FOREWORD

When Lisa asked me to help her come up with a title for her book about Elizabeth, I suggested something else like When God Failed Me and Elizabeth - Or Maybe Not!, because that title, like her book, starts out interesting but unusual - and ends up on a positive note.

I find her relationship with God fascinating. Not because I'm highly religious -- I'm not -- but I believe in God, and the nature of God, and so do lots of folks. We all feel like sometimes God has failed us, our family, or children, and we get angry about it, overwhelmed, tired and depressed. We wonder about our beliefs, but at some point we transition through that struggle and find peace. That's what Lisa is writing about.

Lisa alternates between either asking God to strike her dead or accepting her daughter. I wanted to know how she made that journey, how her religious and spiritual views played their part, and how her personal thoughts changed over time. That kind of stuff is not generally available in the media, and I think Lisa's frankness makes Lisa’s book very very very interesting.

Lisa’s story is introspective. More than anything I’ve ever read, it reveals what it's like, up close and personal, to be the mom of a special needs child. Lisa speaks of private, sometime shocking things that most people don't discuss except in the special needs world. Her frankness about her struggle to accept her daughter and her role in her family is incredible to read. It's frightening to think of children in danger for their lives and a mother who wonders if she can love this child, and who asks God to help her. It's generally thought unnatural for a mom to speak like that openly, but in this book Lisa is honest about it. I was shocked by that, not that she thought it, but that she wrote it.

Lisa’s book helps us realize up front that bonding is not always a natural process, that it doesn't happen all of a sudden, that sometime things are very scary, when a child's life is involved. That, to me, makes this book like a thriller, but in a personal sense. It does not involve so much what happened on the outside as what is going on inside of her head. That is why I like this book; that is what makes it different from other books I've read about special-needs kids. It does not blame anyone, does not whine. It presents an epic struggle, for Lisa, Elizabeth, and their family -- and God's part in that struggle...

Mary Potter, Mom to Amanda (who has Rett Syndrome) and Noah, die-hard special needs advocate for any and all special needs children, and webmaster and co-organizer of the world's longest non-stop canoe/kayak race--an event to raise funds for Rett Syndrome.  www.dreamkeeper.org

PART I

ELIZABETH

.1.

“Elizabeth’s and Floyd’s Excellent Adventure”

 (Appeared in the “Rockland Review”)

by

Lisa Saunders

“Hey!  Can somebody please help me get on the train?!” Hurricane Floyd was roaring up the Eastern seaboard while I was traveling south.  Alone with my severely handicapped daughter, I wondered how I’d get her aboard with her stroller, car seat and our luggage.

                I recently returned to Rockland County, NY, from Maryland, after an absence of twenty years.  I remembered well as a teenager that nothing exciting ever happened here. We rarely even got snow days.  Maryland at least had violent thunderstorms that were thrilling to watch and there was always a possibility of at least a little tornado.

                When I realized that Hurricane Floyd was due to hit the day I was scheduled to take Amtrak to Maryland, I was filled with anticipation.    I was taking my youngest and we were going to help my husband Jim complete our move up North.  Now, traveling with my daughter Elizabeth means no ordinary trip - hurricane or no.  At nine, her cerebral palsy is so severe, she cannot speak, hold up her head, is still in diapers, and can only eat soft foods.  Although small, she is getting heavy!  What Elizabeth does have, however, is a ready smile and the love of adventure.  She likes nothing better than going places by car or stroller.  Sitting on my lap in the train would be a special treat.

                The cab ride itself to the Newark train station was a thrill. We had to plunge through foot-deep waters, risking stalling the car, so that the driver could get me there on time. We’d lost some time getting lost and were behind schedule, so the cab driver dumped me off in the pouring rain. There I was, struggling with my suitcase, Elizabeth, her stroller, and her car seat. Not a single harried soul there felt inclined to help this poor, distraught, running late-to-catch-the-train mother of a handicapped child. I finally figured out how to carry Elizabeth and everything, and found an elevator that went up to the track level. Just in time. The platform appeared deserted except for an old, confused woman clinging to her son.

                “Mom, I’m sorry, I have to go now – I’m illegally parked. When the train comes, just pick up your suitcase and get on it.” With that he kissed her and ran off.

                Oh sure, I’m thinking. My grandmother, even in the earliest stages of her Alzheimer’s, would never have been able to figure out how to get on the right train with her luggage and get a seat. “Don’t worry,” I assured her. “I’ll make sure you get on.” When she surveyed my situation, she didn’t look confident.

