformed.?

Prior to that moment, I thought I had the perfect life. Happily married, I had a healthy three-year-old daughter, and enjoyed being a stay-at-home mom. My biggest preoccupation was getting rid of the bathtub ring before my in-laws arrived for a visit to our Maryland home. My husband Jim and I enjoyed life together and waltzed through most of it with a sense of humor ? until the day our second daughter was born, a week before Christmas, 1989. How cruelly ironic it was, that the birth of such a crippled child seemed to mock the celebration of the perfect child, Jesus. Instead of sending Christmas cards filled with words and wishes of joy, I posted an identical form letter to members of our family after the first of the year:

 

Dear Family and Friends, January 1990

Sorry your Christmas card is so late, but we wanted to wait until the birth of our baby to write.

Elizabeth Ann Saunders was born on December 18th at 10:00 P.M. She weighed five pounds and thirteen ounces. The rest of my announcement is not a happy one. Elizabeth has profound microcephaly ? a very small and underdeveloped brain. A CAT scan of her brain reveals extreme damage throughout.

The first few days were a nightmare for us. Of course we are in shock and our hearts ache for our daughter. Listening to the doctors predict her future lack of development is hard to take.

Initially Elizabeth had poor circulation and often stopped breathing. But we serve a God of miracles and her life-threatening infirmities were healed. We brought her home the day after I was discharged. Her doctor was quite surprised by her immediate progress. She looks around a lot and loves to be cuddled. Although her brain is still very small, we have faith she is going to develop better than the doctors predict....

 

This was my first form letter chronicling Elizabeth's life and our family's adjustment. Before Elizabeth was born, I imagined writing the typical Christmas letter highlighting all of God's blessings from the previous year. Although I knew, through my knowledge of scripture, that Elizabeth's arrival was a blessing, I felt far from blessed. I felt stricken.

Despite the somewhat optimistic tone of my letter, when Elizabeth's extensive brain damage was confirmed through the CAT scan, secretly I begged God to kill me. I also chose to leave out of the form letter the doctor's declaration that Elizabeth was ?severely? retarded, would never be able to roll over much less sit up, and was also possibly blind and deaf.

To give birth to a developmentally slow child would be tough enough, I imagined, but to a child who would have absolutely nothing going for her in life seemed unbearable. This child would grow into a helpless, twisted, deformed adult who would be stared at and scorned in public. This child would need constant care for the rest of her (and probably my) life. Elizabeth's CAT scan promised us a child who would forever change our happy, carefree life into one of unending heartache and toil.

Why me? Why did God pick me out as the mother who should endure this calamity? I was afraid my feelings of horror were permanent ? that I would never again be happy or able to function normally. Only my death could free me.

So, with a Job-like plea, I begged God to strike me dead.

But God did not kill me. Instead, I began the greatest adventure of my life ? on a journey that took me from the deepest darkness to the brightest light. Through the help of Scripture, family, friends, and strangers, God delivered me from despair and gave me hope. But it took me a while to get it?

 

.4.

 

Then Came Darkness

 

?Yet when I hoped for good, evil came;

when I looked for light, then came darkness.?

Job 30:26

 

On Christmas Eve, almost exactly a year before Elizabeth was born, I lost a baby through miscarriage. It happened as Jim, two-year-old Jacqueline, and I were traveling to New York to visit my parents for the holidays. After visiting a hospital to deposit the baby?s remains, we continued our sad journey, mourning our loss. The Christmas lights twinkled along the way, and Bing Crosby sang ?I?ll be home for Christmas? on the radio. Jim and I wept as we thought of our little one, who went home to be with the Lord for Christmas.

The day before, a sonogram had revealed an imminent miscarriage ? the baby was not developing normally. Knowing that God still performed miracles, Jim and I asked God to heal our child. While we were praying, however, I sensed we were meant to let the baby go. Although Jim still held out hope, I prepared myself, with sadness yet with a certain peace, to lose our child.

Though grieving, I felt God?s presence and comfort. Later I picked up the Bible and happened to flip it open to the cries of Job, another immensely troubled soul: ?Why did I not die at birth, and come forth from the womb and expire?...then I should have been at rest (Job 3:11,13). Would our baby have had a life so tortured that God in his mercy allowed it to die in peace? God often spoke to my heart through scriptures. I believed this was one of those times.

During the first few months after the miscarriage, seeing other babies brought immediate tears as I longed for what could have been. We wanted another baby as soon as possible, and Elizabeth was conceived three months later. An early sonogram revealed Elizabeth would be due on Christmas Eve ? exactly one year after we lost our last child. We felt such a miracle was a sure sign that God was planning a most blessed Christmas for us, easing the pain of our last tragic one. The pregnancy progressed normally. During another sonogram at sixteen weeks, we both experienced the joy of watching Elizabeth move around in my womb.

Jacqueline also eagerly anticipated her new role as big sister. She often affectionately patted my belly and said, ?Hi baby, hi baby. I love you.? I imagined my joy at seeing Jacqueline teach, love, and protect her new sibling. I could see them playing happily together on the floor. Although we did not know the baby's gender, Jacqueline was certain it was a girl. Jacqueline helped prepare her room while we waited for the baby?s arrival.

My friends celebrated the upcoming event with a baby shower. They also rejoiced with us that God had provided some comfort with another child after the miscarriage. With everything going so well, only joyful expectation filled my heart. I dismissed any fear that something could be wrong with the baby. Jacqueline was normal, and I was a healthy twenty-eight-year-old woman, so there was little to be concerned about. Besides, God was blessing us with this child; he would not allow us to suffer another tragedy. I opened my presents happily, unaware of the secret within me.

In contrast, when pregnant with Jacqueline, I worried about every little thing I inhaled and ate. I did not want to somehow be responsible for injuring a developing baby. I thought I could never handle being the mother of a child with deformities or mental retardation. When it came time to deliver Jacqueline, I asked Jim, ?Will you still love the baby if something is wrong with it??

He sincerely replied, ?Of course I will.? I believed him and hoped that I could love such a baby, too.

One of the most thrilling moments of my life came when I held Jacqueline for the first time. Next to the day when Jim proposed, I had never experienced such delirious joy. I could not believe how much I loved her right away. She was the most beautiful baby ever. Her red hair and blue eyes (Jim and I both have brown hair and green eyes) delighted and surprised me. I could not wait to deliver Elizabeth and experience that same incredible joy.

Elizabeth was born on Monday, December 18th, 1989. After the pediatricians cleared her lungs, they presented her to me. I felt sick. ?Her head looks so small ? so deformed,? I thought, ?Is something wrong with her??

The doctor said, all too matter-of-factly, ?Your baby's head is small ? she will have to be evaluated in the morning.? I knew what a small head meant ? a small brain. Elizabeth was also having difficulty breathing, so she was not allowed to remain with us for the initial bonding time a mother craves with her newborn. Jim and I tried to reassure each other that nothing was wrong, but fear overwhelmed me.

Jim eventually went home to get some sleep. All night long, I tossed and turned wondering what her evaluation would reveal. The next morning, the doctors still had not contacted me. I became frantic. Finally, a neonatologist came in and approached my bedside. He dropped the bomb: ?Elizabeth has profound microcephaly,? he began, ?meaning her brain is extremely small and damaged throughout. It does not even fill her small skull cavity. She is having difficulty breathing, her circulation is poor, and she cannot maintain her own body temperature. I don't know if she will live.?

Having pronounced the sentence and confirmed the wretchedness of my daughter's life, the doctor studied my face, looking for a reaction. I gave him none. I refused to have one. I decided this was not really happening. To my relief, the doctor finally left the room. I hoped he would not return.

When Jim arrived shortly thereafter, the neonatologist returned to give us Elizabeth's lifelong prognosis. ?If your daughter lives, she will be hospitalized for a while. Her arms and legs draw rigidly towards her chest, indicating a muscular disease (a general term for cerebral palsy). She will never roll over, sit up, or feed herself.? He continued dispassionately, ?Her color is bad, her cry is strange, and she startles violently whenever people touch her. I don't even know if she can see or hear.? He paused to give Jim and me a chance to say something. But we only stared at him silently. What could we say to a man whose attitude suggested that Elizabeth was one of the most disgusting examples of humanity he had ever seen? His words left us with no room for hope.

The neonatologist capped his cold forecast, ?Quite frankly, I don't think she's going to live.? Jim finally responded. He broke down and cried.

The doctor concluded that a virus had caused Elizabeth's birth defects. I probably contracted the virus cytomegalovirus within the first half of my pregnancy. Common and sometimes symptom less, cytomegalovirus may harm a fetus, but rarely to this degree.

The doctor's final remark before leaving Jim and me alone to digest this news was, ?Of all the cases I've seen, Elizabeth's is the worst.?

Another doctor from a prestigious hospital in Washington, D.C., examined her. His evaluation was similar, but he delivered it with more compassion. ?Perhaps you can place Elizabeth in a nursing home when she gets bigger.? I thought of the dying, immobile patients I?d seen in such places. I visualized Elizabeth lying on a bed with a little sign posted over her, reading, ?Reposition every two hours.?

I always knew that I could not handle such a trauma; now I began to prove it to myself. Contentment slipped away, and a depression of never-known dimensions settled in its place. I begged God to kill me ? to release me from this pain. First, I prayed to be struck by lightning. I became hopeful when clouds outside darkened, and I actually stood next to the window to wait. I had heard of a few rare cases where people had been struck indoors by lightning that passed through a window. But when no lightning flashed across the sky, I prayed instead for an earthquake. What a relief to be instantly crushed to death in the rubble. I just could not bear to live and see my baby grow as a crippled, deformed human being.

God ignored my pleas. No death. No escape. Just trapped. I desperately tried to stop thinking of myself ? Jim needed his wife and the girls needed their mother. The only thing that kept me going was God's promise ?that in everything God works for good? (Romans 8:28). I needed to believe ?good? would come from this trial, but I doubted I would ever be happy again. Realizing I probably had another forty-five years yet to live, my agony deepened.

The hospital moved me to a private room, since my weeping and wailing made it awkward for other new mothers on the maternity ward. Instead of enjoying Elizabeth's first days of life as planned, Jim and I entertained a host of doctors. Friends and pastors came to pray. The hospital's chaplain also visited. He humbly asked God for a miracle. He prayed, ?God, may I be so bold as to ask you to heal this little girl.? I appreciated this stranger's prayer, thankful that he did not try ?encouraging? me with the usual religious platitudes, such as ?You must be very special people for God to give you a child like this.?

Jim fasted and prayed for God to spare Elizabeth's life, and to restore her brain. During a visit, our pastor recalled the gospel story from John 9, the time Jesus' disciples saw a man born blind. The disciples asked Jesus who had sinned, the blind man himself or his parents? Jesus replied, ?It was not that this man sinned, or his parents, but that the works of God might be made manifest in him.? With that, Jesus healed the blind man. According to our pastor, that story applied to our situation. Would Elizabeth's outcome be the same?

Jim was desperate for Elizabeth to live, regardless of her future. His only concern, aside from keeping her alive, was as he put it, ?To protect her from the cruel world she has been born into.? He did not want her to hear the doctors' unkind words. Jim's love and compassion for Elizabeth were beautiful. I marveled at the depth of his character ? a depth I had never realized. How could I have been so fortunate as to marry a man like him? Yet what would he think of me if he knew my terrible, secret hope ? that if God was not willing to kill me, perhaps he might let Elizabeth die?

Friends from church, Drew and Diane, came to visit. They had a three-year-old son Reid who was still recovering from a very traumatic premature birth. Like Elizabeth, Reid was microcephalic. He was also blind, had cerebral palsy, and needed to be fed through a stomach tube. Diane told us, ?Reid brings us a lot of joy. We are a very happy family.? Her words flickered the first spark of hope that life could be worth living again, regardless of how Elizabeth developed. But that spark dimmed in the darkness that suddenly overshadowed our lives.

Jim and I visited Elizabeth several times a day. Her room was all the way at the other end of the building. It seemed so far away. I was too weak for much walking, so Jim pushed me in a wheelchair. As we progressed down the long hallway between our room and Elizabeth's, dread grew and overwhelmed us. How would she look? What new horrible diagnosis would the doctors reveal?

Nurses stared at us along our route and offered their sympathy. As Jim and I journeyed on, the walls and lights appeared hazy and distorted. We barely noticed the Christmas decorations hung along the hallway. At one point, I commented hopefully to Jim, ?Maybe this is all a bad dream. Maybe this is not really happening.?

?It definitely feels like a bad dream,? Jim responded. ?Maybe you're right.? I found comfort in entertaining that possibility.

But as we stopped to drink from a water fountain, the chill of the water brought reality back. This was not a dream. This was a living nightmare.

I hated the hospital's intensive care nursery with its beeping monitors and grim doctors. Elizabeth should be in the cheery nursery, as Jacqueline had been, behind large panes of glass where the newborns are openly displayed like beautiful bouquets. In front of these windows there is much celebration as parents, friends, and relatives ?ooh? and ?aah.? In contrast, Elizabeth was hidden behind a door with a tiny window, away from the mainstream. Once inside the door, we entered a room with a huge metal sink where we dressed in hospital gowns and scrubbed our hands. Before entering the nursery, we braced ourselves for yet another encounter with her doctors. Although the thought was irrational, the doctors became our enemies. They offered little help or hope. They merely gave their forecast of doom. Near Elizabeth lay a newborn with Down syndrome. Her young mother hovered anxiously over her, looking as ill as I felt.

I thought back several years to the Christmas Jim proposed, asking, ?How would you like to spend the rest of your Christmases with me?? He never mentioned how difficult Christmas could be.

 

.5.

 

Elizabeth's First Days

 

?If the only home I hope for is the grave?where then is my hope??

Job 17:13-15

 

Elizabeth lived in an isolette ? a small clear plastic bassinet ? in the intensive care nursery. She was hooked up to an I.V. and several monitors. I repeatedly averted my eyes from her misshapen skull. Her cheeks were wider than the top of her head. Her limbs drew up, her tongue protruded slightly, and her eyes barely opened. She looked pathetic. ?Oh God,? I prayed, ?please help me love her.?

When Jacqueline first saw her, she exclaimed, ?She's going to have a big head just like me.? Jim believed that God prompted her to say that as a comfort to us. But at the time, it was a painful reminder ? the doctors said her head (her brain) might never grow, or at best, grow slowly.

Jacqueline was so proud of Elizabeth. She had no reason not to be, since children often take such tragedies better than adults. Nevertheless, we wanted to keep Elizabeth's prognosis to ourselves for as long as possible. Jacqueline waved toys in her face and often kissed her. Eventually, the nurses unhooked all her monitors, except the heart one, and allowed us to hold her. Despite being sickly and helpless, Elizabeth's sweet little spirit began to shine through. A small bit of happiness crept into my heart like a glimmer of candlelight in a mammoth cave. ?My poor baby,? I thought. ?While she was minding her own business and developing in what she thought was the safety of my womb, that virus savagely attacked her central nervous system.? I had trusted God to protect Elizabeth while she was being formed. Why hadn't he?

On the first full day after her birth, as the doctors told us we needed to decide whether or not to put her on a respirator, her breathing deteriorated. Thankfully, Jim and I never had to make that decision. By that evening, her respiration, circulation, and temperature regulation problems corrected themselves. This first of many little miracles broke like a wave across her.

Unlike Elizabeth's doctors, her nurses maintained a positive and kind attitude. ?Elizabeth loves to have her head rubbed,? they encouraged. ?She's a good eater.? Elizabeth was not a ?bad prognosis? to them, but a little girl worthy of affection. These women planted seeds of love for my daughter in my heart.

On the fourth day, Thursday, the neonatologist told us Elizabeth could go home soon. He was surprised she had stabilized so quickly. He warned me, however, that a damaged brain could not be trusted ? she could die suddenly at any time.

Elizabeth's pediatrician later told me that while in the hospital, her brain appeared to grow, expanding upward to the top of her skull (her skull was originally so small the doctors feared she was anacephalic?without a brain). He found that hard to explain, but Jim and I knew God had intervened. Although her head was still very small, she won a victory over death. Before we left the hospital, Elizabeth's pediatrician said, ?God has chosen you to raise Elizabeth.? He was the first doctor to suggest that Elizabeth's condition was not some hopeless, meaningless tragedy.

We brought Elizabeth home Friday morning, December 22. Walking through the door of the intensive care nursery to collect her, I heard a strange, pitiful cry. ?What's that?? I wondered. I shuddered when I realized that the odd cry represented Elizabeth's feeble protest to a bath. Before leaving, I saw the family of the baby girl with Down syndrome. Still not sucking, the baby was having heart trouble. The grandmother held the child lovingly, trying to coax her into drinking from a bottle. Approaching her, I said, ?Your granddaughter seems like such a lovely girl.?

The grandmother, beaming with pride, said, ?Oh yes, she is a very special little girl.? This grandmother's love cheered me and filled me with hope.

Elizabeth came home without much fanfare. She had defeated death, for the time being, but my horror over her prognosis persisted. But I fought through it; Christmas preparations needed to be made. A second Christmas had not turned out as hoped.

Now home, Elizabeth slept in the bassinet next to our bed. Jim could not sleep fearing she would stop breathing. Mornings were worse. When I awoke, the first thing I saw was her small skull. The moment I saw it, renewed feelings of dread and sickness flooded back. Her prognosis re-awoke with me, taunting me throughout the day by playing itself over and over again, like a broken record. At times, my heart cried out in unison with Psalm 73: ?All in vain have I kept my heart clean and washed my hands in innocence. For all the day long I have been stricken, and chastened every morning.?

Shame began to set in. I was more consumed with how Elizabeth's condition affected me than how it affected her. I feared I would never be the kind of mother an innocent child like her deserved. Jim, on the other hand, loved her selflessly, giving little attention to his own pain. He was just angry at the doctors for saying such mean things about her. It's sad, but some fathers abandon their families in situations like these. They cannot bear the agony and shame of nurturing a child who is not a ?chip off the old block.? But when I watched the way Jim looked tenderly upon Elizabeth, cradling her in his arms, I knew that Jim would be a comfort, rather than a source of additional heartache.

In accord with our church family, Jim and I believe that the Bible is the word of God ? a God of mercy with healing power who still performs miracles. ?Is any among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord; and the prayer of faith will save the sick man and the Lord will raise him up? (James 5:14-15).

If ever there was a time to take God at his word, this was it. So on Christmas Eve, six days after her birth, we called in the church elders. They prayed over her and anointed her head with oil in the name of Jesus Christ. They prayed the ?prayer of faith.? They prayed believing she would recover, but sadly she did not look any different. In the sixteenth chapter of Mark's gospel, Jesus promised that believers shall lay their hands on the sick, and the sick will recover. There is no promise, however, that they would recover instantly. Jesus taught ?whatever you ask in prayer, believe that you have received it and it will be yours? (Mark 11:24). Instead of the indescribable joy of seeing Elizabeth healed as we prayed, it looked like I would have to settle for receiving the promise of her eventual healing.

Through Elizabeth's first few weeks, she ate and slept well. She was no trouble at all. She seemed to have quite a nice little personality. Although she would not make eye contact with us, which was disturbing, she looked around and liked looking at our Christmas tree. Jacqueline loved to hold her and lie next to her. Our families came down from New York to visit. They cuddled her and spoke cheerfully to her. I was relieved ? it was obvious they were not going to ignore Elizabeth in an effort to escape their pain.

Friends called but had no idea what to say. What does one say to people whose dreams have been shattered? The flowers we received were not in congratulations, but in sympathy.

Most parents cannot wait to show off their newborns, but I felt like hiding. I dreaded each introduction. I did not want people to see she was ?different.? My pain deepened whenever people greeted her with long, pitiful faces.

Introducing a severely brain damaged child to the world is vastly different from presenting a ?normal? child. There was little rejoicing over the newness of Elizabeth's life. When we had introduced Jacqueline, people noticed her bright, alert eyes and asked, ?She doesn't miss a thing, does she?? When people first met Elizabeth, they noticed she made little eye contact and asked, ?Is she blind??

Initially, whenever I looked upon Elizabeth, my heart broke afresh. I could not see past her prognosis. ?The prognosis? became more of a person than Elizabeth herself. Inquiring people would ask, ?What do the doctors say? What is her prognosis?? I hated to answer. I hated the doctors and their prognosis. It was too hideous to speak. This ?prognosis? was like a living creature relentlessly torturing me.

When I finally unpacked my suitcase from the hospital, I came across Elizabeth's baby book. I opened it to see blank pages entitled ?Baby's Birth,? ?Baby's First Day,? and ?Parents? First Impression.? How could I possibly record the truth? How could I write that I asked God to kill me rather than endure raising a child with severe disabilities. Later I received pictures taken at my baby shower. I couldn't bear to look at them. The Lisa in the photograph looked so happy, so hopeful. Now, it seemed all that joyful expectancy had been a cruel joke.

Bitterness leaked into my heart. I envied those who gave birth to normal children. When Jacqueline's nursery school teacher celebrated the birth of her first grandchild, she wore an ?I'm a proud Grandma? button. I cried. No one wore an ?I'm a proud anything? button for Elizabeth. It would have been so much easier if I had just adopted her knowing full well her condition beforehand instead of giving birth expecting something else. I had given birth, not to a baby, but to a tragedy.

Bitterness and envy ? sins against God ? rot away one's very soul, but these emotions wrapped themselves around me. How could God allow such a blessed event to turn into this tragic nightmare that might never end in my lifetime? God's word says children are a gift and a reward, but I felt cheated and punished. I desperately needed God's help to overcome feelings of self-pity. Since God promised that all the events in my life would work for my good, I needed to know and appreciate what that good was. I began studying scriptures on the benefits of affliction.

Perhaps God intended to use Elizabeth's traumatic arrival to test me, the way the Israelites were tested in the wilderness. God let them suffer many hardships to humble them and reveal what was in their hearts; to learn whether they would keep his commandments or not (Deuteronomy 8:3). Having an imperfect child is very humbling, and I would find out if I loved and trusted God as much as I thought I did.

In fact, I re-evaluated my entire faith. Is God loving, and if so, does God love me? Does God even exist? Instead of harboring bitterness, I needed to respond to this calamity in the manner of Job if I hoped to please God. God allowed Satan to test Job by destroying his wealth, killing his children, and afflicting him with painful sores. To all of this, Job responded, ?The Lord gave and the Lord has taken away; blessed be the name of the Lord.... Shall we receive good at the hand of God, and shall we not receive evil?? (Job 1:21, 2:10). Job did not charge God with any wrongdoing, and eventually God greatly rewarded Job for his steadfast trust. I too wanted to trust God.

 

PART II

 

SURVIVING DOUBT AND DEPRESSION:

THE FIRST YEAR

 

.6.

 

Profound Challenges

 

?If your law had not been my delight,

I would have perished in my affliction.?

Psalm 119:92

 

Being home with Elizabeth the first few months was dismal. It seemed all I could do was rock her and read the Bible. The rocking chair and God's word were my only anchors to hope and peace. There were so many scriptures on healing. Maybe if I believed enough, Elizabeth would be walking by next Christmas.

Attempting to focus myself on the promises of God, and not on how impossible Elizabeth's situation appeared, I wrote scriptures relevant to our situation on index cards and carried them around. When rocking Elizabeth, or when preparing meals, or when taking her to the doctor's, or settling her into bed, I would read them aloud over and over again. My exercise in sharing scripture with Elizabeth began:

?Bless the Lord, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases? (Psalm 103:3).

?This was to fulfill what was spoken by the prophet Isaiah, `He took our infirmities and bore our diseases'? (Matthew 8:17).

?And his name, by faith in his name, has made this man strong whom you see and know; and the faith which is through Jesus has given this man perfect health in the presence of you all? (Acts 3:16).

?I will put none of the diseases upon you which I put upon Egyptians; for I am the Lord, your healer? (Exodus 15:26).

?Then shall your light break forth like the dawn, and your healing shall spring up speedily? (Isaiah 58:8).

?The Lord will do everything He has promised because His love is constant forever? (Psalm 138:8).

?We have asked God that you be filled with the Spirit of God, with ability, with intelligence, with knowledge, and with all craftsmanship so that you may create beautiful works for the Lord? (Exodus 35:31).

?You can do all things through Christ who strengthens you? (Philippians 4:13).

Believers have laid hands on you and the elders anointed you with oil and prayed the prayer of faith so you are recovering. (Mark 16:17-18 and James 5:14-15)

Although my trust in God's healing promises grew daily, the truth was that my faith in her complete recovery was as much an infant as she was. I was still weak and sick at heart over Elizabeth's condition. Despite all my prayers, her head was still not visibly bigger, thus her brain was still abnormally small. But Elizabeth began making some noticeable improvements. At her six-week checkup her pediatrician claimed her appearance was unbelievably improved. Almost flabbergasted, he called in his nurse to see her. She was gaining weight and was in good health. Could God be doing more than I realized?

One month later, while lying in my arms, Elizabeth looked up into my eyes and smiled. I became instantly elated. We had connected. She could express love and pleasure to me. I told Elizabeth's pediatrician at her next check-up, and he was thrilled. He did not expect a girl like her to be aware of her surroundings. He gave God all the credit for this latest development. I now had something to be thankful for ? some proof that God was really going to do what his word promises. Little did I know that she had reached a plateau in her level of development that would last a very long time, testing my faith beyond anything I had experienced.

Everything, including my hope, seemed to stand still when Elizabeth was about two-and-a-half months old. Time marched on, but Elizabeth lagged further behind. Her development appeared to stop altogether. Her prognosis taunted me. ?See, I was right,? the personified prognosis seemed to say. We were not experiencing those little miracle improvements anymore. She only made eye contact occasionally and showed little interest in toys. Her hands were clenched tight in tiny fists and her arms bent rigidly inward toward her chest. Her head still flopped about like a rag doll. She moved little, except to kick her legs occasionally.

New and horrible thoughts tormented my soul. I had been kidding myself. God doesn't really exist. If God does not exist, then of course Elizabeth will never recover ? and I am doomed. And worse, if God does exist, and I do not believe in him anymore, then I'll go straight to eternal hell after this earthly hell is over. To calm these frightening thoughts, I read the Bible again where it records how we can know God exists. First, we have the miracle of creation all around us. Secondly, our consciences testify to us of his laws. Looking out my window helped. All around me were birds, grass, and trees. It was more than just a cataclysmic explosion that created this beautiful harmony. As for conscience, I knew all too well about feelings of guilt when we disregard God's laws. Only a compassionate God could give us feelings of sorrow over our own sin.

Still, other tormenting thoughts emerged that needed to be dealt with. What if God does not really perform miracles anymore? I had never seen a miracle ? not of the magnitude that Elizabeth needed. I had prayed for people, and they had died anyway. If God did not see fit to spare those lives, how could I trust him to restore Elizabeth's brain?

One afternoon when I was overwhelmed and distraught by how much Elizabeth's symptoms matched her prognosis, I left Elizabeth with Jim and retreated to bed. I flipped open the Bible and read the story of Jairus ? a man who rejected the prognosis made over his daughter. When she was ill, he sought Jesus to heal her. Jairus and Jesus were on their way to Jairus' home when they heard that the girl had already died. Jesus said to Jairus, ?Do not fear, only believe? (Mark 5:36). Jairus chose to believe Jesus and reject the dreadful report he heard. I wanted to be like him.

When Elizabeth was first born, the doctors told us she would need to have her eyes, ears, and physical and cognitive development tested. The hospital gave our phone number to the Montgomery County health department and to a specialized hospital in Washington where the tests would be conducted. Elizabeth was now part of ?the system.? The doctors and county administrators told us what to do, instead of suggesting it. Suddenly, I was no longer the parent ? the system was. My desire to keep her home and deny reality did not deter the system from taking over. Any moment of peace I had concerning Elizabeth's condition was shattered every time a receptionist called to schedule an evaluation. I equated evaluations with bad news. I felt sick as I drove to her first eye appointment. Cytomegalovirus, the virus that created Elizabeth's deformities, often injures eyes.

To my relief, Elizabeth's eyes proved to be fine. Although the doctor could not venture whether Elizabeth's brain could interpret what she saw, he was convinced that the virus had not damaged her eyes. He was surprised and relieved. I thanked God for showing me a sign that he was intervening to make her well and whole.

The trip to Children's Hospital for Elizabeth's developmental evaluation appointment sickened me. I already knew she was barely developing. Why put words to it? Why not just drive toward my own execution? We drove through a dangerous and congested section of Washington, D.C. ?Maybe I'll become the victim of a drive-by shooting,? I thought a little hopefully.

Hurting parents and afflicted children filled the waiting room. One newborn appeared hydrocephalic. One toddler displayed characteristics of Down?s syndrome. She played happily with her older sister. She could respond to directions and was able to get around easily on her hands and knees. Walking was clearly in her near future. I once thought I would be devastated if one of my children had Down?s syndrome, but now, after watching that little girl, I longed for Elizabeth to enjoy such mobility, despite mental delays.

Elizabeth's cheerful evaluator exuded kindness. She was pleased Elizabeth could visually respond somewhat to her environment. Much to our delight, she acknowledged that Elizabeth was responding to our voices, in other words, the evaluator agreed that Elizabeth could hear. She explained, however, that Elizabeth's muscle tone was clearly abnormal. Some muscles were hypotonic (too loose) while others were hypertonic (too tight). The evaluator prescribed physical therapy immediately. Physical therapy maintains that by stretching the muscles moving the trunk and limbs, the brain can be taught how movement is accomplished. Until the brain assumes these basic functions, keeping the muscles limber so the joints and bones will grow properly is important. The brain, through maturity, may eventually be able to send movement messages. If the child is not regularly exercised, the body may be unable to respond because the joints and muscles have lost their elasticity.

So began Elizabeth's physical therapy. A therapist, Becky, came to our house once a week to work with Elizabeth and teach me what to do. She instructed me to stretch and exercise practically every muscle ? from her tongue to her toes. Depression accompanied my first meeting with Becky. I did not want a therapist; I wanted a miracle. During the initial session with Elizabeth, an obviously concerned expression broke across Becky's face. I could no longer deny the severity of Elizabeth's condition. It was profound.

 

.8.

 

Fighting Depression

 

?How long must I bear pain in my soul,

and have sorrow in my heart all the day...

Consider and answer me, O Lord my God;

lighten my eyes, lest I sleep the sleep of death?

Psalm 13:2-3

 

Depression pressed in as I focused on any and all of Elizabeth's differences. How true it is that ?Hope deferred makes the heart sick.? (Proverbs 13:12) Elizabeth grew, but showed few signs of real development, and the trauma of her arrival remained with me. The anguished thought of a delayed healing panicked me. What if she had to sit in a wheelchair? What if she became funny looking as she aged? Job had been tested with physical infirmity for nine months. God had not healed Sarah of infertility until she was ninety years old. And I felt that another day would be too much. I simply could not bear the thought of Elizabeth developing into a twisted, drooling child. Now deep anxiety joined a cold depression. How long would it take for God to answer my prayers?

One day, I pulled into the driveway after returning from a doctor's appointment. I opened the back door, removed Elizabeth from her car seat and lifted her over my shoulder ? the usual way I carried her. Just then, I had a "vision": I saw us both, Elizabeth much larger and older, and me, still lifting her over my shoulder to carry her. I had never had a vision before, so I didn't really know if this was one. I shuddered and screamed in my head, "No! This will not be her life ? or mine!? I pushed it from my mind and went into the house.

The following day, I visited my next door neighbor Karen. She and I were good friends. She said, "I don't know how to tell you this, Lisa."

"What?" I insisted on knowing.

"Well, yesterday I was standing by the window, watching you lift Elizabeth out of her car seat and onto your shoulder. Suddenly I saw her much bigger. I don't know why I saw that or what it means."

I said nothing to Karen. I was stunned. I didn't want that vision to be a reality. It didn't fill me with acceptance. I wasn't even sure what it meant. All I knew is that I didn't want it to mean anything ? I didn't want it to come true.

The only source of real relief came from the Book of Psalms. Before Elizabeth was born, I occasionally read here and there in the Psalms, and I thought, ?How could somebody be this depressed?? But now I knew. The psalmists spoke directly to my pain and wrote things I would not dare say to God. They questioned his love and power. Their honesty helped me express my grief to God. I could relate to the psalmists? pain and feeling of abandonment as they waited on God's deliverance. Knowing I was not the only one despairing of life made me feel less alone in my anguish. Wishing for death was no longer a constant desire.

For hours I sat rocking Elizabeth and listening to sad music. Releasing my tears alone with her somehow comforted me. Elizabeth loved to be held and cuddled ? something Jacqueline never enjoyed. During these times my love for Elizabeth began to grow. Despite her abnormally shaped head, she was a pretty baby with big blue eyes and long lashes. ?She could not help being born this way,? I'd think. ?It is up to Jim and me to ease her journey through life.? I never wanted Elizabeth to be sorry she was born into our family, or born at all for that matter. My heart was beginning to warm again.

When Elizabeth was about five months old., we attended our church's weekend retreat. There our head pastor's wife asked how she could pray for me. I asked her to pray that I would feel God's love. I understood that God was refining my character through these trials ? that he disciplines us for our good so we may share in his holiness, but it sometimes seemed that he would kill me in the process. The lessons that God wanted me to learn were cloaked by overwhelming grief.

After one of the services, Terry, a fellow church member, approached. A few years earlier, her three-week-old son Jeremiah had been kidnapped from the hospital. Four-and-a-half months later, he was found and reunited with Terry and her husband. Terry said, ?You have been on my heart all day. God revealed to me that the pain you feel over Elizabeth is as deep as the pain I felt over Jeremiah's kidnapping. God wants you to know that he loves you and he wants you to feel his loving arms around you.? With that, she hugged me. Her arms, however, did not feel human ? they felt like the very arms of God. I was completely filled and surrounded, inside and out, by love. The presence of love felt incredibly strong, as if it were a supernatural being. It was a supernatural Being- it was God. I wept. God had not forsaken me.

During Elizabeth's first six months, the only things I found easy were rocking and music ? and reading. Everything else seemed too difficult ? cleaning and making dinner were almost beyond my mental and physical ability. Jacqueline spent a lot of time watching television. I took care of her basic needs, but my mind was so disordered and distracted by sorrow, I had little energy to truly parent her or have fun with her. Would I ever enjoy Jacqueline's childhood again?

Poor Jim! What a depressing wife he had haunting the house. I wondered if he regretted marrying me. When asked, he emphatically replied, ?Of course not. But I do wish you could spend more time thinking about us rather than being so preoccupied with Elizabeth. It's been a long time since we've had some fun ? some romance.?

I envied Jim for not viewing Elizabeth's condition as so serious that we could not move on and enjoy life. All I could do was rock in my chair and feel sorry for Jim ? sorry that he had to watch me wallow in misery. I seemed unable to snap out of it.

Thankfully, Jim remained patient, but would I remain this deeply depressed until Elizabeth was healed? It frightened me to think depression would only get worse if Elizabeth aged without improvement.

 

.9.

 

Driving Fear Away and Inviting Forgiveness In

 

?Blessed are the merciful, for they shall obtain mercy.?

