Tag: epilepsy

What Could Have Been

I was listening to a podcast recently about a woman in her seventies, semi-retired, describing a life built around boards and civic connections and a career that had opened into something expansive in its later years. She sounded settled in a way that felt earned, like she had arrived somewhere she had been moving toward for a long time.

I recognized the path. Not because I’m in my seventies, but because I was on a version of it.

When we moved from Colorado to Philadelphia about a decade ago, I was a senior director at a Fortune 50 company with real scope and responsibility. A few years into that role, I joined a civic leadership program that brought executives from major Philadelphia companies into the city’s nonprofit community. Over the course of a year, you got deep exposure to the city’s history and institutions, built relationships across industries, and came out the other side connected in a particular way. The expectation was that you’d land on a board somewhere, that you’d become someone who contributed to the city in that civic, executive register. The people around me were doing exactly that, and I could see the same future taking shape for me.

Burnout changed the calculation. So did my family needing more of me than that version of my life was leaving room for. I stepped back from the executive track and took an individual contributor role after we moved to the suburbs, trading scope and gravity for time and presence.

What I didn’t fully anticipate was where that would eventually land me. I’m in my early fifties now, a single dad doing his best to hold things together, and the life I’m living looks almost nothing like the one I was building toward in that leadership cohort. The board seat, the Philadelphia connections, the version of myself moving through the city with a sense of purpose and forward momentum — that version didn’t make it here. Not yet, anyway. Maybe not ever.

The woman on the podcast wasn’t describing my life. She was describing what my life looked like from a certain angle, at a certain moment, before it went somewhere else entirely.

I think about that when I think about my son’s future.

I spend a lot of time with the map of what his life might look like — the limitations, the closed doors, the jobs that seem within reach, and the ones that probably aren’t. I carry a picture built from everything I know right now, shaped by twelve years of navigating his condition, watching carefully, and trying to be realistic without being defeatist. It feels like an honest picture.

But five years ago, I would not have predicted this. Not the single part, not the scraping-by part, not the individual contributor part. The version of me in that leadership program had a reasonable picture of the next decade, but it was wrong in almost every respect.

That doesn’t mean his future is full of hidden good news I can’t see yet. I’m not reaching for easy comfort. The limitations are real. The hard parts are real. Uncertainty isn’t the same as hope, and I try not to confuse the two.

But I’m holding his map a little more loosely than I used to. If my own path could shift that completely in five years, I don’t actually know what his looks like in five years either. The shape I think I can see might not be the shape it takes. The road I think he’s on might lead somewhere neither of us expects.

Most days, that doesn’t feel comforting. It just feels true.

Five years ago, I would never have thought I’d be here. And that might be the only honest thing I know about the future.

Not His Thing

I read about a hundred books a year. Most of them are audiobooks, which I get for free through the local library. It’s one of those habits that has been with me since I was young, the library as a place, the books as company. My goddaughter is also a reader, and a few months ago we got her a library card. Usually she reserves books online and I pick them up on my way back from school drop-off. But occasionally we’ll go together to browse.

A few weeks ago the library had a book sale. My goddaughter and I left with bags. My son came with us and looked around, but I could see pretty quickly that he wasn’t having a good time. The sale was crowded and overwhelming. Books are hard for him. Reading is hard, comprehension is hard, and a room full of them without a clear purpose is a lot to navigate.

We went back this past weekend, the three of us. No sale this time, just browsing. While my goddaughter moved through the poetry section, I took my son to the computer to look up Rocket League and eSports books. Nothing in stock. We walked over to the gaming section. Nothing caught his eye. But the drawing section was right next to it, and he knew I liked to draw, so he pointed it out to me. That’s who he is.

He was a good sport. He tried. But he was miserable and I could see it.

I walked over and put my arm around him. “This isn’t your thing,” I said.

“Not really,” he said.

“Go sit in one of the chairs and use your phone.”

He found a chair and opened his chess app.

He picked up chess from me. I was playing for a while and he got curious, the way he does. Then Duolingo added chess and gamified it and he had his own relationship with the game. Now he does the lessons and the challenges on his own. We’ll play each other on our phones when we’re waiting at appointments, or sitting for the thirty minutes after his allergy shots. Sometimes we’ll pull out the board and play at home.