                Now what was I going to do? I always thought it was adventurous to figure out how to get Elizabeth from point A to point B, but a confused grandmother with her luggage too? How on earth were we going to leap on the train in time?

                As the train pulled in, I panicked. As people disembarked at the far end of the platform, I yelled, “Can somebody please help me get on the train!” A baggage-type person helped the grandmother, and I managed Elizabeth, stroller, suitcase, and car seat. Once on board, I knew it would be impossible to find a seat. People sprawled themselves apathetically across both seats and watched me struggle. Finally a tough looking young  man with a colorful cap grabbed my car seat and said he’d find me a seat. He ordered a woman to move her stuff, and I was situated comfortably at the end of a car. By that time, Elizabeth and I realized we were completely soaked, but we also felt exhilarated by the excitement. Little did we know: the excitement was just beginning!

                When we pulled inside the Philadelphia station, we were told over the speaker system that as a result of Hurricane Floyd, we’d be stopping there indefinitely. The other passengers groaned at the delay. All I could think of was how much more exciting this would be if we were parked outside, watching the water swirling around us, than stuck down here in the dark, dingy bowels of a train station.

                Eventually our train moved out and continued heading south. Lo, the wind did blow and the rain did descend. I watched the flooding with awe.

                I took Elizabeth to the dining car, so I could stock up on cookies and other necessary supplies, just in case we got stuck again. The man behind the food counter noticed Elizabeth and let me cut in front of everyone. Traveling with her does have its advantages! I asked him not to sell the last yogurt. That was the only soft food that Elizabeth could eat if we were forced to stop again for long periods. He promised he would keep it for her.

                As we chugged along southward, the water on the tracks grew deep. We plowed slowly through it. Then stopped. We stopped and started several times, while they kept clearing the tracks of fallen trees. Stranded automobiles along the way sat parked with water up to their windows. During one of our stops, it was announced that we would be stopped for an indefinite period of time. The signals were down, and we could not cross over a bridge which lay just ahead. We were told to remain calm – that's always a confidence booster – and to go to the dining car for free food. One woman ran to the dining car and started screaming hysterically. “You have no biscottis! That’s what I wanted – I wanted biscottis!” A true New Yorker!

                Elizabeth, of course, was having a ball. All this stalling meant more time cuddling in my lap. She turned her head up to look at me and smiled contentedly, fully unaware that no one else around her felt such joy. When I was forced to leave her in her car seat to forage for food, the bored woman across the aisle seemed pleased to watch her, glad to have some purpose in life.

                When my turn arrived in the dining car, I was alarmed to learn that all the yogurt was gone. There was a different man behind the counter who knew nothing of the promised yogurt. He was still recovering from the biscotti lady. I panicked for a moment. What if we are here overnight? What if Elizabeth starved? Could I keep her warm enough? What if, Heaven forbid, I ran out of diapers?

                I felt like a distraught mother in one of those disaster movies, enduring all kinds of perils to keep her child alive. Suddenly I noticed someone with an uneaten yogurt on her lap. I paused before asking – but this had to be done. “Excuse me,” I said, “I have a handicapped child, and yogurt is the only thing she can eat. Can I trade my sandwich for that?”

                “Of course,” she said unhesitatingly.

                Another woman overheard us. “Here, take mine, too.”

                My disaster movie, getting better all the time, rolled along as more of these previously apathetic people came forward with their yogurts. One old man, who shared my sense of adventure, went around taking pictures of our plight. He took a picture of me standing in the aisle, arms stacked with yogurts.

                After standing still in one spot for several hours, we again were on the move. But we got stuck again on a low bridge over a wide body of rising water. The wind blew fiercely, and I couldn't help pondering the problem of getting Elizabeth off a flooded train. And the worst fear of all: How would I hold her head above the rushing water? Maybe this wasn't fun after all.

                Eventually we chugged on and pulled into Baltimore. We were told that it was the end of the line. They just could not go any further and we would have to take a bus. Again I was faced with the chore of getting Elizabeth and our stuff through a crowd, this time packed with tired, angry people. When the bus came for us, I just was not able to plow through the pushing throng in time to catch it. This was too much adventure, even for me. Elizabeth was getting wet in the rain and colder all the time. Knowing how poor her circulation was, and how purple her hands and feet can become, I started to cry.

