Sky's the Limit

A doctor predicted our son, who has spina bifida, would never walk. But Mark has shown us what perseverance—and a keen passion—can do.

One mom describes her experience adopting a child with spina bifida.

A few evenings ago, I stood with a small group of moms in the lobby of my children’s dance school, and peered through the window at my son’s beginner ballet class. I watched Mark hobble and hop and try to balance on one foot. I watched him plié and sweep his arms up and over his head, his tongue sticking out, Charlie Brown-like, grimacing in concentration. Even a casual observer could have seen that he was having a harder time learning these basic steps than any other child in the class. Some of the moms may have thought he was a bit clumsy, or just not terribly agile. I thought he was a hero.

Anyone needs courage to try something new, but Mark’s taking this dance class was sheer bravery. Born with spina bifida, he lacks nerve function in most of his lower leg area. At nine years old, his gait is still awkward, and though he can walk and run without leg braces now, he often falls. He gets frustrated at times, but he has never let spina bifida stop him from trying anything that interests him. He shoots for the moon, and why shouldn’t he? He has proven that he was a survivor from the time he was born, and abandoned, in a hospital in southern Russia.

An Initial Stumble

After my husband and I signed on to adopt a second time, our agency sent us a videotape of a tiny two-month-old boy wearing a hospital gown. When we brought the video to a doctor who specializes in international adoption medicine, her assessment was glum. The medical records didn’t name his condition, but she had no trouble identifying spina bifida. She laid out the possibility starkly: he might never walk. He could move his legs, as we saw in the video, but he could lose this function as he grew.

And there was more. The doctor pointed out that, although many orphanage babies are underweight, this little guy appeared severely malnourished, and his records indicated that he was actually losing weight. She felt he was not responsive enough when spoken to, or when a toy was waved in front of his face. She wondered why. Was he more severely neglected than other babies there, because of his disability?

It was a lot to swallow. We reeled backward at first, but, within days, we regained our footing. We felt sure that we had been led to this child for a reason. We set out to learn all we could about spina bifida, while we hurried to update our homestudy and file the reams of paperwork. The updated report we received during the wait was not encouraging: at 10 months, he weighed only 11 pounds. We prayed that he would be all right until we could get to him.

The next month, we were finally allowed to travel. In addition to being tiny, Mark was a serious little boy. It took some effort to make him smile, but, when he did, a beautiful, knowing grin spread across his face. He lit up when his older sister, Gracie, was in sight, though, clearly comforted by her presence. She soon learned to dance, run, and tumble for his entertainment. As Mark was learning to scoot forward and sit unassisted, he delighted in watching his sister’s movements, as if she were running for both of them.

Remarkable Resilience

A diagnosis of food allergies solved the puzzle of Mark’s weight loss. With a proper diet, he nearly doubled his weight within three months, and looked nothing like the frail baby we’d first met.

Mark began an intensive course of speech and physical therapy, which he received through our state’s early intervention program. Daily stretches, combined with low-level braces, helped him walk and run. He proved to be an avid, if not very steady, climber.

From the beginning, we recognized his determination. For six months after coming home, he practiced pulling himself up to a standing position at the coffee table. And for the next six months, he tried stepping away from the table, falling every time. But finally, a few days before Christmas, he prevailed. Mark stood and took two very shaky steps before collapsing, triumphant, onto the carpet.

My son’s determination came through in other areas, as well. At age five, he took an interest in karate and began to ask for lessons. I was hesitant. Mark was still unsteady on his feet, and karate required balance and strength. Would I be setting him up for disappointment? He tended to be his own worst critic, getting frustrated when he was unable to do things as quickly or easily as others. How would he handle not being on a physical par with the other children?

At our next appointment with a spina bifida specialist, I solicited the doctor’s advice. He said that, with the exception of football (which could truly put Mark’s spine in jeopardy), we should let him try anything that we would let him try if he didn’t have spina bifida. That advice seemed right to me. I couldn’t bring myself to tell my son not to aim for the sky. So, with a hundred prayers sent up that he would find more happiness than frustration, I enrolled him in karate school.

My prayers were answered in the form of a wonderful karate instructor, who took Mark’s special needs in stride. He taught him to focus, to persist, to rebound after setbacks. He knew how to push just enough, and, though he came to care a great deal about our son, he never coddled him or gave him special treatment. Mark was thrilled to be doing karate, while his sister kept busy with dance in a nearby studio.

After about 18 months of lessons, Mark earned his orange belt. I blinked back tears as I snapped pictures of him kneeling before his karate instructor in the traditional ceremony.

Gotta Dance

I was proud of Mark for trying, and sticking with, something so physically demanding. It was not important to me that my son have a sport, but it meant the world to him.

After several years of applauding his sister at dance recitals and competitions, Mark once again proved that he was not content simply to be a spectator. He wanted to take tap lessons. Again, I hesitated. Tap required speed, balance, and seemed dependent on a sensation that he specifically lacked: feeling at the bottom of the foot. But the words “let him try” returned to me, and, after meeting with the head of our daughter’s dance studio, we all agreed that Mark should give it a go.

Mark began tap lessons in the fall of 2006, and was hailed by a cheering section of family and friends at his first recital, the following spring. By then, he had expressed his next ambition: to be a member of the school’s performing tap team. Impressed by his perseverance and focus, his dance teachers agreed that he could join the next year–after he fulfilled the ballet requirement. How would he do? History, and my son, has taught me to expect the best.

Watching Mark struggle and rebound countless times in his dance class that afternoon, I felt proud beyond words. While others saw a group of students of various ages and abilities going through the repetitions of beginner ballet, I saw a frail, little boy in a distant orphanage, eyes searching the world for reassurance, and I heard the words of the doctor who had cautioned us against rushing into an adoption. She couldn’t have known that, one day, beyond anyone’s expectations but his own, that little boy would refuse to walk through life. He would insist on dancing.


Copyright © 1999-2024 Adoptive Families Magazine®. All rights reserved. For personal use only. Reproduction in whole or in part without permission is prohibited.

More articles like this