Matthew 5:7

 

My friend Diane was one avenue God used to relieve my anxiety attacks. She had once suffered them because her son had physical challenges. I had an open invitation to call her anytime, day or night, if I needed her. One morning, at five o'clock, I felt unable to escape the clutches of my biggest panic attack yet. I just could not cope having a child with severe brain damage, and that was that. I thought of Diane. Hesitantly, I dialed her number. Barely able to breathe, I told Diane, ?I can't take this anymore; I think I'm going insane.?

?Lisa,? she said, ?you are not going insane; you will recover. You can handle this. You will feel normal again ? even happy.?

?How do you know?? I asked, hoping she had a good, solid believable answer.

?Because I feel normal and happy again. God has given me the strength I needed to love my son just the way he is and move on with my life.? Diane continued, ?I once thought I was going insane, too. Unlike you, I did not have anyone telling me I'd feel normal again. But in time, God showed me I could handle my son's handicaps today, tomorrow, and even next year if necessary. You just feel this way because it's all still new, and you don't know how Elizabeth's going to develop her first year. The more you get to know Elizabeth, the joy she brings you will overshadow the anguish you feel over her condition. What you feel now is normal and it will eventually pass.?

I calmed down as Diane spoke. It eased my mind to hear that kind of confidence from someone who had been there and survived. When my panic subsided, I was able to get off the phone and go back to sleep.

Another time, with an anxiety attack coming on, I asked a church friend to pray. Her prayer against fear and doubt brought immediate relief. The anxiety attack vanished, and in its place, I felt peace.

Directly confronting my doubts and fears worked immediately that time, but usually they dissipated gradually and then only as I meditated on certain scriptures. God promises that faith comes by hearing his word. I once heard that if you feed your faith with God's word, your doubt will starve to death. That is so true. The more I focused on scripture verses, the more believable they were, and the less afraid I was of the disheartening circumstance.

It finally dawned on me to confess my unbelief to God and receive forgiveness and help. That's what the father of the epileptic boy did in the gospel story. When the father wondered if Jesus could heal his son, Jesus said, ?All things are possible to him who believes.?

The father replied, ?I believe; help my unbelief.? Jesus then healed the boy.

I could approach God for help when doubts assailed me, or when the stress of Elizabeth's condition became too great. This realization eventually became a shield from anxiety attacks. Ultimately, love freed me from fear. One day I was reading a booklet on overcoming fear, and the verse ?perfect love drives out fear? (1 John 4:18) caught my attention. I should love more perfectly. If I concentrated on loving Elizabeth and my family by tending to their needs, then I would not have so much occasion to dwell on Elizabeth's condition; fear would lose its fuel. Putting this biblical verse into practice took my mind off worry and doubt regarding Elizabeth's future. Instead, I concentrated on performing deeds of love. Fear lost its grip on my soul.

Love is far more important to God than great faith. ?If I have all faith, so as to remove mountains, but have not love, I am nothing.... Love bears all things, believes all things, hopes all things, endures all things.... So faith, hope, love abide, these three; but the greatest of these is love? (1 Corinthians 13:2, 7, 13 ). My love for God and Elizabeth would help me endure all things and hope all things.

Faith does not come naturally. In most cases, it is God who helps us endure until the end. Abraham and Sarah had their doubts about God ever giving them a child, yet God helped their faith through repeated promises. Peter failed to reach Jesus on the water. Jesus did not let him drown; he reached out his hand and caught Peter. Through his word and the comfort and prayers of others, Jesus stretched out his hand and caught me.

With God's help, I was determined to follow the example of May Lemke, a woman I had read about years before in The Reader's Digest. May adopted a little boy named Leslie who was blind, severely retarded, and completely crippled with cerebral palsy. For years she prayed and believed God would grant a miracle. She spent hours talking to Leslie, giving him physical therapy, and teaching him to enjoy music. When he was approximately seven, he moved his leg in the lake behind their house. By the time he turned sixteen, he could walk when aided, but was still unable to rise out of bed alone. Incredibly, late one night, he got out of bed, walked to the piano, and began playing like a genius. Amazingly, he could not control his hands to feed himself, yet he played the keyboard beautifully. Other motor skills steadily improved, and he eventually learned to feed himself, use the toilet, and began to speak. The persistence of May Lemke encouraged me to press on in faith.

Despite encouraging testimonies that increased my faith in expectation of a miracle, from time to time I thought maybe there was something hindering our prayers. Perhaps our sin was keeping God from healing Elizabeth. I imagined a list of sins that would prevent us from receiving God's help. At the top of the list was unforgiveness. I harbored much resentment towards discouraging doctors who said things like ?Elizabeth will never do this, and she'll never do that....? These were mean people whose words tormented me. I harbored the same sentiment towards well-meaning Christians who wanted me to consider it a fabulous spiritual experience to raise a child like Elizabeth. ?You must be really loved by God to have a child like her,? they said. These were easy words for them, and hard ones for me as I watched their healthy children doing cute things.

I needed God?s help to forgive those people. My bitterness demanded and influenced my thinking, over and over again. I knew it was wrong to be so bitter. I had to get rid of those ugly thoughts. Yet each time I saw those people, I replayed their words, reawakening my resentment. Still, if I did not forgive them, God would not forgive me.

At our church picnic I became aware of how much ground I had lost in the struggle to forgive others. The picnic grounds were teeming with happy families with healthy children. I saw parent after parent who at one time or another suggested that Elizabeth's condition was a blessing from God. These were the very people who said that I must accept Elizabeth the way she is and stop expecting God to change her. Elizabeth sat in a crippled lump in her stroller unable to participate while their children ran around playing games with one another. This miserable picnic rekindled loathing for those parents and their warped notion of blessings.

With my cup of bitterness running over, I saw a friend and shared my struggles with her. She promptly instructed me to forgive them. Furthermore, she said I needed to go a step further and ask God to bless them. She reminded me to love my enemies and bless them, as the gospel instructs. Yes, I needed to bless these people. Together my friend and I thanked God for these people and for their children. We also asked God to continue to prosper them with good health. I truly felt the weight of unforgiveness lift.

Understanding the benefits of forgiveness, and seeing that I was capable of doing it, I began practicing forgiveness towards everybody ? even the doctors and people who added to our pain with their sometimes insensitive remarks. But Elizabeth's condition did not change. Maybe there was something else hindering our prayers.

Then I read a Bible passage promising health to those who give freely to the poor. It had been a while since Jim and I had directly given money to someone less fortunate (although we were always faithful to give to our church who in turn gives a portion to the poor). Perhaps we had grown so focused on our own problems that we were neglecting the needs of others right in front of us. A few days later, a destitute-looking couple at a fast food restaurant caught Jim's and my eye. The woman made funny faces at Jacqueline in an effort to start her giggling. She later came over and gave Jacqueline a soda. Being reserved about approaching strangers, I told the lady ?No, thank you.? I immediately wished I had accepted it, however, because the woman's feelings were genuinely hurt.

Much to my surprise, I saw this same couple walking by our house a few days later. What were they doing there in our neighborhood? Their plastic bags stuffed with clothes made it obvious that they were homeless. It must be providence. Perhaps God sent these souls to give us a chance to give alms to the poor. I could not miss this opportunity to obey God. Before they got too far, I ran out with Elizabeth to greet them. I told them the Lord wanted me to give them some money. Seeing Elizabeth's condition, however, they told me I should keep the money for her expenses. I assured them God meant them to have it. When I handed the woman the money, she took it, knelt in my driveway, and with tears flowing, gave thanks to God. Her husband did the same. I asked them to pray for Elizabeth. After doing so, the woman pointed a bony forefinger at me and declared in an almost hypnotic, mesmerizing voice, ?Elizabeth will be fine. All things are possible for those who believe.? With that, the couple left.

Jim and I never saw this couple again. To this day I can't decide if these were just indigent people or angels in disguise. Nevertheless, I was inspired by the experience, by which I believed God assured us that no sin barred Elizabeth's healing, but if there were, he would be sure to let us know so we could correct it. God would allow us time to grant forgiveness and be forgiven.

 

.10.

 

Thankfulness

 

?Offer to God a sacrifice of thanksgiving...

and call upon me in the day of trouble;

I will deliver you, and you shall glorify me.?

Psalm 50:14-15

 

A turning point in my lengthy depression came the first time Elizabeth, at eight months old, suffered excruciating and relentless muscle spasms that continued for days. Occasional spasms were normal, but the severity of these spasms now told me that they were something different.

Our prayers for her immediate relief went unanswered. Her body jerked constantly with hardly any rest between times. Crying constantly, Elizabeth was obviously in great pain. Was her brain damage getting worse? Was she dying? I no longer cared that she was incapable of doing anything. I just wanted her to rest in my arms contentedly again.

Efforts to comfort Elizabeth's tortured body were fruitless. Her regular pediatrician was not available, and his back-up, unfamiliar with her case, felt she should visit the hospital. I called the hospital in Washington, D.C., which had been treating and testing Elizabeth from birth. Their initial assessment was that she was probably having seizures and to get her to the nearest emergency room. ?Oh God,? I prayed, ?I can't take another problem. Where are you??

As I watched Elizabeth thrash about on the hospital examining table, I again seriously doubted God's love for us. How could God let her endure this suffering? How could this ordeal possibly work for our good? Except perhaps for a slight fever, the doctors could find nothing wrong with Elizabeth. She was not having seizures; her jerking was in response to some kind of pain. Prescribing an antibiotic, the doctor wished us well and sent us home.

Elizabeth's pain and jerking continued at home. I phoned my friend Diane. She knew the heartache of watching her child Reid suffer pain.

?Why is God allowing this?? I cried, demanding an answer from her.

Diane responded calmly and simply, ?I just trust God, even though I don't understand why Reid's pain is allowed to continue.?

I wanted to trust God as Diane did. Questioning God's promise that he won't give us more than we can handle, I called my mom. I told her everything would be so much easier if I were not a Christian. Unbelievers don't wonder why God allows pain and suffering. People who do not believe in a God who loves the world are not frustrated by belief in miraculous intervention. If I were not a Christian, I would not be expecting anything and would therefore not suffer the disappointment of hope deferred.

My mother replied, ?If you didn't believe in God, then you'd have no hope at all.? Mom was right; hope was the only thing that got me out of bed each morning. Somehow, I had to hang on to it. I once read somewhere that you must never take away someone's hope; it might be all they have. Hope for God's merciful intervention was all I had.

Exhausted from fretting about Elizabeth's spasms, I headed upstairs to nap while Jim took care of the girls. A book on the power of praise lay on my bed. I hadn?t put it there. Perhaps it fell off the shelf above. As I flipped through it, the book opened to a page that commented on Job's inquiry of God ? why was God allowing him to suffer such mental and physical agony? As the creator of the universe, God and God?s plans, thoughts, and power were far above Job's comprehension. It was not for Job to judge God's actions. Struck by God's magnificence, he repented of his disrespect. Job then entrusted himself to God's care, and began praising God.

Like Job, I began praising God. I desperately needed his presence. I thanked God for every good thing that came to mind: his love, his righteousness, his power to save, his Word, sacrificing his Son Jesus so that I wouldn?t have to pay for my sins. I even thanked him for this trial, recalling the psalmist's words that ?it is good for me that I have been afflicted, that I might learn thy statutes? (119:71). I asked God to comfort us until he released Elizabeth from her tormenting spasms. Although I was still terribly upset by Elizabeth's pain, I felt the warmth of God's presence around me.

Muscle spasms interrupted Elizabeth's sleep all that night. The following day, I took her to see her regular pediatrician. He quickly diagnosed her as having a simple case of gastroenteritis. The medicine he prescribed eased her pain immediately.

Maintaining my faith in God and his promises is an on-going battle, but with his help, I am learning to persevere. I hope one day to be so steadfast that nothing will move me ? no matter what trouble comes. Abraham and Sarah had their share of doubts, but God commended them for their faith anyway. That?s comforting.

Recovered from her bout of gastroenteritis, Elizabeth became her cheerful self again. For the first time, I enjoyed a stretch of days where Elizabeth's delayed development did not overwhelm me with sadness. My soul rejoiced. Before Jesus raised Jairus' daughter from the dead, he told her family that she was not dead, just resting. When tempted to become depressed over Elizabeth's condition, I reminded myself that her present disabilities did not mean she would never excel, develop, and overcome her challenges. She was just resting. Each child develops at a different rate ? Elizabeth's rate would be a little different from most!

Rather than fretting over what Elizabeth lacked, I devoted more time to appreciating the lovely things she possessed. She was quick to smile and slow to complain. So many things delighted her: the wind in her face, a bath with her sister, kisses from her family, and ice cream. She laughed hysterically when tickled or swung through the air. Unlike other siblings, Jacqueline and Elizabeth could not sit around and pass toys back and forth, or mill around the backyard together, but they enjoyed snuggling while watching a movie or listening to a story. Jacqueline's endless ballet performances in the living room were spectacular for Elizabeth. The more Jacqueline leaped, the better. And, of course, Jacqueline recognized what a great audience she had in Elizabeth. Elizabeth was the only one who would stay put until the end!

One day, Diane gave me Reid's old crawler. It was a cart designed by Reid's father. I leaned Elizabeth's arms and chest over the cart and watched. Within minutes she kicked her legs and pushed off. Elizabeth could move! Her face radiated with happiness and pride. I was as happy as she was for her newfound skill. Life was truly good.

December 18th, Elizabeth's birthday, soon approached. Her birthday marked the anniversary of the worst day of my life. Diane, remembering Elizabeth's birthday and my vulnerability to depression, phoned and said, ?Think of Elizabeth's birthday as a happy time to rejoice with her. Don't focus on yourself and how carefree you used to be.? I needed that.

We had much to celebrate on Elizabeth's first birthday. Foremost, Elizabeth had survived her first year. Despite limitations, she was the happiest person Jim and I knew. When we looked upon her, we no longer saw all her ?limitations;? all we saw was her pure, cheerful heart. We could not imagine being a happy family without her. I delighted in cuddling and kissing her, not because I was too depressed to do anything else, but because God gave me the unconditional love for her that I had prayed for so desperately.

Although Elizabeth's inability to walk still disappointed me, I rejoiced when she finally gained the strength to stand momentarily if supported. She occasionally lifted her head when I put her on her stomach ? also demonstrating her increased strength. Month after month, I quoted Psalm 3:3 to Elizabeth, about how the Lord is the ?lifter of my head.? When she was eleven months old, the Lord at last lifted her head. She could only hold it high for a moment, but it was a thrilling victory over the paralyzing prognosis of a year earlier.

There was another reason to celebrate ? I had survived! Now I knew firsthand that ?I can do all things in him who strengthens me? (Philippians 4:13). Incredibly, I knew happiness once again. I had honestly considered happiness a thing of the past. Although I battled sadness over Elizabeth's inability to play with her birthday presents, I began to feel normal, at least a little. I praised God for getting me through this year of walking through the valley of the shadow of death.

Elizabeth's therapist told me not to concern myself with Elizabeth's developmental level ? which, sadly, she put at only two months ? but to look at all the improvements she had achieved during this first year. Her arms moved slightly and she was more able to follow brightly colored toys with her eyes. Given the condition of her brain, these new abilities held out promise to us. So ended Elizabeth's first year of life. I genuinely believed the worst was behind us and the next year was bound to be better.

 

PART III

 

REBUILDING FAMILY LIFE:

THE SECOND AND THIRD YEARS

 

.11.

 

Writing

 

?The Lord is near to the broken hearted,

and saves the crushed in spirit.?

Psalm 34:18

 

It was over ten years before, during my brief stint as a high school newspaper reporter, that I first thought of becoming a writer. I read a book on how it was done, scrolled a sheet of paper down into my father's old typewriter, placed my fingers on the keys, and waited. But I couldn?t think of a thing to say! So ended my career as a famous author.

Creative writing never crossed my mind again ? until Elizabeth?s birth. It all started when I began keeping a journal. It became a repository of my darkest and bleakest thoughts. I also recorded scriptures that spoke to my troubled heart. I never told anyone how distressing their questions were about me and Elizabeth, but I told my journal. Concerned friends would call and ask, ?Is she holding her head up? Is she playing with toys? Is she improving?? It hurt to have to answer ?no,? and this kind of recurring questioning kindled bitter thoughts that God was not doing anything for her. Friends' sad responses accentuated the severity of Elizabeth's condition. Here I was boldly proclaiming God's promises, encouraging people to believe with us, yet Elizabeth was not really getting any better.

One day I recorded in my journal, ?This morning I woke up depressed because no matter how many new things Elizabeth does, she still seems to just lie there most of the time. I get discouraged and am afraid to get too excited by her little spurts of activity. Maybe the reason why I get distressed over people's worry and anxiety over Elizabeth is that it brings out my own anxiety ? which I then try to suppress. I want to dwell on the idea that she will be fine, but her current development indicates otherwise.?

Any stares of strangers I to easily interpreted to say, ?You must be a disgusting person to have a child like that? or ?How could you take a child like that out in public?? Their stares also gave me a peculiar feeling that it was foolish to believe God was with us. Often, especially during the first year, certain thoughts were so dark I could not even bear to put them on paper. There was one stark thought that I never disclosed to Jim or my journal: ?It would be so much easier if Elizabeth just died in her sleep.? What kind of mother would wish that? Many magazine story titles read, ?A Parent's Worst Nightmare.? These stories often detail how a child had died. Yet here I was, actually wishing for a ?parent's worst nightmare.? Some stories about a child sustaining a brain injury, however, concluded that the possibility the child would live was worse than death. I did not want to think this way. Jim certainly did not. What was wrong with me? If Elizabeth died, he and Jacqueline would be devastated. Jim's darkest thoughts were ?What if Elizabeth dies?? Mine were ?What if she lives??

One mother I read of would sometimes imagine drowning her young handicapped daughter when giving her a bath. Her husband was shocked when he became aware of her secret wish. Although I never imagined myself actually doing this horrible kind of deed, I could relate to this mother's agony. At times it seemed like only my death ? or Elizabeth's ? could release me from the life-long care and heartache in store for me if God did not intervene in Elizabeth's life.

Despite my temptation to entertain the benefits of Elizabeth's death, I never wanted others to have similar thoughts about my daughter. I hated it when I sensed people thinking that way, which is what I thought when people asked questions like, ?Isn't Jacqueline's childhood affected by all the attention Elizabeth receives? Doesn't Elizabeth's care negatively affect your marriage? How does Jim feel about her?? I became angry as I imagined Elizabeth's funeral. People would quietly say behind my back, ?It's all for the best. She was such a burden to them, you know.? I became even more upset when I imagined people actually saying that to my face. I took measures to quell the thoughts of others that we would be better off without Elizabeth. I rarely told people of any medical crisis, of her lifelong prognosis, of the many desperate and prayerful nights we spent keeping her alive.

I controlled what people knew about Elizabeth through form letters. I wrote many letters sharing improvements she made, and encouraged people to keep up hope for her full recovery. I needed my family and friends to stand with us in prayer, to realize she was indeed a sweet and lovable little child. Their pity, if expressed to us, simply dragged us down. Through my letters, I wanted people to embrace Elizabeth, not resent her. My letters were also a way to record the lighter side of our lives. In time, my thoughts as well as my letters became more upbeat, an indication that I was less consumed by the enormity of Elizabeth's affliction. My life was reemerging and moving forward. There was much more in our day-to-day lives than ?the problem.? Writing about our family adventures and misadventures made me laugh again. And laughing felt good!

Elizabeth benefited from my writing as well. She often sat on my lap while I typed at my computer. She smiled as my arms made gentle movements about the keyboard. She got a kick out of watching the changes that took place on the screen. If Elizabeth could read, she would discover that her infirmities were not the only things troubling me. No longer in constant agony over Elizabeth's condition, the time had come to tackle other concerns. Weight loss was at the top of my list. I have always had to watch my weight, but after Elizabeth's birth, I paid little attention to it ? except perhaps to watch it go up. Sometimes eating a bag of cookies was my only pleasure. I was more concerned with surviving the day than with my expanding waistline.

 

.12.

 

The Stares

 

?Surely mockers surround me;

my eyes must dwell on their hostility.?

Job 17:2

 

Elizabeth's condition became more obvious as she grew bigger. She still could not hold up her head for an extended time. Her body was the size of a one year old, but that was the only thing about her that indicated her age. I still had to cradle her in my arms like a newborn. Her torso and neck were limp and she barely moved her stiff, drawn-in limbs. Her arm and shoulder muscles were too tight to allow her to reach toys. I remember being frustrated when Jacqueline, at an early age, would grab at everything in sight ? especially my dangling earrings. How I wished now to feel that familiar painful tug from Elizabeth.

New situations in public with Elizabeth were particularly painful during her toddler period because she was not ?toddling.? When Elizabeth was an infant, secured in her stroller or cradled in my arms, it was not immediately apparent to strangers that she was not normal. She simply looked like a baby with a funny-shaped head. People assumed she was much younger than she really was. Strangers love babies, and to be friendly, often question the babies? moms. I came to dread the inevitable ?How old is she?? question. When told, people's smiles vanished, as they tried to figure out what was wrong with her. One lady concluded that Elizabeth's poor development confirmed that her own child was a genius. She proudly held her son up so I could see for myself how much more advanced he was, even though much younger than Elizabeth. When hearing Elizabeth?s age or looking closely, some would turn away in disgust and murmur to their companions, ?Something's wrong with that kid.?

My anguish over the stares diminished over time. I went from wanting to die, wanting to hide her, to calling those who stared at her horrible names in my mind, to wanting to slap the starers in the face, to wanting to ask them, ?What?s your problem?? Finally, my attitude reached the plateau where I no longer cared about what other people thought.

Jim confessed that he hated the stares, too. ?I think she's so beautiful that it hurts to realize others think she looks `different.' Sometimes I feel like saying, `Don't you know its rude to stare?' I just wish I could take her out in public and blend in. I hate standing out.?

Diane Jones told me that when a person stares too long at her son, she says, ?My son's name is Reid. Would you like to meet him?? Sometimes the starer is happy to be introduced. Diane knows it is her job to make others feel comfortable around her son. She extends to them the grace they need, for she remembers well how uncomfortable she used to feel around children who are disabled.

Once I did decide to give Diane's noble approach a try on a particular family outing. Elizabeth and I were sitting on a blanket at an outdoor concert while Jim and Jacqueline were off somewhere. Elizabeth danced in her little way while I held her up. A child about six-years-old approached the edge of our blanket and stood still, mouth gaping, staring at Elizabeth. Her expression seemed to say, ?Ew, gross.? Restraining my slap-?em-in-the-face impulse, I thought of Diane and said, ?Would you like to meet my daughter, Elizabeth??

The girl shook her head ?no? and ran off. Well, that's one way of getting rid of rude gawkers. I know I should be more understanding, but rude children seem to upset me the most. Not only do I have to face the fact Elizabeth cannot function like them; I have to deal with their taunts. Sometimes children walk up to her and whisper to one another. One group of girls followed us around during a trip to the zoo so they could get a better look. One boy pointed to Elizabeth and yelled, ?Dad, look at the kid.?

Sometimes, much to my shame, I read the face of a starer totally wrong. Once a young child in Jacqueline's school stood staring at Elizabeth for a long time while she sat in her stroller. I tried not to care, but my irritation mounted and the ?what's your problem?? question kept entering my mind. Finally the girl spoke, ?She is so cute. Can I touch her??

?Oh God,? I prayed. ?Help me believe the best about people.?

And I often did see the best. Particularly from people who may be considered ?down on their luck.? I?ll never forget pushing Elizabeth through a fair past the carnival games. One young man, covered in tattoos and having the look of someone given in to alcoholism, ran from behind the game he was operating to catch up to me. ?Please,? he said, handing me a pretty stuffed bear from his inventory, ?please give this as a gift to your daughter.?

Sometimes, however, I encountered people who did not show their best. That was made obviously clear on one trip to the mall. Jacqueline, Elizabeth, and I were finishing a pleasant lunch in a food court, when a woman approached and asked, ?Is your daughter retarded??

Stunned by her intrusion into our happy little afternoon, I replied as kindly as I could, ?Well, we don't like to call her that.?

?She looks retarded,? she declared and walked off.

Not sure how to respond, I called after her, ?Thank you.?

Finding a bench, I sat down to collect myself. I was surprised that I did not cry at the remark that would have at one time crushed me. I was not even very angry. ?Wow, God,? I thought, ?You have really brought me a long way not to despair over that little exchange.? I decided, however, that I might really begin to think evil thoughts about that lady so I figured it would be best to protect my heart beforehand.

?Jacqueline, God says to pray for your enemies. Let?s pray for that lady, so I'm not tempted to be bitter towards her.?

?Mom, maybe she has a problem that we should pray for.?

?I doubt it, she looks normal.? She appeared intelligent and wore a nice tailored business suit.

Suddenly I heard a commotion behind me. Several people, including a policeman, argued loudly. At the center of the turmoil was the lady. When the lady stomped off, the others walked away. I just had to find out what happened.

?Excuse me, officer, can you tell me what was going on with that women? I ask because she said unkind things about my daughter.?

?Don't pay any attention to her. She's a problem here every day at lunch time. She comes into the food court and shouts insults at every one. Today she sat in the parking garage and blared the horn for half an hour.?

?Jacqueline, you were right.? I said as we returned to our bench. We prayed that God would ease her troubled soul, and then went on to enjoy the rest of the day.

Some encounters with strangers could be very pleasant. One Sunday, a woman in my church whom I did not know approached and asked, ?What's your daughter's name??

?Elizabeth,? I said. My stomach tightened as I waited for her to ask, ?Does she know what's going on?? or ?You must be a very special mother.?

?Well,? she replied, ?I just wanted you to know how beautiful I think her hair is.?

Stunned, I said, ?Oh, thank you.? How thrilling to hear something kind and unrelated to Elizabeth's other obvious characteristics.

Another major misread came when I was in a small prayer meeting in somebody's home. An older woman I had never met before kept staring, making me feel very uncomfortable. I was not thinking very pleasant thoughts about that lady. I had already come to the conclusion that most of the older women were thinking, ?In my generation, mothers who had kids like this hid them.?

Finally the woman spoke to me with tears in her eyes. ?I've been looking at your beautiful daughter. She reminds me so much of my own sweet child who died when she was only two.?

Now I had tears in my eyes. Yes, I was truly fortunate Elizabeth had lived, despite some of the heartache. I hugged Elizabeth close, thanking God for sparing her life and letting me enjoy her for longer than two years.

I too could be called guilty of staring. While strolling along the boardwalk early one evening, I saw an elderly couple sitting on a bench watching the sun go down. An empty wheelchair was parked nearby and their large, handicapped son was sitting propped up between them. They quietly gazed at the beauty unfolding before them while I quietly gazed at them. If the parents had noticed me staring, I wonder if they would have thought me rude. Or perhaps their age and experience had already taught them that to others, their little family was inspiring.

People have said similar things to me. ?I love watching the way your family cuddles and kisses Elizabeth. You all look so happy. And its obvious she knows she's loved.? One lady whispered to me in the middle of a women's church meeting, ?I noticed you didn't bring Elizabeth with you today and I thought that's great ? you really need a break. But then I felt as if God reminded me, `But don't you notice how happy she is holding and caring for Elizabeth? She will be rewarded one day for the love she has given her.' I just wanted you to know that. I do love watching you with your daughter.?

One thing I notice about families like mine is that we rarely approach one another in public. We do not say ?I notice you have a child like mine.? We are tired of people noticing we have a child just like someone else they know. With good intentions people approach me in church and say things like, ?I want you to meet my friend, so and so, who's visiting today, because you two have so much in common ? you both have a child with disabilities.? Usually ?so and so? and I just stand around feeling awkward. Most of us want to feel normal ? we do not want to talk about ?the problem.? We would much rather talk about other things, but there are exceptions to this rule. Sometimes I welcome talking with someone else going through the same thing ? it's nice not to feel alone. But usually I'd rather initiate the conversation than have it set up by a third party.

Late one evening I had trouble falling asleep. I had many things on my mind. ?Why did it have to be my child who was born like this?? ?How come this stuff never happens to movie stars?? I often see pictures of glamorous stars on the covers of grocery store magazines with their beautiful, healthy children. I flipped on the TV. as a way to deal with my insomnia. Julie Newmar, ?Cat Woman? from the original Batman series, was being interviewed. ?So you have a son,? the interviewer said. ?Tell me about him.?

A picture flashed on the screen. Her son looked to be a teenager with Down syndrome. Ms. Newmar mentioned his condition, but said he seemed perfect to her. He travels all over with her and is a great companion. So movie stars do go through what I go through. Somehow I felt less alone. Satisfied that I was not the only one in the world with a child with disabilities, I turned off the TV and fell asleep.

 

.13.

 

Growing Bigger

 

?Consider the lilies, how they grow; they neither toil nor spin;

yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass which is alive in the field today and tomorrow is thrown into the oven, how much more will he clothe you, O men of little faith!?

Luke 12:27-29

 

During Elizabeth's second year, feelings of happiness became more the norm than the exception. We were a regular family again in the sense that we did not have the constant feeling that something was ?wrong.? We experienced life the way ?normal? people do, in increasing measure. We were a family with two lovely girls who went places or sat around and cuddled together. Many people have babies or a child in their home with the needs of an infant. That my child could remain in that infant stage for an abnormally long time no longer dogged my thoughts. However, my sense of happiness and normalcy remained frail. Depression and anxiety hovered close by, ready to attack if I let them.

I often wondered what Elizabeth thought about. Her inability to visually focus on her surroundings made it difficult to tell what was going on in her mind. She showed little reaction to people who spoke to her. Only rarely would she turn her head towards the speaker. My wonder led to many related questions. Was head-turning too difficult? Couldn't her brain process what she saw? Didn't she care to pay attention? Responsive or not, Jim and I knew she was in there ? and it hurt when people doubted it. People casually asked the painful question, ?Does she know what's going on?? Clearly they did not think so, or they wouldn't have asked the question.

No matter what Elizabeth's I.Q. was, we knew it was important to talk to her and tell her about life ? about God, about her family, about ?this little piggy going to market,? and even about her bellybutton. Although it can be unsettling or boring to talk to someone who does not respond with words or eye contact ? we knew through Elizabeth's smiles, that she appreciated it. Either in this life or the next, one day Elizabeth will talk to me. That belief thrills me. And if Elizabeth never speaks while on this earth, I know my efforts to communicate with her will not be a waste of my time or love. Giving affectionate attention to someone who is the ?least of these my brethren? is pleasing to God. Rewards are promised to those who do it.

When taking Jacqueline to her various dancing and swimming lessons, I faced the awkwardness of other mothers realizing Elizabeth's differences. If not overly sad about her development at the moment, I could usually explain it with a smile. My smiles would put everyone at ease. If my heart was aching, however, I failed to make the mothers comfortable.

At Jacqueline's first swimming lesson, I fought the urge to cry. While all the preschoolers were in the pool, the mothers went around asking each other how old their newest baby was and marveling at how precious they all were. I dreaded my turn. Elizabeth rested quietly and motionless in my arms, like a newborn. With all eyes on me, I told them Elizabeth was eighteen months old. The painful sound of silence ensued. To get them to stop staring while they figured out what was wrong with her, I told them about her condition, but I was unable to put any cheerfulness in my voice. I clearly had not put them at ease. They found it less stressful to resume their conversations with one another and to ignore me. I begged God to console me so I could get through Jacqueline's lesson without falling apart.

One time, moments after such a time, a woman approached with friendly and cheerful questions about Elizabeth. ?What's your daughter's name?? she asked. ?Where did she get her pretty blue eyes??

I immediately warmed up to her kindness and interest. The woman continued, ?Oh, I believe in divine healing and will gladly pray for Elizabeth. And I want you to know that when I pray for someone, I really expect them to get well.?

That lady lifted my spirits. I thanked God for sending her over to me.

In early February of Elizabeth's second year, I found myself weary again from seeing such minute results despite Elizabeth's therapy and all my praying. Would God ever perform a miracle for Elizabeth? Does he even do miracles anymore? Afraid that doubt would again overtake me, I asked God again to confirm his promise to me.

Within a few days of this prayer, on the Sunday before Valentine's Day, Jim gave me a red rose that had yet to bloom fully. It had barely opened. I placed it in a vase on the kitchen table. By Monday morning the head of the rose had drooped completely over. The stem, doubled over, was damaged. The head of the rose dangled lifelessly. It would die before ever blossoming. Jacqueline saw my sadness through my blank stare at the rose and said, ?Why don't we ask God to heal it??

I replied, ?I don't see why God would heal a dead rose.?

My discouragement did not deter Jacqueline and she prayed anyway. Later that evening, the rose looked even worse. So, to preserve God's reputation and to protect Jacqueline from disappointment, I told her, ?God doesn't promise to heal dead roses. That is why he didn't do it.? Jacqueline listened but went about seemingly unconcerned and with no sign of disappointment. That same night, she came down with a terrible earache and a fever. Sometime later, after I prayed for her, she was no better. She said, ?Don't worry, God doesn't always heal right away. I'll be better in the morning.? Fine, I thought, but I planned to take her to the doctor in the morning.

Entering the kitchen the next morning, I immediately caught sight of the rose...it was standing upright and blooming beautifully. ?Jacqueline,? I yelled. ?God healed the rose.?

Jacqueline bounded out of her bedroom and down the stairs exclaiming, ?And Mommy, my ear doesn't hurt anymore. God healed me and the rose. I told you he would!?

I said to Jacqueline, ?I am so sorry I tried to put doubt in your heart. Just think, I could have persuaded you to give up your prayers.?

She replied, ?That's okay, Mommy, because Jesus put trust and joy in my heart instead.? God had honored her child-like faith.

I pressed the rose, framed it and hung it on the wall. I look at it from time-to-time as a reminder of God's love, power and care. According to Jim, Elizabeth is like that rose. She was born wilted, but will one day blossom beautifully.

Perhaps that flower also inspired a story that Jacqueline wrote in first grade:

 

The Flower

Long, long ago, there was a town named Aven Rood. At the end of Main Street, there was a little flower shop with very many beautiful flowers. Some were roses, some were irises. One of the roses was as wilted as a dead leaf. It was very sad because all the time people would say, ?That?s an ugly flower you?ve got there,? and that would hurt the rose?s feelings.

One day, a little girl came into the flower shop. She stared at the flower. She wanted to water it and care for it. She asked the man at the counter, ?How much money is that flower??

?Money!? exclaimed the man. ?It?s free for you!?

?Oh, thank you,? she replied happily.

The girl took it home and planted it in her garden. And it was her favorite flower.

 

At the end of Elizabeth's second summer, we faced for the first time the matter of school and Elizabeth's education and therapy. How could I put my baby in school at such a young age? I had resisted enrolling her in a special school because between her therapist and me, I thought her therapy needs were being met. The county special educators, however, insisted that Elizabeth's intense therapy regimen required that she be enrolled in one of their programs. Jim left the decision to me since I was the one working with her all day. With the end of enrollment approaching, I agreed, thinking that perhaps I was supposed to help the other parents in the school learn how to cope.

