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The merry-go-round.

On the day of my son Jacob's birth, I looked upon his tiny body with fear and apprehension. A day that should have been filled with joy had suddenly become dark and foreboding. So many questions unanswered, too many uncertainties. Would he survive the complications of his disabilities? How would our family be affected? We had already suffered the loss of our first two children -- could we bear the loss of another? Would we be able to cope with the stress of rearing a child with disabilities?

I was reminded of my first merry-go-round -- it was the schoolyard favorite. I recall the good, smooth feeling of the metal, polished by the use of many small hands. The worn wooden seat with faded orange paint. The circular path where everyone ran and pushed before jumping aboard. The squeals and shrieks of merriment as we went faster and faster.

I also remember the day it all changed, when I was swept from my feet as I attempted to push harder and faster. I recall the despair as I struggled to gain a place on the once friendly seat. No matter how hard I tried, I could not climb back on, From that day forward, the merry-go-round would no longer stand for just fun and joy. Its once benign image was changed forever; it now embodied fear and caution.

After Jacob's birth, life had begun to spin faster than my legs could run. My feet were leaving the ground; my only hope was to hold on with all my strength. Would I make it? Would my family survive? Could I survive? Or would I lose my grip and be flung out into space to await the inevitable crash with the hard, rocky ground? Perhaps I would be flung so hard, so high and so viciously that I could only wonder when, if ever, I would hit the ground.

Between the moment the doctor told me that Jacob had spina bifida and the moment the nurse asked me if I needed to sit down, I felt as though I had travelled at the speed of light to a place I had never been. I knew upon my return that my world would never be the same, Jacob was immediately transferred to Le Bonheur Children's Hospital in Memphis, Tenn., 140 miles from home. There he would undergo the first of six surgeries before the age of two.

It occurs to me as I write this what it must have been like for my wife, Anita. Articulate and attractive, she is a people-oriented person who was very popular among her students at the University of North Alabama where she was a psychiatric nursing instructor. After experiencing the grievous loss of our first two babies, Anita formed a support group for families that had experienced the death of an infant. She knew as a mother and a professional that society often discounts the loss of an infant, especially if that loss occurs before or near birth. It was her concern and sensitivity that nurtured and contributed to the healing process of so many.

It didn't seem fair that we might be faced with the loss of another child, yet here she was beside me less than 24 hours after giving birth, making a grim trip to a strange city, facing the unknown. After the normal birth of our daughter Sarah, I once joked with her that Indian women would often give birth on the side of the trail and catch up with the tribe before nightfall. Little did I know that she would accomplish a comparable feat. She never complained and would not stay behind. She insisted on being with her baby. I believe that as we made that journey to Memphis we were both fixated on what lay before us.

Hope and Survival

Somehow we all survived those difficult days, although we often wonder how. It was difficult to watch Jacob struggle against the odds. The doctors were cautious and guarded with their prognosis. They counseled a "wait-and-see" approach. They really couldn't answer our questions or calm our fears. Even though we knew that, we asked anyway.

Following Jacob's shunt operation (to prevent fluid build-up on the brain that causes an enlarged head), he developed bilateral vocal cord paralysis that began to close off his windpipe. His breathing became labored and raspy. We were advised that he would have to be trached, a procedure where a tube is placed in the trachea to facilitate breathing.

We were back on the road to Memphis again. I will never forget that trip for the rest of my life. We felt utterly helpless as we drove with anxious faces and raw nerves -- it seemed as though Jacob's breathing had become even more labored, if that was possible. It just didn't seem fair for him and us to have to suffer so much.

As we awaited Jacob's recovery from surgery, we tried to talk our way through our fears. We both knew that Jacob should be developing a smile and signs of recognition if he was developing on a normal curve. So far, we had not seen those signs. We knew he had been under terrific strain since birth and hoped he was developmentally delayed for this reason -- he was, after all, only eight weeks old. We feared the worst and hoped for the best.

It was with a great deal of apprehension that we approached Jacob's cradle in the infant critical care unit. He wasn't crying. I realized then how accustomed we had become to his loud, raspy breathing. Concerned, we quickly stepped over to his cradle to make sure he was okay. When he turned his head and saw us, a big smile lit up his face. It was like looking out a window on a cloudy, dismal day when suddenly a ray of light bursts through and brightens the day.

As I think back to that day, I am overcome with the emotion that his smile produced in me. It was as close to magic as I will ever be. I knew at that instant that it really didn't matter that Jacob would be somewhat different or have disabilities. What mattered was that he would need to be loved and nurtured to the best of my ability. The fears remained but they had been greatly diminished by the radiance of the smile on a little child's face.

Facing the Future

We have weathered the storm of our earlier fears and are braced to face those of the future. Jacob is six years old now and quite the rough-and-tumble little boy. Like other six-year-olds and his father before him, he too loves the playground. One of his favorites is the merry-go-round. He found, like his father, that if you lose your balance, the ride on the merry-go-round will no longer be as it was before. I was there when he took his fall. I rushed to his side as he fell in a dusty heap. He was frightened, bruised, scratched and crying, but otherwise unhurt. He announced with tears coursing down his dirty cheeks that he would never ride that mean old thing again. As we examined his bruises and scratches and he was becoming increasingly proud of the one that was bleeding, he looked up when he heard the other children squealing and laughing as they rode round and round. With the tears on his dirty cheeks not yet dry, he announced that he would ride again because, "I'm not scared now, Dad, cuz it's more funner than it hurts."

Life is like that, you know. We learn it from the very beginning, but somewhere along the way to adulthood, we develop fears of another kind. We fear not only for ourselves but for our children and their future. We fear for what they will experience or what we are afraid they won't experience. We fear for the quality of their lives and that society will not accept them as they are. Eventually, we may become immobilized by the fear of fear itself.

We must accept the challenges of life and conquer our fears lest we fall by the wayside and watch the merry-go-round of life pass us by. For our own sake and the sake of our children, we must conquer our fears so that we will be able to nurture and encourage them to develop to the greatest of their abilities. So remember as you ride the merry-go-round of life and the ride gets bumpy -- if you are thrown off, pick yourself up and get back on "cuz it's more runner than it hurts."

Wayne Rhodes lives in Jackson's Gap, Ala., with his wife, Anita, and children, Josh, 16, Sarah, 10, and Jacob, 8, who has spina bifida. Wayne is the assistant administrator at Camp ASCCA (Alabama's Special Camp for Children and Adults), a year-round camp for people with disabilities in Jackson's Gap, where his wife is medical director. Rhodes has a master's in guidance and counseling and a bachelor's in sociology, both from the University off North Alabama.
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Title Annotation:caring for a child with spina bifida after the loss of two other children
Author:Rhodes, Wayne
Publication:The Exceptional Parent
Date:Jun 1, 1993
Previous Article:Papa's sweetheart.
Next Article:1992 Summer Program Awards.

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