My MS Forced Me To Model Slowness & Care for My Kids

I stood at the sink dumping cold spaghetti down the drain when I felt my legs go, again. We’d had an abnormally frigid week in Seattle, and our home’s heat and gas fireplace were both out. Temperature swings are the biggest trigger for my multiple sclerosis symptoms, and I felt the familiar tingle in my legs and my face, a feeling like electricity on the inside of my body. My 10-year-old son paused before heading to bed, asking the question I love more than anything: “How can I help?”

“Can you draw me a bath?” I replied, turning carefully, but not so slowly that he’d notice, from the sink.

That night, my legs and spinal column submerged in the water, I thought that maybe it was time to tell him and my 8-year-old daughter about my diagnosis. I didn’t tell them about my MS when they were young, knowing they wouldn’t understand, and then, of course, came the years of Covid, where my condition heightened my fear while simultaneously fading into the background of stress and school closures. I hadn’t meant to keep it from them this long, and in some ways it felt like I had simply forgotten, like how I regularly forget Spirit Day at my kids’ school or where I put the passports.

And now here we are, 20 years after being diagnosed, and I have a 10- and an 8-year-old. I could easily and appropriately share my condition with them, but I haven’t. Why?

I had a mom who was all go, who didn’t sit down, who went to graduate school full-time with four small kids. I have fully internalized the narrative of mothering as productivity, as effort without limits.

I was diagnosed with multiple sclerosis after months of difficulty walking between college classes on my campus’ snowy grounds. I wasn’t overly worried at the time (I was 20 and my primary concerns were boys and poetry assignments), but my mother made me a neurology appointment, and I was shocked when, after poking my legs a few times with a safety pin, the doctor said he was taking me across the street to the hospital to admit me. Later I realized he canceled his afternoon appointments to walk me there, because he was worried my legs would not make it.

I spent the years after my diagnosis terrified about when and how the disease would progress for me, googling the rates of decline again and again and guessing at when I might lose my vision. The prognosis for people diagnosed with multiple sclerosis is impossibly varied. There are multiple types of the disease with different expectancies and outcomes, but the rate of decline is the primary variable. I would get sicker at some point; that was all I confidently knew. On our third date, I told my future husband I wanted to have kids, but that we should budget for extra help as symptoms almost always increase postpartum. I worried in the years before having my children how my disease would affect them, how it would limit my parenting, and potentially my life expectancy. I worried and worried.

But I have been healthier than I expected; my symptoms flare (called a relapse) but then ease, an unsteady rhythm that sometimes reminds me of the contractions of childbirth, of dipping in and out of my body’s discomfort. Surprisingly I didn’t have any extra trouble postpartum. And while I thought my kids might only know me in a wheelchair, I coach their soccer teams and do cartwheels with my daughter. I have not been hospitalized since before they were born. To say this is lucky is an understatement.

The symptoms I do have I manage with diet, exercise, rest, and yes, regular baths. Walking can be difficult sometimes. Fevers lay me out, and my kids know that when I get sick, I am in bed longer than Dad is. So while my children do not know my diagnosis, they see up close the attention it requires of me: They see me nap, see me go to bed at 9 p.m., hear me talk about therapy, about doctor’s appointments.

And this is what I wish for my kids: a sensitivity to their physical selves, and the confidence to meet the needs of their body, to rest.

This is not the model of motherhood I grew up with, or the one I see celebrated around me. I had a mom who was all go, who didn’t sit down, who went to graduate school full-time with four small kids. I have fully internalized the narrative of mothering as productivity, as effort without limits. But I’m beginning to see that multiple sclerosis has forced me into a different version of parenting, one where my kids know I care for my body, and that bodies are vulnerable and in need of care.

Perhaps I have not told my children my diagnosis not because I am afraid they can’t handle it, but because I want them to believe everybody, and every body, deserves the care that my body demands? I want them to know that rest, exercise, checking in with your own needs is the human condition, not something that happens only in a worst-case scenario.

And while I’m glad for them to know that, I do not mean to imply a gratitude for my diagnosis. I’d happily give back the years of fear, the pain of spinal taps, and all the dark thoughts I’ve had in MRI tubes. I still fear what is to come, the days ahead where there will not be enough rest to get my legs to work. But I am thankful for how intimately connected I feel to my own mortality and to my physical needs, and for the urgency and seriousness that I have had to take those needs. And this is what I wish for my kids: a sensitivity to their physical selves, and the confidence to meet the needs of their body, to rest. To know that they can stop doing the dishes, and take a bath instead.

Kathleen Donahoe writes poems and essays to make women feel seen and powerful. She lives in Seattle, WA. You can find her online @kathleenicanrah