                Seeing my distress, one bus driver, who wasn't even headed to where I was going, got out of his seat and carried Elizabeth aboard. “I’ll take you where you need to go,” he said. Fearing he'd just plop Elizabeth  down, assuming she could sit up by herself, I frantically shoved my way through the packed aisle yelling, “Please be careful! She can't sit up by herself!”

I heard a woman yell forward, “Don’t worry, I’m holding her up.”  Saved again!

My husband, Jim, was pacing with anxiety when we finally pulled in to New Carrolton, MD. What should have been a three-hour train trip, ended up taking ten hours as a result of Hurricane Floyd. I guess things can be exciting in New York after all.  Well…we were on our way to Maryland!

.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…

. 3.

Falling In Love

“For this reason a man shall leave his father and mother

 and be joined to his wife, and the two shall become one flesh.”

Ephesians 5:31

                When I first laid eyes on Jim, I thought “Wow.” We met at a fraternity party at Cornell University in Ithaca, New York. I was a business major in my junior year. Although upstate New York is normally chilly in the fall, a warm breeze heated that evening. Jim looked strikingly tanned and handsome in his bright, short-sleeved shirt. He stood in the driveway with a small crowd while I chatted nearby with friends. Then, one of the guys in my circle pointed toward Jim and said, “Hey, there's one of my friends, come over and meet him.” I could not believe my luck. He introduced us, and immediately we became deeply absorbed in conversation.

                To my delight, Jim was friendly and sensitive. He enjoyed telling me about his work in 4-H over the past summer. He had been writing about the evils of salt. He was a nutrition major in his senior year preparing to become a counselor to the overweight and the sick. Somehow he got onto the topic of his future plans, mentioning his desire to have a wife and kids. I found myself wondering, “Maybe I could be his wife and supply the kids. Am I talking to Mr. Right?” We began seeing each other regularly.

                Ithaca is a beautiful setting for a love story. In the fall, we buried each other in huge piles of leaves and hiked in the wooded hills. In winter, we pelted each other with snowballs and rode down the slopes on cafeteria trays. In the summer, we walked down into the deep, cool, leafy gorges and swam under the waterfalls. Even doing the laundry or studying together in the library seemed romantic.

                Jim appeared quiet and shy to many, but he was not that way with me. We never ran out of things to talk about, and we agreed on everything from our views on Christianity to the importance of chocolate chip cookies. One night, in a sleazy, smoke-filled bar, we beat a couple of townies at a game of pool. That's when Jim knew we made a good team. Although we didn’t discuss it, we both thought that marriage might very well be in our future.

                Upon graduation, I returned home to my parents in Suffern, New York. I started looking for a job in the business world, either in management or marketing. The next fall, Jim enrolled as a graduate student at the University of Maryland near Washington, D.C. We wrote and called one another constantly and visited each other once each month.

                Our visits were very romantic. We often cried when parting. One of Jim's visits to my home, however, ended in disaster. My father sent us to a gas station to add oil to his car. Jim, wanting to show off his handyman prowess, insisted on purchasing the oil from the station and adding it himself. Although he excelled in the world of academics, I felt insecure about his mechanical abilities. We pulled the car off to a corner of the station's parking lot and Jim confidently began pouring the oil in some hole he had found. To my horror, fluid immediately began flowing out. Both he and I agreed that this was a bad sign. I made him swallow his pride and ask the gas station attendant for help. He exclaimed, “Oh, man, you put the oil in the power-steering fluid reservoir.” I could not believe it. The attendant suggested draining the reservoir and consulting a mechanic in the morning. Upon draining it, we fearfully drove the several long miles home. The car lumbered around curves and shimmied down the road, and we prayed we would not get into an accident.

                How was I going to explain this to my father? Not wanting my father to know how foolish Jim had been, I decided to tell him I had done it. This way, Jim could be spared the humiliation, and my father could retain his favorable opinion of him. Timidly, I walked into my father's room, closed the door and revealed “my” stupidity. When he could listen no longer he roared, “Of all the idiocy! I can't believe you would try something this moronic!” My father started pacing and muttering, which signaled my cue to leave.

                I returned to my room to find Jim hiding out there. He appeared ashamed for allowing me to take the blame. I assured him it was the only way. We finally got the car fixed, and all was forgiven. My father later revealed he knew all along who the real culprit was since I was not the do-it-yourself type. I only hoped Jim would still consider marrying me. Not too many men would want to take on my dad as a father-in-law.