At the school's first parent meeting, however, it became obvious that I was the one who needed help. The other parents looked on gratefully and cheerfully as a county representative described how our children with mental retardation and other disabilities would be starting their education at this school and working their way into adulthood through the county's network of various programs. Jim and I sat blank faced. I couldn't take it. How could God allow Elizabeth to even need this system or to be referred to as ?handicapped? or ?retarded? (labels I hated as they sounded so negative ? so permanent). These strangers, although well-meaning, matter-of-factly discussed how Elizabeth would spend her whole life in the system.

?Oh God,? I prayed, ?why haven't you delivered Elizabeth from all this? This school is for other unfortunate children ? not one of mine.? Jim felt the same way. We both left the meeting very depressed.

For the first few days of school, I cried bitterly as I handed Elizabeth to the school bus aide on the bus that came to pick her up. My poor daughter. Going off to school on one of ?those? buses to one of ?those? schools. Elizabeth looked so helpless and innocent. And she was helpless ? as helpless as any two-month-old baby. She barely had hair covering her head, and I was sending her off into the care of strangers.

I missed Elizabeth terribly through the school day. Apparently she missed me too. Her teachers said she rarely smiled and slept often. Sleeping in school, I reasoned, was her way of avoiding unpleasantness or boredom.

At first I felt guilty for sending her away for the day, but eventually I grew accustomed to it. I even began enjoying the freedom to run errands and clean the house without having to worry about stimulating or exercising her all day. Elizabeth's bus drivers, aides, and teachers were kind and positive people. They always greeted her cheerfully. Her school therapist was a Christian, and she prayed for Elizabeth. Elizabeth adjusted at school and soon reverted to her old happy self again. I thanked God now for the break Elizabeth's school provided me, and that she, too, was getting used to the new routine.

I often went to Elizabeth's class to check her progress and to talk to her teachers. It hurt to see the other children there. One in particular, Shelly, was a ward of the state. She lived in a hospital and was transported to the school with the other kids. She sat uncomfortably in her specially designed wheelchair. Her head hung limply as she struggled to breathe through a tracheotomy hole in her neck. Mucus spewed in and out of the hole with each breath. It needed constant suctioning because the mucus seriously impeded her respiration. She ?ate? through a G-tube in her stomach. When I spoke to her, she did not respond in any way. My heart went out to Shelly and the parents who could not, or would not, take care of her. Why did I keep forgetting to be grateful that Elizabeth's infirmities were not as severe, and that she had a family who loved her?

I prayed God would heal Shelly as well.

It was a delightful day when Elizabeth brought home her first finger painting. Her teacher dipped Elizabeth's curled fingers into the paint and moved her arms around over the paper. It thrilled me to think how much pleasure that touch and movement must have given Elizabeth. I hung it proudly on the refrigerator door.

 

Dear Family and Friends, September 26, 1991

I've begun to adjust to both my girls being in school. Elizabeth's school sends her weekly schedule home on the bus for me to see. This week she has horseback riding, sponge painting, lotion rubdowns, and hot tub. Her life style has certainly improved. Jacqueline is jealous that Elizabeth gets to ride a bus to school, while she doesn't. She also feels cheated that she can't attend Elizabeth's school too. I keep trying to tell her she's lucky, but it's hard for her to appreciate that when she sees her sister go off on that cute little bus, and hears about her going horseback riding.

Love,

Lisa and Jim

 

.14.

 

We Are a Family

 

?Are not two sparrows sold for a penny?

And not one of them will fall to the ground without your Father's will....

Fear not therefore; you are of more value than many sparrows.?

Matthew 10:29, 31

 

Everything in life seemed to stabilize that fall. Surprisingly, I was getting so used to Elizabeth's condition, that I often forgot I had a reason to be sad. Perhaps, I began to think, I don't have a reason to be sad. Elizabeth was happy, so we were happy.

 

.15.

 

Healing Meetings

 

?And he healed many who were sick with various diseases?

Mark 1:34

 

Elizabeth developed little that second year. She showed no ability to talk, sing, or even hum. She could not roll over or sit up. And she still could not pick up a toy. Yet, I fended off devastating bouts of depression. Despite the fact that Elizabeth could not function at her peers' level, she was rich in little friends. And for that, I was very thankful. Little children did not pity and avoid Elizabeth. Once curiosity about her was satisfied, they enjoyed her company. They related to her on terms very agreeable to Elizabeth. Because she would smile when touched, they would stroke her cheek. Because she would smile when held, they would hold her.

I will never forget Rachel, Elizabeth's first pre-school friend. Rachel was quite taken with her and always wanted to hold her. She did not seem to notice Elizabeth's limitations. The only thing that troubled Rachel were the snoring noises Elizabeth made when breathing. After she discussed her concern with me, she went off alone to speak to God about healing Elizabeth's ?booger? problem.

In honor of Rachel's fourth birthday, she asked her parents if Elizabeth could come out for ice cream and celebrate with her. Jesus said when you give a party ?invite the poor, the maimed, the lame, the blind, and you will be blessed, because they cannot repay you. You will be repaid at the resurrection of the just? (Luke 14:13-14). When Rachel asked if Elizabeth could go along, I was overwhelmed with gratitude. Elizabeth had never received an invitation before.

Rachel was the daughter of friends who did much to raise my spirits over Elizabeth. Several years earlier, one of their children died from a genetic immune deficiency. They too had known paralyzing grief. And pain, and fear. God had apparently healed Rachel of the same problem ? at least for awhile.

Rachel's parents often supported us in prayer for Elizabeth's healing. By the time Elizabeth turned two, we had also taken her to several healing meetings. At first I was filled with hope, but then it became increasingly difficult when time and again we walked away with nothing changed. The disappointment was sometimes overpowering. Jim and I resolved to attend healing meetings no longer, unless we felt the Lord's prompting. People who have been healed at these meetings often testify the Lord assured them this was their day to receive a miracle. Jim and I knew God had heard our prayers from the start. He did not need to answer them through a particular person at a particular meeting.

Months before Elizabeth's birthday, some friends suggested I take Elizabeth to Buffalo, New York, to see a minister gifted in the healing ministry. Supposedly many healings occurred during his services. Jim and I felt Elizabeth should go to the two-day miracle crusade. I took her myself.

I asked God what I was to be looking for at this crusade. Immediately a Bible verse came to mind: ?Seek first the Kingdom of God and His righteousness, and all these things shall be added to you.? I was not even supposed to seek her healing? After all the effort and expense of getting there? Oh well, God must have something very important for me to learn. Of course I hoped that God would throw in Elizabeth's healing as well.

The wait in the line for the service was long. About five thousand people packed the auditorium. I saw heart wrenching infirmities all around me. People lay in the aisles, skinny, looking half dead with AIDs or cancer. Children sat strapped into wheelchairs, many with even their heads secured. Others were hooked to machines that barely kept them alive. Parents, many in obvious anguish, hovered anxiously over their children, praying that this was their day for a miracle. It was a convention of the desperate.

One mother of a blind and limp five-year-old girl acted jealous seeing Elizabeth's smiles and kicks of delight. ?I'd do anything to see my daughter smile,? the woman told me. ?She doesn't even know us. I know it sounds terrible, but I don't even love her anymore. I think she'd be better off in an institution. It's hard to believe she'll be any different after this service. I've been to many; there is never any change. I used to believe so strongly she'd recover. I can't take the disappointment anymore.?

I felt scared. Time had made her lose all hope ? in God and for her daughter. I wanted to say something encouraging, but felt lost for words. Perhaps my journey with Elizabeth was much easier because she could communicate with me through her smiles. I wanted to tell that mother that God is faithful and could restore her love for her daughter, but I felt unqualified to say so. I had not been worn down by years of unanswered prayers as she had. I knew God's word was true, but I realized afresh how carefully I would need to guard my heart against bitterness if my months of trial turned into years. All I could do was silently pray that God would restore her hope.

The woman's husband, on the other hand, showed nothing but adoration for his daughter, judging by the way he tenderly caressed her as he held her upon his lap. His unconditional love was so deep, so beautiful. I knew he hurt also, but I could tell he would never stop believing that God had good intentions towards his daughter. For a moment he studied Elizabeth's happy face. I sensed the longing for his own daughter to experience such pleasure. He said simply of Elizabeth, ?She's beautiful.?

?Oh God,? I confessed as soon as I left them. ?I'm sorry I've not spent more time praising you for all you have done for Elizabeth. Thank you for giving her such a joyful spirit. Thank you for allowing her to see and hear and live without machines. Thank you for letting us see some improvements in her alertness. Thank you that she has already outdone the doctor's expectations of her. I have taken that for granted too often. Like the Israelites who grew unappreciative of the manna you blessed them with, I have lost my gratefulness for the `manna' you have given us. Please forgive me.? I was going to start the meeting being thankful to God for the ?manna? of Elizabeth?s general good health and happiness.

When the service began, the minister kept repeating the scripture ?Seek first the Kingdom of God.? There it was again. Apparently God was confirming what He had told me before I arrived. I had to stop focusing on Elizabeth's healing and make it my aim to seek God and his kingdom first. The minister announced that the Holy Spirit was moving and healing people. He requested those who received healing to come up on stage and testify. Many were overcome by the Spirit and fell down when he placed his hands on them. One boy testified that he had been healed of muscular dystrophy. A doctor came up to examine him with the boy's father, delirious with joy, standing nearby. Other children were healed of deafness. A few older people abandoned their wheelchairs and walked forward to the stage.

Elizabeth, however, and all the other children like her, remained noticeably the same. One older woman I befriended, Olga, was not healed either. Determined to be free of her arthritis, she sneaked past the men keeping people off the stage so she could get the minister to lay hands on her. He laid hands on her several times, but nothing happened. Olga admitted she was very disappointed. ?But if I dream tonight that I'll be healed, then I will be at tomorrow's service.? And Olga did have a dream that night.

The next day, the minister announced at the morning service that it would not be a healing service, but a teaching service instead. ?Poor Olga,? I thought. This was the last service she could attend before returning to her home in Canada. When the service ended, the minister called all those who were pastors to come up for prayer. Astonished, I watched as Olga bolted forward. She was no more a pastor than I was. Before long, she was lying on her back on stage, obviously overwhelmed by the power of the Spirit. She lay there for about half an hour. When she returned to her seat, she was crying with joy. Earlier she had been crying in pain because the arthritis was really bothering her that morning. ?I was slain in the Spirit and God healed me.?

Moments later, the minister said, ?Some of you who came forward didn't look like pastors to me ? but hey, God blessed you anyway.? He sure did. I saw first hand a case of God blessing the determined, the one who was willing to overcome all obstacles. It reminded me of Jacob deceptively stealing his older brother Esau?s blessing from his father, Isaac. And I thought of those brave people who ripped a hole in the roof in order to lower their crippled friend down for Jesus to heal. Olga had waited many years to receive her healing, but this time, her persistence paid off.

For whatever reason, not all who are prayed for are healed. This truth came to us in a hard way ? and I was not ready for the crushing disappointment. Tragically, two weeks before Elizabeth's second birthday, Rachel, her little friend who invited her out for ice cream, died. She contracted a virus she could not fight. When she died, our family was devastated, and my faith was tested once again.

.16.

The Test

 

?In this you rejoice, though now for a little while you may have to suffer various trials, so that the genuineness of your faith, more precious than gold which though is perishable is tested by fire, may redound to praise and glory and honor at the revelation of Jesus Christ.?

1 Peter 1:6-7

 

New Year's Eve, December 31, 1991. Jim was in bed and about to drift off to sleep when he thought he heard God say clearly, ?Your faith will be tested this coming year like never before.?

Alarmed when he told me, I asked Jim, ?What can that mean? I hate having my faith tested. Haven't we been tested enough?? How many faith-testing events did we need?

Jim, however, was not alarmed. He felt that God was lovingly assuring him of divine deliverance from some future disaster. I was not to worry, Jim said. The message was for him, not me. I knew better. If Jim's faith were going to be tested, mine would be as well. I hoped this ?message? was nothing but a product of Jim's imagination. I forgot about the pending ?test? as the first days of the New Year flew by.

One afternoon I took the girls and Jacqueline's friend Dana to McDonald's. My heart was still heavy with grief over Rachel's death the previous month, as well as that of an eighteen-month-old boy in our church who died unexpectedly in his sleep. We sat next to three women and their small children. We had just finished eating when suddenly one of the mothers grabbed her lifeless son off the floor. The women began screaming hysterically that he was not breathing and cried for someone who knew CPR. I joined in on the hysteria and started screaming out as well. All attention was on us, but everyone remained motionless at their tables, staring in silent shock. ?Oh God,? I prayed, ?not another dead child ? I can't take it anymore.? Though previously trained, I couldn't remember how to do CPR because I was so hysterical.

With no one stepping up to the rescue, I told the mother to hand the boy over to me. He was very blue and strange looking ? like the two dead children I had seen only the month before. Forgetting that I should have checked for a pulse before determining the course of action to take, I cried out to God for help as I laid him over one arm and put heavy pressure on his stomach just below his rib cage. The Heimlich maneuver was the only thing I could think of. A scared Jacqueline and Dana prayed for him. In a moment he spit up a large volume of saliva and the mother saw that he was breathing again. She took him from me and laid him on the table. He seemed groggy and went to sleep. Had I injured him?

The ambulance arrived and the paramedic said the boy appeared fine. He had probably suffered a seizure as indicated by his unconsciousness, wet pants, and heavy salivation. Apparently he had choked on his saliva or something else in his mouth when his seizure began. He was conscious and looked much better when the ambulance left for the hospital. Elizabeth's pediatrician later told me I probably saved his life. I was so grateful to God to be a part of something good.

Later that January, Elizabeth's breathing at night became alarmingly difficult. I stayed up many nights with her, holding her mouth open with my finger so she would not have to struggle to inhale. Her nose was not running, but her nasal passages sounded very congested. Elizabeth could have opened her mouth, but she clamped it shut in her stress. The ?test? had arrived.

We knew Elizabeth's breathing problems were serious and needed medical attention. We took her to an ear, nose, and throat specialist (ENT) associated with the Children's Hospital in Washington, D.C. He ordered a sleep study to determine if her brain was failing to tell her to breathe (indicating a neurological problem) or if she were trying to breathe but something hindered her (a structural problem, such as enlarged adenoids). Or both! Jim took Elizabeth to Children's Hospital for the overnight study. While she slept, electrodes attached to her recorded breathing patterns. I anxiously phoned the doctor a few days later to get the results.

A nurse spoke to me and said, ?Elizabeth's test results show abnormalities. Please come in tomorrow to discuss the results with the doctor. He will look at her tonsils and adenoids then. He may suggest immediate surgery. In the meantime, he wants Elizabeth to sleep with you so you can monitor her breathing.?

We met with the doctor, and before the debriefing was over, Jim and I were in shock. According to the sleep study, Elizabeth was stopping her breathing long and often during sleep. Not only was there structural apnea (something physical blocking her airway), but also central apnea (the brain forgetting to breathe) as well. At one point during the study, Elizabeth stopped breathing for as long as twenty seconds. It was clear she might go to sleep one night and never wake up, or if not that, then her brain damage could grow worse from lack of oxygen.

Hearing this bad news evoked my ?numb? routine ? meaning I refused to process it. Jim, on the other hand, processed the bad news immediately. He turned pale and tears trickled down his cheeks.

There was a possibility that enlarged adenoids were causing the structural problem. The doctor began the process of threading a scope through her nose and throat. First, his nurse tried to clear away Elizabeth's nasal mucus from a cold with a little hose. Elizabeth stiffened and cried as it sucked out blood tinged mucus. I nearly passed out watching. It seemed like they were torturing her ? and we were letting them.

Then things got worse. Elizabeth's throat was numbed in preparation for the scope, but then an alarming side effect ensued. As the numbing progressed, her breathing grew more and more laborious. She arched in fright, fighting for each breath. I began pacing and crying in a room that seemed to get smaller with each passing minute. Jim tried to hold Elizabeth still so the scope could be threaded through internal passages. The doctor could not get the scope through her nose, and he ordered me out of the room. My panic distracted him.

Agonized, I sat in a nearby waiting room and wept. Other parents handed me tissues and looked on sympathetically. It sickened me to leave Jim like that. How could I abandon Elizabeth? Yet I was relieved that they made me leave. I couldn't stand the frightening drama. I prayed and wanted to feel that God was near. I began worshiping in my desperate heart, quoting Psalm 103: ?Bless the Lord, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases.?

Peace began to chip away at my hysteria. The nurse called me back in when the procedure ended. I sat in stunned silence as the doctor told us what had to be done. He began by saying he doubted that removing Elizabeth's tonsils and adenoids would help. He believed Elizabeth's poor muscle control caused hypopharyngeal collapse and the flabby tissue in her throat closed her airway. Also, little oxygen passed through her narrow nasal passages, a consequence of her small skull. The only thing that can help Elizabeth, the doctor recommended, was a tracheotomy.

A tracheotomy! I nearly threw up. I thought of Shelly, the little girl in Elizabeth's class, who had one. I remembered with horror the sight of that girl's tracheotomy gurgling with mucus ? in and out, in and out.

The doctor went on to tell us what a tracheotomy meant. Round-the-clock care, possible infections, life-threatening emergencies when it clogged, no more baths, no more wind on her neck. As far as Jim and I were concerned, it meant no more life. A tracheotomy for a kid like her meant what little she had would be taken away. Once she had a tracheotomy, it could become permanent. She would possibly never be able to breathe without one. Even with it, she could still die from the central apnea. And only God could cure that problem.

A tracheotomy for Elizabeth sounded more like a torture than a solution. ?No,? we told the doctor, ?we will not do it.?

?But you can't just let her go on the way she is,? he responded.

Jim and I were willing to take that risk. As much as we loved Elizabeth, we just could not allow a tracheotomy. We wanted to pray more about our decision before entirely closing the subject. We also wanted a second opinion. I called Elizabeth's pediatrician from a hospital pay phone. I repeated everything the ENT told us, ending with, ?But Jim and I just do not want Elizabeth to have a tracheotomy. Will you call social services on us if we refuse the surgery and Elizabeth's dies??

Elizabeth's pediatrician emphatically replied, ?I definitely will not call social services. I don't think Elizabeth should have to endure a tracheotomy either. It's too much for a child like her. A sturdy, active child can live with one, but it would be a lot tougher on Elizabeth.?

Elizabeth's pediatrician continued, ?God has kept Elizabeth alive this long. I'd hate to see surgeons start poking around.?

What a relief! Elizabeth's pediatrician agreed with us. Fully confident of our decision, we again told the ENT we could not allow the procedure ? at least not at that time. We accepted a booklet from him on how to care for a child with a tracheotomy and left his office. We could not wait to take Elizabeth and flee the hospital. We drove out of the hospital's underground parking garage and were on our way, feeling that a major nightmare had just been avoided.

But this crisis was not over. It got frighteningly worse.

Worry became our constant companion during the following days. We now knew Elizabeth courted death or further brain damage every time she slept. At her age and with two types of apnea, there were no monitors suited to her condition ? one that could alert us in time to dangerous breaks in her breathing pattern. The available monitors would either go off all the time or not until she was dead. We were left to trust God to keep her alive.

Were Elizabeth's sleep study results just some bad news we were not to fear? I remembered the warning God had given Jim on New Year's Eve. Was this the great test of faith we were to encounter? I thought of those breaks in television programming that say, ?This is just a test; had it been an actual emergency....? Perhaps this was just a test, and not an actual emergency. I hoped so.

If Elizabeth's friend Rachel had not died the previous month, it would have been much easier to trust God and dismiss the sleep study. Jim and I had fasted three days prior to Rachel's death, praying and fully believing she would recover. Why had not God healed her? Most of our Christian friends thought he would, and some even came forward with supposed words from the Lord saying she'd recover. We, too, had received ?words from the Lord? regarding Elizabeth. Were these truly messages from God?

Jim and I became Elizabeth's breathing monitors. We kept Elizabeth in bed with us so we would hear as soon as she struggled for breath. And struggle she did. Night after night I held Elizabeth's mouth open so she could sleep. If I didn't, she would cry and gasp. On weekends Jim took over the job of keeping Elizabeth alive and comfortable. It was agony to see Elizabeth struggle like this. So many times, during moments of complete exhaustion, Jim and I contemplated the tracheotomy. Perhaps Elizabeth would be more comfortable with one. But would she really?

What cruel decisions advanced medical technology forced on parents like us! Whatever we chose, we questioned whether we could live with the consequences. How would we feel if Elizabeth got the tracheotomy, and then had to endure years of restricted living with episodes of infections and mucus buildups that frightened her and threatened her life? On the other hand, could we ever forgive ourselves if Elizabeth died panicking and gasping for breath, knowing she could have lived if we opted for the tracheotomy? We went back and forth between fear and torment. Nevertheless, we just could not bear the prospect of a tracheotomy. The image of a hole in Elizabeth's throat overwhelmed us. She would have to live, or die, without one.

Hoping to find an alternative solution to Elizabeth's apnea, I took her to a dentist to see if he could design something to hold her mouth open at night. Given her age and tooth development, he could not. The dentist did mention a technique he had seen done in institutions. A button was surgically placed on the patient's tongue. A string was then tied around the button and pulled out to keep the tongue away from the back of the throat. I shuddered at this picture, too. Elizabeth already had deformities in her mouth and teeth as a result of the microcephaly. She didn't need a button and string on top of them. The dentist had no other comments or recommendations.

Elizabeth's breathing problem continued ? night after night. Although I could hear when Elizabeth was struggling to breathe, I could not hear when she stopped breathing all together. This worried Jim more than anything. But I felt confident the central apnea would not be the death of her. Until one night.

In the early hours of that terrible morning, I awoke with a start. Elizabeth lay next to me, unusually quiet. I touched her. She was not breathing! I shook her and screamed. Nothing. Jim awoke as I turned on the light. Again I shook Elizabeth. Finally, she took a deep breath. Although she had not stopped breathing long enough to turn blue, we were beside ourselves. Had I just caught one of the many episodes that she always recovered from? Or had God awakened me so I could save her from this one? How could I ever sleep again? Anxiety and insomnia consumed me instantly.

The following night, I barely slept. I didn't even want to. I had to trust God. That I knew, but I was afraid. I told God of my trouble trusting him and pleaded for his help. Searching the Psalms the next day, I discovered the scripture ?I lie down and sleep; I wake again, because the Lord sustains me? (Psalm 3:5). I earnestly prayed this over Elizabeth. Peace subdued my fear. Within a few days I was able to sleep again.

For Jim, trusting God with Elizabeth's life proved harder. It was his turn to battle fear and doubt. Jim had been correct suggesting that his New Year's Eve ?faith testing? word was for him, not me. Contrary to the evidence, I truly believed Elizabeth would live through this ordeal. Such confidence eluded Jim. He spent long periods agonizing on his knees before the Lord. Elizabeth's apnea severely crippled Jim's belief in God's intention to heal his daughter. He could not bear for her to suffer and die, yet he wondered if she would ever recover. This time, I was the one who was relatively strong.

Jim told me, ?Lisa, I think God supernaturally protected me from the agony you went through during Elizabeth's first year. I guess I was supposed to be strong for you. But now, I'm struggling to believe anymore.?

Jim concentrated on just trying to believe God would keep her alive, whereas I quickly resumed praying for Elizabeth's complete recovery from brain damage, not just her breathing problems. I remembered God's question to Abraham concerning Sarah, ?Is anything too difficult for the Lord?? I did not want to offend God by believing Elizabeth's case was too difficult for him.

Like the writer of Psalm 77 who also struggled with his faith, I reminded myself of the times God had ?parted the Red Sea? in my life or in the lives of others. I recalled many supernatural healings. Sometimes fevers left my girls immediately after prayer. Elizabeth's brain had grown enough to sustain her life, and she could hear and eat normally.

I witnessed many deeds performed by God on which I could meditate. I again chose to trust in the Lord with all my heart and not lean to my own understanding. If Elizabeth died, I did not want it to be because I refused to believe, but because God had foreseen something better for her. Besides, death is nothing to fear for a child of God ? in fact, for those who die in Christ, it is far better than life on earth.

A few weeks after asking God to help rebuild my faith, he answered my prayers. During a church meeting, a man who knew nothing of Elizabeth's breathing problems walked over to us, believing he had a message for us from God. The man said, ?God wants you to hang on; don't give up. He gave me a very clear word for you: `Keep yourself strong, feasting upon my word. Hold fast to the gift I have promised you. You are well-loved and I hold you in my hands.'? He also quoted from Psalm 27 as part of his message: ?I believe that I shall see the goodness of the Lord in the land of the living. Wait for the Lord; be strong, and let your heart take courage; yea, wait for the Lord.? I hesitate to share these words from the Lord before they come to pass, but this one meant so much to me, and so lifted my spirits, that its importance should not be ignored.?

Jim and I knew that Elizabeth's apnea would not go away soon. We were prepared to make any necessary sacrifice of sleep. But now Jim also knew that his faith in God had been tried. Where it was flawed and weak, Jim committed himself to making the repairs. He endured the test.

 

.17.

 

Striving for a Happy Home Life

 

?You shall eat the fruit of the labor of your hands;

you shall be happy, and it shall be well with you.?

Psalm 128:2

 

Despite our newfound knowledge of the seriousness of Elizabeth's breathing problems, I tried to maintain a happy atmosphere for my family. Jim and I wanted life to be good again. We wanted to escape all thoughts of a tracheotomy. I threw away the ?how-to? tracheotomy booklet we?d received from the hospital. Just glancing at it made me ill. Although the hand-drawn pictures of children with tracheotomies made this lifestyle look so neat and tidy, it was nothing less than a book of horrors to me. It seemed to threaten a bleak future for Elizabeth.

Despite Elizabeth's breathing struggles in the evening, our daily routine was normal. I continued to send Elizabeth to school. I caught up on my sleep during the day. Before long, happiness was part of our home life again:

 

Dear Family and Friends, February 1992

Now Jacqueline is no longer our only ballerina. Elizabeth, too, is getting in on the act. I put her into a tutu when she is in her crawler so she can scoot across the floor while Jacqueline dances around her. Jacqueline is thrilled Elizabeth can participate. She is no longer relegated to being the ticket taker during Jacqueline's frequent home performances.

 

And later, thanks to Jim's father, Elizabeth enjoyed a new freedom of movement:

 

April 16, 1992

Jim's parents came earlier this month so his Dad could finish a walker he made for Elizabeth. It took a lot of adjustments to get it just right for her. It is similar to a regular walker except it has a board she leans forward on and it supports her up to her armpits. When she has the strength to stand straight up and get it moving, her look of surprise and delight overwhelms me with joy. We keep it in the kitchen. Sometimes she actually gets in my way while I'm cooking dinner. How I've longed for her to get in my way. We are so blessed to have a carpenter in the family. Dad would gladly build anything for Elizabeth. He also made her a little adjustable table. He's always praying for a miracle, and once told me ?All this praying is going to work ? it has to.?

Love,

Lisa and Jim

 

 

.18.

 

School Systems and Health Evaluations

 

?I will call to mind the deeds of the lord;

yea, I will remember thy wonders of old.?

Psalm 77:11

 

Elizabeth's schooling provides me with chances to meet other children with disabilities and their families. I entered a new world when she was born. Although it was a world filled with concerns and pain, it also led to incredible lessons in friendship and love ? the things that really matter. Elizabeth's classmates and their parents became a wonderful part of this world:

 

Dear Family and Friends, April 28, 1992

I took Elizabeth to a party last weekend given for a boy in her class and his older sister. It was very touching to see the kindness of the hostess. Her son, Danny, is three, blind, deaf, has cerebral palsy and receives his nutrition through a tube in his stomach. I held him for awhile. There were about twenty kids packed in her little living room.

Her husband has been in Korea for the past eleven months with the armed services. With all she has to deal with she was kind enough to throw this party and invite everyone in her son's class. I could sense God's pleasure in her as she obeyed the scripture exhorting us to have parties and invite the blind, lame, and sick. I did not have the courage to invite the kids in Elizabeth's class to her party last year because I was not sure what I would do with them if they came. I also reasoned that my indoor space was too cramped. Although her party was crowded and her son could not participate, I'm sure Danny enjoyed the excitement he could feel around him.

Elizabeth had a great time sleeping through most of it and woke up at the end to eat a pint of ice-cream. In attendance was a twelve-year-old girl with cerebral palsy, who did not have anyone to interact with. Most of the kids were either like Elizabeth or were the healthy active friends of Danny's older sister. I felt sad as she sat alone, basically ignored. It was difficult to understand her speech, but I was told she was intelligent. She finally asked me if she could hold Elizabeth. I held Elizabeth on her lap and she showered her with kisses. Elizabeth loves to be kissed so she was all smiles. She did not mind that her friend's kisses were dripping with ice-cream and cake. She asked if she could feed Elizabeth and I agreed. Elizabeth endured ice-cream going all over her face as the girl struggled to get it in her mouth. My eyes watered as I saw the beauty of those two interacting and receiving so much pleasure from each other's company. Danny's mother, Kathy, told me the girl lives down the street and often comes over so she can ?help? take care of Danny. True Godly love in action. He has taught me much about that over these past two years.

Love,

Lisa and Jim

 

Like any other school, students at Elizabeth's school received report cards. But reading reports on Elizabeth's progress in school served as another source of emotional torture. Although the teachers wrote about Elizabeth's pleasant disposition, one evaluator wrote plainly that ?Elizabeth has not met any of her goals.? To our dismay, this report card informed us for the first time that Elizabeth was considered and labeled ?cortically? blind?able to see, but unable to interpret what she saw. That explained two things: her difficulty in visually focusing on objects, and why we had begun receiving literature on support groups for the blind.

On paper, Elizabeth was a failure. Reading in black and white where they placed her developmentally devastated us. According to the teachers and other evaluators, Elizabeth functioned as a two- to three-month-old infant. I felt like a failure. ?What is the point of continuing all this prayer and therapy?? I thought. ?Maybe I should just enjoy loving her and put any hope for progress behind me. I'm just setting myself up for more disappointment.?

Despite the despair brought on by these reports, I knew I could not give up ? I could not do that to Elizabeth ? or to myself. ?Therefore, do not throw away your confidence, which has a great reward. For you have need of endurance, so that you may do the will of God and receive what is promised? (Hebrews 10:35-36). Besides, if I stopped all her stretching exercises, her muscles would atrophy and her bones and joints would deform. Regression was not an option.

Call it denial, but I decided to stop reading Elizabeth's report cards. Only Jim continued to read them. He read aloud the positive comments about Elizabeth's pleasantness and smiles, and for those, we took her out for frozen yogurt to celebrate. With this arrangement, Jim remained informed while Elizabeth and I remained happy.

.19.

 

Therapy at Home

 

?Train up a child in the way he should go,

and when he is old he will not depart from it.?

Proverbs 22:6

 

Elizabeth's withdrawal from school proved to be a good decision. Away from other students, she no longer contracted one cold after another. This meant no more chronic phlegm build-up and swollen nasal passages. We also kept her relatively isolated from other young children in the neighborhood. Although this limited our social life, it was worth the improvement in Elizabeth's structural apnea. She rarely struggled to breathe at night. Apparently, the constant colds aggravated her condition. Elizabeth's ears also cleared up nicely. Finally, we all could sleep peacefully at night.

With Elizabeth at home, Jim and I were solely responsible for her physical and cognitive therapy. Since we no longer had Becky as Elizabeth's private therapist, we hired another one, Mary. She happened to be a good friend of ours, and we felt fortunate to benefit from her expertise. Mary exuded a positive attitude and rejoiced with us over any of Elizabeth's little accomplishments. Initially, I dreaded therapy sessions because they were point-by-point reminders that Elizabeth was not functioning normally. But now I found the sessions very encouraging.

The director of Elizabeth's former school once told me, ?We're here to prove the doctors wrong.? A therapist's goal is the same. I consider them as special agents of God ? little messengers of hope. Mary and I never discussed nasty little topics such as Elizabeth's developmental level. Instead we focused only on helping Elizabeth meet her goals without imposing deadlines for her.

Much of Elizabeth's therapy took place on my lap. Routinely stretching her limbs and facial muscles quickly became second nature to me. I stretched her while sitting with friends, at the movies, and in church during sermons. When busy in the kitchen, doing paperwork, or writing, I usually placed Elizabeth on her crawler so she could get some exercise, or strapped her in a prone stander (an upright board) so she could bear weight on her feet and work on head control. When she tires, I simply lay Elizabeth on her back and place some dangling toys above her. Although she cannot reach the toys with her hands, Elizabeth can reach them with her mouth.

Despite the increased responsibility of keeping Elizabeth out of school, I loved having my little two-year-old home again. Never demanding, she would lie quietly on the floor and watch TV until I could attend to her. When I picked Elizabeth up, her instant smiles showed appreciation. She enjoyed her therapy. In fact, she enjoyed anything we did together, especially rocking in my chair. I held her in my lap like a newborn, completely supporting her head so she could relax while facing me. In my arms, she made good eye contact with me. We often gazed into one another's eyes for long periods of time and smiled ? it was our way of communicating. Elizabeth could not verbally respond to my words of affection, but I saw her love for me. She studied my entire face and smiled whenever I contorted it into a silly expression.

Reading to Elizabeth in the rocking chair became one of our favorite pastimes. Aside from children's picture books, I also read aloud my own books and magazines. She looked at the pages even if they did not have pictures. I read her the Bible ? not only so she could grow spiritually, but because God's words ?are life to him who finds them, and healing to all his flesh? (Proverbs 4:22).

In my search for scriptures about healing, I found many commands and promises that incorporated body parts. They were perfect for me to say when working with her. For example, when stretching open her clenched fists, I said, ?You shall clap your hands with all nations and shout to God with a joyful cry.?

Even though her therapy needs were great, taking care of Elizabeth was easier in some ways than caring for a toddler. Since immobile children can?t get into anything, I was spared the exhausting chore of running around protecting her from harm and cleaning up after her. There was no potty training, teaching her manners, or disciplining bad behavior. Of course, I wished she could get into some mischief, so she would at least know what it was like. One day I emptied my cupboards and helped her bang my pots and pans together on my floor ? something Jacqueline did repeatedly at that age.

I do not feel saddled by Elizabeth's needs, but rather see them as just a major part of the work that God has called me to. As a bonus, I get to use Elizabeth's care as an excuse to avoid the things I would rather not do ? such as cleaning.

 

.21.

 

The Baby Shower

 

?Now they were bringing even infants to him that he might touch them.?

Luke 18:15

 

The invitation made me happy and excited, but I was unprepared for the baby shower. It had been almost three years since Elizabeth's birth ? why should a baby shower bother me now?

I hardly knew Mae, a woman from our church, but I was happy to rejoice with her. It had taken her years to conceive, and all her friends were celebrating. Although I normally took Elizabeth to functions because it was easier than finding a sitter, I knew I should not bring her to this one. I did not want Elizabeth's presence to cast a cloud over the celebration. No expectant mother wants to dwell on the possibility of that heartache.

My decision saddened me, but how could I deny it: Elizabeth was not a good poster child for an event like a pending birth.

