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Learning to see the bright side.

In April 1962 we moved to a new home. Because of school calendar differences, my sisters and I suffered through the pure torture of two extra weeks of classes in our new district. To a 9-yearold child, it was a life sentence. When the first day of our delayed summer vacation arrived, we took to the fields near our home like wild horses. Almost immediately, I was stung by a bee on my right hand. We learned, as my hand swelled to three times its normal size, that I had an allergy. I sat inside for the next four days of June with my now-swollen arm in a sling, miserable from the additional imprisonment fate had handed me.

My father came home after the first day's confinement and talked with me as I gazed out the window at my frolicking friends. His profound words were, "Look at it this way. You won't have to practice the piano for at least two weeks."

In that summer of 1962, my father gave me his greatest gift. It was the first of many times he would remind me of a skill he would label "looking on the bright side," "finding the silver lining in our clouds" and "letting a smile be my umbrella on a rainy day." In exchange I would give him a roll of the eyes and an "Oh, Dad!" stretched out over a whiny minute.

I didn't know I had my father's gift until our second child, Claire, was born. Claire has what has been generically labeled -- in part from exasperation and in part from scientific limits -- genetic metabolic disease. The translation? Claire cannot walk, talk, roll or hold up her head. She also has a difficult-to-control seizure disorder.

From friends who learn of Claire or strangers who inquire, the most common response is "Oh, how sad!" or "Such a tragedy!" I don't see Claire in the same way as these folks who missed out on my father's lessons about the bright side of life.

Unexpected Bonuses

I confess that during Claire's first year I went through a time of adjustment, self-doubt and the "Why me?" syndrome. But I have drawn from my father's wisdom and discovered that the joys of raising a child with disabilities can outweigh the challenges. In fact, raising a child with disabilities offers some of life's greatest moments and sweetest rewards. I begin with the obvious -- we get the world's best parking spaces. They are extra wide, thus helping us avoid the "doording elves" who occupy all parking lots. Claire brings us valet-quality parking without the requisite tip.

Then there are the airplane trips. We will always pre-board, qualifying under that airline lingo of "passengers needing extra assistance in boarding." In fact, we are always first -- even the passengers with small children allow us to go first. The passengers who need assistance assist us. I feel like royalty when we travel with Claire.

Then there's that door-to-door school bus service. No waiting in the rain. No scrambling to find a seat. No worries for me about the walk between the bus stop and home. It's as close to a limo as we'll come. Royalty again.

We sit in shade and comfort waiting our turn at Disneyland while other families stand in line and struggle in the hot sun. At school, Claire has an individual study plan. It's like a private education without the tuition.

And then there's Claire. She's the only one of my three children who has never argued about what she's wearing. She always looks picture-perfect. There's no back talk, no whining and the only food she's ever turned down is crumbled bacon -- a good healthy choice. Sometimes I find myself saying to my other children, "Why can't you be more like Claire?"

Perspective and Priorities

The best part of Claire is that she has brought a perspective and a sense of priorities to me and our family. Claire has taught me to cope graciously with life's challenges. The perspective she has given me allows me to see others' crises as only temporary setbacks. A mother in our neighborhood spent two sleepless nights and required sedation because her son had earned a "D" on his algebra exam. She is a perfectionist with great plans for all her children and those plans do not include "Ds" in algebra. When I heard of her trials, I looked at our Claire and thought to myself, "A 'D' in algebra? I can fix that. Next ..." A tutor, some extra problems for homework, life moves on. Who wouldn't take a "D" in algebra over life-threatening pneumonia?

I heard of yet another mother who hospitalized her child who had chicken pox so that special precautions could be taken to ensure that there would be no scars from the chicken pox. When l heard of her efforts, Claire's challenges came to mind and I thought, "A chicken pox scar - a little bit of character in a face, a little mark that says 'I was an active child."' I often listen as mothers speak of a sleepless night because of their children's ear infections. And I think to myself, "One night? I can name the few nights we slept as opposed to all the sleepless ones."

Claire has also taught us to look to the inside of people and ignore the physical issues. I was at a luncheon recently where I overheard a woman saying that she was about to become a great-grandmother for the first time. Someone asked if she knew whether it was a boy or a girl. She responded, "No, and we don't care - just so long as it has 10 fingers and toes." Before Claire, I probably said the same thing. After Claire, I would never issue a physical qualification. I would only say, "No, and I don't care, just so long as they can stay awhile ."

Claire has given my other two children a unique sensitivity about others. They befriend those who are ridiculed by others for whatever reason. To them, it is unthinkable to make fun of another's appearance. For me, who did not have a sister like Claire, it was a childhood pastime.

Claire has also given us career and financial priorities. We plan for the possibility that we might not be here and Claire will. We save for those who will care for her and need the financial support she requires. Our focus is no longer on what we achieve but what we can do to make life better for Claire and our other children. Decisions are made based on family needs - not on opportunities or compensation or recognition. Relationships have become our focus because we have had to learn to depend on others for help and support. We need others for advice, information and a pat on the back.

I see the personal growth Claire has brought me. She has given me the lessons life doesn't offer everyone. During a recent rain storm, our roof was damaged, resulting in a leak in our ceiling. The ceiling was also damaged and needed to be replaced. I spoke calmly with the insurance adjuster and when we were finished with all of our questions and paperwork she said,

"I just have to tell you that you are the nicest, calmest person I've ever dealt with on a claim." I was very proud. My reply came easily, "Hey, we can fix a roof."

Actually, my reply came from Claire. I have learned to fix the things I can fix and move on. For those things I cannot fix from swollen, bee-stung arms to metabolic disease, I've learned to see the bright side. I cannot fix Claire, but I can see the bright side -- that bright side is Claire. EP

Attorney Marianne M. Jennings is a professor of legal and ethical studies at Arizona State University's College of Business. She is also a columnist for the Arizona Republic. Jennings lives in Mesa, Ariz., with her husband, Terry, and three children, Sarah, 10, Claire, 7, and Sam, 2. She received both her undergraduate and law degrees from Brigham Young University. Her article, The New Shoes, was published in the July/August 1992 issue of Exceptional Parent.
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Copyright 1993 Gale, Cengage Learning. All rights reserved.

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Title Annotation:how the joys of raising a child with disabilities can outweigh the challenges
Author:Jennings, Marianne M.
Publication:The Exceptional Parent
Date:Jul 1, 1993
Words:1368
Previous Article:The best is yet to come.
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