How My Cerebral Palsy Became My Parenting Super Power
When I became a mother, the challenges of parenting with cerebral palsy seemed insurmountable. My son’s outlook helped me find my way.
The first time I attempted to breastfeed my son, my arms failed me. The right one refused to prop Ethan’s head at the correct angle, and when I switched him to the left arm—the one that’s stronger—I couldn’t compensate for his dangling legs, which dragged him, wriggling, away from my breast.
A nurse swept in and tucked pillows around us, then adjusted and rearranged until my boy latched on. Ethan took a big swallow and drifted to sleep. My husband sighed with relief from his perch on the windowsill.
But I felt stunned and terrified. Because that’s when it hit me: Soon we’d be home, and my husband would return to work. Which meant there’d be no one around to ensure that our baby wouldn’t starve. No one to offset all that my body couldn’t do.
I have cerebral palsy, a disability caused by damage at birth to parts of my brain that control motor function. My case is relatively mild: I limp and have limited strength and dexterity on one side. Before parenthood, my life as a writer and librarian demanded little of me physically. I managed housework inelegantly but fine. However, that morning in the maternity ward when my body let me down, I suddenly understood how real my limitations were.
I couldn’t bathe my slippery boy, so my mother took two trains to come help me twice a week. Nor could I carry him on stairs, which meant that when the one elevator in our apartment building broke, we were homebound. With poor balance and only one cooperative hand, I couldn’t pull milk from the fridge, pour cereal into a bowl, or even bring a spoon to my mouth while holding Ethan in my arms. And in my memory of our long first year together, he was always in my arms, nursing in an endless loop. I was often dizzy with hunger and felt not only inept but also unworthy. My perfect boy deserved so much more than his clumsy mother could provide.
I worried that as Ethan grew more mobile, he’d dash toward the street at a pace I couldn’t match or scurry into a crowd, never to be seen again. Ethan did learn to run before he could talk, but seemingly miraculously, he listened to me. “Don’t go too far ahead,” I’d call, and he’d stop to wait. “I may not be the most agile mom in the world,” I thought, “but I must be doing something right.”
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The biggest shift happened when he was 3 years old and began to ask why. Why couldn’t I walk as fast as he could? Why couldn’t I join him in games of catch and tag? That was when my disability, with all its hardships, proved to be a gift.
“My right side doesn’t work well because I got hurt when I was born,” I explained.
“That’s why you type with one hand, right?” he asked. “Daddy says you’re the fastest one-handed typer ever.”
“I guess it makes me better at some things, huh?”
“It also makes your walk more dance-y.”
Discussing my limitations let him learn about patience, empathy, and seeing beyond appearances when meeting someone new. I can’t say that he’s never teased anyone. Children inevitably test their ability to hurt each other. Still, kindness, which has always been at the core of our talks about disability, is at the core of who he is.
When he went to a movie theater for the first time at age 3, he screamed, “Give it back!” to the villain who held Elmo’s beloved blanket captive. He cried so hard on behalf of his furry red friend that we had to leave. In first grade, he began carrying a plastic bag of coins in case we ran into people in need.
We were once late to a classmate’s ninth birthday party, and I apologized for slowing us down. Ethan turned to me, backpack slipping from his shoulders, and distilled all those life lessons and conversations we’d shared over the years into a simple fact: “No one minds your limp, Mom, because you’re nice.”
This article originally appeared in Parents Magazine's October 2019 issue as 'My Secret Superpower.'