It was the most beautiful shower I ever attended. Everything celebrated the goodness of God and the specialness of her child. A quilt was made by the children of friends. There were speeches and prayers. Mae wept when presented with a poignant song written by a close friend, but a shocking bitterness erupted violently within my heart with each verse I heard.

 

?Master's Hand? by Vicki Cowan

 

You've waited so long for this little one

And he's waited so long just for you.

Yet the Master's hand had it planned

even before time began.

 

For God is a faithful God.

He is the fulfiller of your dreams.

His pleasure shows through the gift he bestows.

Oh He must love you so.

 

 

Each happy word pushed me deeper into an abyss of resentfulness. I thought Elizabeth would be a gift, too, and that God was going to fulfill my dreams. How much could God love me to give me a gift in that kind of shape? Why such joyous anticipation when all God had in store for me was inconsolable grief?

The happy party atmosphere was not dampened with my tears. I was too bitter to cry.

What was wrong with me? I had to regain control my thoughts. ?Elizabeth is a blessing,? I forced myself to remember. She just didn't arrive in the package I anticipated. I reflected on her beautiful smile. Her soul was innocent and undemanding. Her needs were simple. All she asked was to be loved. How easy that was to provide her, thanks to God. ?Yes God, you have blessed me. Thank you.?

When it came time to leave, I was beginning to feel happy and content. But I left the shower surprised at how envy could so quickly engulf me. I rejoiced when Mae gave birth to a healthy child--but it took work.

By Elizabeth's third birthday, her physical skills had improved little since the beginning of the year, but she appeared more alert. For example, her head would move to follow Jim, her hero, around the room. While in her infant seat, Elizabeth looked so cute straining her neck to keep up with his movements ? even when he walked behind her.

Elizabeth still could not play with her birthday presents, but we did not care. We were happy that Elizabeth felt good. Her pediatrician was pleased with her health. Elizabeth had not had an ear infection in months and was breathing very well. She also gained weight (three pounds), which she had not done in over a year. To see her grow out of her clothes was a long awaited blessing.

Elizabeth's pediatrician, who had been with her since birth, retired in December, the month Elizabeth turned three. To my surprise, I had grown attached to him. He was the only doctor who thought Elizabeth's life was not a tragedy ? that as a child of God, it had meaning. And he left the medical decisions up to us. He had supported our decision not to use hearing aids or to allow a tracheotomy or ear tubes. He was the only one who left Elizabeth's parenting completely up to us. So reluctantly we set out to find a new pediatrician.

I took Elizabeth to interview one whom I had used earlier in Jacqueline's infancy. I reminisced as I sat waiting for him in the examination room. I had so many happy memories of taking Jacqueline there for her well-baby check-ups.

But when the doctor arrived and took his first look at Elizabeth, his reaction quenched my cheerful mood. As Elizabeth rested in my arms, he told me she had one of the worst cases of microcephaly he had ever seen. Amazed, he said, ?I can't believe that the cytomegalovirus was able to do that much damage.? I placed Elizabeth on the examining table. As the doctor continued to look her over and stretch her stiff limbs, Elizabeth smiled at his touches and words ? seemingly unaware of his stark opinion of her.

The doctor called his nurse in so she too could be amazed at the virus's devastating effects on Elizabeth. Elizabeth was not a child there ? she was a ?case.? Clearly, this man was not the pediatrician we required.

Surprisingly, I did not cry as I waited for the elevator to take me down to the lobby. His words, though momentarily depressing, did not sink too deeply into my soul. If this man thought my little girl was repulsive, it was because he did not know her. I recovered quickly by deciding to feel sorrier for him than I was for myself. How glad I was to know unconditional love so early in my life. Learning to love the so-called unlovable has brought me more joy than I could have imagined. Shortly thereafter, I did find a good pediatrician. My friend Diane recommended him. She said, ?He is a jolly man who is fond of children.?

I liked this man immediately. He was a tall, older man with grandfatherly qualities. He had ten children of his own and one of them had Down syndrome. He knew what it meant to be a parent like me. And he knew that Elizabeth was a child to be enjoyed ? not abhorred. He was thrilled by Elizabeth's happy nature and kissed her often. How I love to be with people who like Elizabeth ? who did not think her a tragedy.

The doctor made no mention of the fact that she functioned like a three-month-old infant, but rather discussed how wonderful her skin color looked ? how healthy she was despite the microcephaly. He was not upset that Elizabeth was not in school; he supported my decision as a parent. He agreed to keep Elizabeth on low-dose antibiotics until he determined that her ears could function without them. He was a man who only considered surgery for Elizabeth as a last resort. I liked that perspective.

Elizabeth made little progress that third year. But I held undiminished hope for God to do something good for her. One of my cousins met Elizabeth for the first time that year. The words of a song played across his mind. He believed the following words were from God:

 

?Elizabeth's Song?

 

You are so beautiful

Remember the dream

Of the day you'd soon wake up

From a long season's sleep.

 

And from out of the garden

From a sweet winter's dew

Would spring forth the promise

That Jesus made you.

 

Elizabeth, the time will come

When Jesus will heal His wounded ones

Oh Elizabeth, only believe

Let Jesus your Maker soon finish His piece.

 

Though the world would try to taunt you

And the heathens dig a grave

You are full of more of Christ's rich blood

Than the lie that sets their pace

 

Cause this world is more a battle

Of the things we cannot see.

And our only hope is Jesus.

That is why you must believe.

 

Jim and I found joy in these words. We love to dream about what it will be like when Elizabeth can move about and tell us what's on her mind. Yet we also enjoy Elizabeth's compliant, meek spirit. It makes her a pleasure to raise. And having a meek spirit has eternal advantages, as promised in the Beatitudes, ?Blessed are the meek, for they shall inherit the earth.?

 

PART IV

 

TELLING THE STORY:

THE FOURTH AND FIFTH YEARS

 

.22.

 

Pneumonia

 

?Why are you downcast, O my soul? Why so disturbed within me?

Put your hope in God, for I will yet praise him, my savior and my God.?

Psalm 43:5

 

At the beginning of spring I reflected happily that Elizabeth had not been ill all winter. No ear infections and no pneumonia. Was she ready to have more contact with children? I hoped so. Elizabeth loved being touched and watching the antics of little ones. I decided to provide daycare for two sisters, age three and four, to earn a little extra money and to have extra company for Elizabeth. It was a big mistake. Elizabeth immediately enjoyed the company of the girls. But her enjoyment came with a price. Elizabeth's immune system was still not strong enough to protect her from the many germs they carried. For a few months, she caught one cold after another. This time the colds did not transform into ear infections. They turned into pneumonia.

Jim's aunt called our family reunion a ?bittersweet? affair, referring to the obvious hole left by family members who had died. Jim's father had died suddenly of a heart attack that year. He seemed so healthy and young. Naturally, we all grieved. Gone was the man who spent hours praying for and cuddling Elizabeth. Gone was the man who always told Jim, ?Everything will turn out all right,? especially with regard to Elizabeth. There were other bittersweet moments with which to cope. I managed to rein in my tears while watching all the little girl cousins running around trying to kiss the boys, which made me long all the more for Elizabeth to be chasing with them.

During the car ride back to Maryland, however, my tears flowed freely. One of our taped Bible songs sang out Psalm 27: ?Wait for the Lord, wait for the Lord; be strong and let your heart take courage, and wait for the Lord,? I considered Elizabeth's delays and cried. ?How long must I wait? How long must Elizabeth wait??

Jacqueline slept on as I sobbed. Jim held my hand and drove quietly. When my tears subsided, sadness seemed to have drained away. Jacqueline awoke and she stretched out her hand towards Elizabeth. She began stroking her arm. ?I'm so glad God gave Elizabeth to us and not to some other family. I love having her as my sister because she is so beautiful ? and kind.?

I looked at the love on Jacqueline's face and the pleasure on Elizabeth's as Jacqueline continued to touch her. ?Yes, God,? I thought, ?You have been good to us. I can wait for you.? I could not give up hope, faith, or gratitude.

.26.

 

Elizabeth at Four

 

?You will be sad, but your sadness will turn into joy.?

John 16:20

 

On Elizabeth's fourth birthday, I reflected on her growth, and how we had all grown. My reflections evolved into another form letter to family and friends.

 

 

Dear Family and Friends, December 19, 1993

We've had fun this month preparing for Elizabeth's birthday party and for Christmas. Yesterday, the 18th, was Elizabeth's fourth birthday.

In the morning I sat Elizabeth in her stroller so she could keep me company as I wrapped Christmas presents. I glanced at her smiling, contented face, and was filled with thankfulness as I recalled her arrival four years ago. All of a sudden, I sat stunned ? I was reliving her birth as if it were a happy memory. I had only been thinking of the moments I held her and noticed how sweet she was ? not how horrified I was at the prospect of her dismal future. I was thrilled to realize that God had erased the sting of my overwhelming anguish and in its place had magnified the happy memories.

This year, I decided that Elizabeth's birthday party would have a ballet theme. I got the idea a few weeks ago when Jim saw a newspaper article about a young woman named Joy in our church who is a ballerina and was dancing at a children's hospital. What is remarkable about it is the fact that Joy had once been a patient there ? a cancer patient. She had been healed both supernaturally and with the help of the doctors. One doctor commented in the article, ?You don't forget this kind of patient: a long-term survivor. A good example. It's unusual she becomes a ballerina. She is one of the lucky ones.?

I thought if Joy can become a ballerina with God's help, so can Elizabeth. My grandmother and cousin were both professional ballerinas ? the ability to dance is in her background. So, we bought her a beautiful yellow dancing outfit with an attached tutu and invited one of Jacqueline's friends over. She loves to dance and to play with Elizabeth. Jim's sister Kathie, unaware of my new dream for Elizabeth, sent her a beautiful pink sweatsuit for her birthday ? one that just happens to have ballet slippers embroidered on the top. And Jim's sister-in-law Maria sent her a little shirt just covered with ballet slippers.

Another present Elizabeth received was also very special. Jim's other sister Marianne mailed us a package. Elizabeth sat happily in my lap in the kitchen as we opened the card first. I read it aloud to her. It said, ?I made this just for you, Elizabeth.? When I opened the box and unveiled a beautiful flower-print dress made of flannel and lace, tears came to my eyes. I thought, ?So many hours of sewing for a little girl who can't even say, `Thank you.'? I felt God's pleasure in Marianne's gift.

When it came time for Elizabeth's party we dressed her in her new dancing outfit, rolled up the rug and put on our videotape of the Nutcracker for inspiration. I held Elizabeth in a standing position so we could take her picture. To our amazement, she stood so straight and tall that I had only to balance her with one hand. We were delighted and took many pictures before she crumpled from all the effort. Jacqueline later told me she thinks God is healing Elizabeth ? ?step by step.?

We placed Elizabeth in her walker then, and Jacqueline and her friend placed a wooden nutcracker doll on her tray so he could protect her from the evil Mouse King. Elizabeth smiled as the girls leaped about in front of her. The soft glow of the lighted Christmas tree reflected on Elizabeth?s face. Jim lifted his daughter out of the walker and swirled her around and around, high in the air. She giggled in delight at the spinning room, at the air on her face, at the Christmas lights, and especially at her father's smiling face. Despite the odd combinations of Elizabeth's outfit ? a yellow tutu, pink and white foot orthotics, and Barney sneakers ? I smiled and thought, ?Tonight, Elizabeth is the loveliest ballerina in all the world.?

Merry Christmas everyone.

Love,

Lisa and Jim

 

.31.

The Writing Life

?Do not neglect the gift you have.?

1Timothy 4:14

 

With Elizabeth settled in at school, several hours a day opened to me. What should I do with them? I helped at both Jacqueline's and Elizabeth's schools once a week. I also did some bookkeeping from home. I still needed to be at home, since the girls had different days off, and I also needed to be available when they were sick. So I ruled out full-time work. Perhaps now was the time to devote myself to writing.

Since people seemed to relate both to the anguish and the levity of my letters, I figured they could easily be turned into publishable articles and perhaps someday a book. So upon the advice of other writers, I opened The Writer?s Market and learned how to submit short stories to magazines.

I sent my first story to Good Housekeeping magazine. I figured they'd be thrilled to publish my humorous piece about the panic of guests arriving when the house is a mess. To make sure they'd realize what a great find I was, I mentioned in my cover letter that I wrote just like Erma Bombeck. But instead of receiving their adulation, I received, ?Thanks, but no thanks.? Well, I thought, they'll be sorry! Another magazine will snatch up my article and offer me a column. I'll be a household name! As quickly as I could address the envelopes, I sent my stories to other popular women's magazines. They rejected me too! Then on to lesser known magazines. Still no nibbles. Although the wind was leaving my sails, I pressed on, crafting story after story, pleading with publishers to notice me.

One evening, while I was deeply engrossed in the story I was tapping out on my PC, the phone rang. ?Is this Lisa Saunders??

Irritated, I answered reluctantly, ?Yes,? resenting the interruption of my story-telling mood by someone probably trying to sell me something.

Sensing my irritation at the unexpected phone call, the woman quickly continued, ?Mrs. Saunders, I'm sorry to bother you. I'm from Welcome Home magazine. We really enjoyed your ?Camping? and ?My Apple Obsession? stories. Do we have your permission to publish them? We'd like to run the camping one in September and the apple one in October, but we can only pay you by sending three complimentary magazines. Is that okay??

?That's great! I'm so sorry I was mean to you. I thought you were a salesperson. Of course you can publish my stories!? I told the entire Eastern Seaboard I had finally been discovered and was on my way!

The September issue of Welcome Home finally came in the mail. I couldn't wait to show it off! I pulled the magazine from the mailbox and stood on the porch, opening it to the table of contents. Wait a minute. I don't see my byline. I flipped through the rest of it. My camping story was nowhere to be found! I called the magazine.

?I'm sorry, Mrs. Saunders, we ran out of space,? the editor explained. ?We found a humorous piece about laundry that fit better with this month's theme.?

Devastated, I read the article that ousted mine. I had to admit, it was pretty funny. But I have funny laundry, too. Why didn?t I think to write about what a riot doing my laundry is?

Then October came along with another issue of Welcome Home in my mailbox. And there was my story! My phone wasn't ringing off the hook with admiring fans, but as a writer, I had arrived (sort of). I doubted Good Housekeeping was jealous, but I was thrilled. I was finally a published author!

As hard as it was to get just that one story published, I knew it was time to write a more difficult article ? one solely about Elizabeth. This time, acceptance came much more quickly. My sister-in-law Kathie phoned to tell me she met the editor of Challenge Magazine, a magazine devoted to people with physical and mental disabilities and those who work with them. Kathie mentioned that I was a writer, and the editor asked if I could send a sample of my work. I sent ?Elizabeth ? A Christmas Blessing? immediately and the magazine's editor phoned me shortly thereafter.

?I knew your story was perfect for our fall issue the moment I read your title,? she said. Hum, I thought. So it?s not the story that counts, it?s the title!

The time had come to write a full length book about my journey with Elizabeth. Working on our story eased my agony over her condition, even though I knew it may never find a publisher. As my anguish flowed from my heart and onto the keyboard, its impact drained slowly from my soul. While I wrote, I recalled scriptures that spoke directly about suffering or moments that had taught me how to think positively about my experiences.

Upon completion, I sent out proposals to several Christian presses. The rejection slips began pouring in. Nearly thirty publishers refused my book saying things like, ?We don't do personal experience stories,? or ?We just did a story like that.? One rejection letter stated, ?Our editor just died.? (I didn?t think my cover letter was that bad!)

In the midst of all this waiting and rejection, I decided to move on. The voices of my eccentric relatives from childhood summers spent in upstate New York were calling me.

Memories of my great-grandfather's bed clanging back and forth in his bedroom on railroad-like tracks, my aunt hiding her cookies and Twinkies in her dishwasher, my grandmother?s stories and homemade goodies, and the terror of riding my ornery pony, all blossomed into a children's novel, Ride A Horse Not An Elevator. It was basically a true story except the part where I, the heroine overcomes my fear of riding my pony all alone to go for help when my grandfather is injured by a charging cow. In reality, my grandfather and I walked slowly back to his house, while he held his chest full of broken ribs. The main character bears my name, but I changed everybody else?s. (My mother complained I made her family look too ridiculous with my tales of outhouses and false teeth.)

The book?s themes came as a result of raising Elizabeth: overcoming fear and finding unconditional love. When God taught me that love overcomes fear with regard to Elizabeth, I was set free. Fear cripples. I wanted to teach kids that God provides a way to overcome fear. Fictionalizing my story helped illustrate this point. Lisa is terrified of the new pony her grandparents give her and refuses to ride it any longer. But when Lisa's grandfather is injured by a charging cow, he needs her to ride alone to get help. She is afraid, but remembers her grandmother quoting the scripture, ?Perfect love casts out fear.? Lisa loves her grandfather and knows what she must do. Unconditional love, the other theme in Ride a Horse, also resulted from my learning to love Elizabeth. Lisa is a chubby girl who is taunted in the city for her looks. But on the farm, she finds a friend, Martha Motto, who thinks Lisa looks just fine. Martha says, ?I don't think you're fat. I think you look just like a Lisa should look.?

 

 

.32.

Christmas ?Presence?

?I waited patiently for the Lord; he turned to me and he heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God.?

Psalm 40:1-3

 

THE SIXTH YEAR

.33.

Spreading the Word

?Praise be to ... the God of all comfort, who comforts us in all our troubles,

so that we can comfort those in any trouble with the comfort we ourselves have received from God.?

2 Corinthians 1:3-4

 

Tired of trying to find a publisher for my book about Elizabeth, I decided to publish it myself. I wanted to share my story with others, with or without the backing of an established press. I titled it A Time to Weep and A Time to Laugh, paid a word-processor typist to put it into book format, and spiral-bound it in my garage (suffocating in the heat of a particularly steamy Maryland summer) with an old binding machine. I made about 100 copies.

Marketing my self-published book (while still writing Ride a Horse Not an Elevator) was more difficult and time-consuming than I realized. Most bookstores refused to buy copies outright, but wanted to sell them on consignment. I would not get paid until they all sold. Many bookstores did not pay any attention to whether they sold or not. My books were often hidden behind more publicized paperbacks, and when I sent those interested in my story to the shop to buy it, the clerks often did not know they had it. The problem grew more aggravating when a local newspaper printed an excerpt, but neglected to tell readers where they could get a copy of the book.

I began to feel like an egotistical fool for putting all this effort and money into getting my story out. Why had I done it? I felt compelled to, that was all I knew.

At first I felt embarrassed promoting a book to the news media that had been rejected by publishers. But thanks to Jim?s mother?s connections, his hometown paper in upstate New York learned of my story and asked to run an article profiling me and the book. The editor thought my book chronicled a valuable story, and she remembered to include which bookstores carried it.

Shortly thereafter, a letter with an unfamiliar return address appeared in my mailbox. It contained pictures of a little girl who looked strikingly like Elizabeth. She, too, had an abnormally small head.

Dear Lisa Saunders,

I recently read an article ... about your daughter Elizabeth.... I just had to buy your book.. I loved reading your book. I hope you will find time to write back because I'd love talking to someone in our position that's going through the same thing...

I hope you don't mind me writing you about our daughters. It makes me feel a little better talking or writing about [my daughter] because I've had a hard time with accepting her disabilities....

I hope to hear from you. Thank you for writing your book. It helped a lot.

 

I sat down to write to her, but stopped. I just had to call her first. The woman was surprised to hear from me. She actually thought I was some famous author. Initially, her husband discouraged her from writing to me. He said, ?She probably gets tons of letters. She's not going to have time to write you back.?

?I can't thank you enough for writing.? I replied. ?Yours is the first letter I've ever received from a reader. I'm thrilled to know all my hard work hasn't been in vain.?

Speaking with that mother was wonderful, but also painful. Hearing her heartaches and daughter's health problems reopened some old wounds. Like me, this mother had also caught cytomegalovirus while pregnant. Aside from dealing with her own heartache, she had struggled to keep her daughter alive. Like Elizabeth, her daughter easily caught colds that turned into pneumonia. She was often on oxygen. Her breathing problems were worse than Elizabeth's. It was difficult listening to her child's suffering. I realized connecting with other parents was not always going to be easy. After we prayed together for her daughter, we hung up.

Oh God, when are you going to heal Elizabeth and others like her?

 

.37.

Celebrating the Goodness of God

 

Jesus said, ?whoever welcomes a little child in my name welcomes me.?

Matthew 18:5

 

In preparation for the girls' birthdays and upcoming holidays, we wanted to celebrate the goodness of God with a family trip to Disney World. No, Elizabeth had not made astonishing improvements, but the staff at her school knew of her advances and were quick to tell me. Her speech therapist, who does not share my beliefs, remarked to Elizabeth's physical therapist: ?Maybe there is something to praying to God. Lisa prays for Elizabeth and look at all the improvements she's made.?

Perhaps my prayers were not answered exactly as I expected, or as quickly as I so desperately wanted, but prayers were indeed answered and God continues to show us love and mercy and the power of his miracles every day. Unlike my Christmas form letter of six years ago detailing Elizabeth's birth, my Christmas form letter of 1995 was truly filled with glad tidings.

 

Dear Family and Friends, November 28, 1995

Well, we did it?we made it to Disney World. We can scratch it off our list of things we wanted to do for our children.

Because of the expense and distance, we had previously planned to visit Disney World only to celebrate God's miraculous healing of Elizabeth. Although the miraculous has yet to happen, we decided to celebrate anyway for we have much to be thankful for. Elizabeth is alive and brings much joy to Jacqueline and Jim and me. She can breathe and eat on her own, she can go anywhere a wheelchair allows, and she is the happiest little person we have ever met. To her, life is good when we cuddle her, take her for long car rides, or for walks in her wheelchair.

Jacqueline, of course, was thrilled at everything she saw at Disney World. Elizabeth especially enjoyed the long car ride down and the all-day riding in her wheelchair. Because of Elizabeth's condition, we were often treated like royalty at the theme parks. On the rides, we were ushered right on, instead of having the average forty-five minute wait. Many times it was easier to take her out of her wheelchair and sit her on our laps rather than wait for a special wheelchair car for many of the gentle rides through imaginary lands. Of course she loved the cuddling and perhaps spent more time looking up at the faces of Jim or me than she did at all the special effects. She did, however, thoroughly enjoy the E.T. ride.

We thought we could sit her squashed between us, but once on the ride, we realized she had her own seat in the space between Jim's and mine. We propped her arms over the handle bars and we each held her up under her arms. It was nerve wracking when the bicycle-like contraption left the ground and we were flying through the air, bumping along through outer space. Elizabeth lit up with each bump and held her head high. She smiled at all the special effects along her quest to help E.T. get home. She looked like such a big girl in her very own seat. She was proud of herself, and we were proud of her. Jim and I both later agreed that ride was our favorite.

Love,

Lisa, Jim, Jacqueline, and Elizabeth

 

.39.

 

Jackie vs. Elizabeth

?Her children rise up and call her blessed.?

Proverbs 31:28

 

.40.

?Help!?

?For I was ? sick and you looked after Me; in prison and you visited Me?.insofar as you did it to one of the least of these brothers of Mine, you did it to Me.?

(Mt. 25:34-40)

 

.41.

Exhaustion Prompts a Major Decision

?We were so utterly, unbearably crushed that we despaired of life itself. Why, we felt that we had received the sentence of death; but that was to make us rely not on ourselves but on God who raises the dead,...and he will deliver us; on him we have set our hope....?

2 Corinthians 1:8-10

 

.42.

Surgery after 9/11

?The days are coming when they will say, ?Blessed are the barren, the wombs that never bore children, and the breasts that never nursed!? Then they will begin to say to the mountains, ?Fall on us!? and to the hills, ?Cover us!??

Luke 23:29-30

 

.43.

 

The American Civil War

?We have shared the incommunicable experience of war. We have felt, we still feel, the passion of life to its top.?

Oliver Wendell Holmes, Jr. (Not a Scripture, I know, but I felt like raising Elizabeth was a lot like war!)

 

.44.

Elizabeth Continues to Live Life on the Edge

?Just as each of us has one body with many members, and these members do not all have the same function, so in Christ we who are many form one body, and each member belongs to all the others. We have different gifts, according to the grace given us.?

Romans 12:4-6

 

 

EPILOGUE I

Life Goes On

?He will wipe away every tear. There will be no more death or mourning or crying or pain.?

Revelation 21:4

 

Dear Family, Friends, Parents, Teachers, and Readers,

As I write this, December 28th, 2003, I am in Elizabeth?s bedroom, which doubles as our computer room. She was up all night, for no reason in particular, and is now catching up on her sleep. Afraid to wake her, Jim is preparing to go to church alone. Jackie, who is paid to sing at another church on holidays, has already left for her job. The only one pestering me right now is Riley. He wants his walk. Soon he will be nudging my hand on the keyboard, making it impossible for me to write.

Hearing of the imminent release of Ever True, a local newspaper contacted me to set up an interview in my home. She wants to bring photographers! ?Can?t you just use a picture of me from about ten years ago?? I mean technically that is when I started the book. And I was thinner then too.

?Well, we really like to have a current photograph of authors.? Oh well, back to the dieting drawing board.

And now I have a new worry: How to keep the dog and all his hair off the furniture. I know authors should be pictured in a home that has that lived-in look, but our couches look a little too lived in, showing the last few years of Riley scratching and drooling on them. When visitors sit on them, Riley jumps up and leans against them (he weighs 90 pounds), pants his bad dog breath in their face, and if properly appreciated, he?ll settle his head on their lap. Some guests are appalled that I don?t shoo him off, but that?s why we hired him ? to sit on the couch, particularly with Elizabeth. If he?s really comfortable with our guests, he begins chewing contentedly on his toenails. Oh well, if I can?t get my weight down in time for the interview, the least I can do is bathe the dog and brush his teeth!

It is difficult to end this book here since the story of Elizabeth?s life and my efforts at mothering are still unfolding. There are many situations and conditions left unresolved. Any progress toward walking is stalled with the tight muscles and a hip that isn?t situated properly (although I?ve just been told that Botox injections may help release some of her tight muscles). And her epilepsy isn?t completely under control. I often marvel, however, that it is her ability to cough that has kept her alive this long. I never realized what an important skill that was until years ago. A friend of mine told Elizabeth, ?You are such a good cougher. Keep it up you clever girl.? Knowing how depressed I was over her severe handicaps, I used to think my friend was just trying to highlight something Elizabeth could do well in order to make me feel better. I finally asked her why she was so impressed by her coughing. She replied sadly, ?My niece had a muscular disease that made her unable to do so. She needed continual suctioning but eventually died. That was over ten years ago and our family still hasn?t recovered.? Ever since then, I too marvel every time Elizabeth coughs ? she is working her hardest to stay with us. And according to her developmental evaluations, she is no longer mentally a three month old, but more like a six to nine month old. She is getting smarter!

But we deeply love Elizabeth for who she is and not for what she can or cannot do. Nevertheless, Jim and I continue to bring the Lord's promise of healing ever before God. We have solemn concerns about Elizabeth's future if God delays her healing. Muscles continue to tighten, twisting her body, and we have been warned that the remaining curve in her spine could cause significant troubles later, like interfering with her bowels. One doctor said, ?It?s like she?s standing in the middle of the road with a Mack truck barreling down on her.? For us and parents like us, believing that God performs miracles is our only hope in this day-to-day struggle.

Jesus never scorned the blind or the lame for coming to him for healing. In fact, he commended them for their persistence and faith. Jesus said that we ?ought always to pray and not lose heart? (Luke 18:1). Yet fourteen years have passed with few dramatic results from our prayers. But there is one Bible story that keeps me steadfast. It is the parable of the persistent widow. She kept coming with her pleas to an unrighteous judge. Frustrated, the judge finally granted her request simply in order to be rid of the widow?s constant pestering. Jesus said: ?And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? I tell you, he will see that they get justice, and quickly. However, when the Son of Man comes, will he find faith on the earth?? (Luke 18:7-8). I want God to find faith on this earth. I want him to find it in me. This is true even if I am one of those who are added to those who were ?commended for their faith, yet none of them received what had been promised? (Hebrews 11:39).

Someday Elizabeth?s suffering will end. And so will ours. When Christ returns, ?He will wipe away every tear. There will be no more death or mourning or crying or pain? (Revelation 21:4). While Elizabeth has life, I find great peace in knowing that with therapy, prayer, and fun (having as much of that as possible), we are doing all we can to help her get the most of out of life ? and the most for us. I learned that at Elizabeth?s classmate?s funeral when her mother rose to speak to the audience. She said something like, ?My daughter is in a better place. I have no regrets. I did the best I could to take care of her.? I want to be able to say that should Elizabeth die before us.

I am continually excited by all that God is teaching me about trials, perseverance, and compassion. No matter what I go through, the most important goal is to love God with all my heart and to love others as myself. To take care of those weaker than myself.

Recently Elizabeth was very ill, possibly with pneumonia. After sitting with her on my lap in the bathroom for several minutes, while running a hot shower to help her breath, I called for Jacqueline. ?Jackie, can you tell your dad to come and get Elizabeth. I can?t stand sitting in this heat anymore.?

?That?s O.K., Mom, I?ll sit with her in here.? I plopped Elizabeth?s large, awkward, difficult-to-hold body on her lap and left the room, overwhelmed by the love Jackie has for her sister. Earlier that day Jacqueline had willingly placed Elizabeth?s head on her lap while sitting on the couch watching T.V. With a cupped hand, she thumped repeatedly on Elizabeth?s chest in an effort to break up the pneumonia. I recalled how hurt I once was that the Jacqueline couldn?t play with her younger sister in the traditional sense. That doesn?t seem to matter anymore.

I now write every morning before work, usually at a coffee shop, so I can concentrate uninterrupted by phone calls and chores. With the completion of Ever True, I have dusted off this Elizabeth manuscript and will try again for publication. Although Good Housekeeping has yet to offer me a spot as a columnist, I forge ahead with my story-telling. I may not become a famous author until after I?m dead; nevertheless I am compelled to record each new chapter of my life! The only thing I really care to hear from God at the end of my life is ?Well done, my good and faithful servant. Enter into my rest.(Mt. 25:21)?

 

Thanks for reading about my Elizabeth. Please give the disabled child in your life a kiss and hug from me.

Lisa Saunders, Suffern, NY

?Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden light.? Matthew 11:28-30

If you are interested in the light-hearted account of Elizabeth and her big, old homeless dog, see an excerpt of my memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV", at http://anythingbutadog.blogspot.com/ "Anything But a Dog!" also contains strangers and pets who helped us as well as information on how to prevent Elizabeth's disabilities. Unfortunately, OB/GYNs still do not routinely warn women about the virus. It is often found in the saliva of toddlers so women need to be careful not to kiss them on the mouth or share utencils with them. Other stranges in ?Anything But a Dog!? include those that rallied around Elizabeth when she and I were trapped on a train during Hurrican Floyd. To purchase "Anything But a Dog!"contact me directly at saundersbooks@aol.com (I accept PayPal or check) or purchase by credit card through the National CMV Disease Registry (where a % goes to CMV research) at http://www.unlimitedpublishing.com/cmv/ or purchases by credit card through Amazon at:http://www.amazon.com/gp/offer-listing/1588329968/ref=dp_olp_collectible?ie=UTF8&qid=1233413673&sr=8-1&condition=collectible To watch me read a short excerpt from my book about Elizabeth and her dog, visit: http://www.youtube.com/watch?v=rIDJZkVYhnc

To watch my short TV news interview about Elizabeth, her dog and CMV prevention, please click into: http://www.wusa9.com/video/default.aspx?aid=70445&storyid=80502

The Times Herald Record wrote about my life with Elizabeth and my work in CMV prevention, in the following article: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

To meet other parents who have been in touch with me about their children, visit my guestbook at: http://www.authorlisasaunders.com/pageemail.htm

To hear me talk about raising Elizabeth for 52 minutes, listen to my radio interview at: http://www.achieveradio.com/archplayer.php?showname=Fearlessly%20Speaking%20%20with%20Jacqueline%20Wales&ShowURL=http://audio.achieveradio.com/fearless-fifties/Mar-08-2009-at-02-00PM---Fearlessly_Speaking.mp3

 

 

 

 

 

 

 

 

Elizabeth (around age 3) and I Elizabeth (age 15) with sister Jackie Coping with Elizabeth's Disabilities

Findng Sanity Through Scriptures and Strangers

 

 

 

 

 

 

"Writing Brings Healing the Soul"

The moment I gave birth to my daughter Elizabeth in December of 1989, I felt a stab of fear?her head was so small, so deformed. Within 12 hours, I was told she had been profoundly disabled by congenital CMV (cytomegalovirus). The neonatologist said, ?If she lives, she will never roll over, sit up, or feed herself.? He was right.

Writing (and Scripture) was how I dealt with my initial shock and grief--organizing my thoughts of despair by getting them down on paper stopped them from endlessly swirling around and overwhelming me. Getting my revelations and stories inspired by Elizabeth published made me feel less alone as I connected with others. Sharing my story with others not only healed my own soul, but according to the letters I received from readers, my candid thoughts were also bringing some healing to them. Eventually, even my sense of humor returned and I found that I was able to start writing about other things.

Many writers have asked me, "How can I get my story published?" In order to share what has (and has not) worked for me, I've written a FREE e-book, "How to Publish and Promote Your Work," to help others find the same satisfaction I felt when publicly sharing my thoughts. Please see my FREE e-book on my Web site at: http://www.authorlisasaunders.com and click on the "Get Published" button.

When trying to get a non-fiction book published, it is required to submit a book proposal. The publisher for my recently released book, "Anything But a Dog! The perfect pet for a girl with congenital CMV," which is about a big, homeless dog?s devotion to my disabled daughter, gave their permission for me to include my book proposal in my free e-book. Readers can use it as a guide for their own proposals.

 

I didn't put my terribly dark thoughts into "Anything But a Dog! The perfect pet for a girl with congenital CMV," because I wanted to share the fun side of Elizabeth's life. Despite living in the mind and body of a three-month-old, she did, after all, have a good, fun life, and I in turn, had a rich and rewarding life with her. But since "Anything But a Dog!" has been released (see http://anythingbutadog.blogspot.com/), I?m being contacted by parents who are sometimes in severe distress over their child's disabiliites or poor health and are in need of some extra coping skills.

 

 

 

I found my biggest help from above. Despite wrestling with God the first year with ?Why me??, I was often comforted by an act of kindness from a stranger (I always attributed God with sending me that person) or from a particular Scripture that seemed meant just for me and my particular anguish at the moment. The first several months after Elizabeth's birth and diagnosis, I wallowed in the bitterness and suffering of others, especially in Books of Psalms and Job where I found: ?My days have passed, my plans are shattered, and so are the desires of my heart.? Job 17:11 The Scripture that helped me begin my road to recovery from deep depression is "Perfect love casts out fear" (1 John 4:18). I dwelled on that when I was first frozen in terror over Elizabeth's forcasted bleak future. Although I prayed for a miracle all the time, I began thinking that I needed to concentrate on loving and caring for her at that moment and not dwell on what tomorrow could bring. I found it to be so true when Jesus said, "So don't ever worry about tomorrow. After all, tomorrow will worry about itself. Each day has enough trouble of its own? (Matthew 6:34). It sure does!

