From Chicken Soup for the Mother's Soul

A Perfect Son

When I was twenty-six, I gave birth to a beautiful son: George had black hair, green eyes and the longest eyelashes I’d ever seen. He talked when he was nine months old, walked at ten months and skied at two. He was my joy, and I loved him with more love than I knew I had.

As all mothers do, I dreamed of what George would grow up to be. An engineer, probably. A skier, definitely. He was so smart that he was in a school for gifted kids. One day, after telling one of those “mother stories” to a friend, she said, “It’s a good thing George is perfect. Would you love him this much if he weren’t?” After giving her question a thought, I forgot it— until the next year.

One day when George was eight, he woke up with his foot pointed straight up; he could only walk on his heel. We began the doctors circuit while the crookedness moved up one leg and down the other. After numerous diagnoses, we learned that he had generalized torsion dystonia, a condition similar to cerebral palsy. He’d live, but he’d lose his ability to walk, if not lose control of most of his muscles through painful, involuntary cramping.

I was filled with hatred: at God, because he obviously made a mistake in giving me a handicapped child; at myself for somehow genetically causing my son to be sick; at George for being so twisted.

I was embarrassed when we walked down the street together: People stared and either quickly looked away or flashed me a look of pity. At times I couldn’t look at him because he looked so distorted and ugly. I screamed at him to walk straight so I wouldn’t see how disabled he’d become. He’d smile and say, “I’m trying, Mom.”

He was no longer beautiful to me: I focused instead on his twisted legs, arms, back and fingers. I didn’t want to love him anymore because I was afraid I would lose him. No longer dreaming of what he would grow up to be, I worried that he wouldn’t live long enough to grow up. A constant thought was that I wouldn’t be able to dance with him at his wedding.

My heart broke one day as I watched George try to get his twisted feet to stay on his beloved skateboard. I took it away and put it into the closet, “for later,” I told him.

Each night as we sat doing our bedtime reading George would ask the same question. “If we pray real hard, do you think I’ll be able to walk when I wake up?”

“No, but I think we should pray anyway.”

“But Mommy, the kids are calling me crippled creep and they’re not playing with me anymore. I don’t have anymore friends. I hate them. I hate me.”

We tried every medication, diet and doctor possible. I got onto the Dystonia Medical Research board and founded The Dystonia Society in England. My life became directed toward helping find a cure for this disease. I wanted my son to be normal again.

Slowly, George’s comfort with his disease taught me forgiveness, but my fear made me nearly non-functional. Then, a friend dragged me to a group meditation. After practicing daily, I began to recognize a feeling of peace. Until then, I had only given myself when life was easy; now, love seemed bigger than anything I could understand. I realized that George was my teacher; love was the lesson.

I knew then that George was and always had been George—a bit crooked, a bit different than the other kids —but my son just the same. I stopped being embarrassed that his body wasn’t straight. I accepted that he wouldn’t grow up and have the same prospects as other people. But he would grow up with more patience, more ambition and more courage than anyone I had ever known.

Eventually, medication stabilized George and made it possible for his hands and mouth to function normally. His legs were beyond his control and necessitated crutches. But he never stopped skiing. Using his poles as crutches, he sped down mountains with an unrelenting push that earned him a place on the U.S. Disabled Olympic Ski Team. He couldn’t walk, but he sure could ski.

When George was eighteen, he was able to straighten one of his legs. He threw away one crutch. The next month, he threw away the other. His gait was gimpy, but he walked unaided. He came to visit me soon after. I stood in the doorway and watched as a tall, handsome man walked over to me.

“Hi Mom,” he grinned, “Wanna go out dancing?”

At a recent high-school reunion I listened while everyone celebrated their children’s successes.

“My son is a musician.”

“My daughter’s a doctor.”

When it was at last my turn, I was the proudest parent:

“My son walks. And he’s perfect.”

Sharon Drew Morgen

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