Making space for dads in caregiving
By Robin Koczerginski
When I entered the world of parenting a medically complex child, one thing struck me almost immediately: most of the voices I encountered were mothers. It was the moms who filled the Facebook support groups and wrote the blogs and books I devoured at 2 a.m. in waiting rooms and by hospital bedsides. Their stories were raw, real, and invaluable. But I didn’t always see myself in them.
As a dad, I felt like a quieter presence in a space where my daughter’s needs were always front and centre. Our daughter Bree was born with Trisomy 13, a rare genetic condition that brought us into the world of disability and intensive hands-on caregiving. In many ways, it made sense that my role would take a back seat; Bree deserved nothing less than our full attention and advocacy. But it also left me wondering: Where do dads fit into this conversation about caregiving and disability?
This is my attempt to share one father’s perspective. One that doesn’t always line up with cultural expectations, and one that has been reshaped entirely by my daughter Bree. Fatherhood in the world of disability and complex medical needs looks different, and it's not something we hear much about. That silence is part of the problem.
There are lots of gender stereotypes in parenting. As a dad, I’m not pretending I have the short end of the stick. Moms carry more. That’s not up for debate. But naming the unique pressures dads face doesn’t take away from that; it simply makes space for both truths to coexist. So how do these stereotypes and gender imbalances translate to parenting a disabled and medically complex child?
Being a dad to my daughter Bree means the bar is somehow both lower and higher at the same time. Lower because the world congratulates me for showing up. Society doesn’t expect us dads to be the ones sleeping upright in the hospital chair, or juggling schedules of specialists, or anticipating the next illness. If I learn the feeding pump, I’m devoted. If Rachael, my partner, learns the feeding pump, she’s a mom. One of us gets applause. The other gets expectation.
If I'm taking care of Bree at home, whether it is managing her secretions with suctioning, administering medications, adjusting her oxygen, or simply spending meaningful time playing with her, I'm praised as a devoted father. Yet when Rachael does these same things, it's just part of her role as Bree's mom.
On the other hand, fathers face pressure to be stoic, strong, and unfazed, to be the one holding it together without letting emotions take over. I’m supposed to protect my children at all costs, right? But how do you protect your child from something written into every cell of who they are? How do you stay stoic when monitors scream alarms and your baby’s life feels impossibly fragile?
Sometimes I like the cultural script for dads because it lets me off easy. Other times, I resent it because it doesn’t give me the same permission to grieve or to admit I’m scared. To say that I miss the days when parenting felt simpler, before the weight of constant worry and responsibility. The truth is, I’m not strong. I’m just here.
What I’ve learned raising Bree is that neither of the usual parenting stereotypes fit: the strong, stoic father who hold everything together, or the selfless mother who carries it all. Fatherhood in this space is something more nuanced, more vulnerable. And it’s also about something that might be unexpected. Raising Bree has been the most profound and joyous experience of my life.
So why does it matter if dads share their voices in these spaces?
Because when dads stay silent, the stereotype stays intact. The belief that caregiving is primarily a mother's role still runs deep, and the weight keeps falling on mothers’ shoulders. Our silence reinforces the idea that we’re “helpers” instead of equal partners, that our job is to fix the broken sink while someone else handles the sleepless nights, the emotional heaviness, the quiet unraveling that no one sees (even if I, personally, have no idea how to fix much of anything in our household).
Dads’ voices matter because our kids deserve to know us fully, not just as the stoic figure in the background, but as whole people who feel, break, rebuild, and love.
And maybe most of all, our voices matter because other dads need to hear them. I remember searching in those early days and struggling to find reflections of myself. What I needed wasn’t a manual. I didn't need steps or answers. I needed permission to show up imperfectly and to be a different kind of father than the one shaped by cultural expectations.
The more dads share their experiences of fatherhood in the world of disability and complex medical needs, the more permission grows. And maybe, just maybe, it helps reshape what fatherhood can look like in this unique situation.
When I first found out I’d be a dad of two girls, I pictured them growing up together: playing in the yard, navigating chaotic breakfasts, wearing matching Halloween costumes, making us dinner as adults, and sharing their lives with us long after they had grown. These expectations were shattered with Bree’s diagnosis. I didn’t know what fatherhood would look like for a daughter whose path would be so different from the one I had pictured. Being Bree’s dad is more than what you see on the surface. The medical care and support are part of our life together, but so are the walks, the songs, the laughter with her sister. Both are real and both matter. I learned patience and focus. I learned love and grief. I learned to experience and embrace the vast spectrum of emotions that life has to offer.
This isn’t the version of fatherhood I once pictured. But it’s the one Bree gave me, fuller and deeper than I ever expected.
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