 

Examples of strangers who held out their hands to me or to Elizabeth are the tattooed carnival man and an elderly, overweight black women. One afternoon, struggling with Elizabeth?s wheelchair through the muck of an upstate county fair, I was feeling depressed because children were staring at my little girl who could not even hold up her head. ?She looks funny,? kids said loudly to their embarrassed parents. Sadly, it was true?with Elizabeth?s small, misshapen head and need to breathe through an open mouth, she was no beauty queen. In the midst of my dark thoughts, a heavily tattooed carnival man, who looked like he had been drinking for years, ran from behind his game booth and came right up to me. My alarm melted into tears of gratitude when he handed me a large, brown teddy bear from his stash of prizes and said, ?I want your little girl to have this.? It didn?t matter to me that Elizabeth did not have the physical skills to play with a toy?all that counted was that she mattered to someone. Someone who appeared to know what it was like to live a life some considered at the bottom of the barrell.

Another time, and this is an excerpt from my book, ?Anything But a Dog!?, I was in the emergency room because I couldn?t get Elizabeth?s seizures under control. Once she was stabilized, I needed some adult conversation so I reached out to the elderly black lady in the next bed, separated from us only by a white curtain. Drawing the curtain open so she would know I was speaking to her, I asked, ?Why are you here??

?I was eatin? some Chinese food and I felt a heart attack comin?,? she replied, seemingly happy to strike up a conversation. ?My friends called 911. The doctor, he says I?m havin? a heart attack because I?m so fat, but I say it was somethin? they put in that Chinese food! Now why is that precious little girl here??

?Seizures,? I said.

?Why, she?s too pretty to be havin? them seizures!? She went on to tell me about her handicapped son who also suffered seizures. He had passed away years earlier. ?My son?he was a good boy. I sure do miss him.?

He was lucky to have such a jolly soul for his mother. And she was lucky to have him?he probably never told her she was fat!

 

 

 

The following excerpts are from the book I wrote about Elizabeth called, ?Riding the Train with Elizabeth? (that book is no longer in print). That memoir is more about my thought and prayer life as I tried to cope with raising Elizabeth. It is written from a very different perspective than my current light-hearted one, ?Anything But a Dog!?, which is tells the story of how God brought the perfect companion into Elizabeth's life.

My thoughts that follow are meant for parents of disabled children or those who work with or care about them:

PREFACE

As I've reread this story, I am amazed how many adventures Elizabeth and I have had ? both good and bad, but on the whole, exciting. Most adventures entailed meeting strangers who inspired me, comforted me, or simply gave me a hand when I found myself in some very desperate situations.

I always wanted an adventurous life, but I was hoping for something more glamorous than raising a severely handicapped child. Yet when I read of people surviving places like the South Pole, or even conquering them, I realize they didn?t have much glamour either. Their adventures were also filled with terror as well as thrills ? and deep heartache. It took me a long time to realize that raising Elizabeth fit the criteria of a true adventure.

I felt called to write this story. It started as a series of form letters to my family and friends to update them on how my husband Jim and I were doing after our second daughter, Elizabeth, was born with a severely damaged brain. I wanted them to know how to treat us and in what light to view Elizabeth. It was much easier to write about our circumstances than to wait for loved ones to ask me terribly painful questions like, ?How are you doing emotionally?? or ?What is Elizabeth's prognosis?? or ?Is she sitting up yet?? I could not bear reflecting on those topics over and over again. I preferred to let everyone know through my letters, so that when we spoke, we could speak of more pleasant matters. My soul needed to see cheerful faces around me, not ones filled with awkwardness and pity for our plight. Jim and I wanted to be treated like a normal family.

As I turned these letters and additional thoughts into a readable book, my faith grew stronger. I remembered the many ways God healed my soul and gave me hope through scripture, friends and strangers. I needed those reminders, especially during those times when I doubted God's promise that ?all things work together for our good.? The writing process then became an important part of the healing process.

This story lays my heart bare. My hope is that it will let others know how to relate to families like ours; to inform professionals in special education that their words have the power to either hurt or heal; and to help people experiencing their own hardships to find hope and laughter ? and adventure ? in the midst of adversity.

My book is also for those who want to see how one woman learned to accept life's difficulties, rejoice in God's gifts, and overcome crises of faith and family. It is for those who still believe in miracles.

.2.

Shattered Dreams:

Elizabeth's Birth

?My days have passed, my plans are shattered,

and so are the desires of my heart.?

Job 17:11

As soon as I saw my newborn baby, I felt a stab of fear. I knew there was something very wrong. My immediate thought was, ?Her head looks so small. So? deformed.?

Prior to that moment, I thought I had the perfect life. Happily married, I had a healthy three-year-old daughter, and enjoyed being a stay-at-home mom. My biggest preoccupation was getting rid of the bathtub ring before my in-laws arrived for a visit to our Maryland home. My husband Jim and I enjoyed life together and waltzed through most of it with a sense of humor ? until the day our second daughter was born, a week before Christmas, 1989. How cruelly ironic it was, that the birth of such a crippled child seemed to mock the celebration of the perfect child, Jesus. Instead of sending Christmas cards filled with words and wishes of joy, I posted an identical form letter to members of our family after the first of the year:

Dear Family and Friends, January 1990

Sorry your Christmas card is so late, but we wanted to wait until the birth of our baby to write.

Elizabeth Ann Saunders was born on December 18th at 10:00 P.M. She weighed five pounds and thirteen ounces. The rest of my announcement is not a happy one. Elizabeth has profound microcephaly ? a very small and underdeveloped brain. A CAT scan of her brain reveals extreme damage throughout.

The first few days were a nightmare for us. Of course we are in shock and our hearts ache for our daughter. Listening to the doctors predict her future lack of development is hard to take.

Initially Elizabeth had poor circulation and often stopped breathing. But we serve a God of miracles and her life-threatening infirmities were healed. We brought her home the day after I was discharged. Her doctor was quite surprised by her immediate progress. She looks around a lot and loves to be cuddled. Although her brain is still very small, we have faith she is going to develop better than the doctors predict....

This was my first form letter chronicling Elizabeth's life and our family's adjustment. Before Elizabeth was born, I imagined writing the typical Christmas letter highlighting all of God's blessings from the previous year. Although I knew, through my knowledge of scripture, that Elizabeth's arrival was a blessing, I felt far from blessed. I felt stricken.

Despite the somewhat optimistic tone of my letter, when Elizabeth's extensive brain damage was confirmed through the CAT scan, secretly I begged God to kill me. I also chose to leave out of the form letter the doctor's declaration that Elizabeth was ?severely? retarded, would never be able to roll over much less sit up, and was also possibly blind and deaf.

To give birth to a developmentally slow child would be tough enough, I imagined, but to a child who would have absolutely nothing going for her in life seemed unbearable. This child would grow into a helpless, twisted, deformed adult who would be stared at and scorned in public. This child would need constant care for the rest of her (and probably my) life. Elizabeth's CAT scan promised us a child who would forever change our happy, carefree life into one of unending heartache and toil.

Why me? Why did God pick me out as the mother who should endure this calamity? I was afraid my feelings of horror were permanent ? that I would never again be happy or able to function normally. Only my death could free me.

So, with a Job-like plea, I begged God to strike me dead.

But God did not kill me. Instead, I began the greatest adventure of my life ? on a journey that took me from the deepest darkness to the brightest light. Through the help of Scripture, family, friends, and strangers, God delivered me from despair and gave me hope. But it took me a while to get it?

.4.

Then Came Darkness

?Yet when I hoped for good, evil came;

when I looked for light, then came darkness.?

Job 30:26

On Christmas Eve, almost exactly a year before Elizabeth was born, I lost a baby through miscarriage. It happened as Jim, two-year-old Jacqueline, and I were traveling to New York to visit my parents for the holidays. After visiting a hospital to deposit the baby?s remains, we continued our sad journey, mourning our loss. The Christmas lights twinkled along the way, and Bing Crosby sang ?I?ll be home for Christmas? on the radio. Jim and I wept as we thought of our little one, who went home to be with the Lord for Christmas.

The day before, a sonogram had revealed an imminent miscarriage ? the baby was not developing normally. Knowing that God still performed miracles, Jim and I asked God to heal our child. While we were praying, however, I sensed we were meant to let the baby go. Although Jim still held out hope, I prepared myself, with sadness yet with a certain peace, to lose our child.

Though grieving, I felt God?s presence and comfort. Later I picked up the Bible and happened to flip it open to the cries of Job, another immensely troubled soul: ?Why did I not die at birth, and come forth from the womb and expire?...then I should have been at rest (Job 3:11,13). Would our baby have had a life so tortured that God in his mercy allowed it to die in peace? God often spoke to my heart through scriptures. I believed this was one of those times.

During the first few months after the miscarriage, seeing other babies brought immediate tears as I longed for what could have been. We wanted another baby as soon as possible, and Elizabeth was conceived three months later. An early sonogram revealed Elizabeth would be due on Christmas Eve ? exactly one year after we lost our last child. We felt such a miracle was a sure sign that God was planning a most blessed Christmas for us, easing the pain of our last tragic one. The pregnancy progressed normally. During another sonogram at sixteen weeks, we both experienced the joy of watching Elizabeth move around in my womb.

Jacqueline also eagerly anticipated her new role as big sister. She often affectionately patted my belly and said, ?Hi baby, hi baby. I love you.? I imagined my joy at seeing Jacqueline teach, love, and protect her new sibling. I could see them playing happily together on the floor. Although we did not know the baby's gender, Jacqueline was certain it was a girl. Jacqueline helped prepare her room while we waited for the baby?s arrival.

My friends celebrated the upcoming event with a baby shower. They also rejoiced with us that God had provided some comfort with another child after the miscarriage. With everything going so well, only joyful expectation filled my heart. I dismissed any fear that something could be wrong with the baby. Jacqueline was normal, and I was a healthy twenty-eight-year-old woman, so there was little to be concerned about. Besides, God was blessing us with this child; he would not allow us to suffer another tragedy. I opened my presents happily, unaware of the secret within me.

In contrast, when pregnant with Jacqueline, I worried about every little thing I inhaled and ate. I did not want to somehow be responsible for injuring a developing baby. I thought I could never handle being the mother of a child with deformities or mental retardation. When it came time to deliver Jacqueline, I asked Jim, ?Will you still love the baby if something is wrong with it??

He sincerely replied, ?Of course I will.? I believed him and hoped that I could love such a baby, too.

One of the most thrilling moments of my life came when I held Jacqueline for the first time. Next to the day when Jim proposed, I had never experienced such delirious joy. I could not believe how much I loved her right away. She was the most beautiful baby ever. Her red hair and blue eyes (Jim and I both have brown hair and green eyes) delighted and surprised me. I could not wait to deliver Elizabeth and experience that same incredible joy.

Elizabeth was born on Monday, December 18th, 1989. After the pediatricians cleared her lungs, they presented her to me. I felt sick. ?Her head looks so small ? so deformed,? I thought, ?Is something wrong with her??

The doctor said, all too matter-of-factly, ?Your baby's head is small ? she will have to be evaluated in the morning.? I knew what a small head meant ? a small brain. Elizabeth was also having difficulty breathing, so she was not allowed to remain with us for the initial bonding time a mother craves with her newborn. Jim and I tried to reassure each other that nothing was wrong, but fear overwhelmed me.

Jim eventually went home to get some sleep. All night long, I tossed and turned wondering what her evaluation would reveal. The next morning, the doctors still had not contacted me. I became frantic. Finally, a neonatologist came in and approached my bedside. He dropped the bomb: ?Elizabeth has profound microcephaly,? he began, ?meaning her brain is extremely small and damaged throughout. It does not even fill her small skull cavity. She is having difficulty breathing, her circulation is poor, and she cannot maintain her own body temperature. I don't know if she will live.?

Having pronounced the sentence and confirmed the wretchedness of my daughter's life, the doctor studied my face, looking for a reaction. I gave him none. I refused to have one. I decided this was not really happening. To my relief, the doctor finally left the room. I hoped he would not return.

When Jim arrived shortly thereafter, the neonatologist returned to give us Elizabeth's lifelong prognosis. ?If your daughter lives, she will be hospitalized for a while. Her arms and legs draw rigidly towards her chest, indicating a muscular disease (a general term for cerebral palsy). She will never roll over, sit up, or feed herself.? He continued dispassionately, ?Her color is bad, her cry is strange, and she startles violently whenever people touch her. I don't even know if she can see or hear.? He paused to give Jim and me a chance to say something. But we only stared at him silently. What could we say to a man whose attitude suggested that Elizabeth was one of the most disgusting examples of humanity he had ever seen? His words left us with no room for hope.

The neonatologist capped his cold forecast, ?Quite frankly, I don't think she's going to live.? Jim finally responded. He broke down and cried.

The doctor concluded that a virus had caused Elizabeth's birth defects. I probably contracted the virus cytomegalovirus within the first half of my pregnancy. Common and sometimes symptom less, cytomegalovirus may harm a fetus, but rarely to this degree.

The doctor's final remark before leaving Jim and me alone to digest this news was, ?Of all the cases I've seen, Elizabeth's is the worst.?

Another doctor from a prestigious hospital in Washington, D.C., examined her. His evaluation was similar, but he delivered it with more compassion. ?Perhaps you can place Elizabeth in a nursing home when she gets bigger.? I thought of the dying, immobile patients I?d seen in such places. I visualized Elizabeth lying on a bed with a little sign posted over her, reading, ?Reposition every two hours.?

I always knew that I could not handle such a trauma; now I began to prove it to myself. Contentment slipped away, and a depression of never-known dimensions settled in its place. I begged God to kill me ? to release me from this pain. First, I prayed to be struck by lightning. I became hopeful when clouds outside darkened, and I actually stood next to the window to wait. I had heard of a few rare cases where people had been struck indoors by lightning that passed through a window. But when no lightning flashed across the sky, I prayed instead for an earthquake. What a relief to be instantly crushed to death in the rubble. I just could not bear to live and see my baby grow as a crippled, deformed human being.

God ignored my pleas. No death. No escape. Just trapped. I desperately tried to stop thinking of myself ? Jim needed his wife and the girls needed their mother. The only thing that kept me going was God's promise ?that in everything God works for good? (Romans 8:28). I needed to believe ?good? would come from this trial, but I doubted I would ever be happy again. Realizing I probably had another forty-five years yet to live, my agony deepened.

The hospital moved me to a private room, since my weeping and wailing made it awkward for other new mothers on the maternity ward. Instead of enjoying Elizabeth's first days of life as planned, Jim and I entertained a host of doctors. Friends and pastors came to pray. The hospital's chaplain also visited. He humbly asked God for a miracle. He prayed, ?God, may I be so bold as to ask you to heal this little girl.? I appreciated this stranger's prayer, thankful that he did not try ?encouraging? me with the usual religious platitudes, such as ?You must be very special people for God to give you a child like this.?

Jim fasted and prayed for God to spare Elizabeth's life, and to restore her brain. During a visit, our pastor recalled the gospel story from John 9, the time Jesus' disciples saw a man born blind. The disciples asked Jesus who had sinned, the blind man himself or his parents? Jesus replied, ?It was not that this man sinned, or his parents, but that the works of God might be made manifest in him.? With that, Jesus healed the blind man. According to our pastor, that story applied to our situation. Would Elizabeth's outcome be the same?

Jim was desperate for Elizabeth to live, regardless of her future. His only concern, aside from keeping her alive, was as he put it, ?To protect her from the cruel world she has been born into.? He did not want her to hear the doctors' unkind words. Jim's love and compassion for Elizabeth were beautiful. I marveled at the depth of his character ? a depth I had never realized. How could I have been so fortunate as to marry a man like him? Yet what would he think of me if he knew my terrible, secret hope ? that if God was not willing to kill me, perhaps he might let Elizabeth die?

Friends from church, Drew and Diane, came to visit. They had a three-year-old son Reid who was still recovering from a very traumatic premature birth. Like Elizabeth, Reid was microcephalic. He was also blind, had cerebral palsy, and needed to be fed through a stomach tube. Diane told us, ?Reid brings us a lot of joy. We are a very happy family.? Her words flickered the first spark of hope that life could be worth living again, regardless of how Elizabeth developed. But that spark dimmed in the darkness that suddenly overshadowed our lives.

Jim and I visited Elizabeth several times a day. Her room was all the way at the other end of the building. It seemed so far away. I was too weak for much walking, so Jim pushed me in a wheelchair. As we progressed down the long hallway between our room and Elizabeth's, dread grew and overwhelmed us. How would she look? What new horrible diagnosis would the doctors reveal?

Nurses stared at us along our route and offered their sympathy. As Jim and I journeyed on, the walls and lights appeared hazy and distorted. We barely noticed the Christmas decorations hung along the hallway. At one point, I commented hopefully to Jim, ?Maybe this is all a bad dream. Maybe this is not really happening.?

?It definitely feels like a bad dream,? Jim responded. ?Maybe you're right.? I found comfort in entertaining that possibility.

But as we stopped to drink from a water fountain, the chill of the water brought reality back. This was not a dream. This was a living nightmare.

I hated the hospital's intensive care nursery with its beeping monitors and grim doctors. Elizabeth should be in the cheery nursery, as Jacqueline had been, behind large panes of glass where the newborns are openly displayed like beautiful bouquets. In front of these windows there is much celebration as parents, friends, and relatives ?ooh? and ?aah.? In contrast, Elizabeth was hidden behind a door with a tiny window, away from the mainstream. Once inside the door, we entered a room with a huge metal sink where we dressed in hospital gowns and scrubbed our hands. Before entering the nursery, we braced ourselves for yet another encounter with her doctors. Although the thought was irrational, the doctors became our enemies. They offered little help or hope. They merely gave their forecast of doom. Near Elizabeth lay a newborn with Down syndrome. Her young mother hovered anxiously over her, looking as ill as I felt.

I thought back several years to the Christmas Jim proposed, asking, ?How would you like to spend the rest of your Christmases with me?? He never mentioned how difficult Christmas could be.

.5.

Elizabeth's First Days

?If the only home I hope for is the grave?where then is my hope??

Job 17:13-15

Elizabeth lived in an isolette ? a small clear plastic bassinet ? in the intensive care nursery. She was hooked up to an I.V. and several monitors. I repeatedly averted my eyes from her misshapen skull. Her cheeks were wider than the top of her head. Her limbs drew up, her tongue protruded slightly, and her eyes barely opened. She looked pathetic. ?Oh God,? I prayed, ?please help me love her.?

When Jacqueline first saw her, she exclaimed, ?She's going to have a big head just like me.? Jim believed that God prompted her to say that as a comfort to us. But at the time, it was a painful reminder ? the doctors said her head (her brain) might never grow, or at best, grow slowly.

Jacqueline was so proud of Elizabeth. She had no reason not to be, since children often take such tragedies better than adults. Nevertheless, we wanted to keep Elizabeth's prognosis to ourselves for as long as possible. Jacqueline waved toys in her face and often kissed her. Eventually, the nurses unhooked all her monitors, except the heart one, and allowed us to hold her. Despite being sickly and helpless, Elizabeth's sweet little spirit began to shine through. A small bit of happiness crept into my heart like a glimmer of candlelight in a mammoth cave. ?My poor baby,? I thought. ?While she was minding her own business and developing in what she thought was the safety of my womb, that virus savagely attacked her central nervous system.? I had trusted God to protect Elizabeth while she was being formed. Why hadn't he?

On the first full day after her birth, as the doctors told us we needed to decide whether or not to put her on a respirator, her breathing deteriorated. Thankfully, Jim and I never had to make that decision. By that evening, her respiration, circulation, and temperature regulation problems corrected themselves. This first of many little miracles broke like a wave across her.

Unlike Elizabeth's doctors, her nurses maintained a positive and kind attitude. ?Elizabeth loves to have her head rubbed,? they encouraged. ?She's a good eater.? Elizabeth was not a ?bad prognosis? to them, but a little girl worthy of affection. These women planted seeds of love for my daughter in my heart.

On the fourth day, Thursday, the neonatologist told us Elizabeth could go home soon. He was surprised she had stabilized so quickly. He warned me, however, that a damaged brain could not be trusted ? she could die suddenly at any time.

Elizabeth's pediatrician later told me that while in the hospital, her brain appeared to grow, expanding upward to the top of her skull (her skull was originally so small the doctors feared she was anacephalic?without a brain). He found that hard to explain, but Jim and I knew God had intervened. Although her head was still very small, she won a victory over death. Before we left the hospital, Elizabeth's pediatrician said, ?God has chosen you to raise Elizabeth.? He was the first doctor to suggest that Elizabeth's condition was not some hopeless, meaningless tragedy.

We brought Elizabeth home Friday morning, December 22. Walking through the door of the intensive care nursery to collect her, I heard a strange, pitiful cry. ?What's that?? I wondered. I shuddered when I realized that the odd cry represented Elizabeth's feeble protest to a bath. Before leaving, I saw the family of the baby girl with Down syndrome. Still not sucking, the baby was having heart trouble. The grandmother held the child lovingly, trying to coax her into drinking from a bottle. Approaching her, I said, ?Your granddaughter seems like such a lovely girl.?

The grandmother, beaming with pride, said, ?Oh yes, she is a very special little girl.? This grandmother's love cheered me and filled me with hope.

Elizabeth came home without much fanfare. She had defeated death, for the time being, but my horror over her prognosis persisted. But I fought through it; Christmas preparations needed to be made. A second Christmas had not turned out as hoped.

Now home, Elizabeth slept in the bassinet next to our bed. Jim could not sleep fearing she would stop breathing. Mornings were worse. When I awoke, the first thing I saw was her small skull. The moment I saw it, renewed feelings of dread and sickness flooded back. Her prognosis re-awoke with me, taunting me throughout the day by playing itself over and over again, like a broken record. At times, my heart cried out in unison with Psalm 73: ?All in vain have I kept my heart clean and washed my hands in innocence. For all the day long I have been stricken, and chastened every morning.? 

Shame began to set in. I was more consumed with how Elizabeth's condition affected me than how it affected her. I feared I would never be the kind of mother an innocent child like her deserved. Jim, on the other hand, loved her selflessly, giving little attention to his own pain. He was just angry at the doctors for saying such mean things about her. It's sad, but some fathers abandon their families in situations like these. They cannot bear the agony and shame of nurturing a child who is not a ?chip off the old block.? But when I watched the way Jim looked tenderly upon Elizabeth, cradling her in his arms, I knew that Jim would be a comfort, rather than a source of additional heartache.

In accord with our church family, Jim and I believe that the Bible is the word of God ? a God of mercy with healing power who still performs miracles. ?Is any among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord; and the prayer of faith will save the sick man and the Lord will raise him up? (James 5:14-15).

If ever there was a time to take God at his word, this was it. So on Christmas Eve, six days after her birth, we called in the church elders. They prayed over her and anointed her head with oil in the name of Jesus Christ. They prayed the ?prayer of faith.? They prayed believing she would recover, but sadly she did not look any different. In the sixteenth chapter of Mark's gospel, Jesus promised that believers shall lay their hands on the sick, and the sick will recover. There is no promise, however, that they would recover instantly. Jesus taught ?whatever you ask in prayer, believe that you have received it and it will be yours? (Mark 11:24). Instead of the indescribable joy of seeing Elizabeth healed as we prayed, it looked like I would have to settle for receiving the promise of her eventual healing.

Through Elizabeth's first few weeks, she ate and slept well. She was no trouble at all. She seemed to have quite a nice little personality. Although she would not make eye contact with us, which was disturbing, she looked around and liked looking at our Christmas tree. Jacqueline loved to hold her and lie next to her. Our families came down from New York to visit. They cuddled her and spoke cheerfully to her. I was relieved ? it was obvious they were not going to ignore Elizabeth in an effort to escape their pain.

Friends called but had no idea what to say. What does one say to people whose dreams have been shattered? The flowers we received were not in congratulations, but in sympathy.

Most parents cannot wait to show off their newborns, but I felt like hiding. I dreaded each introduction. I did not want people to see she was ?different.? My pain deepened whenever people greeted her with long, pitiful faces.

Introducing a severely brain damaged child to the world is vastly different from presenting a ?normal? child. There was little rejoicing over the newness of Elizabeth's life. When we had introduced Jacqueline, people noticed her bright, alert eyes and asked, ?She doesn't miss a thing, does she?? When people first met Elizabeth, they noticed she made little eye contact and asked, ?Is she blind??

Initially, whenever I looked upon Elizabeth, my heart broke afresh. I could not see past her prognosis. ?The prognosis? became more of a person than Elizabeth herself. Inquiring people would ask, ?What do the doctors say? What is her prognosis?? I hated to answer. I hated the doctors and their prognosis. It was too hideous to speak. This ?prognosis? was like a living creature relentlessly torturing me.

When I finally unpacked my suitcase from the hospital, I came across Elizabeth's baby book. I opened it to see blank pages entitled ?Baby's Birth,? ?Baby's First Day,? and ?Parents? First Impression.? How could I possibly record the truth? How could I write that I asked God to kill me rather than endure raising a child with severe disabilities. Later I received pictures taken at my baby shower. I couldn't bear to look at them. The Lisa in the photograph looked so happy, so hopeful. Now, it seemed all that joyful expectancy had been a cruel joke.

Bitterness leaked into my heart. I envied those who gave birth to normal children. When Jacqueline's nursery school teacher celebrated the birth of her first grandchild, she wore an ?I'm a proud Grandma? button. I cried. No one wore an ?I'm a proud anything? button for Elizabeth. It would have been so much easier if I had just adopted her knowing full well her condition beforehand instead of giving birth expecting something else. I had given birth, not to a baby, but to a tragedy.

Bitterness and envy ? sins against God ? rot away one's very soul, but these emotions wrapped themselves around me. How could God allow such a blessed event to turn into this tragic nightmare that might never end in my lifetime? God's word says children are a gift and a reward, but I felt cheated and punished. I desperately needed God's help to overcome feelings of self-pity. Since God promised that all the events in my life would work for my good, I needed to know and appreciate what that good was. I began studying scriptures on the benefits of affliction.

Perhaps God intended to use Elizabeth's traumatic arrival to test me, the way the Israelites were tested in the wilderness. God let them suffer many hardships to humble them and reveal what was in their hearts; to learn whether they would keep his commandments or not (Deuteronomy 8:3). Having an imperfect child is very humbling, and I would find out if I loved and trusted God as much as I thought I did.

In fact, I re-evaluated my entire faith. Is God loving, and if so, does God love me? Does God even exist? Instead of harboring bitterness, I needed to respond to this calamity in the manner of Job if I hoped to please God. God allowed Satan to test Job by destroying his wealth, killing his children, and afflicting him with painful sores. To all of this, Job responded, ?The Lord gave and the Lord has taken away; blessed be the name of the Lord.... Shall we receive good at the hand of God, and shall we not receive evil?? (Job 1:21, 2:10). Job did not charge God with any wrongdoing, and eventually God greatly rewarded Job for his steadfast trust. I too wanted to trust God.

PART II

SURVIVING DOUBT AND DEPRESSION:

THE FIRST YEAR

.6.

Profound Challenges

?If your law had not been my delight,

I would have perished in my affliction.?

Psalm 119:92

Being home with Elizabeth the first few months was dismal. It seemed all I could do was rock her and read the Bible. The rocking chair and God's word were my only anchors to hope and peace. There were so many scriptures on healing. Maybe if I believed enough, Elizabeth would be walking by next Christmas.

Attempting to focus myself on the promises of God, and not on how impossible Elizabeth's situation appeared, I wrote scriptures relevant to our situation on index cards and carried them around. When rocking Elizabeth, or when preparing meals, or when taking her to the doctor's, or settling her into bed, I would read them aloud over and over again. My exercise in sharing scripture with Elizabeth began:

?Bless the Lord, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases? (Psalm 103:3). 

?This was to fulfill what was spoken by the prophet Isaiah, `He took our infirmities and bore our diseases'? (Matthew 8:17).

?And his name, by faith in his name, has made this man strong whom you see and know; and the faith which is through Jesus has given this man perfect health in the presence of you all? (Acts 3:16).

?I will put none of the diseases upon you which I put upon Egyptians; for I am the Lord, your healer? (Exodus 15:26).

?Then shall your light break forth like the dawn, and your healing shall spring up speedily? (Isaiah 58:8).

?The Lord will do everything He has promised because His love is constant forever? (Psalm 138:8).

?We have asked God that you be filled with the Spirit of God, with ability, with intelligence, with knowledge, and with all craftsmanship so that you may create beautiful works for the Lord? (Exodus 35:31).

?You can do all things through Christ who strengthens you? (Philippians 4:13).

Believers have laid hands on you and the elders anointed you with oil and prayed the prayer of faith so you are recovering. (Mark 16:17-18 and James 5:14-15)

Although my trust in God's healing promises grew daily, the truth was that my faith in her complete recovery was as much an infant as she was. I was still weak and sick at heart over Elizabeth's condition. Despite all my prayers, her head was still not visibly bigger, thus her brain was still abnormally small. But Elizabeth began making some noticeable improvements. At her six-week checkup her pediatrician claimed her appearance was unbelievably improved. Almost flabbergasted, he called in his nurse to see her. She was gaining weight and was in good health. Could God be doing more than I realized?

One month later, while lying in my arms, Elizabeth looked up into my eyes and smiled. I became instantly elated. We had connected. She could express love and pleasure to me. I told Elizabeth's pediatrician at her next check-up, and he was thrilled. He did not expect a girl like her to be aware of her surroundings. He gave God all the credit for this latest development. I now had something to be thankful for ? some proof that God was really going to do what his word promises. Little did I know that she had reached a plateau in her level of development that would last a very long time, testing my faith beyond anything I had experienced.

Everything, including my hope, seemed to stand still when Elizabeth was about two-and-a-half months old. Time marched on, but Elizabeth lagged further behind. Her development appeared to stop altogether. Her prognosis taunted me. ?See, I was right,? the personified prognosis seemed to say. We were not experiencing those little miracle improvements anymore. She only made eye contact occasionally and showed little interest in toys. Her hands were clenched tight in tiny fists and her arms bent rigidly inward toward her chest. Her head still flopped about like a rag doll. She moved little, except to kick her legs occasionally.

New and horrible thoughts tormented my soul. I had been kidding myself. God doesn't really exist. If God does not exist, then of course Elizabeth will never recover ? and I am doomed. And worse, if God does exist, and I do not believe in him anymore, then I'll go straight to eternal hell after this earthly hell is over. To calm these frightening thoughts, I read the Bible again where it records how we can know God exists. First, we have the miracle of creation all around us. Secondly, our consciences testify to us of his laws. Looking out my window helped. All around me were birds, grass, and trees. It was more than just a cataclysmic explosion that created this beautiful harmony. As for conscience, I knew all too well about feelings of guilt when we disregard God's laws. Only a compassionate God could give us feelings of sorrow over our own sin.

Still, other tormenting thoughts emerged that needed to be dealt with. What if God does not really perform miracles anymore? I had never seen a miracle ? not of the magnitude that Elizabeth needed. I had prayed for people, and they had died anyway. If God did not see fit to spare those lives, how could I trust him to restore Elizabeth's brain?

One afternoon when I was overwhelmed and distraught by how much Elizabeth's symptoms matched her prognosis, I left Elizabeth with Jim and retreated to bed. I flipped open the Bible and read the story of Jairus ? a man who rejected the prognosis made over his daughter. When she was ill, he sought Jesus to heal her. Jairus and Jesus were on their way to Jairus' home when they heard that the girl had already died. Jesus said to Jairus, ?Do not fear, only believe? (Mark 5:36). Jairus chose to believe Jesus and reject the dreadful report he heard. I wanted to be like him.

When Elizabeth was first born, the doctors told us she would need to have her eyes, ears, and physical and cognitive development tested. The hospital gave our phone number to the Montgomery County health department and to a specialized hospital in Washington where the tests would be conducted. Elizabeth was now part of ?the system.? The doctors and county administrators told us what to do, instead of suggesting it. Suddenly, I was no longer the parent ? the system was. My desire to keep her home and deny reality did not deter the system from taking over. Any moment of peace I had concerning Elizabeth's condition was shattered every time a receptionist called to schedule an evaluation. I equated evaluations with bad news. I felt sick as I drove to her first eye appointment. Cytomegalovirus, the virus that created Elizabeth's deformities, often injures eyes.

To my relief, Elizabeth's eyes proved to be fine. Although the doctor could not venture whether Elizabeth's brain could interpret what she saw, he was convinced that the virus had not damaged her eyes. He was surprised and relieved. I thanked God for showing me a sign that he was intervening to make her well and whole.

The trip to Children's Hospital for Elizabeth's developmental evaluation appointment sickened me. I already knew she was barely developing. Why put words to it? Why not just drive toward my own execution? We drove through a dangerous and congested section of Washington, D.C. ?Maybe I'll become the victim of a drive-by shooting,? I thought a little hopefully.

Hurting parents and afflicted children filled the waiting room. One newborn appeared hydrocephalic. One toddler displayed characteristics of Down?s syndrome. She played happily with her older sister. She could respond to directions and was able to get around easily on her hands and knees. Walking was clearly in her near future. I once thought I would be devastated if one of my children had Down?s syndrome, but now, after watching that little girl, I longed for Elizabeth to enjoy such mobility, despite mental delays.

Elizabeth's cheerful evaluator exuded kindness. She was pleased Elizabeth could visually respond somewhat to her environment. Much to our delight, she acknowledged that Elizabeth was responding to our voices, in other words, the evaluator agreed that Elizabeth could hear. She explained, however, that Elizabeth's muscle tone was clearly abnormal. Some muscles were hypotonic (too loose) while others were hypertonic (too tight). The evaluator prescribed physical therapy immediately. Physical therapy maintains that by stretching the muscles moving the trunk and limbs, the brain can be taught how movement is accomplished. Until the brain assumes these basic functions, keeping the muscles limber so the joints and bones will grow properly is important. The brain, through maturity, may eventually be able to send movement messages. If the child is not regularly exercised, the body may be unable to respond because the joints and muscles have lost their elasticity.

So began Elizabeth's physical therapy. A therapist, Becky, came to our house once a week to work with Elizabeth and teach me what to do. She instructed me to stretch and exercise practically every muscle ? from her tongue to her toes. Depression accompanied my first meeting with Becky. I did not want a therapist; I wanted a miracle. During the initial session with Elizabeth, an obviously concerned expression broke across Becky's face. I could no longer deny the severity of Elizabeth's condition. It was profound.

.8.

Fighting Depression

?How long must I bear pain in my soul,

and have sorrow in my heart all the day...

Consider and answer me, O Lord my God;

lighten my eyes, lest I sleep the sleep of death?

