I took the pregnancy test as an extra precaution. I was a little bored and had the time. I was scheduled to have a medical procedure the next morning, and I knew they’d ask, “Is there any chance you might be pregnant?” So I peed and waited. I texted my friend Kelly. By the time I glanced back at the little stick, there were two bright pink lines – so vivid they were almost burgundy. I’m pregnant! I’m pregnant?
The first thing I felt was fear. Then guilt for not feeling other things. Like joy. Excitement. Blessed. But those feelings were from another planet I could only see through a telescope.
I didn’t realize how little I expected I would ever be pregnant until the pink lines said I was. My doctors had always been vague and noncommittal on that point. “We won’t know until we know,” they said. No one had ever pinpointed a specific problem that made my body incompatible with pregnancy, but my body had only ever been a medical complication. At the age of 14 months I was diagnosed with malignant cancer on my spine. The following years were a string of chemotherapy and radiation treatments. Major surgeries. A perpetually bald head. More and more falling. A good prognosis – the cancer was gone! – and the diagnosis of paralysis. The treatments that saved my life left my body permanently altered. My medical files grew fatter year after year as doctors continued to scan and scrutinize for every sign of breakdown in my limbs and organs.
By the time I was 34, lying on my back in the sonogram room, staring at the grainy image of what looked like a tiny penguin floating on his back, I’d already had a lifetime of medical experiences. Nothing about the room or the equipment or the dynamics between nurse and patient were foreign. What was strange was hearing the word “normal,” again and again and again. “Everything looks normal!” the sonogram technician said one more time. “You’re eleven weeks! Congratulations, Mom.” I felt strange under the banner of the word. Mom. Was I? The word felt like trying on a coat that was too small.
When I was very little, I was sure I wanted to be a mom. My favorite toys were baby dolls, and while I sat in my hospital bed receiving chemo treatments, I’d hoist up my jammies and hold my doll up to my chest to nurse her. As I grew up and started to piece together where I fit (or didn’t fit) into the world as a disabled girl and woman, I found it harder to picture what motherhood would look like from a wheelchair. As we entered early adulthood, I saw the assumption of motherhood thrown on my peers – of course they would be and wanted to be mothers! For good or bad, the same was not assumed of me. No one made roundabout jokes to me or my partner Micah about having babies. No one asked prying questions about our plans. It was as if a baby of ours remained just outside of the collective imagination.
And it wasn’t just others’ imaginations. I didn’t know – had never seen – a single person who parented from a wheelchair. In a very practical sense, I didn’t have a picture of how to lift my baby out of a crib or put him in the car. But beyond the logistics, the depictions of motherhood I saw around me seemed at odds with what I knew of disability. Not because I believed disabled people wouldn’t make good parents, but because what I saw of mothers – in shows and in ads and on Mother’s Day cards – what I heard when people talked about mothers, added up to a larger than life caricature: a mother was a person without limits. She could do and did everything for everyone, even when there didn’t seem to be enough hours in the day to do it. She showed up to everything (with treats), could comfort when no one else could, knew how to run the ship with her eyes closed and kept the world spinning with one hand while she fried an egg with the other. A larger than life, superhero human – MOTHER.
This image did not resonate with me. After three decades of living in my body, I’d already built an intimate and nuanced relationship with limitation, and I was comfortable with mine. Some of those limitations were wrapped up in my paralyzed legs, some were located in the inaccessible world around me, and none of them were fundamentally incompatible with caring for a child. And yet the loudest messaging I heard around this ambiguous role of Mother was that she knew no bounds. Surely no one could Do It All, but she did. Over and over and over again.
This impossible image of Mother hasn’t left me. She towered above me even as my tiny penguin lying on his back turned into a real baby – born with a fresh wriggly body and ancient eyes – we named Otto. She haunted me when Otto woke up screaming in the night and could only be soothed by the bouncing and pacing of his dad. She is still lurking behind my shoulder when I am with Otto in public and strangers seem alarmed or perplexed or amazed that I’m his mom. She’s with me as Otto is learning to toddle-run and I have to renegotiate the ways we move through space together. Her image is with me, because it was given to me over and over again from the time I was a baby myself up to today. Her image is ubiquitous, but that doesn’t make her real or good or useful.
I’ve found a lifetime of disability to be the perfect training ground for motherhood.
In fact, I've found the opposite to be true. I’ve found almost every real life mother I know – disabled or not – lives in an ever-changing web of limitation. Of course! Even more surprising to me, I’ve found a lifetime of disability to be the perfect training ground for motherhood – the limitations of paralysis and an inaccessible world have given me sturdy muscles in flexibility, adaptability, and imagination – the very stuff of mothering.
There are so many more ways to be a mom, but our capacity to imagine Mother is narrow. What a punishing setup for those of us who are mothers, have mothers, love mothers, would like to become mothers. Let’s crack it open. It’s not enough to marvel at moms for all they do without creating space for them to embody more complicated roles with needs of their own. I want to see it – moms sitting in their limitations as they care for their babes. Moms who feel more than one thing about being a mom. Moms given support from their jobs and partners to be moms and also other things. I want the word mom to mean both less and more.