Elizabeth .. A Christmas Blessing
A parent shares her experience of birthing and raising a child with profound disability.
By Lisa Saunders
Expecting our second child, due to arrive Christmas Eve, had been a delightful experience. What a Christmas present! But the moment Elizabeth was born, I felt a stab of fear. I knew there was something very wrong. My immediate thought was, "Her head looks so small...so deformed." Before she was twelve hours old, I was to find out the reason why.
When the neonatologist came to my room to give me the diagnosis, his manner was blunt, almost cruel. He said, "Your daughter has profound microcephaly--her brain is extremely damaged throughout. If she lives, 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 concluded that Elizabeth's birth defects were caused by a virus known as cytomegalovirus--a virus that can but rarely does cause this kind of devastation.
"My life is over," I thought. Despite being a Christian who believes the promises of the Bible are true (such as that God heals and that "all things work together for the good"), I was devastated. I asked God to heal her instantly, but since he didn't, I begged him to strike me dead. I just couldn't handle raising such an afflicted child. Period. Although I knew through my knowledge of Scripture that Elizabeth's arrival was a blessing, I felt far from blessed--I felt stricken.
Thankfully Jim's love for Elizabeth far outweighed his grief. When I watched him look at her, the tenderness in his face showed his compassion. He said, "I want to protect her from this cruel world she has been born into."
"Oh God," I prayed, "please help me love Elizabeth too."
The time we spent in the hospital was a nightmare. I dreaded seeing Elizabeth's neonatologist. To him, Elizabeth was a tragedy. But the nurses who cared for her were positive and kind. "Elizabeth loves to have her head rubbed," they'd say, or "She's a good eater." Elizabeth was not a bad prognosis to them, but a little girl worthy of affection. Those women were the first to plant seeds of love in my heart towards my daughter.
Before we left the hospital with Elizabeth, her pediatrician said, "God has chosen you to raise Elizabeth." He was the first doctor to suggest this wasn't some hopeless, meaningless tragedy. Since God knew her before she was formed in my womb, I knew he was right. Come what may, God loved Elizabeth before she was conceived and knew she belonged in our family.
We took Elizabeth home Friday morning, December 22. Although Elizabeth was no longer at death's door, my horror over her prognosis had not left. But I had to fight through it; Christmas preparations needed to be made. Christmas had not turned out as hoped.
Initially, whenever I looked upon Elizabeth, my heart broke afresh--all I could see was her prognosis. It was as if the prognosis was more of a person than she was. This "prognosis" was like a living creature relentlessly torturing me. I couldn't seem to get past it and see Elizabeth for the sweet little girl she was.
In those early months of Elizabeth's life it seemed all I could do was rock Elizabeth and read the Bible. God's Word was the only thing that brought hope and peace. The book of Psalms especially comforted me. Many of the psalmists wrote things I wouldn't dare say to God. They questioned His love and power, thus helping me to honestly express my grief to God. I could relate to the writers' pain and feelings of abandonment as they waited on God's deliverance. Knowing I wasn't the only one despairing of life made me feel less alone in my anguish. I soon stopped asking God to kill me.
As I rocked Elizabeth, I would also listen to sad music about others who have endured indescribable suffering. Releasing my tears alone with Elizabeth and the Lord began to bring healing to my heart. Elizabeth loved to be held--something my first born daughter Jacqueline never enjoyed. Seeing Elizabeth rest contentedly in my arms brought me pleasure. And, she began looking me directly in the eyes. We had connected! (It was confirmed later that she could hear as well.)
Despite my growing love for Elizabeth, I was continually grieved by all the things she couldn't do. She couldn't lift her head, sit up, play with toys, babble, or anything. All she could do was smile--and thank God, she did that a lot!
A turning point in my lengthy depression came when Elizabeth, at eight months old, suffered excruciating and relentless muscle spasms. I called Children's Hospital. I was told she was probably having seizures and to get her to the emergency room. "Oh God, I can't take another problem...where are You?"