Psalm 13:2-3

Depression pressed in as I focused on any and all of Elizabeth's differences. How true it is that ?Hope deferred makes the heart sick.? (Proverbs 13:12) Elizabeth grew, but showed few signs of real development, and the trauma of her arrival remained with me. The anguished thought of a delayed healing panicked me. What if she had to sit in a wheelchair? What if she became funny looking as she aged? Job had been tested with physical infirmity for nine months. God had not healed Sarah of infertility until she was ninety years old. And I felt that another day would be too much. I simply could not bear the thought of Elizabeth developing into a twisted, drooling child. Now deep anxiety joined a cold depression. How long would it take for God to answer my prayers?

One day, I pulled into the driveway after returning from a doctor's appointment. I opened the back door, removed Elizabeth from her car seat and lifted her over my shoulder ? the usual way I carried her. Just then, I had a "vision": I saw us both, Elizabeth much larger and older, and me, still lifting her over my shoulder to carry her. I had never had a vision before, so I didn't really know if this was one. I shuddered and screamed in my head, "No! This will not be her life ? or mine!? I pushed it from my mind and went into the house.

The following day, I visited my next door neighbor Karen. She and I were good friends. She said, "I don't know how to tell you this, Lisa."

"What?" I insisted on knowing.

"Well, yesterday I was standing by the window, watching you lift Elizabeth out of her car seat and onto your shoulder. Suddenly I saw her much bigger. I don't know why I saw that or what it means."

I said nothing to Karen. I was stunned. I didn't want that vision to be a reality. It didn't fill me with acceptance. I wasn't even sure what it meant. All I knew is that I didn't want it to mean anything ? I didn't want it to come true.

The only source of real relief came from the Book of Psalms. Before Elizabeth was born, I occasionally read here and there in the Psalms, and I thought, ?How could somebody be this depressed?? But now I knew. The psalmists spoke directly to my pain and wrote things I would not dare say to God. They questioned his love and power. Their honesty helped me express my grief to God. I could relate to the psalmists? pain and feeling of abandonment as they waited on God's deliverance. Knowing I was not the only one despairing of life made me feel less alone in my anguish. Wishing for death was no longer a constant desire.

For hours I sat rocking Elizabeth and listening to sad music. Releasing my tears alone with her somehow comforted me. Elizabeth loved to be held and cuddled ? something Jacqueline never enjoyed. During these times my love for Elizabeth began to grow. Despite her abnormally shaped head, she was a pretty baby with big blue eyes and long lashes. ?She could not help being born this way,? I'd think. ?It is up to Jim and me to ease her journey through life.? I never wanted Elizabeth to be sorry she was born into our family, or born at all for that matter. My heart was beginning to warm again.

When Elizabeth was about five months old., we attended our church's weekend retreat. There our head pastor's wife asked how she could pray for me. I asked her to pray that I would feel God's love. I understood that God was refining my character through these trials ? that he disciplines us for our good so we may share in his holiness, but it sometimes seemed that he would kill me in the process. The lessons that God wanted me to learn were cloaked by overwhelming grief.

After one of the services, Terry, a fellow church member, approached. A few years earlier, her three-week-old son Jeremiah had been kidnapped from the hospital. Four-and-a-half months later, he was found and reunited with Terry and her husband. Terry said, ?You have been on my heart all day. God revealed to me that the pain you feel over Elizabeth is as deep as the pain I felt over Jeremiah's kidnapping. God wants you to know that he loves you and he wants you to feel his loving arms around you.? With that, she hugged me. Her arms, however, did not feel human ? they felt like the very arms of God. I was completely filled and surrounded, inside and out, by love. The presence of love felt incredibly strong, as if it were a supernatural being. It was a supernatural Being- it was God. I wept. God had not forsaken me.

During Elizabeth's first six months, the only things I found easy were rocking and music ? and reading. Everything else seemed too difficult ? cleaning and making dinner were almost beyond my mental and physical ability. Jacqueline spent a lot of time watching television. I took care of her basic needs, but my mind was so disordered and distracted by sorrow, I had little energy to truly parent her or have fun with her. Would I ever enjoy Jacqueline's childhood again?

Poor Jim! What a depressing wife he had haunting the house. I wondered if he regretted marrying me. When asked, he emphatically replied, ?Of course not. But I do wish you could spend more time thinking about us rather than being so preoccupied with Elizabeth. It's been a long time since we've had some fun ? some romance.?

I envied Jim for not viewing Elizabeth's condition as so serious that we could not move on and enjoy life. All I could do was rock in my chair and feel sorry for Jim ? sorry that he had to watch me wallow in misery. I seemed unable to snap out of it.

Thankfully, Jim remained patient, but would I remain this deeply depressed until Elizabeth was healed? It frightened me to think depression would only get worse if Elizabeth aged without improvement.

.9.

Driving Fear Away and Inviting Forgiveness In

?Blessed are the merciful, for they shall obtain mercy.?

Matthew 5:7

My friend Diane was one avenue God used to relieve my anxiety attacks. She had once suffered them because her son had physical challenges. I had an open invitation to call her anytime, day or night, if I needed her. One morning, at five o'clock, I felt unable to escape the clutches of my biggest panic attack yet. I just could not cope having a child with severe brain damage, and that was that. I thought of Diane. Hesitantly, I dialed her number. Barely able to breathe, I told Diane, ?I can't take this anymore; I think I'm going insane.?

?Lisa,? she said, ?you are not going insane; you will recover. You can handle this. You will feel normal again ? even happy.?

?How do you know?? I asked, hoping she had a good, solid believable answer.

?Because I feel normal and happy again. God has given me the strength I needed to love my son just the way he is and move on with my life.? Diane continued, ?I once thought I was going insane, too. Unlike you, I did not have anyone telling me I'd feel normal again. But in time, God showed me I could handle my son's handicaps today, tomorrow, and even next year if necessary. You just feel this way because it's all still new, and you don't know how Elizabeth's going to develop her first year. The more you get to know Elizabeth, the joy she brings you will overshadow the anguish you feel over her condition. What you feel now is normal and it will eventually pass.?

I calmed down as Diane spoke. It eased my mind to hear that kind of confidence from someone who had been there and survived. When my panic subsided, I was able to get off the phone and go back to sleep.

Another time, with an anxiety attack coming on, I asked a church friend to pray. Her prayer against fear and doubt brought immediate relief. The anxiety attack vanished, and in its place, I felt peace.

Directly confronting my doubts and fears worked immediately that time, but usually they dissipated gradually and then only as I meditated on certain scriptures. God promises that faith comes by hearing his word. I once heard that if you feed your faith with God's word, your doubt will starve to death. That is so true. The more I focused on scripture verses, the more believable they were, and the less afraid I was of the disheartening circumstance.

It finally dawned on me to confess my unbelief to God and receive forgiveness and help. That's what the father of the epileptic boy did in the gospel story. When the father wondered if Jesus could heal his son, Jesus said, ?All things are possible to him who believes.?

The father replied, ?I believe; help my unbelief.? Jesus then healed the boy.

I could approach God for help when doubts assailed me, or when the stress of Elizabeth's condition became too great. This realization eventually became a shield from anxiety attacks. Ultimately, love freed me from fear. One day I was reading a booklet on overcoming fear, and the verse ?perfect love drives out fear? (1 John 4:18) caught my attention. I should love more perfectly. If I concentrated on loving Elizabeth and my family by tending to their needs, then I would not have so much occasion to dwell on Elizabeth's condition; fear would lose its fuel. Putting this biblical verse into practice took my mind off worry and doubt regarding Elizabeth's future. Instead, I concentrated on performing deeds of love. Fear lost its grip on my soul.

Love is far more important to God than great faith. ?If I have all faith, so as to remove mountains, but have not love, I am nothing.... Love bears all things, believes all things, hopes all things, endures all things.... So faith, hope, love abide, these three; but the greatest of these is love? (1 Corinthians 13:2, 7, 13 ). My love for God and Elizabeth would help me endure all things and hope all things.

Faith does not come naturally. In most cases, it is God who helps us endure until the end. Abraham and Sarah had their doubts about God ever giving them a child, yet God helped their faith through repeated promises. Peter failed to reach Jesus on the water. Jesus did not let him drown; he reached out his hand and caught Peter. Through his word and the comfort and prayers of others, Jesus stretched out his hand and caught me.

With God's help, I was determined to follow the example of May Lemke, a woman I had read about years before in The Reader's Digest. May adopted a little boy named Leslie who was blind, severely retarded, and completely crippled with cerebral palsy. For years she prayed and believed God would grant a miracle. She spent hours talking to Leslie, giving him physical therapy, and teaching him to enjoy music. When he was approximately seven, he moved his leg in the lake behind their house. By the time he turned sixteen, he could walk when aided, but was still unable to rise out of bed alone. Incredibly, late one night, he got out of bed, walked to the piano, and began playing like a genius. Amazingly, he could not control his hands to feed himself, yet he played the keyboard beautifully. Other motor skills steadily improved, and he eventually learned to feed himself, use the toilet, and began to speak. The persistence of May Lemke encouraged me to press on in faith.

Despite encouraging testimonies that increased my faith in expectation of a miracle, from time to time I thought maybe there was something hindering our prayers. Perhaps our sin was keeping God from healing Elizabeth. I imagined a list of sins that would prevent us from receiving God's help. At the top of the list was unforgiveness. I harbored much resentment towards discouraging doctors who said things like ?Elizabeth will never do this, and she'll never do that....? These were mean people whose words tormented me. I harbored the same sentiment towards well-meaning Christians who wanted me to consider it a fabulous spiritual experience to raise a child like Elizabeth. ?You must be really loved by God to have a child like her,? they said. These were easy words for them, and hard ones for me as I watched their healthy children doing cute things.

I needed God?s help to forgive those people. My bitterness demanded and influenced my thinking, over and over again. I knew it was wrong to be so bitter. I had to get rid of those ugly thoughts. Yet each time I saw those people, I replayed their words, reawakening my resentment. Still, if I did not forgive them, God would not forgive me.

At our church picnic I became aware of how much ground I had lost in the struggle to forgive others. The picnic grounds were teeming with happy families with healthy children. I saw parent after parent who at one time or another suggested that Elizabeth's condition was a blessing from God. These were the very people who said that I must accept Elizabeth the way she is and stop expecting God to change her. Elizabeth sat in a crippled lump in her stroller unable to participate while their children ran around playing games with one another. This miserable picnic rekindled loathing for those parents and their warped notion of blessings.

With my cup of bitterness running over, I saw a friend and shared my struggles with her. She promptly instructed me to forgive them. Furthermore, she said I needed to go a step further and ask God to bless them. She reminded me to love my enemies and bless them, as the gospel instructs. Yes, I needed to bless these people. Together my friend and I thanked God for these people and for their children. We also asked God to continue to prosper them with good health. I truly felt the weight of unforgiveness lift.

Understanding the benefits of forgiveness, and seeing that I was capable of doing it, I began practicing forgiveness towards everybody ? even the doctors and people who added to our pain with their sometimes insensitive remarks. But Elizabeth's condition did not change. Maybe there was something else hindering our prayers.

Then I read a Bible passage promising health to those who give freely to the poor. It had been a while since Jim and I had directly given money to someone less fortunate (although we were always faithful to give to our church who in turn gives a portion to the poor). Perhaps we had grown so focused on our own problems that we were neglecting the needs of others right in front of us. A few days later, a destitute-looking couple at a fast food restaurant caught Jim's and my eye. The woman made funny faces at Jacqueline in an effort to start her giggling. She later came over and gave Jacqueline a soda. Being reserved about approaching strangers, I told the lady ?No, thank you.? I immediately wished I had accepted it, however, because the woman's feelings were genuinely hurt.

Much to my surprise, I saw this same couple walking by our house a few days later. What were they doing there in our neighborhood? Their plastic bags stuffed with clothes made it obvious that they were homeless. It must be providence. Perhaps God sent these souls to give us a chance to give alms to the poor. I could not miss this opportunity to obey God. Before they got too far, I ran out with Elizabeth to greet them. I told them the Lord wanted me to give them some money. Seeing Elizabeth's condition, however, they told me I should keep the money for her expenses. I assured them God meant them to have it. When I handed the woman the money, she took it, knelt in my driveway, and with tears flowing, gave thanks to God. Her husband did the same. I asked them to pray for Elizabeth. After doing so, the woman pointed a bony forefinger at me and declared in an almost hypnotic, mesmerizing voice, ?Elizabeth will be fine. All things are possible for those who believe.? With that, the couple left.

Jim and I never saw this couple again. To this day I can't decide if these were just indigent people or angels in disguise. Nevertheless, I was inspired by the experience, by which I believed God assured us that no sin barred Elizabeth's healing, but if there were, he would be sure to let us know so we could correct it. God would allow us time to grant forgiveness and be forgiven.

.10.

Thankfulness

?Offer to God a sacrifice of thanksgiving...

and call upon me in the day of trouble;

I will deliver you, and you shall glorify me.?

Psalm 50:14-15

A turning point in my lengthy depression came the first time Elizabeth, at eight months old, suffered excruciating and relentless muscle spasms that continued for days. Occasional spasms were normal, but the severity of these spasms now told me that they were something different.

Our prayers for her immediate relief went unanswered. Her body jerked constantly with hardly any rest between times. Crying constantly, Elizabeth was obviously in great pain. Was her brain damage getting worse? Was she dying? I no longer cared that she was incapable of doing anything. I just wanted her to rest in my arms contentedly again.

Efforts to comfort Elizabeth's tortured body were fruitless. Her regular pediatrician was not available, and his back-up, unfamiliar with her case, felt she should visit the hospital. I called the hospital in Washington, D.C., which had been treating and testing Elizabeth from birth. Their initial assessment was that she was probably having seizures and to get her to the nearest emergency room. ?Oh God,? I prayed, ?I can't take another problem. Where are you??

As I watched Elizabeth thrash about on the hospital examining table, I again seriously doubted God's love for us. How could God let her endure this suffering? How could this ordeal possibly work for our good? Except perhaps for a slight fever, the doctors could find nothing wrong with Elizabeth. She was not having seizures; her jerking was in response to some kind of pain. Prescribing an antibiotic, the doctor wished us well and sent us home.

Elizabeth's pain and jerking continued at home. I phoned my friend Diane. She knew the heartache of watching her child Reid suffer pain.

?Why is God allowing this?? I cried, demanding an answer from her.

Diane responded calmly and simply, ?I just trust God, even though I don't understand why Reid's pain is allowed to continue.?

I wanted to trust God as Diane did. Questioning God's promise that he won't give us more than we can handle, I called my mom. I told her everything would be so much easier if I were not a Christian. Unbelievers don't wonder why God allows pain and suffering. People who do not believe in a God who loves the world are not frustrated by belief in miraculous intervention. If I were not a Christian, I would not be expecting anything and would therefore not suffer the disappointment of hope deferred.

My mother replied, ?If you didn't believe in God, then you'd have no hope at all.? Mom was right; hope was the only thing that got me out of bed each morning. Somehow, I had to hang on to it. I once read somewhere that you must never take away someone's hope; it might be all they have. Hope for God's merciful intervention was all I had.

Exhausted from fretting about Elizabeth's spasms, I headed upstairs to nap while Jim took care of the girls. A book on the power of praise lay on my bed. I hadn?t put it there. Perhaps it fell off the shelf above. As I flipped through it, the book opened to a page that commented on Job's inquiry of God ? why was God allowing him to suffer such mental and physical agony? As the creator of the universe, God and God?s plans, thoughts, and power were far above Job's comprehension. It was not for Job to judge God's actions. Struck by God's magnificence, he repented of his disrespect. Job then entrusted himself to God's care, and began praising God.

Like Job, I began praising God. I desperately needed his presence. I thanked God for every good thing that came to mind: his love, his righteousness, his power to save, his Word, sacrificing his Son Jesus so that I wouldn?t have to pay for my sins. I even thanked him for this trial, recalling the psalmist's words that ?it is good for me that I have been afflicted, that I might learn thy statutes? (119:71). I asked God to comfort us until he released Elizabeth from her tormenting spasms. Although I was still terribly upset by Elizabeth's pain, I felt the warmth of God's presence around me.

Muscle spasms interrupted Elizabeth's sleep all that night. The following day, I took her to see her regular pediatrician. He quickly diagnosed her as having a simple case of gastroenteritis. The medicine he prescribed eased her pain immediately.

Maintaining my faith in God and his promises is an on-going battle, but with his help, I am learning to persevere. I hope one day to be so steadfast that nothing will move me ? no matter what trouble comes. Abraham and Sarah had their share of doubts, but God commended them for their faith anyway. That?s comforting.

Recovered from her bout of gastroenteritis, Elizabeth became her cheerful self again. For the first time, I enjoyed a stretch of days where Elizabeth's delayed development did not overwhelm me with sadness. My soul rejoiced. Before Jesus raised Jairus' daughter from the dead, he told her family that she was not dead, just resting. When tempted to become depressed over Elizabeth's condition, I reminded myself that her present disabilities did not mean she would never excel, develop, and overcome her challenges. She was just resting. Each child develops at a different rate ? Elizabeth's rate would be a little different from most!

Rather than fretting over what Elizabeth lacked, I devoted more time to appreciating the lovely things she possessed. She was quick to smile and slow to complain. So many things delighted her: the wind in her face, a bath with her sister, kisses from her family, and ice cream. She laughed hysterically when tickled or swung through the air. Unlike other siblings, Jacqueline and Elizabeth could not sit around and pass toys back and forth, or mill around the backyard together, but they enjoyed snuggling while watching a movie or listening to a story. Jacqueline's endless ballet performances in the living room were spectacular for Elizabeth. The more Jacqueline leaped, the better. And, of course, Jacqueline recognized what a great audience she had in Elizabeth. Elizabeth was the only one who would stay put until the end!

One day, Diane gave me Reid's old crawler. It was a cart designed by Reid's father. I leaned Elizabeth's arms and chest over the cart and watched. Within minutes she kicked her legs and pushed off. Elizabeth could move! Her face radiated with happiness and pride. I was as happy as she was for her newfound skill. Life was truly good.

December 18th, Elizabeth's birthday, soon approached. Her birthday marked the anniversary of the worst day of my life. Diane, remembering Elizabeth's birthday and my vulnerability to depression, phoned and said, ?Think of Elizabeth's birthday as a happy time to rejoice with her. Don't focus on yourself and how carefree you used to be.? I needed that.

We had much to celebrate on Elizabeth's first birthday. Foremost, Elizabeth had survived her first year. Despite limitations, she was the happiest person Jim and I knew. When we looked upon her, we no longer saw all her ?limitations;? all we saw was her pure, cheerful heart. We could not imagine being a happy family without her. I delighted in cuddling and kissing her, not because I was too depressed to do anything else, but because God gave me the unconditional love for her that I had prayed for so desperately.

Although Elizabeth's inability to walk still disappointed me, I rejoiced when she finally gained the strength to stand momentarily if supported. She occasionally lifted her head when I put her on her stomach ? also demonstrating her increased strength. Month after month, I quoted Psalm 3:3 to Elizabeth, about how the Lord is the ?lifter of my head.? When she was eleven months old, the Lord at last lifted her head. She could only hold it high for a moment, but it was a thrilling victory over the paralyzing prognosis of a year earlier.

There was another reason to celebrate ? I had survived! Now I knew firsthand that ?I can do all things in him who strengthens me? (Philippians 4:13). Incredibly, I knew happiness once again. I had honestly considered happiness a thing of the past. Although I battled sadness over Elizabeth's inability to play with her birthday presents, I began to feel normal, at least a little. I praised God for getting me through this year of walking through the valley of the shadow of death.

Elizabeth's therapist told me not to concern myself with Elizabeth's developmental level ? which, sadly, she put at only two months ? but to look at all the improvements she had achieved during this first year. Her arms moved slightly and she was more able to follow brightly colored toys with her eyes. Given the condition of her brain, these new abilities held out promise to us. So ended Elizabeth's first year of life. I genuinely believed the worst was behind us and the next year was bound to be better.

PART III

REBUILDING FAMILY LIFE:

THE SECOND AND THIRD YEARS

.11.

Writing

?The Lord is near to the broken hearted,

and saves the crushed in spirit.?

Psalm 34:18

It was over ten years before, during my brief stint as a high school newspaper reporter, that I first thought of becoming a writer. I read a book on how it was done, scrolled a sheet of paper down into my father's old typewriter, placed my fingers on the keys, and waited. But I couldn?t think of a thing to say! So ended my career as a famous author.

Creative writing never crossed my mind again ? until Elizabeth?s birth. It all started when I began keeping a journal. It became a repository of my darkest and bleakest thoughts. I also recorded scriptures that spoke to my troubled heart. I never told anyone how distressing their questions were about me and Elizabeth, but I told my journal. Concerned friends would call and ask, ?Is she holding her head up? Is she playing with toys? Is she improving?? It hurt to have to answer ?no,? and this kind of recurring questioning kindled bitter thoughts that God was not doing anything for her. Friends' sad responses accentuated the severity of Elizabeth's condition. Here I was boldly proclaiming God's promises, encouraging people to believe with us, yet Elizabeth was not really getting any better.

One day I recorded in my journal, ?This morning I woke up depressed because no matter how many new things Elizabeth does, she still seems to just lie there most of the time. I get discouraged and am afraid to get too excited by her little spurts of activity. Maybe the reason why I get distressed over people's worry and anxiety over Elizabeth is that it brings out my own anxiety ? which I then try to suppress. I want to dwell on the idea that she will be fine, but her current development indicates otherwise.? 

Any stares of strangers I to easily interpreted to say, ?You must be a disgusting person to have a child like that? or ?How could you take a child like that out in public?? Their stares also gave me a peculiar feeling that it was foolish to believe God was with us. Often, especially during the first year, certain thoughts were so dark I could not even bear to put them on paper. There was one stark thought that I never disclosed to Jim or my journal: ?It would be so much easier if Elizabeth just died in her sleep.? What kind of mother would wish that? Many magazine story titles read, ?A Parent's Worst Nightmare.? These stories often detail how a child had died. Yet here I was, actually wishing for a ?parent's worst nightmare.? Some stories about a child sustaining a brain injury, however, concluded that the possibility the child would live was worse than death. I did not want to think this way. Jim certainly did not. What was wrong with me? If Elizabeth died, he and Jacqueline would be devastated. Jim's darkest thoughts were ?What if Elizabeth dies?? Mine were ?What if she lives??

One mother I read of would sometimes imagine drowning her young handicapped daughter when giving her a bath. Her husband was shocked when he became aware of her secret wish. Although I never imagined myself actually doing this horrible kind of deed, I could relate to this mother's agony. At times it seemed like only my death ? or Elizabeth's ? could release me from the life-long care and heartache in store for me if God did not intervene in Elizabeth's life.

Despite my temptation to entertain the benefits of Elizabeth's death, I never wanted others to have similar thoughts about my daughter. I hated it when I sensed people thinking that way, which is what I thought when people asked questions like, ?Isn't Jacqueline's childhood affected by all the attention Elizabeth receives? Doesn't Elizabeth's care negatively affect your marriage? How does Jim feel about her?? I became angry as I imagined Elizabeth's funeral. People would quietly say behind my back, ?It's all for the best. She was such a burden to them, you know.? I became even more upset when I imagined people actually saying that to my face. I took measures to quell the thoughts of others that we would be better off without Elizabeth. I rarely told people of any medical crisis, of her lifelong prognosis, of the many desperate and prayerful nights we spent keeping her alive.

I controlled what people knew about Elizabeth through form letters. I wrote many letters sharing improvements she made, and encouraged people to keep up hope for her full recovery. I needed my family and friends to stand with us in prayer, to realize she was indeed a sweet and lovable little child. Their pity, if expressed to us, simply dragged us down. Through my letters, I wanted people to embrace Elizabeth, not resent her. My letters were also a way to record the lighter side of our lives. In time, my thoughts as well as my letters became more upbeat, an indication that I was less consumed by the enormity of Elizabeth's affliction. My life was reemerging and moving forward. There was much more in our day-to-day lives than ?the problem.? Writing about our family adventures and misadventures made me laugh again. And laughing felt good!

Elizabeth benefited from my writing as well. She often sat on my lap while I typed at my computer. She smiled as my arms made gentle movements about the keyboard. She got a kick out of watching the changes that took place on the screen. If Elizabeth could read, she would discover that her infirmities were not the only things troubling me. No longer in constant agony over Elizabeth's condition, the time had come to tackle other concerns. Weight loss was at the top of my list. I have always had to watch my weight, but after Elizabeth's birth, I paid little attention to it ? except perhaps to watch it go up. Sometimes eating a bag of cookies was my only pleasure. I was more concerned with surviving the day than with my expanding waistline.

.12.

The Stares

?Surely mockers surround me;

my eyes must dwell on their hostility.?

Job 17:2

Elizabeth's condition became more obvious as she grew bigger. She still could not hold up her head for an extended time. Her body was the size of a one year old, but that was the only thing about her that indicated her age. I still had to cradle her in my arms like a newborn. Her torso and neck were limp and she barely moved her stiff, drawn-in limbs. Her arm and shoulder muscles were too tight to allow her to reach toys. I remember being frustrated when Jacqueline, at an early age, would grab at everything in sight ? especially my dangling earrings. How I wished now to feel that familiar painful tug from Elizabeth.

New situations in public with Elizabeth were particularly painful during her toddler period because she was not ?toddling.? When Elizabeth was an infant, secured in her stroller or cradled in my arms, it was not immediately apparent to strangers that she was not normal. She simply looked like a baby with a funny-shaped head. People assumed she was much younger than she really was. Strangers love babies, and to be friendly, often question the babies? moms. I came to dread the inevitable ?How old is she?? question. When told, people's smiles vanished, as they tried to figure out what was wrong with her. One lady concluded that Elizabeth's poor development confirmed that her own child was a genius. She proudly held her son up so I could see for myself how much more advanced he was, even though much younger than Elizabeth. When hearing Elizabeth?s age or looking closely, some would turn away in disgust and murmur to their companions, ?Something's wrong with that kid.?

My anguish over the stares diminished over time. I went from wanting to die, wanting to hide her, to calling those who stared at her horrible names in my mind, to wanting to slap the starers in the face, to wanting to ask them, ?What?s your problem?? Finally, my attitude reached the plateau where I no longer cared about what other people thought.

Jim confessed that he hated the stares, too. ?I think she's so beautiful that it hurts to realize others think she looks `different.' Sometimes I feel like saying, `Don't you know its rude to stare?' I just wish I could take her out in public and blend in. I hate standing out.?

Diane Jones told me that when a person stares too long at her son, she says, ?My son's name is Reid. Would you like to meet him?? Sometimes the starer is happy to be introduced. Diane knows it is her job to make others feel comfortable around her son. She extends to them the grace they need, for she remembers well how uncomfortable she used to feel around children who are disabled.

Once I did decide to give Diane's noble approach a try on a particular family outing. Elizabeth and I were sitting on a blanket at an outdoor concert while Jim and Jacqueline were off somewhere. Elizabeth danced in her little way while I held her up. A child about six-years-old approached the edge of our blanket and stood still, mouth gaping, staring at Elizabeth. Her expression seemed to say, ?Ew, gross.? Restraining my slap-?em-in-the-face impulse, I thought of Diane and said, ?Would you like to meet my daughter, Elizabeth??

The girl shook her head ?no? and ran off. Well, that's one way of getting rid of rude gawkers. I know I should be more understanding, but rude children seem to upset me the most. Not only do I have to face the fact Elizabeth cannot function like them; I have to deal with their taunts. Sometimes children walk up to her and whisper to one another. One group of girls followed us around during a trip to the zoo so they could get a better look. One boy pointed to Elizabeth and yelled, ?Dad, look at the kid.?

Sometimes, much to my shame, I read the face of a starer totally wrong. Once a young child in Jacqueline's school stood staring at Elizabeth for a long time while she sat in her stroller. I tried not to care, but my irritation mounted and the ?what's your problem?? question kept entering my mind. Finally the girl spoke, ?She is so cute. Can I touch her??

?Oh God,? I prayed. ?Help me believe the best about people.?

And I often did see the best. Particularly from people who may be considered ?down on their luck.? I?ll never forget pushing Elizabeth through a fair past the carnival games. One young man, covered in tattoos and having the look of someone given in to alcoholism, ran from behind the game he was operating to catch up to me. ?Please,? he said, handing me a pretty stuffed bear from his inventory, ?please give this as a gift to your daughter.?

Sometimes, however, I encountered people who did not show their best. That was made obviously clear on one trip to the mall. Jacqueline, Elizabeth, and I were finishing a pleasant lunch in a food court, when a woman approached and asked, ?Is your daughter retarded??

Stunned by her intrusion into our happy little afternoon, I replied as kindly as I could, ?Well, we don't like to call her that.?

?She looks retarded,? she declared and walked off.

Not sure how to respond, I called after her, ?Thank you.?

Finding a bench, I sat down to collect myself. I was surprised that I did not cry at the remark that would have at one time crushed me. I was not even very angry. ?Wow, God,? I thought, ?You have really brought me a long way not to despair over that little exchange.? I decided, however, that I might really begin to think evil thoughts about that lady so I figured it would be best to protect my heart beforehand.

?Jacqueline, God says to pray for your enemies. Let?s pray for that lady, so I'm not tempted to be bitter towards her.?

?Mom, maybe she has a problem that we should pray for.?

?I doubt it, she looks normal.? She appeared intelligent and wore a nice tailored business suit.

Suddenly I heard a commotion behind me. Several people, including a policeman, argued loudly. At the center of the turmoil was the lady. When the lady stomped off, the others walked away. I just had to find out what happened.

?Excuse me, officer, can you tell me what was going on with that women? I ask because she said unkind things about my daughter.?

?Don't pay any attention to her. She's a problem here every day at lunch time. She comes into the food court and shouts insults at every one. Today she sat in the parking garage and blared the horn for half an hour.?

?Jacqueline, you were right.? I said as we returned to our bench. We prayed that God would ease her troubled soul, and then went on to enjoy the rest of the day.

Some encounters with strangers could be very pleasant. One Sunday, a woman in my church whom I did not know approached and asked, ?What's your daughter's name??

?Elizabeth,? I said. My stomach tightened as I waited for her to ask, ?Does she know what's going on?? or ?You must be a very special mother.?

?Well,? she replied, ?I just wanted you to know how beautiful I think her hair is.?

Stunned, I said, ?Oh, thank you.? How thrilling to hear something kind and unrelated to Elizabeth's other obvious characteristics.

Another major misread came when I was in a small prayer meeting in somebody's home. An older woman I had never met before kept staring, making me feel very uncomfortable. I was not thinking very pleasant thoughts about that lady. I had already come to the conclusion that most of the older women were thinking, ?In my generation, mothers who had kids like this hid them.?

Finally the woman spoke to me with tears in her eyes. ?I've been looking at your beautiful daughter. She reminds me so much of my own sweet child who died when she was only two.?

Now I had tears in my eyes. Yes, I was truly fortunate Elizabeth had lived, despite some of the heartache. I hugged Elizabeth close, thanking God for sparing her life and letting me enjoy her for longer than two years.

I too could be called guilty of staring. While strolling along the boardwalk early one evening, I saw an elderly couple sitting on a bench watching the sun go down. An empty wheelchair was parked nearby and their large, handicapped son was sitting propped up between them. They quietly gazed at the beauty unfolding before them while I quietly gazed at them. If the parents had noticed me staring, I wonder if they would have thought me rude. Or perhaps their age and experience had already taught them that to others, their little family was inspiring.

People have said similar things to me. ?I love watching the way your family cuddles and kisses Elizabeth. You all look so happy. And its obvious she knows she's loved.? One lady whispered to me in the middle of a women's church meeting, ?I noticed you didn't bring Elizabeth with you today and I thought that's great ? you really need a break. But then I felt as if God reminded me, `But don't you notice how happy she is holding and caring for Elizabeth? She will be rewarded one day for the love she has given her.' I just wanted you to know that. I do love watching you with your daughter.?

One thing I notice about families like mine is that we rarely approach one another in public. We do not say ?I notice you have a child like mine.? We are tired of people noticing we have a child just like someone else they know. With good intentions people approach me in church and say things like, ?I want you to meet my friend, so and so, who's visiting today, because you two have so much in common ? you both have a child with disabilities.? Usually ?so and so? and I just stand around feeling awkward. Most of us want to feel normal ? we do not want to talk about ?the problem.? We would much rather talk about other things, but there are exceptions to this rule. Sometimes I welcome talking with someone else going through the same thing ? it's nice not to feel alone. But usually I'd rather initiate the conversation than have it set up by a third party.

Late one evening I had trouble falling asleep. I had many things on my mind. ?Why did it have to be my child who was born like this?? ?How come this stuff never happens to movie stars?? I often see pictures of glamorous stars on the covers of grocery store magazines with their beautiful, healthy children. I flipped on the TV. as a way to deal with my insomnia. Julie Newmar, ?Cat Woman? from the original Batman series, was being interviewed. ?So you have a son,? the interviewer said. ?Tell me about him.?

A picture flashed on the screen. Her son looked to be a teenager with Down syndrome. Ms. Newmar mentioned his condition, but said he seemed perfect to her. He travels all over with her and is a great companion. So movie stars do go through what I go through. Somehow I felt less alone. Satisfied that I was not the only one in the world with a child with disabilities, I turned off the TV and fell asleep.

 

.13.

Growing Bigger

?Consider the lilies, how they grow; they neither toil nor spin;  

yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass which is alive in the field today and tomorrow is thrown into the oven, how much more will he clothe you, O men of little faith!?

Luke 12:27-29

During Elizabeth's second year, feelings of happiness became more the norm than the exception. We were a regular family again in the sense that we did not have the constant feeling that something was ?wrong.? We experienced life the way ?normal? people do, in increasing measure. We were a family with two lovely girls who went places or sat around and cuddled together. Many people have babies or a child in their home with the needs of an infant. That my child could remain in that infant stage for an abnormally long time no longer dogged my thoughts. However, my sense of happiness and normalcy remained frail. Depression and anxiety hovered close by, ready to attack if I let them.

I often wondered what Elizabeth thought about. Her inability to visually focus on her surroundings made it difficult to tell what was going on in her mind. She showed little reaction to people who spoke to her. Only rarely would she turn her head towards the speaker. My wonder led to many related questions. Was head-turning too difficult? Couldn't her brain process what she saw? Didn't she care to pay attention? Responsive or not, Jim and I knew she was in there ? and it hurt when people doubted it. People casually asked the painful question, ?Does she know what's going on?? Clearly they did not think so, or they wouldn't have asked the question.

No matter what Elizabeth's I.Q. was, we knew it was important to talk to her and tell her about life ? about God, about her family, about ?this little piggy going to market,? and even about her bellybutton. Although it can be unsettling or boring to talk to someone who does not respond with words or eye contact ? we knew through Elizabeth's smiles, that she appreciated it. Either in this life or the next, one day Elizabeth will talk to me. That belief thrills me. And if Elizabeth never speaks while on this earth, I know my efforts to communicate with her will not be a waste of my time or love. Giving affectionate attention to someone who is the ?least of these my brethren? is pleasing to God. Rewards are promised to those who do it.

When taking Jacqueline to her various dancing and swimming lessons, I faced the awkwardness of other mothers realizing Elizabeth's differences. If not overly sad about her development at the moment, I could usually explain it with a smile. My smiles would put everyone at ease. If my heart was aching, however, I failed to make the mothers comfortable.