                But eventually, over dinner in a fancy hamburger restaurant a few days before Christmas, Jim lifted his glass to mine, nervously cleared his throat and asked, “How would you like to spend the rest of your Christmases with me?”

                I could not believe it. All of my dreams had just come true. Thrilled, I exclaimed, “Yes!”

                Planning our wedding was not as filled with tender moments as I had imagined. There were many worries. For one example, when Jim is nervous, his expression is grim. The minister and I repeatedly coached him to smile when he saw me coming down the aisle. I knew I would be upset if he looked on miserably while I was making my grand entrance. I was concerned about my own conduct as well. When nervous, I giggle, turn red, and sweat. I'm known for doing that at weddings, as well as funerals.

                But my biggest concern about the wedding was, “Will I be able to squeeze into my mother's wedding dress in time?” She was smaller than me when she married, but for the romance of it all, I just had to wear her dress. When I zipped it up, I looked nothing like her on her wedding day. She had looked like Princess Grace while I looked more like a suffocating stuffed sausage. I dieted with little success (maybe because I forgot to eat less). A week before the ceremony, I faced the inevitable – I would have to endure the entire day looking ridiculous and gasping for breath. Oh, why hadn't we just eloped?

                The big day finally arrived. True to the weatherman's forecast, it poured. I awoke after a fitful night's sleep exhausted, nervous, but excited. I was going to get my man.

                The hour came – the time to drive to the church. In an effort to squeeze into the car between raindrops, I accidentally rubbed against the door hinge and streaked grease on the backside of my gown. Thankfully, I did not realize this until after the wedding. I never would have proceeded up the aisle knowing that as I walked forward with dignity, a big grease stain swayed back and forth on my backside.

                Jim smiled as my father escorted me toward him. Overcome with emotion, I shed a few tears, and so did my father.

                The actual wedding service blurred by me. I was too weak and nervous to pay attention. The pastor said something about a puzzle and the pieces. Jim and I wrote our own vows; the pastor read them and we repeated after him. Jim did not want the pastor to read the end where Jim and I took turns saying “I love you Lisa/Jim and always will.” Jim wanted the exchange to look spontaneous, which I understood, but I thought relying on our memories at so anxious a time was too risky.

                Earlier I had asked Jim, “Are you sure you'll remember to say it by yourself?”

                Insulted, he replied, “Of course I will.”

                But when the spotlight shone on him, Jim just stood there speechless, not realizing he was supposed to say anything. I could only hope our wedding guests thought him too awestruck by my radiance to speak. I could not take his awkward silence any longer, so whispering through side-pursed lips, I anxiously coached, “I love you, Lisa, and always will.” He looked on blankly. He still had no clue he was to parrot this back passionately. I repeated myself, except louder, with my lips stretching even farther sideways, hoping to direct my voice away from our guests. Mercifully, Jim caught on and repeated after me. Although he did not say it with the emotion I had hoped, we could get on with the ceremony.

                After a long and festive reception, we eventually reached Princeton, New Jersey, where in a charming old inn, we spent our first night as man and wife. When we got to our room, I waited for Jim to carry me across the threshold. He looked worried. Not only was he exhausted, but living the life of a bachelor student had left him ten pounds lighter than me. But he fulfilled his duty. He laboriously dragged me over the threshold. So began our official wedded life. Having survived the wedding day, we figured we could survive anything in life. Little did we know what lay ahead.

.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.

                Labor with Elizabeth started on Monday, December 18th, 1989. The contractions were regular, but not painful. My doctor instructed me to meet her immediately at the hospital. Still comfortable and without pain, I actually enjoyed the niceties of my birthing room – complete with its color television and pretty flowered wallpaper. Jim and I watched a never-before-aired “I Love Lucy” Christmas special. The Ricardos and Mertzes decorated a Christmas tree and fondly reminisced about the birth of Little Ricky. Given the miscarriage, I thought perhaps God was making everything about Elizabeth's birth extra special. What joy this child would bring us – a perfect Christmas present. After the “Lucy” show, my labor pains intensified. I begged for drugs, but there were none available. The doctor did not arrive in time to authorize medication, or to deliver the baby for that matter. Just in time, a nurse dragged a doctor in from the hall and Elizabeth Ann arrived. 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,