As I watched Elizabeth jerk in agony on the hospital examining table, I seriously doubted God's love for us. How could He let her endure this? How was this supposed to work for our family's good? The emergency room doctor did not think Elizabeth was having seizures and sent her home with an antibiotic, believing that would be the cure. But her condition did not improve.
That afternoon I read a book on the power of praising God and being thankful. So I began thanking God for every thing I could think of, like Elizabeth's ability to see and hear. I even thanked God for this trial, trying desperately to believe He would use it for good. Although my anguish over Elizabeth was not eased, praising God kept me close to His comfort and far from despair. The following day, I brought Elizabeth to her regular pediatrician. He quickly diagnosed her as having a simple case of gastroenteritis! The medicine he prescribed began to ease her pain immediately.
When Elizabeth recovered from her bout of gastroenteritis and became her cheerful self again, my soul rejoiced with happiness. For the first time, I enjoyed several days in a row when Elizabeth's delayed development didn't overwhelm me with sadness. I was just grateful that she felt good and was able to smile again. From then on, I tried to keep my mind focused on the good.
When Jesus raised Jairus' daughter from the dead, Jesus told her family that she wasn't dead--just resting. When I was tempted to become depressed by how delayed Elizabeth looked, I would remind myself that her present condition didn't mean she would never be normal...she was just resting! All kids develop at different rates, and Elizabeth's rate was just a little more different than most! Even if God never healed her earthly body, her afflictions were still only temporary.
During the months between Elizabeth's bout with gastroenteritis and her first birthday, I spent more time appreciating the lovely things about Elizabeth. 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 couldn't sit around and pass toys back and forth, or mill around the back yard together, but they enjoyed snuggling while watching a movie or listening to a story. Elizabeth loved to watch Jacqueline's endless ballet performances in the living room. The more leaping the better. And of course Jacqueline thought Elizabeth was a great audience, as she was the only one who would stay put until the bitter end of her performances!
We had much to celebrate by Elizabeth's first birthday, her second Christmas. For one, Elizabeth had survived! Despite her limitations, she was the happiest person Jim and I had ever met. When we looked upon her, we no longer "saw" all her abnormalities; all we saw was her pure, cheerful heart. We couldn't imagine being a happy family without her.
Elizabeth's therapist told me not to get depressed about her developmental level (which, sadly, she put at two months) but to look at all the improvements she had made. Her arms were less stiff and she was better able to follow brightly colored toys with her eyes. These sound like minor skills, but given the condition of her brain, they were not.
And we had another reason to celebrate that Christmas: God gave me the unconditional love for Elizabeth that I had prayed for! And I had learned the exciting lesson that "I can do all things through Christ who strengthens me." What a Christmas present!
Although I battled sadness over the fact that Elizabeth was unable to play with her birthday presents, I was beginning to feel normal a larger percentage of the time. Yet still, I prayed for a miracle.
Elizabeth's fourth birthday rolled around. She was developmentally between a two and four month old. As I wrote a Christmas form letter to my family, I reflected on the four years of growth for her. And for all of us.
Dear Family and Friends,
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 while I wrapped Christmas presents. As I glanced often at her smiling, contented face, I was filled with thankfulness as I happily 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 moments!
This year, I decided that Elizabeth's birthday party would have a ballet theme. We dressed her in a new dancing outfit, rolled up the rug and put on our video tape of the Nutcracker for inspiration. When Elizabeth grew too tired to stand in her therapeutic walker, Jim lifted her out and swung her high in the air, around and around. She giggled in delight at the spinning room, at the air on her face, at the pretty Christmas lights, and especially at her father's smiling face below her. Despite the odd combination of Elizabeth's outfit--a yellow tutu with pink and white foot orthotics and Barney sneakers--I smiled as I thought, "Tonight, Elizabeth is the loveliest ballerina in all the world.
Although I will always pray for a miracle, Elizabeth is indeed a blessing--just the way she is."
Merry Christmas everyone!
Lisa, Jim, Jacqueline and Elizabeth