At Jacqueline's first swimming lesson, I fought the urge to cry. While all the preschoolers were in the pool, the mothers went around asking each other how old their newest baby was and marveling at how precious they all were. I dreaded my turn. Elizabeth rested quietly and motionless in my arms, like a newborn. With all eyes on me, I told them Elizabeth was eighteen months old. The painful sound of silence ensued. To get them to stop staring while they figured out what was wrong with her, I told them about her condition, but I was unable to put any cheerfulness in my voice. I clearly had not put them at ease. They found it less stressful to resume their conversations with one another and to ignore me. I begged God to console me so I could get through Jacqueline's lesson without falling apart.

One time, moments after such a time, a woman approached with friendly and cheerful questions about Elizabeth. ?What's your daughter's name?? she asked. ?Where did she get her pretty blue eyes??

I immediately warmed up to her kindness and interest. The woman continued, ?Oh, I believe in divine healing and will gladly pray for Elizabeth. And I want you to know that when I pray for someone, I really expect them to get well.?

That lady lifted my spirits. I thanked God for sending her over to me.

In early February of Elizabeth's second year, I found myself weary again from seeing such minute results despite Elizabeth's therapy and all my praying. Would God ever perform a miracle for Elizabeth? Does he even do miracles anymore? Afraid that doubt would again overtake me, I asked God again to confirm his promise to me.

Within a few days of this prayer, on the Sunday before Valentine's Day, Jim gave me a red rose that had yet to bloom fully. It had barely opened. I placed it in a vase on the kitchen table. By Monday morning the head of the rose had drooped completely over. The stem, doubled over, was damaged. The head of the rose dangled lifelessly. It would die before ever blossoming. Jacqueline saw my sadness through my blank stare at the rose and said, ?Why don't we ask God to heal it??

I replied, ?I don't see why God would heal a dead rose.?

My discouragement did not deter Jacqueline and she prayed anyway. Later that evening, the rose looked even worse. So, to preserve God's reputation and to protect Jacqueline from disappointment, I told her, ?God doesn't promise to heal dead roses. That is why he didn't do it.? Jacqueline listened but went about seemingly unconcerned and with no sign of disappointment. That same night, she came down with a terrible earache and a fever. Sometime later, after I prayed for her, she was no better. She said, ?Don't worry, God doesn't always heal right away. I'll be better in the morning.? Fine, I thought, but I planned to take her to the doctor in the morning.

Entering the kitchen the next morning, I immediately caught sight of the rose...it was standing upright and blooming beautifully. ?Jacqueline,? I yelled. ?God healed the rose.?

Jacqueline bounded out of her bedroom and down the stairs exclaiming, ?And Mommy, my ear doesn't hurt anymore. God healed me and the rose. I told you he would!?

I said to Jacqueline, ?I am so sorry I tried to put doubt in your heart. Just think, I could have persuaded you to give up your prayers.?

She replied, ?That's okay, Mommy, because Jesus put trust and joy in my heart instead.? God had honored her child-like faith.

I pressed the rose, framed it and hung it on the wall. I look at it from time-to-time as a reminder of God's love, power and care. According to Jim, Elizabeth is like that rose. She was born wilted, but will one day blossom beautifully.

Perhaps that flower also inspired a story that Jacqueline wrote in first grade:

The Flower

Long, long ago, there was a town named Aven Rood. At the end of Main Street, there was a little flower shop with very many beautiful flowers. Some were roses, some were irises. One of the roses was as wilted as a dead leaf. It was very sad because all the time people would say, ?That?s an ugly flower you?ve got there,? and that would hurt the rose?s feelings.

One day, a little girl came into the flower shop. She stared at the flower. She wanted to water it and care for it. She asked the man at the counter, ?How much money is that flower??

?Money!? exclaimed the man. ?It?s free for you!?

?Oh, thank you,? she replied happily.

The girl took it home and planted it in her garden. And it was her favorite flower.

At the end of Elizabeth's second summer, we faced for the first time the matter of school and Elizabeth's education and therapy. How could I put my baby in school at such a young age? I had resisted enrolling her in a special school because between her therapist and me, I thought her therapy needs were being met. The county special educators, however, insisted that Elizabeth's intense therapy regimen required that she be enrolled in one of their programs. Jim left the decision to me since I was the one working with her all day. With the end of enrollment approaching, I agreed, thinking that perhaps I was supposed to help the other parents in the school learn how to cope.

At the school's first parent meeting, however, it became obvious that I was the one who needed help. The other parents looked on gratefully and cheerfully as a county representative described how our children with mental retardation and other disabilities would be starting their education at this school and working their way into adulthood through the county's network of various programs. Jim and I sat blank faced. I couldn't take it. How could God allow Elizabeth to even need this system or to be referred to as ?handicapped? or ?retarded? (labels I hated as they sounded so negative ? so permanent). These strangers, although well-meaning, matter-of-factly discussed how Elizabeth would spend her whole life in the system.

?Oh God,? I prayed, ?why haven't you delivered Elizabeth from all this? This school is for other unfortunate children ? not one of mine.? Jim felt the same way. We both left the meeting very depressed.

For the first few days of school, I cried bitterly as I handed Elizabeth to the school bus aide on the bus that came to pick her up. My poor daughter. Going off to school on one of ?those? buses to one of ?those? schools. Elizabeth looked so helpless and innocent. And she was helpless ? as helpless as any two-month-old baby. She barely had hair covering her head, and I was sending her off into the care of strangers.

I missed Elizabeth terribly through the school day. Apparently she missed me too. Her teachers said she rarely smiled and slept often. Sleeping in school, I reasoned, was her way of avoiding unpleasantness or boredom.

At first I felt guilty for sending her away for the day, but eventually I grew accustomed to it. I even began enjoying the freedom to run errands and clean the house without having to worry about stimulating or exercising her all day. Elizabeth's bus drivers, aides, and teachers were kind and positive people. They always greeted her cheerfully. Her school therapist was a Christian, and she prayed for Elizabeth. Elizabeth adjusted at school and soon reverted to her old happy self again. I thanked God now for the break Elizabeth's school provided me, and that she, too, was getting used to the new routine.

I often went to Elizabeth's class to check her progress and to talk to her teachers. It hurt to see the other children there. One in particular, Shelly, was a ward of the state. She lived in a hospital and was transported to the school with the other kids. She sat uncomfortably in her specially designed wheelchair. Her head hung limply as she struggled to breathe through a tracheotomy hole in her neck. Mucus spewed in and out of the hole with each breath. It needed constant suctioning because the mucus seriously impeded her respiration. She ?ate? through a G-tube in her stomach. When I spoke to her, she did not respond in any way. My heart went out to Shelly and the parents who could not, or would not, take care of her. Why did I keep forgetting to be grateful that Elizabeth's infirmities were not as severe, and that she had a family who loved her?

I prayed God would heal Shelly as well.

It was a delightful day when Elizabeth brought home her first finger painting. Her teacher dipped Elizabeth's curled fingers into the paint and moved her arms around over the paper. It thrilled me to think how much pleasure that touch and movement must have given Elizabeth. I hung it proudly on the refrigerator door.

Dear Family and Friends, September 26, 1991

I've begun to adjust to both my girls being in school. Elizabeth's school sends her weekly schedule home on the bus for me to see. This week she has horseback riding, sponge painting, lotion rubdowns, and hot tub. Her life style has certainly improved. Jacqueline is jealous that Elizabeth gets to ride a bus to school, while she doesn't. She also feels cheated that she can't attend Elizabeth's school too. I keep trying to tell her she's lucky, but it's hard for her to appreciate that when she sees her sister go off on that cute little bus, and hears about her going horseback riding.

Love,

Lisa and Jim

.14.

We Are a Family

?Are not two sparrows sold for a penny?

And not one of them will fall to the ground without your Father's will....

Fear not therefore; you are of more value than many sparrows.?

Matthew 10:29, 31

Everything in life seemed to stabilize that fall. Surprisingly, I was getting so used to Elizabeth's condition, that I often forgot I had a reason to be sad. Perhaps, I began to think, I don't have a reason to be sad. Elizabeth was happy, so we were happy.

.15.

Healing Meetings

?And he healed many who were sick with various diseases?

Mark 1:34

Elizabeth developed little that second year. She showed no ability to talk, sing, or even hum. She could not roll over or sit up. And she still could not pick up a toy. Yet, I fended off devastating bouts of depression. Despite the fact that Elizabeth could not function at her peers' level, she was rich in little friends. And for that, I was very thankful. Little children did not pity and avoid Elizabeth. Once curiosity about her was satisfied, they enjoyed her company. They related to her on terms very agreeable to Elizabeth. Because she would smile when touched, they would stroke her cheek. Because she would smile when held, they would hold her.

I will never forget Rachel, Elizabeth's first pre-school friend. Rachel was quite taken with her and always wanted to hold her. She did not seem to notice Elizabeth's limitations. The only thing that troubled Rachel were the snoring noises Elizabeth made when breathing. After she discussed her concern with me, she went off alone to speak to God about healing Elizabeth's ?booger? problem.

In honor of Rachel's fourth birthday, she asked her parents if Elizabeth could come out for ice cream and celebrate with her. Jesus said when you give a party ?invite the poor, the maimed, the lame, the blind, and you will be blessed, because they cannot repay you. You will be repaid at the resurrection of the just? (Luke 14:13-14). When Rachel asked if Elizabeth could go along, I was overwhelmed with gratitude. Elizabeth had never received an invitation before.

Rachel was the daughter of friends who did much to raise my spirits over Elizabeth. Several years earlier, one of their children died from a genetic immune deficiency. They too had known paralyzing grief. And pain, and fear. God had apparently healed Rachel of the same problem ? at least for awhile.

Rachel's parents often supported us in prayer for Elizabeth's healing. By the time Elizabeth turned two, we had also taken her to several healing meetings. At first I was filled with hope, but then it became increasingly difficult when time and again we walked away with nothing changed. The disappointment was sometimes overpowering. Jim and I resolved to attend healing meetings no longer, unless we felt the Lord's prompting. People who have been healed at these meetings often testify the Lord assured them this was their day to receive a miracle. Jim and I knew God had heard our prayers from the start. He did not need to answer them through a particular person at a particular meeting.

Months before Elizabeth's birthday, some friends suggested I take Elizabeth to Buffalo, New York, to see a minister gifted in the healing ministry. Supposedly many healings occurred during his services. Jim and I felt Elizabeth should go to the two-day miracle crusade. I took her myself.

I asked God what I was to be looking for at this crusade. Immediately a Bible verse came to mind: ?Seek first the Kingdom of God and His righteousness, and all these things shall be added to you.? I was not even supposed to seek her healing? After all the effort and expense of getting there? Oh well, God must have something very important for me to learn. Of course I hoped that God would throw in Elizabeth's healing as well.

The wait in the line for the service was long. About five thousand people packed the auditorium. I saw heart wrenching infirmities all around me. People lay in the aisles, skinny, looking half dead with AIDs or cancer. Children sat strapped into wheelchairs, many with even their heads secured. Others were hooked to machines that barely kept them alive. Parents, many in obvious anguish, hovered anxiously over their children, praying that this was their day for a miracle. It was a convention of the desperate.

One mother of a blind and limp five-year-old girl acted jealous seeing Elizabeth's smiles and kicks of delight. ?I'd do anything to see my daughter smile,? the woman told me. ?She doesn't even know us. I know it sounds terrible, but I don't even love her anymore. I think she'd be better off in an institution. It's hard to believe she'll be any different after this service. I've been to many; there is never any change. I used to believe so strongly she'd recover. I can't take the disappointment anymore.?

I felt scared. Time had made her lose all hope ? in God and for her daughter. I wanted to say something encouraging, but felt lost for words. Perhaps my journey with Elizabeth was much easier because she could communicate with me through her smiles. I wanted to tell that mother that God is faithful and could restore her love for her daughter, but I felt unqualified to say so. I had not been worn down by years of unanswered prayers as she had. I knew God's word was true, but I realized afresh how carefully I would need to guard my heart against bitterness if my months of trial turned into years. All I could do was silently pray that God would restore her hope.

The woman's husband, on the other hand, showed nothing but adoration for his daughter, judging by the way he tenderly caressed her as he held her upon his lap. His unconditional love was so deep, so beautiful. I knew he hurt also, but I could tell he would never stop believing that God had good intentions towards his daughter. For a moment he studied Elizabeth's happy face. I sensed the longing for his own daughter to experience such pleasure. He said simply of Elizabeth, ?She's beautiful.?

?Oh God,? I confessed as soon as I left them. ?I'm sorry I've not spent more time praising you for all you have done for Elizabeth. Thank you for giving her such a joyful spirit. Thank you for allowing her to see and hear and live without machines. Thank you for letting us see some improvements in her alertness. Thank you that she has already outdone the doctor's expectations of her. I have taken that for granted too often. Like the Israelites who grew unappreciative of the manna you blessed them with, I have lost my gratefulness for the `manna' you have given us. Please forgive me.? I was going to start the meeting being thankful to God for the ?manna? of Elizabeth?s general good health and happiness.

When the service began, the minister kept repeating the scripture ?Seek first the Kingdom of God.? There it was again. Apparently God was confirming what He had told me before I arrived. I had to stop focusing on Elizabeth's healing and make it my aim to seek God and his kingdom first. The minister announced that the Holy Spirit was moving and healing people. He requested those who received healing to come up on stage and testify. Many were overcome by the Spirit and fell down when he placed his hands on them. One boy testified that he had been healed of muscular dystrophy. A doctor came up to examine him with the boy's father, delirious with joy, standing nearby. Other children were healed of deafness. A few older people abandoned their wheelchairs and walked forward to the stage.

Elizabeth, however, and all the other children like her, remained noticeably the same. One older woman I befriended, Olga, was not healed either. Determined to be free of her arthritis, she sneaked past the men keeping people off the stage so she could get the minister to lay hands on her. He laid hands on her several times, but nothing happened. Olga admitted she was very disappointed. ?But if I dream tonight that I'll be healed, then I will be at tomorrow's service.? And Olga did have a dream that night.

The next day, the minister announced at the morning service that it would not be a healing service, but a teaching service instead. ?Poor Olga,? I thought. This was the last service she could attend before returning to her home in Canada. When the service ended, the minister called all those who were pastors to come up for prayer. Astonished, I watched as Olga bolted forward. She was no more a pastor than I was. Before long, she was lying on her back on stage, obviously overwhelmed by the power of the Spirit. She lay there for about half an hour. When she returned to her seat, she was crying with joy. Earlier she had been crying in pain because the arthritis was really bothering her that morning. ?I was slain in the Spirit and God healed me.?

Moments later, the minister said, ?Some of you who came forward didn't look like pastors to me ? but hey, God blessed you anyway.? He sure did. I saw first hand a case of God blessing the determined, the one who was willing to overcome all obstacles. It reminded me of Jacob deceptively stealing his older brother Esau?s blessing from his father, Isaac. And I thought of those brave people who ripped a hole in the roof in order to lower their crippled friend down for Jesus to heal. Olga had waited many years to receive her healing, but this time, her persistence paid off.

For whatever reason, not all who are prayed for are healed. This truth came to us in a hard way ? and I was not ready for the crushing disappointment. Tragically, two weeks before Elizabeth's second birthday, Rachel, her little friend who invited her out for ice cream, died. She contracted a virus she could not fight. When she died, our family was devastated, and my faith was tested once again.

.16.

The Test

?In this you rejoice, though now for a little while you may have to suffer various trials, so that the genuineness of your faith, more precious than gold which though is perishable is tested by fire, may redound to praise and glory and honor at the revelation of Jesus Christ.?

1 Peter 1:6-7

New Year's Eve, December 31, 1991. Jim was in bed and about to drift off to sleep when he thought he heard God say clearly, ?Your faith will be tested this coming year like never before.?

Alarmed when he told me, I asked Jim, ?What can that mean? I hate having my faith tested. Haven't we been tested enough?? How many faith-testing events did we need?

Jim, however, was not alarmed. He felt that God was lovingly assuring him of divine deliverance from some future disaster. I was not to worry, Jim said. The message was for him, not me. I knew better. If Jim's faith were going to be tested, mine would be as well. I hoped this ?message? was nothing but a product of Jim's imagination. I forgot about the pending ?test? as the first days of the New Year flew by.

One afternoon I took the girls and Jacqueline's friend Dana to McDonald's. My heart was still heavy with grief over Rachel's death the previous month, as well as that of an eighteen-month-old boy in our church who died unexpectedly in his sleep. We sat next to three women and their small children. We had just finished eating when suddenly one of the mothers grabbed her lifeless son off the floor. The women began screaming hysterically that he was not breathing and cried for someone who knew CPR. I joined in on the hysteria and started screaming out as well. All attention was on us, but everyone remained motionless at their tables, staring in silent shock. ?Oh God,? I prayed, ?not another dead child ? I can't take it anymore.? Though previously trained, I couldn't remember how to do CPR because I was so hysterical.

With no one stepping up to the rescue, I told the mother to hand the boy over to me. He was very blue and strange looking ? like the two dead children I had seen only the month before. Forgetting that I should have checked for a pulse before determining the course of action to take, I cried out to God for help as I laid him over one arm and put heavy pressure on his stomach just below his rib cage. The Heimlich maneuver was the only thing I could think of. A scared Jacqueline and Dana prayed for him. In a moment he spit up a large volume of saliva and the mother saw that he was breathing again. She took him from me and laid him on the table. He seemed groggy and went to sleep. Had I injured him?

The ambulance arrived and the paramedic said the boy appeared fine. He had probably suffered a seizure as indicated by his unconsciousness, wet pants, and heavy salivation. Apparently he had choked on his saliva or something else in his mouth when his seizure began. He was conscious and looked much better when the ambulance left for the hospital. Elizabeth's pediatrician later told me I probably saved his life. I was so grateful to God to be a part of something good.

Later that January, Elizabeth's breathing at night became alarmingly difficult. I stayed up many nights with her, holding her mouth open with my finger so she would not have to struggle to inhale. Her nose was not running, but her nasal passages sounded very congested. Elizabeth could have opened her mouth, but she clamped it shut in her stress. The ?test? had arrived.

We knew Elizabeth's breathing problems were serious and needed medical attention. We took her to an ear, nose, and throat specialist (ENT) associated with the Children's Hospital in Washington, D.C. He ordered a sleep study to determine if her brain was failing to tell her to breathe (indicating a neurological problem) or if she were trying to breathe but something hindered her (a structural problem, such as enlarged adenoids). Or both! Jim took Elizabeth to Children's Hospital for the overnight study. While she slept, electrodes attached to her recorded breathing patterns. I anxiously phoned the doctor a few days later to get the results.

A nurse spoke to me and said, ?Elizabeth's test results show abnormalities. Please come in tomorrow to discuss the results with the doctor. He will look at her tonsils and adenoids then. He may suggest immediate surgery. In the meantime, he wants Elizabeth to sleep with you so you can monitor her breathing.?

We met with the doctor, and before the debriefing was over, Jim and I were in shock. According to the sleep study, Elizabeth was stopping her breathing long and often during sleep. Not only was there structural apnea (something physical blocking her airway), but also central apnea (the brain forgetting to breathe) as well. At one point during the study, Elizabeth stopped breathing for as long as twenty seconds. It was clear she might go to sleep one night and never wake up, or if not that, then her brain damage could grow worse from lack of oxygen.

Hearing this bad news evoked my ?numb? routine ? meaning I refused to process it. Jim, on the other hand, processed the bad news immediately. He turned pale and tears trickled down his cheeks.

There was a possibility that enlarged adenoids were causing the structural problem. The doctor began the process of threading a scope through her nose and throat. First, his nurse tried to clear away Elizabeth's nasal mucus from a cold with a little hose. Elizabeth stiffened and cried as it sucked out blood tinged mucus. I nearly passed out watching. It seemed like they were torturing her ? and we were letting them.

Then things got worse. Elizabeth's throat was numbed in preparation for the scope, but then an alarming side effect ensued. As the numbing progressed, her breathing grew more and more laborious. She arched in fright, fighting for each breath. I began pacing and crying in a room that seemed to get smaller with each passing minute. Jim tried to hold Elizabeth still so the scope could be threaded through internal passages. The doctor could not get the scope through her nose, and he ordered me out of the room. My panic distracted him.

Agonized, I sat in a nearby waiting room and wept. Other parents handed me tissues and looked on sympathetically. It sickened me to leave Jim like that. How could I abandon Elizabeth? Yet I was relieved that they made me leave. I couldn't stand the frightening drama. I prayed and wanted to feel that God was near. I began worshiping in my desperate heart, quoting Psalm 103: ?Bless the Lord, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases.?

Peace began to chip away at my hysteria. The nurse called me back in when the procedure ended. I sat in stunned silence as the doctor told us what had to be done. He began by saying he doubted that removing Elizabeth's tonsils and adenoids would help. He believed Elizabeth's poor muscle control caused hypopharyngeal collapse and the flabby tissue in her throat closed her airway. Also, little oxygen passed through her narrow nasal passages, a consequence of her small skull. The only thing that can help Elizabeth, the doctor recommended, was a tracheotomy.

A tracheotomy! I nearly threw up. I thought of Shelly, the little girl in Elizabeth's class, who had one. I remembered with horror the sight of that girl's tracheotomy gurgling with mucus ? in and out, in and out.

The doctor went on to tell us what a tracheotomy meant. Round-the-clock care, possible infections, life-threatening emergencies when it clogged, no more baths, no more wind on her neck. As far as Jim and I were concerned, it meant no more life. A tracheotomy for a kid like her meant what little she had would be taken away. Once she had a tracheotomy, it could become permanent. She would possibly never be able to breathe without one. Even with it, she could still die from the central apnea. And only God could cure that problem.

A tracheotomy for Elizabeth sounded more like a torture than a solution. ?No,? we told the doctor, ?we will not do it.?

?But you can't just let her go on the way she is,? he responded.

Jim and I were willing to take that risk. As much as we loved Elizabeth, we just could not allow a tracheotomy. We wanted to pray more about our decision before entirely closing the subject. We also wanted a second opinion. I called Elizabeth's pediatrician from a hospital pay phone. I repeated everything the ENT told us, ending with, ?But Jim and I just do not want Elizabeth to have a tracheotomy. Will you call social services on us if we refuse the surgery and Elizabeth's dies??

Elizabeth's pediatrician emphatically replied, ?I definitely will not call social services. I don't think Elizabeth should have to endure a tracheotomy either. It's too much for a child like her. A sturdy, active child can live with one, but it would be a lot tougher on Elizabeth.?

Elizabeth's pediatrician continued, ?God has kept Elizabeth alive this long. I'd hate to see surgeons start poking around.?

What a relief! Elizabeth's pediatrician agreed with us. Fully confident of our decision, we again told the ENT we could not allow the procedure ? at least not at that time. We accepted a booklet from him on how to care for a child with a tracheotomy and left his office. We could not wait to take Elizabeth and flee the hospital. We drove out of the hospital's underground parking garage and were on our way, feeling that a major nightmare had just been avoided.

But this crisis was not over. It got frighteningly worse.

Worry became our constant companion during the following days. We now knew Elizabeth courted death or further brain damage every time she slept. At her age and with two types of apnea, there were no monitors suited to her condition ? one that could alert us in time to dangerous breaks in her breathing pattern. The available monitors would either go off all the time or not until she was dead. We were left to trust God to keep her alive.

Were Elizabeth's sleep study results just some bad news we were not to fear? I remembered the warning God had given Jim on New Year's Eve. Was this the great test of faith we were to encounter? I thought of those breaks in television programming that say, ?This is just a test; had it been an actual emergency....? Perhaps this was just a test, and not an actual emergency. I hoped so.

If Elizabeth's friend Rachel had not died the previous month, it would have been much easier to trust God and dismiss the sleep study. Jim and I had fasted three days prior to Rachel's death, praying and fully believing she would recover. Why had not God healed her? Most of our Christian friends thought he would, and some even came forward with supposed words from the Lord saying she'd recover. We, too, had received ?words from the Lord? regarding Elizabeth. Were these truly messages from God?

Jim and I became Elizabeth's breathing monitors. We kept Elizabeth in bed with us so we would hear as soon as she struggled for breath. And struggle she did. Night after night I held Elizabeth's mouth open so she could sleep. If I didn't, she would cry and gasp. On weekends Jim took over the job of keeping Elizabeth alive and comfortable. It was agony to see Elizabeth struggle like this. So many times, during moments of complete exhaustion, Jim and I contemplated the tracheotomy. Perhaps Elizabeth would be more comfortable with one. But would she really?

What cruel decisions advanced medical technology forced on parents like us! Whatever we chose, we questioned whether we could live with the consequences. How would we feel if Elizabeth got the tracheotomy, and then had to endure years of restricted living with episodes of infections and mucus buildups that frightened her and threatened her life? On the other hand, could we ever forgive ourselves if Elizabeth died panicking and gasping for breath, knowing she could have lived if we opted for the tracheotomy? We went back and forth between fear and torment. Nevertheless, we just could not bear the prospect of a tracheotomy. The image of a hole in Elizabeth's throat overwhelmed us. She would have to live, or die, without one.

Hoping to find an alternative solution to Elizabeth's apnea, I took her to a dentist to see if he could design something to hold her mouth open at night. Given her age and tooth development, he could not. The dentist did mention a technique he had seen done in institutions. A button was surgically placed on the patient's tongue. A string was then tied around the button and pulled out to keep the tongue away from the back of the throat. I shuddered at this picture, too. Elizabeth already had deformities in her mouth and teeth as a result of the microcephaly. She didn't need a button and string on top of them. The dentist had no other comments or recommendations.

Elizabeth's breathing problem continued ? night after night. Although I could hear when Elizabeth was struggling to breathe, I could not hear when she stopped breathing all together. This worried Jim more than anything. But I felt confident the central apnea would not be the death of her. Until one night.

In the early hours of that terrible morning, I awoke with a start. Elizabeth lay next to me, unusually quiet. I touched her. She was not breathing! I shook her and screamed. Nothing. Jim awoke as I turned on the light. Again I shook Elizabeth. Finally, she took a deep breath. Although she had not stopped breathing long enough to turn blue, we were beside ourselves. Had I just caught one of the many episodes that she always recovered from? Or had God awakened me so I could save her from this one? How could I ever sleep again? Anxiety and insomnia consumed me instantly.

The following night, I barely slept. I didn't even want to. I had to trust God. That I knew, but I was afraid. I told God of my trouble trusting him and pleaded for his help. Searching the Psalms the next day, I discovered the scripture ?I lie down and sleep; I wake again, because the Lord sustains me? (Psalm 3:5). I earnestly prayed this over Elizabeth. Peace subdued my fear. Within a few days I was able to sleep again.

For Jim, trusting God with Elizabeth's life proved harder. It was his turn to battle fear and doubt. Jim had been correct suggesting that his New Year's Eve ?faith testing? word was for him, not me. Contrary to the evidence, I truly believed Elizabeth would live through this ordeal. Such confidence eluded Jim. He spent long periods agonizing on his knees before the Lord. Elizabeth's apnea severely crippled Jim's belief in God's intention to heal his daughter. He could not bear for her to suffer and die, yet he wondered if she would ever recover. This time, I was the one who was relatively strong.

Jim told me, ?Lisa, I think God supernaturally protected me from the agony you went through during Elizabeth's first year. I guess I was supposed to be strong for you. But now, I'm struggling to believe anymore.?

Jim concentrated on just trying to believe God would keep her alive, whereas I quickly resumed praying for Elizabeth's complete recovery from brain damage, not just her breathing problems. I remembered God's question to Abraham concerning Sarah, ?Is anything too difficult for the Lord?? I did not want to offend God by believing Elizabeth's case was too difficult for him.

Like the writer of Psalm 77 who also struggled with his faith, I reminded myself of the times God had ?parted the Red Sea? in my life or in the lives of others. I recalled many supernatural healings. Sometimes fevers left my girls immediately after prayer. Elizabeth's brain had grown enough to sustain her life, and she could hear and eat normally.

I witnessed many deeds performed by God on which I could meditate. I again chose to trust in the Lord with all my heart and not lean to my own understanding. If Elizabeth died, I did not want it to be because I refused to believe, but because God had foreseen something better for her. Besides, death is nothing to fear for a child of God ? in fact, for those who die in Christ, it is far better than life on earth.

A few weeks after asking God to help rebuild my faith, he answered my prayers. During a church meeting, a man who knew nothing of Elizabeth's breathing problems walked over to us, believing he had a message for us from God. The man said, ?God wants you to hang on; don't give up. He gave me a very clear word for you: `Keep yourself strong, feasting upon my word. Hold fast to the gift I have promised you. You are well-loved and I hold you in my hands.'? He also quoted from Psalm 27 as part of his message: ?I believe that I shall see the goodness of the Lord in the land of the living. Wait for the Lord; be strong, and let your heart take courage; yea, wait for the Lord.? I hesitate to share these words from the Lord before they come to pass, but this one meant so much to me, and so lifted my spirits, that its importance should not be ignored.?

Jim and I knew that Elizabeth's apnea would not go away soon. We were prepared to make any necessary sacrifice of sleep. But now Jim also knew that his faith in God had been tried. Where it was flawed and weak, Jim committed himself to making the repairs. He endured the test.

.17.

Striving for a Happy Home Life

?You shall eat the fruit of the labor of your hands;

you shall be happy, and it shall be well with you.?

Psalm 128:2

Despite our newfound knowledge of the seriousness of Elizabeth's breathing problems, I tried to maintain a happy atmosphere for my family. Jim and I wanted life to be good again. We wanted to escape all thoughts of a tracheotomy. I threw away the ?how-to? tracheotomy booklet we?d received from the hospital. Just glancing at it made me ill. Although the hand-drawn pictures of children with tracheotomies made this lifestyle look so neat and tidy, it was nothing less than a book of horrors to me. It seemed to threaten a bleak future for Elizabeth.

Despite Elizabeth's breathing struggles in the evening, our daily routine was normal. I continued to send Elizabeth to school. I caught up on my sleep during the day. Before long, happiness was part of our home life again:

Dear Family and Friends, February 1992

Now Jacqueline is no longer our only ballerina. Elizabeth, too, is getting in on the act. I put her into a tutu when she is in her crawler so she can scoot across the floor while Jacqueline dances around her. Jacqueline is thrilled Elizabeth can participate. She is no longer relegated to being the ticket taker during Jacqueline's frequent home performances.

And later, thanks to Jim's father, Elizabeth enjoyed a new freedom of movement:

April 16, 1992

Jim's parents came earlier this month so his Dad could finish a walker he made for Elizabeth. It took a lot of adjustments to get it just right for her. It is similar to a regular walker except it has a board she leans forward on and it supports her up to her armpits. When she has the strength to stand straight up and get it moving, her look of surprise and delight overwhelms me with joy. We keep it in the kitchen. Sometimes she actually gets in my way while I'm cooking dinner. How I've longed for her to get in my way. We are so blessed to have a carpenter in the family. Dad would gladly build anything for Elizabeth. He also made her a little adjustable table. He's always praying for a miracle, and once told me ?All this praying is going to work ? it has to.?

Love,

Lisa and Jim

.18.

School Systems and Health Evaluations

?I will call to mind the deeds of the lord;

yea, I will remember thy wonders of old.?

Psalm 77:11

Elizabeth's schooling provides me with chances to meet other children with disabilities and their families. I entered a new world when she was born. Although it was a world filled with concerns and pain, it also led to incredible lessons in friendship and love ? the things that really matter. Elizabeth's classmates and their parents became a wonderful part of this world:

Dear Family and Friends, April 28, 1992

I took Elizabeth to a party last weekend given for a boy in her class and his older sister. It was very touching to see the kindness of the hostess. Her son, Danny, is three, blind, deaf, has cerebral palsy and receives his nutrition through a tube in his stomach. I held him for awhile. There were about twenty kids packed in her little living room.

Her husband has been in Korea for the past eleven months with the armed services. With all she has to deal with she was kind enough to throw this party and invite everyone in her son's class. I could sense God's pleasure in her as she obeyed the scripture exhorting us to have parties and invite the blind, lame, and sick. I did not have the courage to invite the kids in Elizabeth's class to her party last year because I was not sure what I would do with them if they came. I also reasoned that my indoor space was too cramped. Although her party was crowded and her son could not participate, I'm sure Danny enjoyed the excitement he could feel around him.

Elizabeth had a great time sleeping through most of it and woke up at the end to eat a pint of ice-cream. In attendance was a twelve-year-old girl with cerebral palsy, who did not have anyone to interact with. Most of the kids were either like Elizabeth or were the healthy active friends of Danny's older sister. I felt sad as she sat alone, basically ignored. It was difficult to understand her speech, but I was told she was intelligent. She finally asked me if she could hold Elizabeth. I held Elizabeth on her lap and she showered her with kisses. Elizabeth loves to be kissed so she was all smiles. She did not mind that her friend's kisses were dripping with ice-cream and cake. She asked if she could feed Elizabeth and I agreed. Elizabeth endured ice-cream going all over her face as the girl struggled to get it in her mouth. My eyes watered as I saw the beauty of those two interacting and receiving so much pleasure from each other's company. Danny's mother, Kathy, told me the girl lives down the street and often comes over so she can ?help? take care of Danny. True Godly love in action. He has taught me much about that over these past two years.

Love,

Lisa and Jim

Like any other school, students at Elizabeth's school received report cards. But reading reports on Elizabeth's progress in school served as another source of emotional torture. Although the teachers wrote about Elizabeth's pleasant disposition, one evaluator wrote plainly that ?Elizabeth has not met any of her goals.? To our dismay, this report card informed us for the first time that Elizabeth was considered and labeled ?cortically? blind?able to see, but unable to interpret what she saw. That explained two things: her difficulty in visually focusing on objects, and why we had begun receiving literature on support groups for the blind.

On paper, Elizabeth was a failure. Reading in black and white where they placed her developmentally devastated us. According to the teachers and other evaluators, Elizabeth functioned as a two- to three-month-old infant. I felt like a failure. ?What is the point of continuing all this prayer and therapy?? I thought. ?Maybe I should just enjoy loving her and put any hope for progress behind me. I'm just setting myself up for more disappointment.?

Despite the despair brought on by these reports, I knew I could not give up ? I could not do that to Elizabeth ? or to myself. ?Therefore, do not throw away your confidence, which has a great reward. For you have need of endurance, so that you may do the will of God and receive what is promised? (Hebrews 10:35-36). Besides, if I stopped all her stretching exercises, her muscles would atrophy and her bones and joints would deform. Regression was not an option.

Call it denial, but I decided to stop reading Elizabeth's report cards. Only Jim continued to read them. He read aloud the positive comments about Elizabeth's pleasantness and smiles, and for those, we took her out for frozen yogurt to celebrate. With this arrangement, Jim remained informed while Elizabeth and I remained happy.

.19.

Therapy at Home

?Train up a child in the way he should go,

and when he is old he will not depart from it.?

