Being present is what makes my husband a great dad
He adapts to whatever hemophilia and epilepsy throw his way
Living with hemophilia and epilepsy has shaped much of my husband’s life — but fatherhood transformed it.
Before our daughter was born, Jared, my husband, already carried the weight of two chronic conditions. He’d long made peace with a life of calculated risks, limited physical activity, and the unpredictability that comes with bleeds or seizures. But becoming a dad changed how he carried those things. It didn’t erase the hardship. Instead, it gave him a reason to move forward with more intention and heart.
Fatherhood as an anchor
Jared has always been thoughtful and deliberate, but fatherhood anchored him in a new way. Suddenly, every decision — even the smallest ones — carried more meaning. A flare-up in his ankle didn’t just mean pain; it meant possibly missing a weekend activity with our daughter. A seizure didn’t just require rest; it occasionally interrupted bedtime stories, our conversations, or her playful requests for piggyback rides. So he found ways to adapt.
I’ve seen him pack crutches into the trunk so we could make it to a family outing during a bleed. I’ve watched him lie still on pain meds, gently whispering chapter after chapter from our daughter’s favorite book. On days when movement is hard, he stays in bed and finds ways to make her laugh, turning quiet moments into connection. He’s even turned his post-seizure expressions into a lighthearted joke, just to keep her from feeling scared.
These things may look small from the outside, but to us, they’re everything.
Showing up however he can
Jared doesn’t deny what his body needs. He rests when he must. But more often than not, he asks, “If I can’t do this, what can I do today?”
If he can’t stand, he might crawl or scoot. If he can’t lift our daughter up into a hug, he’ll stretch out his arms for her to fall into. He reimagines his role again and again — not out of obligation, but out of love.
There’s a line from my favorite band, Fall Out Boy, that says, “Make no plans and none can be broken.” Oddly enough, that positively resonates with me. In our world, flexibility isn’t failure. It’s how we keep going, even when the original plan falls apart.
Jared’s days aren’t neatly structured, and not every plan comes to fruition. Sometimes he pushes too far and ends up paying the price with swelling, pain, or exhaustion. Other times, I gently nudge him to slow down — and he listens. Together, we’ve had to keep renegotiating what “showing up” means in a life that’s often interrupted.
Still, Jared shows up — perhaps not always in the ways social media glorifies, but in the real, grounded ways that count: helping with homework from the couch, making a breakfast run with a compression wrap on his joints, being the safe, warm presence our daughter seeks at the end of a long day.
He’s not perfect. He doesn’t pretend to be. But his willingness to adapt — to keep choosing presence over absence — is what makes him a remarkable father. He may live with two conditions that interrupt our rhythm, but he never disappears from the song. He returns, again and again, because he wants to.
And in our family, that kind of steady love means everything.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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