My name is Dave.
I’m the father of a son who has refractory epilepsy.
His first seizure happened in 2014, in Philadelphia, while we were visiting ahead of a move to the city. He was four. We didn’t know what it was at first. By the time he had his second one, we did.
Since then: medications, the ketogenic diet, a VNS implant, a DBS implant, countless appointments, and a lot of waiting. He’s sixteen now. He still has seizures. We’re still figuring it out.
I started this blog in 2015 because I needed somewhere to put it. I wasn’t writing for an audience. I was writing to get it out of my head. Then other parents started responding — parents a few years ahead of us, parents just starting out — and it became something else. A place where the experience of this particular life gets written down honestly, without resolution.
The writing here is not inspirational. It doesn’t end with lessons or silver linings. It’s just what it’s actually like.
I’m also finishing a memoir. It covers the same twelve years, from the beginning. When it’s ready, the email list will hear about it first.
If any of this sounds familiar, you’re in the right place.
If you’re new here, these are good places to start:
My Typical Day — What this life actually looks like, day to day. Written early in the journey, when we were still figuring out what normal was going to mean.
Getting Used to It — Twelve years in, and it still isn’t background noise. Every seizure still lands. But you find a way to keep going anyway.
Our Thing — My son and I, and what we’ve built together in the middle of all of it.