Proverbs 22:6

Elizabeth's withdrawal from school proved to be a good decision. Away from other students, she no longer contracted one cold after another. This meant no more chronic phlegm build-up and swollen nasal passages. We also kept her relatively isolated from other young children in the neighborhood. Although this limited our social life, it was worth the improvement in Elizabeth's structural apnea. She rarely struggled to breathe at night. Apparently, the constant colds aggravated her condition. Elizabeth's ears also cleared up nicely. Finally, we all could sleep peacefully at night.

With Elizabeth at home, Jim and I were solely responsible for her physical and cognitive therapy. Since we no longer had Becky as Elizabeth's private therapist, we hired another one, Mary. She happened to be a good friend of ours, and we felt fortunate to benefit from her expertise. Mary exuded a positive attitude and rejoiced with us over any of Elizabeth's little accomplishments. Initially, I dreaded therapy sessions because they were point-by-point reminders that Elizabeth was not functioning normally. But now I found the sessions very encouraging.

The director of Elizabeth's former school once told me, ?We're here to prove the doctors wrong.? A therapist's goal is the same. I consider them as special agents of God ? little messengers of hope. Mary and I never discussed nasty little topics such as Elizabeth's developmental level. Instead we focused only on helping Elizabeth meet her goals without imposing deadlines for her.

Much of Elizabeth's therapy took place on my lap. Routinely stretching her limbs and facial muscles quickly became second nature to me. I stretched her while sitting with friends, at the movies, and in church during sermons. When busy in the kitchen, doing paperwork, or writing, I usually placed Elizabeth on her crawler so she could get some exercise, or strapped her in a prone stander (an upright board) so she could bear weight on her feet and work on head control. When she tires, I simply lay Elizabeth on her back and place some dangling toys above her. Although she cannot reach the toys with her hands, Elizabeth can reach them with her mouth.

Despite the increased responsibility of keeping Elizabeth out of school, I loved having my little two-year-old home again. Never demanding, she would lie quietly on the floor and watch TV until I could attend to her. When I picked Elizabeth up, her instant smiles showed appreciation. She enjoyed her therapy. In fact, she enjoyed anything we did together, especially rocking in my chair. I held her in my lap like a newborn, completely supporting her head so she could relax while facing me. In my arms, she made good eye contact with me. We often gazed into one another's eyes for long periods of time and smiled ? it was our way of communicating. Elizabeth could not verbally respond to my words of affection, but I saw her love for me. She studied my entire face and smiled whenever I contorted it into a silly expression.

Reading to Elizabeth in the rocking chair became one of our favorite pastimes. Aside from children's picture books, I also read aloud my own books and magazines. She looked at the pages even if they did not have pictures. I read her the Bible ? not only so she could grow spiritually, but because God's words ?are life to him who finds them, and healing to all his flesh? (Proverbs 4:22).

In my search for scriptures about healing, I found many commands and promises that incorporated body parts. They were perfect for me to say when working with her. For example, when stretching open her clenched fists, I said, ?You shall clap your hands with all nations and shout to God with a joyful cry.?  

Even though her therapy needs were great, taking care of Elizabeth was easier in some ways than caring for a toddler. Since immobile children can?t get into anything, I was spared the exhausting chore of running around protecting her from harm and cleaning up after her. There was no potty training, teaching her manners, or disciplining bad behavior. Of course, I wished she could get into some mischief, so she would at least know what it was like. One day I emptied my cupboards and helped her bang my pots and pans together on my floor ? something Jacqueline did repeatedly at that age.

I do not feel saddled by Elizabeth's needs, but rather see them as just a major part of the work that God has called me to. As a bonus, I get to use Elizabeth's care as an excuse to avoid the things I would rather not do ? such as cleaning.

.21.

The Baby Shower

?Now they were bringing even infants to him that he might touch them.?

Luke 18:15

The invitation made me happy and excited, but I was unprepared for the baby shower. It had been almost three years since Elizabeth's birth ? why should a baby shower bother me now?

I hardly knew Mae, a woman from our church, but I was happy to rejoice with her. It had taken her years to conceive, and all her friends were celebrating. Although I normally took Elizabeth to functions because it was easier than finding a sitter, I knew I should not bring her to this one. I did not want Elizabeth's presence to cast a cloud over the celebration. No expectant mother wants to dwell on the possibility of that heartache.

My decision saddened me, but how could I deny it: Elizabeth was not a good poster child for an event like a pending birth.

It was the most beautiful shower I ever attended. Everything celebrated the goodness of God and the specialness of her child. A quilt was made by the children of friends. There were speeches and prayers. Mae wept when presented with a poignant song written by a close friend, but a shocking bitterness erupted violently within my heart with each verse I heard.

?Master's Hand? by Vicki Cowan

You've waited so long for this little one

And he's waited so long just for you.

Yet the Master's hand had it planned

even before time began.

For God is a faithful God.

He is the fulfiller of your dreams.

His pleasure shows through the gift he bestows.

Oh He must love you so.

Each happy word pushed me deeper into an abyss of resentfulness. I thought Elizabeth would be a gift, too, and that God was going to fulfill my dreams. How much could God love me to give me a gift in that kind of shape? Why such joyous anticipation when all God had in store for me was inconsolable grief?

The happy party atmosphere was not dampened with my tears. I was too bitter to cry.

What was wrong with me? I had to regain control my thoughts. ?Elizabeth is a blessing,? I forced myself to remember. She just didn't arrive in the package I anticipated. I reflected on her beautiful smile. Her soul was innocent and undemanding. Her needs were simple. All she asked was to be loved. How easy that was to provide her, thanks to God. ?Yes God, you have blessed me. Thank you.?

When it came time to leave, I was beginning to feel happy and content. But I left the shower surprised at how envy could so quickly engulf me. I rejoiced when Mae gave birth to a healthy child--but it took work.

By Elizabeth's third birthday, her physical skills had improved little since the beginning of the year, but she appeared more alert. For example, her head would move to follow Jim, her hero, around the room. While in her infant seat, Elizabeth looked so cute straining her neck to keep up with his movements ? even when he walked behind her.

Elizabeth still could not play with her birthday presents, but we did not care. We were happy that Elizabeth felt good. Her pediatrician was pleased with her health. Elizabeth had not had an ear infection in months and was breathing very well. She also gained weight (three pounds), which she had not done in over a year. To see her grow out of her clothes was a long awaited blessing.

Elizabeth's pediatrician, who had been with her since birth, retired in December, the month Elizabeth turned three. To my surprise, I had grown attached to him. He was the only doctor who thought Elizabeth's life was not a tragedy ? that as a child of God, it had meaning. And he left the medical decisions up to us. He had supported our decision not to use hearing aids or to allow a tracheotomy or ear tubes. He was the only one who left Elizabeth's parenting completely up to us. So reluctantly we set out to find a new pediatrician.

I took Elizabeth to interview one whom I had used earlier in Jacqueline's infancy. I reminisced as I sat waiting for him in the examination room. I had so many happy memories of taking Jacqueline there for her well-baby check-ups.

But when the doctor arrived and took his first look at Elizabeth, his reaction quenched my cheerful mood. As Elizabeth rested in my arms, he told me she had one of the worst cases of microcephaly he had ever seen. Amazed, he said, ?I can't believe that the cytomegalovirus was able to do that much damage.? I placed Elizabeth on the examining table. As the doctor continued to look her over and stretch her stiff limbs, Elizabeth smiled at his touches and words ? seemingly unaware of his stark opinion of her.

The doctor called his nurse in so she too could be amazed at the virus's devastating effects on Elizabeth. Elizabeth was not a child there ? she was a ?case.? Clearly, this man was not the pediatrician we required.

Surprisingly, I did not cry as I waited for the elevator to take me down to the lobby. His words, though momentarily depressing, did not sink too deeply into my soul. If this man thought my little girl was repulsive, it was because he did not know her. I recovered quickly by deciding to feel sorrier for him than I was for myself. How glad I was to know unconditional love so early in my life. Learning to love the so-called unlovable has brought me more joy than I could have imagined. Shortly thereafter, I did find a good pediatrician. My friend Diane recommended him. She said, ?He is a jolly man who is fond of children.?

I liked this man immediately. He was a tall, older man with grandfatherly qualities. He had ten children of his own and one of them had Down syndrome. He knew what it meant to be a parent like me. And he knew that Elizabeth was a child to be enjoyed ? not abhorred. He was thrilled by Elizabeth's happy nature and kissed her often. How I love to be with people who like Elizabeth ? who did not think her a tragedy.

The doctor made no mention of the fact that she functioned like a three-month-old infant, but rather discussed how wonderful her skin color looked ? how healthy she was despite the microcephaly. He was not upset that Elizabeth was not in school; he supported my decision as a parent. He agreed to keep Elizabeth on low-dose antibiotics until he determined that her ears could function without them. He was a man who only considered surgery for Elizabeth as a last resort. I liked that perspective.

Elizabeth made little progress that third year. But I held undiminished hope for God to do something good for her. One of my cousins met Elizabeth for the first time that year. The words of a song played across his mind. He believed the following words were from God:

?Elizabeth's Song?

You are so beautiful

Remember the dream

Of the day you'd soon wake up

From a long season's sleep.

And from out of the garden

From a sweet winter's dew

Would spring forth the promise

That Jesus made you.

Elizabeth, the time will come

When Jesus will heal His wounded ones

Oh Elizabeth, only believe

Let Jesus your Maker soon finish His piece.

Though the world would try to taunt you

And the heathens dig a grave

You are full of more of Christ's rich blood

Than the lie that sets their pace

Cause this world is more a battle

Of the things we cannot see.

And our only hope is Jesus.

That is why you must believe.

Jim and I found joy in these words. We love to dream about what it will be like when Elizabeth can move about and tell us what's on her mind. Yet we also enjoy Elizabeth's compliant, meek spirit. It makes her a pleasure to raise. And having a meek spirit has eternal advantages, as promised in the Beatitudes, ?Blessed are the meek, for they shall inherit the earth.? 

PART IV

TELLING THE STORY:

THE FOURTH AND FIFTH YEARS

.22.

Pneumonia

?Why are you downcast, O my soul? Why so disturbed within me?

Put your hope in God, for I will yet praise him, my savior and my God.?

Psalm 43:5

At the beginning of spring I reflected happily that Elizabeth had not been ill all winter. No ear infections and no pneumonia. Was she ready to have more contact with children? I hoped so. Elizabeth loved being touched and watching the antics of little ones. I decided to provide daycare for two sisters, age three and four, to earn a little extra money and to have extra company for Elizabeth. It was a big mistake. Elizabeth immediately enjoyed the company of the girls. But her enjoyment came with a price. Elizabeth's immune system was still not strong enough to protect her from the many germs they carried. For a few months, she caught one cold after another. This time the colds did not transform into ear infections. They turned into pneumonia.

Jim's aunt called our family reunion a ?bittersweet? affair, referring to the obvious hole left by family members who had died. Jim's father had died suddenly of a heart attack that year. He seemed so healthy and young. Naturally, we all grieved. Gone was the man who spent hours praying for and cuddling Elizabeth. Gone was the man who always told Jim, ?Everything will turn out all right,? especially with regard to Elizabeth. There were other bittersweet moments with which to cope. I managed to rein in my tears while watching all the little girl cousins running around trying to kiss the boys, which made me long all the more for Elizabeth to be chasing with them.

During the car ride back to Maryland, however, my tears flowed freely. One of our taped Bible songs sang out Psalm 27: ?Wait for the Lord, wait for the Lord; be strong and let your heart take courage, and wait for the Lord,? I considered Elizabeth's delays and cried. ?How long must I wait? How long must Elizabeth wait??

Jacqueline slept on as I sobbed. Jim held my hand and drove quietly. When my tears subsided, sadness seemed to have drained away. Jacqueline awoke and she stretched out her hand towards Elizabeth. She began stroking her arm. ?I'm so glad God gave Elizabeth to us and not to some other family. I love having her as my sister because she is so beautiful ? and kind.?

I looked at the love on Jacqueline's face and the pleasure on Elizabeth's as Jacqueline continued to touch her. ?Yes, God,? I thought, ?You have been good to us. I can wait for you.? I could not give up hope, faith, or gratitude.

.26.

Elizabeth at Four

?You will be sad, but your sadness will turn into joy.?

John 16:20

On Elizabeth's fourth birthday, I reflected on her growth, and how we had all grown. My reflections evolved into another form letter to family and friends.

Dear Family and Friends, December 19, 1993

We've had fun this month preparing for Elizabeth's birthday party and for Christmas. Yesterday, the 18th, was Elizabeth's fourth birthday.

In the morning I sat Elizabeth in her stroller so she could keep me company as I wrapped Christmas presents. I glanced at her smiling, contented face, and was filled with thankfulness as I recalled her arrival four years ago. All of a sudden, I sat stunned ? I was reliving her birth as if it were a happy memory. I had only been thinking of the moments I held her and noticed how sweet she was ? not how horrified I was at the prospect of her dismal future. I was thrilled to realize that God had erased the sting of my overwhelming anguish and in its place had magnified the happy memories.

This year, I decided that Elizabeth's birthday party would have a ballet theme. I got the idea a few weeks ago when Jim saw a newspaper article about a young woman named Joy in our church who is a ballerina and was dancing at a children's hospital. What is remarkable about it is the fact that Joy had once been a patient there ? a cancer patient. She had been healed both supernaturally and with the help of the doctors. One doctor commented in the article, ?You don't forget this kind of patient: a long-term survivor. A good example. It's unusual she becomes a ballerina. She is one of the lucky ones.?

I thought if Joy can become a ballerina with God's help, so can Elizabeth. My grandmother and cousin were both professional ballerinas ? the ability to dance is in her background. So, we bought her a beautiful yellow dancing outfit with an attached tutu and invited one of Jacqueline's friends over. She loves to dance and to play with Elizabeth. Jim's sister Kathie, unaware of my new dream for Elizabeth, sent her a beautiful pink sweatsuit for her birthday ? one that just happens to have ballet slippers embroidered on the top. And Jim's sister-in-law Maria sent her a little shirt just covered with ballet slippers.

Another present Elizabeth received was also very special. Jim's other sister Marianne mailed us a package. Elizabeth sat happily in my lap in the kitchen as we opened the card first. I read it aloud to her. It said, ?I made this just for you, Elizabeth.? When I opened the box and unveiled a beautiful flower-print dress made of flannel and lace, tears came to my eyes. I thought, ?So many hours of sewing for a little girl who can't even say, `Thank you.'? I felt God's pleasure in Marianne's gift.

When it came time for Elizabeth's party we dressed her in her new dancing outfit, rolled up the rug and put on our videotape of the Nutcracker for inspiration. I held Elizabeth in a standing position so we could take her picture. To our amazement, she stood so straight and tall that I had only to balance her with one hand. We were delighted and took many pictures before she crumpled from all the effort. Jacqueline later told me she thinks God is healing Elizabeth ? ?step by step.?

We placed Elizabeth in her walker then, and Jacqueline and her friend placed a wooden nutcracker doll on her tray so he could protect her from the evil Mouse King. Elizabeth smiled as the girls leaped about in front of her. The soft glow of the lighted Christmas tree reflected on Elizabeth?s face. Jim lifted his daughter out of the walker and swirled her around and around, high in the air. She giggled in delight at the spinning room, at the air on her face, at the Christmas lights, and especially at her father's smiling face. Despite the odd combinations of Elizabeth's outfit ? a yellow tutu, pink and white foot orthotics, and Barney sneakers ? I smiled and thought, ?Tonight, Elizabeth is the loveliest ballerina in all the world.?

Merry Christmas everyone.

Love,

Lisa and Jim

 

.31.

The Writing Life

?Do not neglect the gift you have.? 

1Timothy 4:14

With Elizabeth settled in at school, several hours a day opened to me. What should I do with them? I helped at both Jacqueline's and Elizabeth's schools once a week. I also did some bookkeeping from home. I still needed to be at home, since the girls had different days off, and I also needed to be available when they were sick. So I ruled out full-time work. Perhaps now was the time to devote myself to writing.

Since people seemed to relate both to the anguish and the levity of my letters, I figured they could easily be turned into publishable articles and perhaps someday a book. So upon the advice of other writers, I opened The Writer?s Market and learned how to submit short stories to magazines.

I sent my first story to Good Housekeeping magazine. I figured they'd be thrilled to publish my humorous piece about the panic of guests arriving when the house is a mess. To make sure they'd realize what a great find I was, I mentioned in my cover letter that I wrote just like Erma Bombeck. But instead of receiving their adulation, I received, ?Thanks, but no thanks.? Well, I thought, they'll be sorry! Another magazine will snatch up my article and offer me a column. I'll be a household name! As quickly as I could address the envelopes, I sent my stories to other popular women's magazines. They rejected me too! Then on to lesser known magazines. Still no nibbles. Although the wind was leaving my sails, I pressed on, crafting story after story, pleading with publishers to notice me.

One evening, while I was deeply engrossed in the story I was tapping out on my PC, the phone rang. ?Is this Lisa Saunders??

Irritated, I answered reluctantly, ?Yes,? resenting the interruption of my story-telling mood by someone probably trying to sell me something.

Sensing my irritation at the unexpected phone call, the woman quickly continued, ?Mrs. Saunders, I'm sorry to bother you. I'm from Welcome Home magazine. We really enjoyed your ?Camping? and ?My Apple Obsession? stories. Do we have your permission to publish them? We'd like to run the camping one in September and the apple one in October, but we can only pay you by sending three complimentary magazines. Is that okay??

?That's great! I'm so sorry I was mean to you. I thought you were a salesperson. Of course you can publish my stories!? I told the entire Eastern Seaboard I had finally been discovered and was on my way!

The September issue of Welcome Home finally came in the mail. I couldn't wait to show it off! I pulled the magazine from the mailbox and stood on the porch, opening it to the table of contents. Wait a minute. I don't see my byline. I flipped through the rest of it. My camping story was nowhere to be found! I called the magazine.

?I'm sorry, Mrs. Saunders, we ran out of space,? the editor explained. ?We found a humorous piece about laundry that fit better with this month's theme.?

Devastated, I read the article that ousted mine. I had to admit, it was pretty funny. But I have funny laundry, too. Why didn?t I think to write about what a riot doing my laundry is?

Then October came along with another issue of Welcome Home in my mailbox. And there was my story! My phone wasn't ringing off the hook with admiring fans, but as a writer, I had arrived (sort of). I doubted Good Housekeeping was jealous, but I was thrilled. I was finally a published author!

As hard as it was to get just that one story published, I knew it was time to write a more difficult article ? one solely about Elizabeth. This time, acceptance came much more quickly. My sister-in-law Kathie phoned to tell me she met the editor of Challenge Magazine, a magazine devoted to people with physical and mental disabilities and those who work with them. Kathie mentioned that I was a writer, and the editor asked if I could send a sample of my work. I sent ?Elizabeth ? A Christmas Blessing? immediately and the magazine's editor phoned me shortly thereafter.

?I knew your story was perfect for our fall issue the moment I read your title,? she said. Hum, I thought. So it?s not the story that counts, it?s the title!

The time had come to write a full length book about my journey with Elizabeth. Working on our story eased my agony over her condition, even though I knew it may never find a publisher. As my anguish flowed from my heart and onto the keyboard, its impact drained slowly from my soul. While I wrote, I recalled scriptures that spoke directly about suffering or moments that had taught me how to think positively about my experiences.

Upon completion, I sent out proposals to several Christian presses. The rejection slips began pouring in. Nearly thirty publishers refused my book saying things like, ?We don't do personal experience stories,? or ?We just did a story like that.? One rejection letter stated, ?Our editor just died.? (I didn?t think my cover letter was that bad!)

In the midst of all this waiting and rejection, I decided to move on. The voices of my eccentric relatives from childhood summers spent in upstate New York were calling me.

Memories of my great-grandfather's bed clanging back and forth in his bedroom on railroad-like tracks, my aunt hiding her cookies and Twinkies in her dishwasher, my grandmother?s stories and homemade goodies, and the terror of riding my ornery pony, all blossomed into a children's novel, Ride A Horse Not An Elevator. It was basically a true story except the part where I, the heroine overcomes my fear of riding my pony all alone to go for help when my grandfather is injured by a charging cow. In reality, my grandfather and I walked slowly back to his house, while he held his chest full of broken ribs. The main character bears my name, but I changed everybody else?s. (My mother complained I made her family look too ridiculous with my tales of outhouses and false teeth.)

The book?s themes came as a result of raising Elizabeth: overcoming fear and finding unconditional love. When God taught me that love overcomes fear with regard to Elizabeth, I was set free. Fear cripples. I wanted to teach kids that God provides a way to overcome fear. Fictionalizing my story helped illustrate this point. Lisa is terrified of the new pony her grandparents give her and refuses to ride it any longer. But when Lisa's grandfather is injured by a charging cow, he needs her to ride alone to get help. She is afraid, but remembers her grandmother quoting the scripture, ?Perfect love casts out fear.? Lisa loves her grandfather and knows what she must do. Unconditional love, the other theme in Ride a Horse, also resulted from my learning to love Elizabeth. Lisa is a chubby girl who is taunted in the city for her looks. But on the farm, she finds a friend, Martha Motto, who thinks Lisa looks just fine. Martha says, ?I don't think you're fat. I think you look just like a Lisa should look.?

.32.

Christmas ?Presence?

?I waited patiently for the Lord; he turned to me and he heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God.?

Psalm 40:1-3

THE SIXTH YEAR

.33.

Spreading the Word

?Praise be to ... the God of all comfort, who comforts us in all our troubles,

so that we can comfort those in any trouble with the comfort we ourselves have received from God.?

2 Corinthians 1:3-4

Tired of trying to find a publisher for my book about Elizabeth, I decided to publish it myself. I wanted to share my story with others, with or without the backing of an established press. I titled it A Time to Weep and A Time to Laugh, paid a word-processor typist to put it into book format, and spiral-bound it in my garage (suffocating in the heat of a particularly steamy Maryland summer) with an old binding machine. I made about 100 copies.

Marketing my self-published book (while still writing Ride a Horse Not an Elevator) was more difficult and time-consuming than I realized. Most bookstores refused to buy copies outright, but wanted to sell them on consignment. I would not get paid until they all sold. Many bookstores did not pay any attention to whether they sold or not. My books were often hidden behind more publicized paperbacks, and when I sent those interested in my story to the shop to buy it, the clerks often did not know they had it. The problem grew more aggravating when a local newspaper printed an excerpt, but neglected to tell readers where they could get a copy of the book.

I began to feel like an egotistical fool for putting all this effort and money into getting my story out. Why had I done it? I felt compelled to, that was all I knew.

At first I felt embarrassed promoting a book to the news media that had been rejected by publishers. But thanks to Jim?s mother?s connections, his hometown paper in upstate New York learned of my story and asked to run an article profiling me and the book. The editor thought my book chronicled a valuable story, and she remembered to include which bookstores carried it.

Shortly thereafter, a letter with an unfamiliar return address appeared in my mailbox. It contained pictures of a little girl who looked strikingly like Elizabeth. She, too, had an abnormally small head.

Dear Lisa Saunders,

I recently read an article ... about your daughter Elizabeth.... I just had to buy your book.. I loved reading your book. I hope you will find time to write back because I'd love talking to someone in our position that's going through the same thing...

I hope you don't mind me writing you about our daughters. It makes me feel a little better talking or writing about [my daughter] because I've had a hard time with accepting her disabilities....

I hope to hear from you. Thank you for writing your book. It helped a lot.

I sat down to write to her, but stopped. I just had to call her first. The woman was surprised to hear from me. She actually thought I was some famous author. Initially, her husband discouraged her from writing to me. He said, ?She probably gets tons of letters. She's not going to have time to write you back.?

?I can't thank you enough for writing.? I replied. ?Yours is the first letter I've ever received from a reader. I'm thrilled to know all my hard work hasn't been in vain.?

Speaking with that mother was wonderful, but also painful. Hearing her heartaches and daughter's health problems reopened some old wounds. Like me, this mother had also caught cytomegalovirus while pregnant. Aside from dealing with her own heartache, she had struggled to keep her daughter alive. Like Elizabeth, her daughter easily caught colds that turned into pneumonia. She was often on oxygen. Her breathing problems were worse than Elizabeth's. It was difficult listening to her child's suffering. I realized connecting with other parents was not always going to be easy. After we prayed together for her daughter, we hung up.

Oh God, when are you going to heal Elizabeth and others like her?

 

.37.

Celebrating the Goodness of God

Jesus said, ?whoever welcomes a little child in my name welcomes me.?

Matthew 18:5

In preparation for the girls' birthdays and upcoming holidays, we wanted to celebrate the goodness of God with a family trip to Disney World. No, Elizabeth had not made astonishing improvements, but the staff at her school knew of her advances and were quick to tell me. Her speech therapist, who does not share my beliefs, remarked to Elizabeth's physical therapist: ?Maybe there is something to praying to God. Lisa prays for Elizabeth and look at all the improvements she's made.?

Perhaps my prayers were not answered exactly as I expected, or as quickly as I so desperately wanted, but prayers were indeed answered and God continues to show us love and mercy and the power of his miracles every day. Unlike my Christmas form letter of six years ago detailing Elizabeth's birth, my Christmas form letter of 1995 was truly filled with glad tidings.

Dear Family and Friends, November 28, 1995

Well, we did it?we made it to Disney World. We can scratch it off our list of things we wanted to do for our children.

Because of the expense and distance, we had previously planned to visit Disney World only to celebrate God's miraculous healing of Elizabeth. Although the miraculous has yet to happen, we decided to celebrate anyway for we have much to be thankful for. Elizabeth is alive and brings much joy to Jacqueline and Jim and me. She can breathe and eat on her own, she can go anywhere a wheelchair allows, and she is the happiest little person we have ever met. To her, life is good when we cuddle her, take her for long car rides, or for walks in her wheelchair.

Jacqueline, of course, was thrilled at everything she saw at Disney World. Elizabeth especially enjoyed the long car ride down and the all-day riding in her wheelchair. Because of Elizabeth's condition, we were often treated like royalty at the theme parks. On the rides, we were ushered right on, instead of having the average forty-five minute wait. Many times it was easier to take her out of her wheelchair and sit her on our laps rather than wait for a special wheelchair car for many of the gentle rides through imaginary lands. Of course she loved the cuddling and perhaps spent more time looking up at the faces of Jim or me than she did at all the special effects. She did, however, thoroughly enjoy the E.T. ride.

We thought we could sit her squashed between us, but once on the ride, we realized she had her own seat in the space between Jim's and mine. We propped her arms over the handle bars and we each held her up under her arms. It was nerve wracking when the bicycle-like contraption left the ground and we were flying through the air, bumping along through outer space. Elizabeth lit up with each bump and held her head high. She smiled at all the special effects along her quest to help E.T. get home. She looked like such a big girl in her very own seat. She was proud of herself, and we were proud of her. Jim and I both later agreed that ride was our favorite.

Love,

Lisa, Jim, Jacqueline, and Elizabeth

.39.

Jackie vs. Elizabeth

?Her children rise up and call her blessed.?

Proverbs 31:28

 

.40.

?Help!?

?For I was ? sick and you looked after Me; in prison and you visited Me?.insofar as you did it to one of the least of these brothers of Mine, you did it to Me.?

(Mt. 25:34-40)

.41.

Exhaustion Prompts a Major Decision

?We were so utterly, unbearably crushed that we despaired of life itself. Why, we felt that we had received the sentence of death; but that was to make us rely not on ourselves but on God who raises the dead,...and he will deliver us; on him we have set our hope....?

2 Corinthians 1:8-10

 

.42.

Surgery after 9/11

?The days are coming when they will say, ?Blessed are the barren, the wombs that never bore children, and the breasts that never nursed!? Then they will begin to say to the mountains, ?Fall on us!? and to the hills, ?Cover us!??

Luke 23:29-30

 

.43.

The American Civil War

?We have shared the incommunicable experience of war. We have felt, we still feel, the passion of life to its top.?

Oliver Wendell Holmes, Jr. (Not a Scripture, I know, but I felt like raising Elizabeth was a lot like war!)

 

.44.

Elizabeth Continues to Live Life on the Edge

?Just as each of us has one body with many members, and these members do not all have the same function, so in Christ we who are many form one body, and each member belongs to all the others. We have different gifts, according to the grace given us.?

Romans 12:4-6

  

EPILOGUE I

Life Goes On

?He will wipe away every tear. There will be no more death or mourning or crying or pain.?

Revelation 21:4

Dear Family, Friends, Parents, Teachers, and Readers,

As I write this, December 28th, 2003, I am in Elizabeth?s bedroom, which doubles as our computer room. She was up all night, for no reason in particular, and is now catching up on her sleep. Afraid to wake her, Jim is preparing to go to church alone. Jackie, who is paid to sing at another church on holidays, has already left for her job. The only one pestering me right now is Riley. He wants his walk. Soon he will be nudging my hand on the keyboard, making it impossible for me to write.

Hearing of the imminent release of Ever True, a local newspaper contacted me to set up an interview in my home. She wants to bring photographers! ?Can?t you just use a picture of me from about ten years ago?? I mean technically that is when I started the book. And I was thinner then too.

?Well, we really like to have a current photograph of authors.? Oh well, back to the dieting drawing board.

And now I have a new worry: How to keep the dog and all his hair off the furniture. I know authors should be pictured in a home that has that lived-in look, but our couches look a little too lived in, showing the last few years of Riley scratching and drooling on them. When visitors sit on them, Riley jumps up and leans against them (he weighs 90 pounds), pants his bad dog breath in their face, and if properly appreciated, he?ll settle his head on their lap. Some guests are appalled that I don?t shoo him off, but that?s why we hired him ? to sit on the couch, particularly with Elizabeth. If he?s really comfortable with our guests, he begins chewing contentedly on his toenails. Oh well, if I can?t get my weight down in time for the interview, the least I can do is bathe the dog and brush his teeth!

It is difficult to end this book here since the story of Elizabeth?s life and my efforts at mothering are still unfolding. There are many situations and conditions left unresolved. Any progress toward walking is stalled with the tight muscles and a hip that isn?t situated properly (although I?ve just been told that Botox injections may help release some of her tight muscles). And her epilepsy isn?t completely under control. I often marvel, however, that it is her ability to cough that has kept her alive this long. I never realized what an important skill that was until years ago. A friend of mine told Elizabeth, ?You are such a good cougher. Keep it up you clever girl.? Knowing how depressed I was over her severe handicaps, I used to think my friend was just trying to highlight something Elizabeth could do well in order to make me feel better. I finally asked her why she was so impressed by her coughing. She replied sadly, ?My niece had a muscular disease that made her unable to do so. She needed continual suctioning but eventually died. That was over ten years ago and our family still hasn?t recovered.? Ever since then, I too marvel every time Elizabeth coughs ? she is working her hardest to stay with us. And according to her developmental evaluations, she is no longer mentally a three month old, but more like a six to nine month old. She is getting smarter!

But we deeply love Elizabeth for who she is and not for what she can or cannot do. Nevertheless, Jim and I continue to bring the Lord's promise of healing ever before God. We have solemn concerns about Elizabeth's future if God delays her healing. Muscles continue to tighten, twisting her body, and we have been warned that the remaining curve in her spine could cause significant troubles later, like interfering with her bowels. One doctor said, ?It?s like she?s standing in the middle of the road with a Mack truck barreling down on her.? For us and parents like us, believing that God performs miracles is our only hope in this day-to-day struggle.

Jesus never scorned the blind or the lame for coming to him for healing. In fact, he commended them for their persistence and faith. Jesus said that we ?ought always to pray and not lose heart? (Luke 18:1). Yet fourteen years have passed with few dramatic results from our prayers. But there is one Bible story that keeps me steadfast. It is the parable of the persistent widow. She kept coming with her pleas to an unrighteous judge. Frustrated, the judge finally granted her request simply in order to be rid of the widow?s constant pestering. Jesus said: ?And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? I tell you, he will see that they get justice, and quickly. However, when the Son of Man comes, will he find faith on the earth?? (Luke 18:7-8). I want God to find faith on this earth. I want him to find it in me. This is true even if I am one of those who are added to those who were ?commended for their faith, yet none of them received what had been promised? (Hebrews 11:39).

Someday Elizabeth?s suffering will end. And so will ours. When Christ returns, ?He will wipe away every tear. There will be no more death or mourning or crying or pain? (Revelation 21:4). While Elizabeth has life, I find great peace in knowing that with therapy, prayer, and fun (having as much of that as possible), we are doing all we can to help her get the most of out of life ? and the most for us. I learned that at Elizabeth?s classmate?s funeral when her mother rose to speak to the audience. She said something like, ?My daughter is in a better place. I have no regrets. I did the best I could to take care of her.? I want to be able to say that should Elizabeth die before us.

I am continually excited by all that God is teaching me about trials, perseverance, and compassion. No matter what I go through, the most important goal is to love God with all my heart and to love others as myself. To take care of those weaker than myself.

Recently Elizabeth was very ill, possibly with pneumonia. After sitting with her on my lap in the bathroom for several minutes, while running a hot shower to help her breath, I called for Jacqueline. ?Jackie, can you tell your dad to come and get Elizabeth. I can?t stand sitting in this heat anymore.?

?That?s O.K., Mom, I?ll sit with her in here.? I plopped Elizabeth?s large, awkward, difficult-to-hold body on her lap and left the room, overwhelmed by the love Jackie has for her sister. Earlier that day Jacqueline had willingly placed Elizabeth?s head on her lap while sitting on the couch watching T.V. With a cupped hand, she thumped repeatedly on Elizabeth?s chest in an effort to break up the pneumonia. I recalled how hurt I once was that the Jacqueline couldn?t play with her younger sister in the traditional sense. That doesn?t seem to matter anymore.

I now write every morning before work, usually at a coffee shop, so I can concentrate uninterrupted by phone calls and chores. With the completion of Ever True, I have dusted off this Elizabeth manuscript and will try again for publication. Although Good Housekeeping has yet to offer me a spot as a columnist, I forge ahead with my story-telling. I may not become a famous author until after I?m dead; nevertheless I am compelled to record each new chapter of my life! The only thing I really care to hear from God at the end of my life is ?Well done, my good and faithful servant. Enter into my rest.(Mt. 25:21)?

 

Thanks for reading about my Elizabeth. Please give the disabled child in your life a kiss and hug from me.

Lisa Saunders, Suffern, NY

?Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden light.? Matthew 11:28-30

To watch my short TV news interview about Elizabeth, her dog and CMV prevention, please click into: http://www.wusa9.com/video/default.aspx?aid=70445&storyid=80502

The Times Herald Record wrote about my life with Elizabeth and my work in CMV prevention, in the following article: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

To meet other parents who have been in touch with me about their children, visit my guestbook at: http://www.authorlisasaunders.com/pageemail.htm

To hear me talk about raising Elizabeth for 52 minutes, listen to my radio interview at: http://www.achieveradio.com/archplayer.php?showname=Fearlessly%20Speaking%20%20with%20Jacqueline%20Wales&ShowURL=http://audio.achieveradio.com/fearless-fifties/Mar-08-2009-at-02-00PM---Fearlessly_Speaking.mp3