Kintsugi Fatherhood

I used to think that parenting meant protecting my child from cracks. It was my job to keep my son’s life smooth, whole, and unbroken. But when he started having seizures, everything fractured. Our assumptions. Our plans. Our son. Our lives.

My son went from having no seizures to having epilepsy. He went from a typical, healthy child sleeping in his bed to a child confined to a hospital bed, doctors standing over him, trying to save his life. He went from running circles around the house to being unable to walk at all. He was broken, the imperfect pieces scattered in countless directions.

I was broken, too, like the unspoken promises I had made to give him a life better than my own. I was helpless. Lost. Scared. Paralyzed. I didn’t know what to do. I couldn’t fix it. I wasn’t sure what would happen, but I knew every plan we had made before that hospital stay was also broken.

I grieved for the version of parenthood I thought I’d live. I grieved for the ease I thought he’d have. I thought those pieces of my son, myself, and the life we had planned would never be whole again.

But we didn’t stay broken.

We made it out of that hospital room. And the next one. And the next one. We adapted. We healed—imperfectly, tenderly, and not all at once. Each new challenge left its mark, but those marks became part of the story. And somehow, over time, we became something stronger than before.

It reminds me of kintsugi, the Japanese art of mending broken pottery with gold. The philosophy says that when something has suffered damage, it shouldn’t be hidden—it should be honored. The breaks don’t ruin the piece. They reveal its history. They add beauty.

We can never return to the state of being unbroken. This life broke away from that possibility the moment my son had his first seizure. My son has lived through things most kids haven’t. And he carries those experiences with him, reflected brightly in the love, care, and attention that helped mend his broken pieces to make him whole.

He is not whole despite what he’s been through.

He’s whole because of it.

Wholeness isn’t about perfection.

It’s about loving what’s being transformed.

The Theater of Cowardice

What unfolded in Congress last week wasn’t just political strategy — it was a performance. A performance where many were aware of the potential damage this bill could cause, and still chose to go along with it anyway.

The new tax-and-spending bill is massive, packed with everything from tax breaks to military funding. But hidden inside are deep cuts to Medicaid — the very program that supports families like mine. It’s a lifeline for children with disabilities, for the elderly, for rural hospitals. And yet, that lifeline was negotiated away like a bargaining chip in the final hours before a holiday break.

What struck me was how many others clearly wrestled with their conscience — and still voted yes. They voiced concerns in the press. They called the process rushed. They acknowledged the human cost. And then they folded. They let themselves be swayed by late-night tweaks, vague promises, or political loyalty. They did what was easiest, not what was right.

This isn’t new. But it’s still devastating.

When I read about lawmakers huddling under blankets in the Senate chamber at 3 a.m., fueled by carrot cake and caffeine, I couldn’t help but feel the disconnect. I know a different kind of 3 a.m. — one spent next to a hospital bed, watching your child attacked by seizures as doctors huddle over him trying to save his life.

It’s easy to stand tall when the cameras are rolling, when your party is watching, when your vote aligns with power. It’s much harder to stand up when you’re standing alone — when your vote might cost you political capital, or a committee seat, or an invitation to the next fundraiser, or the favor of a narcissistic, fascist dictator.

But that’s what courage demands.

Senator Chuck Schumer said it plainly: “They didn’t have the courage, they didn’t have the backbone to vote with the people of their states.” Some senators voted in “obeisance to Donald Trump and his billionaire buddies,” even when their constituents — the ones in hospital beds, the ones relying on Medicaid for cancer treatment or seizure meds or speech therapy — were the ones who stood to lose the most.

We’ve been in this fight too long to pretend this doesn’t hurt. I’ve filled out the Medicaid renewal forms while sitting on the floor of a hospital room. I’ve seen the costs of the pills, therapies, and surgeries that kept my son alive and have given him a life worth living. These programs, flawed as they may be, are holding up families like mine. If they cut it down, what’s left?

This wasn’t just cowardice. It was a performance of leadership with no real cost to the performers. But for families like mine, the cost is very, very real.

There’s All Kinds of Success

I was listening to a recent episode of Adam Grant’s Work/Life podcast where he and author Susan Dominus discussed the psychology of achievement and success. There were a few quotes from the episode that stuck out to me as the parent of a child with special needs.

I think this idea that parents are burned with, which is that if their child does not succeed in some socially conventional way, that they have not done their job.

That idea used to live rent-free in my head.

I thought my job as a parent was to prepare my son for the world—and by “the world,” I meant the conventional path: grade school, high school, college, career. That was the map I followed for the first five years of his life.

Then he started having seizures. He was diagnosed with epilepsy. And still, I clung to that same definition of success. I believed I could outwork the diagnosis, push through the limitations, and keep him on the traditional track. But the more I pushed, the harder it became—on both of us.

Eventually, I realized that holding on to that version of success was causing harm. Not just to his progress, but to his spirit—and to our relationship.

My job is to prepare my son for the world. But first, I have to meet him where he is. Not where society expects him to be. Not where I once hoped he’d be.

Right here, right now.

Is it a parent’s job to measure their child’s utility and successfulness in life?

It is a painful trap to judge our parenting by how well our kids reflect society’s idea of worth. We start to see them as mirrors of our own success or failure. We fear that they won’t measure up if they don’t fit in, if they are awkward, or if they don’t meet the normalized expectations of a traditional education, career, and life. It’s bad enough that, unless you have an extraordinary talent or athletic ability, fit unrealistic expectations of beauty, or have an idea that can make a fortune, you’re already excluded from those seen as the most valuable.

And more dangerously, we risk not seeing our children at all.

There’s all kinds of success.

Success shouldn’t be a single destination. It should be a personal journey—based on who he is, what he loves, and what he’s capable of. My job is not to chart the course, but to walk beside him, to clear the obstacles, and to remind him that his path is valid—even if it doesn’t look like anyone else’s.

That’s the shift I’ve had to make: from measuring success by milestones to celebrating presence, progress, and personhood. My son may not follow the path I once imagined, but every step he takes on his path is a triumph. And every time I choose to see him—not through the lens of expectation, but through the truth of who he is—I succeed, too.