By Sally Bittner Bonn
“So, you have a child with SMA?” she says to me, drawing the words out slowly, implying a deep I’m sorry with her tone. She is kind and well-meaning, and I don’t hold it against her. If she knew Oscar or had even met him once, she would not need to imply apologies in her speech. He is the most vibrant, happy person I know. True, I’m a proud mom and heavily biased. But I think there are few people who know Oscar who would disagree with me. But she hasn’t met Oscar.
Oscar has spinal muscular atrophy, or SMA, a neuromuscular disorder that results in extreme muscle weakness. He was diagnosed at 14 months, shattering the bubble of new parent bliss we were living in. We had noticed he wasn’t crawling, holding any weight on his legs, and he was tipping over while sitting without catching himself. It was when he stopped being able to move himself from lying down to sitting that we started getting concerned and took him to the doctor to be checked out. SMA is a rare disease, affecting about 1 in 6,000 births. The most common kind of SMA, type I, is the number one genetic killer of infants under the age of two. Oscar has type II, affording him more strength (many type I babies never have the strength to talk, hold anything heavier than a feather, or eat on their own). Oscar talks a mile a minute, from dawn until well past dusk. As long as mac-n-cheese is on the menu, he can eat like a champ. And though his hands are weak—at five years old he has never had the strength to open a marker cap by himself or lift a heavy book—he is dexterous. When handed an open maker, he can draw anything his imagination can dream up.
Oscar will never walk. He uses a power wheelchair to get around—and can drive with great precision, skill, and speed! The weakness in his chest makes him more susceptible to respiratory infection. Indeed, when he was three, he contracted RSV, which developed into pneumonia and he was hospitalized for nine days. A nasty respiratory infection could take him from us at any time. Yet, there are folks with type II SMA who are in their 50’s with advanced college degrees, families, and who are living rich, fulfilling lives.
The future is uncertain. But isn’t that always the case? A friend reminded me recently that my husband and I know this truth intimately, even though this uncertainty exists in everyone’s life. And most of the time, I am not sad about this.
My life, my scope, has expanded beyond measure in the four years since Oscar’s diagnosis with SMA. I have learned to notice good accessible design—and even more so good universal design—architecture that is meant to accommodate people with all kinds abilities. I have learned how to look at people first and disability second. I have met incredible human beings. People who have dedicated their lives to serving children with disabilities—physical therapists, social workers, occupational therapists, doctors. People who live with disability every day, whether their own disability or of someone in their family—people who have embraced differences and accepted them as anyone might accept difference in hair color, religion, food preferences.
I read, a couple years ago, in Susan Zimmerman’s book Writing to Heal the Soul that she, in coping with her daughter’s disabling condition, moved from grief to acceptance. I thought two years ago that maybe I had moved to acceptance as well, or close to it, anyhow. Then I read that she moved beyond acceptance to gratitude and the top of my head nearly blew off—wait?! I’m allowed to feel gratitude that my son has a disabling medical condition?! How freeing these words were for me. Of course, I am grateful for Oscar. For every ounce of his being. And part of his being is SMA, is disability. In such a short time, I have learned so much that I never would have learned, otherwise.
And so, yes. It has come to this: I am grateful for all that SMA has taught me, and will continue to teach me as time goes on.
About the Author
Sally Bittner Bonn is currently working on a book-length memoir about the joys and challenges of raising a son with a physical disability. Her poetry has appeared in Don’t Blame the Ugly Mug, Women. Period., and Lake Affect, among others. She works as the Director of Youth Education at Writers & Books, where she also teaches creative writing. She lives with her husband and son in Rochester, NY. Visit her family’s website and blog here: www.oscar-go.org.