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A fine purpose.

Years ago, when I was desperately searching for meaning and hope after hearing the devastating news about the severity of our son's handicaps, Exceptional Parent magazine became my friend. I was ready for the next issue as soon as I put down the last, and avidly read each letter and article as if it were meant just for me. I learned a lot from your wraters--parents who had been there before me.

In hopes of returning some of the encouragement and hope that I found in yourpages, I wrote this article to express the positive aspects of our experiences as parents of an exceptional child.

The entire restaurant seemed filled with a shared excitement as we waited for the long-planned moment. Then, on cue, the glowing light of 80 candles greeted us as Grandmother's cake was carried into the room. Everyone joined in -singing a rousing chorus of Happy Birthday. And then it happened--Brian began laughing. His smile was brighter than the collective glow of the candles; his giggle captivated every person in our group. We faltered in amazement--Brian was laughing!

Three and one-half years had passed since his birth and the crushing news-he had severe brain damage of unknown origin. Surely the diagnosis was a mistake! These things don't happen to people like us. Yet our own eyes could not deny that something was wrong. He didn't look at us. He didn't eat. His cry sounded... strange. Slowly, the wrenching grief known by all parents of children with disabilities fell like a blanket over our world. We mourned for our dream child who had seemingly died. We mourned the death of our drearns--for the smiles that didn't come at two months, for the sleep that still hadn't come at 12 months, for sitting in doctors' offices instead of playing in the sun. Oh, so many reasons to grieve!

My worst moments came when it was my night "on." Brian had an undiagnosed seizure disorder, and he "startied" awake nearly as soon as he drifted to sleep. As a result, we spent two years alternating nights "on duty," walking him back to sleep and napping with him on our chests.

During those horrible nights, I would cry out to God. I demanded to know why we were being tormented in spite of our prayers. I felt sorry for myself, for my husband, Jay, and for Brian. It seemed horribly unfair that Jay and I should be punished With such terrible grief. It seemed worse yet that our beautiful little son should be so horribly contorted and limited by cerebral palsy.

In a nutshell, I was angry at God. Why should parents like us, who cared so deeply, be spending so much of our creative energy taking care of a child who would never contribute to society? This was my silent horror. I had been raised with a strong belief in "giving something back" to society. Now it appeared that I would spend the rest of my days taking care of someone who would never give anything back to anybody. The guilt I felt over such disloyal thoughts about my innocent son compounded the pain.

With the birth of Brian's new sister, Katy, I nagged God even more persistently--demanding answers, healing, anything. At a very early age, Katy showed every sign of being "gifted"--reciting the ABCs before other children her age could even talk, "reading" every book she could grab with her chubby little fingers, and charming the socks off everyone she met. As I watched her and envisioned her making her way though school, I was struck by the inequities: Brian would always get far more help than Katy would. His education would always cost far more than hers. Would he ever even know or enjoy all the extra care he was getting?

My questions changed little in the routine of our daily lives. Brian "improved" (in disposition, at least) and began responding to our meticulous, if not always joyfully given, care. Fie began school and seemed happy. He was a very beautiful child and his newly found smile--especially when he heard whistles, bells, or our sing-song "Hello, Brian"-- would light up a room. As he grew, Brian continued to amaze us with his patience, loving spirit and sweet nature. Though he had been a very cranky baby, he now endured many surgeries for hip displacement, gastrostomy (feeding) tubes and tooth caps with almost no complaint. We learned to love him deeply, and took delight in his constant attempts to engage us with his smiles and giggles.

What was most remarkable was Brian's effect on other people. Beginning with his first care provider and continuing with every baby-sitter, bus driver and professional he met, he built a loyal following. As proud parents, we basked in the love people showered on him but we were always a bit puzzled. How could he have such a way with people when he couldn't talk, walk, reach out and touch them or--with his limited vision-even look at them?

Yet it was universal. Brian touched people in a way that was quite astonishing. Those who became close family friends were almost as puzzled by it as we were. They attempted to explain his impact by saying things like "He just has a special way about him" or "He's just a little angel." Without knowing what he did or how he did it, to a person they found that they were moved and changed for the better by their encounters with Brian.

On one level, he helped people gain a new perspective on their own troubles and start enjoying life. After all, if this little boy could be trapped inside a totally dysfunctional body, yet remain so sweet and happy, how could they complain about their troubles? You could almost hear them thinking, "And I thought I was having a bad day!"

On another level, people were simply impressed with his being. Brian radiated a peaceful acceptance of life. The doctors who had diagnosed his cerebral palsy when he was young told us that he would be very profoundly retarded, but few who knew him could believe that he was. He had a way of communicating his understanding and acceptance. He was a charmer without any artifice of manipulation.

Without any warning, Brian died peacefully in his sleep before his sixth birthday. We were shocked; he had been so healthy just the day before when all of us had been together at church to see his sister Katy "perform" for the first time in the toddler choir. Grandma and Grandpa had been there along with the entourage of his friends who never failed to greet and talk to him at church.

Now, once more, we mourn the death of our son. Oh, to hold him again! Oh, to have his sweet smile greet me in the morning or to hear his delightful giggle when we sing! The depth of missing him takes my breath away and wakes me with tears in the night, but strangely, this time the grief is less desolate. Brian, who radiated such a beautiful spirit, is free at last from that torturous, uncooperative body. As his sister said, he is finally able to sing and dance his heart out as a little angel.

What irony that he should die when we had become so comfortable with the reality of our "different" life and family! What irony that he should die when his dad and I had finally accepted his disabilities--to the point of remodeling the house to fit his needs and planning our finances and future with Brian in mind.

Or was it ironic? We have come to believe that Brian couldn't leave us until we had accepted his disability; until we had completed our grieving and reached a peaceful, even joyous acceptance of our life with him and his disability. We had incorporated Brian so fully into our life that we even spent a week tent-camping with him at our church retreat--no small feat with gastrostomy feedings and still-frequent vomiting! It was a beautiful experience that deepened our faith in God and strengthened our bonds as a family.

His purpose? I have no doubt that he had one--and a fine purpose it was! As testimony to that, over 300 people attended his memorial service, wrote cards and came by our home to tell us how moved they had been by his presence. Many of them were "strangers"--people from church we had not yet met. They struggled to find words to express the ways Brian had touched their lives. Their tears, and the love they had shared with him when he lived, spoke volumes about Brian's impact.

Brian taught Jay and I how to enjoy each moment, how to accept what is given and live fully. He taught our families and friends how to give unconditional love, and how to see the essence of a person's soul without the trappings of success, talent or achievements. He taught our neighbors and co-workers how to count their blessings and be thankful for what they have. He taught all of us how to experience God's love and grace even in seemingly miserable conditions.

I have a new perspective on what is means to contribute to society--thanks to a little boy who could not walk, talk, write, sing, play or draw. He contributed his being, and all of us who were blessed by knowing him are richer by far for the experience. . Carol Abbot is an educational consultant and former elementary school teacher who lives in Sacramento, California with her husband Jay and daughter Katy. Both Jay and Carol continue to serve on the board of their local support group, Parents for Special Children. Carol works part time in order to spend as much time as possible with Katy, who just entered kindergarten.
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Title Annotation:includes related poem; caring for an exceptional child
Author:Abbott, Carol
Publication:The Exceptional Parent
Date:Oct 1, 1993
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