real life

I thought my disability made me a failure as a mum

My son didn’t seem to like me all that much in the first weeks of his life and I couldn’t say I blamed him. I may have managed not to drop him, or leave him on a grocery shelf as had happened in my dreams, but I nearly sat on him moments after laying him on my bed. And somehow I closed a snap on his little cotton sleeper with his skin pinched in between the halves.

I also cried constantly, but this was one thing we had in common.

“Everyone goes though that,” my friends who were parents assured me. “Everyone finds it hard at first.”

But not all my graceless moments as a new mum were universal. I have cerebral palsy, a physical disability that results from an injury, usually at birth, to the part of the brain that controls motor function. My case is actually very mild. I walk with a limp and have tight muscles and limited dexterity on my right side. It’s often gone unnoticed, even, until the birth of my son, by me.

For as long as I could remember I’d wanted to be a mother and felt sure I’d be a natural at it. I worked as a children’s librarian and whenever a group of five and six year olds came in for story time, they raced for the spots on either side of me so they could listen with their knees touching mine.

During my pregnancy I read through piles of parenting books. I discovered there are two distinct camps. The Ferber faction believes that if babies are left to cry for allotted amounts of time they learn to soothe themselves, while the Sears faction believes that if babies are attended to quickly and held much of the time they grow up secure, having experienced the world as a loving, responsive place. Without having to think about it, I knew I would be a Sears mum and practice “attachment parenting.” I’m here for you was the first and most essential lesson I wished to teach my son.

I also pored over books on prenatal nutrition, some of which made me horribly anxious. When I read in a book on herbs that oregano could cause a miscarriage, I flew into a panic.

“We had Italian last night,” I trailed my husband through our apartment to say. “We have it all the time.”

“Plenty of pregnant women have eaten spaghetti without hurting their babies,” he pointed out, adding wistfully, “You know, you used to be so easygoing.”

He was right, I knew, but I couldn’t help the fear that rose inside me like the steam heat that banged through our pipes. I was already so in love with our baby, it felt crucial that I do everything exactly right.

As for my cerebral palsy, I can think of two times it crossed my mind while I was pregnant. Once when my midwife asked if I wanted to test for spina bifida or Down’s syndrome—I declined, insulted by the implication that a life with a disability might not be worth living—and again in my cumbersome eighth month when I joked to a friend that I was already used to moving awkwardly.

What didn’t occur to me until after my son’s birth was that motherhood required real agility. The first time I tried to nurse him he was unable to reach my breast because of the sloppy cradle my uneven arms made for him.

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After a harrowing day of trial and error, I was able to breastfeed, first with the help of nurses who propped pillows under my son and later, on my own, by using a tire-shaped nursing pillow. Though that fundamental issue was solved I soon discovered other problems. I wasn’t able to bathe the baby without help, or swaddle him, or eat anything more challenging than a breadstick while nursing. And, as it was the only activity that kept my son from screaming like he was being dismembered, I nursed constantly.

Hour after hour I sat in our glider rocker and, for all I was able to do for myself with a baby in my arms, I may as well have been in traction.

During his brief paternity leave, my husband did his best to help me. He brought me glasses of water with bendy straws to make drinking more manageable. He gave me his protein bars since I could eat them with one hand. But after a few days, he sighed loudly at each request. Clearly he felt my “convalescence” should be over. But my disability, of course, was permanent. It always had been, but since I’d rarely faced real physical demands in my childless life, it had never felt so prominent.

In those not so long ago days, I thought of cerebral palsy as a cosmetic issue—I had a limp which I hoped wasn’t too noticeable. Now, glued to my seat, I felt humiliated and ashamed of all I couldn’t do and of how ignorant I’d been about my own body.

“Sorry to ask again,” I called out only when my thirst became unbearable. “But if you could just refill this glass…”

Visibly relieved, my husband returned to work after his allocated ten days. Before he left that first morning he dug the camel pack he used for mountain biking out of the closet and filled it with water, then taped it to the back of the glider rocker, positioned so that I could take sips from the tube just by turning my head.

With that bag in place like a catheter, I sat in the empty apartment and nursed until I was dizzy with hunger. That’s when I realized just how hard it would be to do something about it. I could carry a newborn into the kitchen if I did so with great care. I could probably even prop him on one shoulder long enough to open the refrigerator. But then what? With my one reliable hand cupping his head, I couldn’t pour cereal or milk into a bowl. Nor could I use a spoon.

We had a bouncy seat for him and I made a few attempts to place him in it, but he howled with rage before I’d even strapped him in. So, though feeding myself was impossible with a baby in my arms, in my arms he stayed, partly because of my almost religious belief in the tenets of attachment parenting, but mostly because I hated to upset my boy.

Now that we were on our own during the day, I quickly discovered other feats that were beyond me. Stairs had never been my forte, but as long as I had a banister I did all right. But in fact my balance was precarious enough that, even if I held the baby in a carrier to free my hands, I couldn’t be sure I wouldn’t trip and fall. This meant we weren’t able to climb aboard a bus, or visit our inaccessible town library, or leave our fourth floor apartment the many times the elevator broke down.

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Though these new limitations made my life considerably smaller, motherhood deepened it. Every day, I gazed into my son’s wide blue eyes and fell more in love with him.

Yet the look he gave back was stern and, it seemed to me, judgmental. I imagined he saw me the way I’d begun to see myself, as klutzy and inept.

I rocked him and nursed, talked and sang to him. Really? his cool stare seemed to say. This is the best you have to offer?

Meanwhile, my husband worked long hours and often went out with his coworkers afterwards to decompress. I had an open invitation to join them for drinks or late dinners, but of course I was otherwise occupied. Caring for my son took all my time and courting his affections took all my attention. He continued to respond to my devotion with an austere expression which just made me all the more desperate to please him.

When our boy was seven weeks old, we went on our first family outing to my husband’s aunt’s house in the suburbs. As soon as we arrived relatives whisked the baby from my arms and vied for turns to hold him. Though I was free to move about, to gorge on the amazing array of appetizers that crowded all the surfaces in the room, I stayed on the couch like someone with Stockholm syndrome, eyes on my captor in case he needed me.

It wasn’t until the end of the evening that my son let out his usual glass-breaking wail. My husband’s aunt, who was holding him at the time, tried cooing and swaying and rubbing his back. He just cried harder.

“I give up,” she finally said and passed him to me.

I assumed he wanted to nurse, but the moment he felt me take him he grew quiet.

“He knows who he wants,” my aunt-in-law said, and I realized it was true. He missed familiar me.

As I felt my son settle contentedly in my arms that brisk autumn evening, I also felt a calm begin to spread inside me. I realized that, though I seemed more disabled now than before I became a mother, that didn’t mean I actually was more disabled. Rather, I’d stretched myself, and in doing so, grazed the edges of my capabilities.

“You’re teaching me who I am,” I whispered into my son’s tiny ear while around us our family all spoke at once, saying their goodbyes.

Not long after, my son smiled at me, and when he learned to reach out his arms it was to reach for me. As things grew easier between us, I went easier on myself and worked to meet my own needs while taking care of his. I was still clumsy with him, but he didn’t seem to mind. I came to see that my touch, no matter how inelegant, was home to him, just as my imperfect body had always been home to me.

Ona Gritz is a poet, children’s author, and columnist for literarymama.com. Her essays have appeared in More Magazine, The Utne Reader, New York Family Magazine and elsewhere. She is currently at work on a memoir.


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