My Disability Means I Spend 20 Hours A Day In Bed — It’s My Kids’ Favorite Spot In The House

If there is one parenting trope that I think about a lot, it’s the bed mom. The bed mom has given up. Or she will give up soon. Her children sit outside her door, hoping that it cracks open, desperate for just one moment of their mother’s love.

She’s usually depressed, or addicted, or dying of cancer. She has a migraine. The room is stale, or, as with Edie Beale from Grey Gardens, overrun with ephemera, a hot dog maker and a record player.

When I mention this trope to friends, most of them have no idea what I am talking about. They hardly remember seeing moms in bed, they tell me. But it haunts me. I notice every instance in a movie scene or book passage with a mom in bed. They scream to me, reiterating my theory that this is a type. My own insecurity-driven Baader-Meinhof phenomenon.

I worry about what it means to be a mom in bed. On average, I am in my bed for 20 hours every day. I sleep in bed and work in bed, and because my husband, David, and I have two young kids, I parent in bed. K is 7, is joy personified, and little F is 7 months old and is perfectly mushy.

My bed is king-sized with an adjustable frame and a hybrid spring/foam mattress. We call it my bed, but technically, it’s also David’s. He has a side of the bed and a nightstand and a pillow, but if hours logged determine ownership, it’s mine. I have an auburn floral quilt and a checked cotton coverlet. My sheets are crisp and floral. In my closet, I store my night pillows: a shredded latex option that is best for my neck and shoulder pain and a heavy memory foam body pillow that helps my hips stay in alignment.

I have an auburn floral quilt and a checked cotton coverlet. My sheets are crisp and floral.

In the morning, David helps me set up my bed for the daytime: We pull the quilt up and replace my night pillows with my two pretty day ones, in their tawny quilted shams. We elevate the head of the bed and raise the foot and wheel over the portable end table. From underneath, I pull out my lap desk, computer, and notebook. I put in my hearing aid and divide out the day’s medicine, and David microwaves my heat pack for my lower back and brings in a pile of cold ice packs for my upper back.

But I’ve jumped ahead. An hour or more before any of this, around 6 a.m., I wake up. David sleeps in the baby’s room during his first year. I can’t stand up at night or even sit up, so David is responsible for night feedings or the occasional insulting night poop.

I swallow my morning pills as soon as I wake up, and they take about an hour to work. My medication treats part of my disability, POTS, and reduces the amount of dizziness I feel when sitting and standing. Until it takes effect, I must stay horizontal. Even after that hour, I cannot stand for more than 30 seconds and use a wheelchair when outside the home. But without the medicine, I couldn’t do even that much.

K comes in, climbs under the covers, and asks about my dreams. Recently she’s been joined by her “bottle of wonders” — an old plastic bottle filled with “marbles and heads.” A bit later, once she’s set up with her chocolate milk and the TV, David brings in F, who flops around under the covers with me, pulling on my lips, poking my cheeks, and pawing at the collar of my T-shirt.

David makes his coffee and mine and we all talk, F exploring my bed, attempting to hurtle himself off the edge. I wrap my hand around his plump ankle to stop him. We make some joke about how busy the baby is, and David takes him to his playpen where K “babysits” and David unloads the dishwasher and takes the dogs out to pee.

My adjustable bed isn’t the only seat in the house, of course, but the intensity of my daily pain and the persistence of my dizziness means that it is the only place I can bear to spend more than an hour or so at a time. As one hip begins to throb, I adjust the foot height slightly and experiment with different backrest angles. I reposition my pillows. I refresh my ice packs and rewarm my heat pack.

I do most of my parenting from here: I color with K, feed F his bottles. I have a basket of baby toys at hand. I change diapers and cuddle and give F food, putting down a towel to protect my quilt. K dumps her fidget box next to the bed, and we play with her favorite glitter wands. I clip fingernails. In three days, it’s hair weekend, and I will spend a total of 10-12 hours detangling and braiding K’s hair. In bed.

I scratch backs and apply lotion and suck snot from noses. I cut tags out of clothing and label clothes for school. I cut up pills and negotiate TV time. From bed.

This approach, to reject hyper-productive and individualistic parenting, and to live within our actual needs and limits, could benefit everyone. I wish every parent could listen to the important and real limits of their bodies and minds.

This week, I have been trying to track down more baby formula for F because there is a shortage. I schedule doctor visits and file insurance claims and organize playdates and order more kid clothes and order groceries and order masks and order birthday presents.

And, of course, I don’t only parent from bed. I work here, too. I write books; I am writing this essay; I record podcast interviews. I meet with publishers and publicists and agents — in bed.

I go to therapy and I check in with friends and I read books.

Sometimes, before an important meeting, I consider trying to relocate myself (and my heat pack and my computer and my ginger candy for nausea) somewhere else. Should I move everything over to a chair or the sofa? And sometimes I do, because I feel embarrassed or I want the other person to know I am taking things seriously. I think about the rule from grad school that attending class from bed counted as an absence.

But part of me worries that being embarrassed of my bed is being embarrassed of my fragile and aching body. And I’m not. She is doing a very good job.

When writing my book on disabled parenting, Unfit Parent, one of my favorite realizations was just how much a disabled perspective transforms the experience of caring for children. It is widely accepted that being a parent right now is difficult: It asks more from our bodies and minds than we have to give. What I have seen in my own life and in the lives of other disabled parents is that disabled people are dislodged (by their needs, by ableism, by exclusion) from the factory-produced model of what a parent should do or be. It’s from that outsider position that we apply disabled innovation, creativity, and acceptance and set up structures that respect what our bodies and minds actually are.

This approach, to reject hyper-productive and individualistic parenting, and to live within our actual needs and limits, could benefit everyone. I wish every parent could listen to the important and real limits of their bodies and minds. Because that’s what my bed is; it’s the spot that works for my body. Full stop.

And I don’t think it’s a coincidence that my bed is, unanimously, the favorite spot in our house. It’s not for nothing that every person’s first stop after waking is under the covers with me.

Jessica Slice is a disabled author, speaker, and essayist. Her forthcoming book, Unfit Parent: A Disabled Mother Challenges an Inaccessible World, will be released in April 2025. She is the co-author of Dateable: Swiping Right, Hooking Up, and Settling Down and This is How We Play. She is a graduate of Davidson College and Columbia University (MSW) and lives in Ontario with her family.