Just like that, he was fine.

I watched him for a second before heading back into the stacks. There was something about seeing him settle in that felt right. Not because he had given up, but because he didn’t have to pretend anymore. I worry sometimes that when we do things like this, he thinks he’s disappointing me. That his not being into something I love means he’s falling short somehow. Saying it out loud felt like giving him permission to just be where he was.

Reading has always been a challenge for him. It has to be something he’s genuinely interested in to get him over the hurdle. A Fortnite magazine, a Minecraft guide, something with pictures and a clear purpose. It helps when I read to him, doing the voices, making the connections, reminding him who the characters are and what happened before. Without that scaffolding, it’s a lot to hold.

I think sometimes about what it would be like if reading weren’t so hard for him. Not because I need him to love books. Plenty of people don’t, and that’s fine. But when something is hard, you know it’s hard. He knows it’s hard. And I wonder sometimes what it costs him to be in a place like this, surrounded by something that doesn’t come easily, watching the people he’s with light up over something he can’t quite reach.

It’s not about books. It’s about things being harder for him than they should be. That feeling surfaces in different places. This weekend it surfaced in a library.

He found a chair. I went back to the stacks. My goddaughter kept reading.

It doesn’t run smoothly yet. I’m helping her navigate, checking on him, not really lost in the shelves the way I’d be on my own. But there’s something there. A place where each of us can find our version of being there. Him with his chess. Her with her books. Me somewhere in between, figuring it out as we go.

We’re not there yet. But we’re going.

Nothing, Again

A few years ago, we did genetic testing for the first time. An exome sequencing — not the full genome, but a significant portion of it. They found a variation in the PRICKLE1 gene, which is associated with epilepsy. It looked like it might be something.

It wasn’t.

We were told the science was always advancing. New connections were being made between genetic variations and conditions like his. It would be worth revisiting in a few years.

So we did.

This time it was the whole genome. All three of us — my son, his mom, and me. The test looked for epilepsy markers, indicators connected to intellectual disability, and secondary findings in areas like heart and cancer risk. The technology had advanced. The dataset was larger. There was more to look at than there was last time.

I didn’t go in with much hope. Not because I’ve given up, but because I know where we are. My son is sixteen, and we’re twelve years into our epilepsy journey. We’ve tried most of what there is to try. We know his condition better than most people ever know anything. A clearly-named cause wouldn’t open new treatment doors at this point. It would just be a name.

What I was actually hoping for was not to hear something worse. There are types of epilepsy with harder trajectories than the one we’re already on. A result isn’t always good news. Sometimes it reframes everything you thought you understood.

I got a voicemail from the genetic team. I called back and left one of my own. A few days passed. Then they called me at work.

The call lasted for about five minutes.

The epilepsy markers and the intellectual disability indicators. Nothing found.

She asked if I had any questions. I didn’t.

The secondary findings came back clear for all three of us. No elevated markers for heart conditions. No increased cancer risk. That was genuinely good news. It landed as good news. I noticed that it did.

At the end of the call, she said that science is always advancing. New connections are being made. She said we should revisit in two years.

I recognized the closing. It was the same one from last time, when the PRICKLE1 variation turned out to be nothing. We’ll keep looking. Check back when the data has caught up.

I said thank you. I hung up. I went back to work.

That’s the part I keep coming back to. Not the results. It’s how quickly I moved on. There was a time when a call like that would have carried weight for days. The waiting, the callback, the five minutes of someone telling me we still don’t know. That used to be an event.

Now it’s just a Wednesday.

I don’t know if that’s peace or just distance. I don’t know if I’ve made my peace with the uncertainty or if I’ve just stopped expecting it to resolve. Those aren’t the same thing, even if they look similar from the outside.

What I know is this. He is who he is, named or unnamed. The cause doesn’t change the kid. It doesn’t change what we do tomorrow, or next week, or when the next appointment comes.

In two years, we’ll do it again. We’ll see what the science has found by then.

Until then, we’ll keep doing what we’re doing. Living our lives. Hoping the science advances. Hoping for new medications, new treatment options. Hoping his DBS continues to provide more benefit. Doing what we’ve been doing since the last time we sat down for this test.

Living, and waiting.

In that order.