Category: epilepsy

The Shape of Things

The longest that I’ve ever been apart from my son is about a week.

When I was traveling for work, I would leave on Monday and return on Thursday or Friday. While I was gone, we would call or FaceTime, anything to stay connected. Once, for a trip to San Diego, he snuck a small stuffed dalmatian into my luggage, so I sent him pictures of the adventures that my traveling companion had. The plane, the hotel, a restaurant, the beach.

Even then, he would sometimes come with me on trips, especially back to Colorado, but also to Seattle, New York, and Las Vegas. I think back now on how lucky we were to be together on those trips and to have those shared experiences.

A few years ago, he attended a camp hosted by our local Epilepsy Foundation affiliate. That was the most disconnected I had been from him, dropping him off on a Sunday and not seeing him again until camp ended on Friday. The first year was rough, partly from the separation but partly from worry about his seizures, even though he was in a camp for kids with seizures, surrounded by doctors, nurses, and staff who volunteered their time to give children like my son this experience. The second year at camp was easier, but it still wasn’t easy.

Last fall was the first time I had put him on a plane without me. He was traveling to see his mother. It was only for a few days, and the change in family dynamics was still new, so the feeling of distance was intertwined with the realization of a different future where this would be the shape of things now.

It was repeated over winter break when he spent Christmas with his mother. A longer stretch apart at a time that historically brought more family together.

As I write this, my son is preparing for another trip to visit his mother.

This time, he’ll be gone for six weeks.

For the past year, we’ve built our new routines in our new life. The logistics of work, school, and appointments. Managing medications and filling the pill containers every Sunday morning while I drink a cup of coffee. The dogs piling on his bed to wake him up every morning, with me not far behind. Playing basketball in the driveway after school, and video games before dinner. All of it built around his presence. And now there’s this stretch ahead where the house will be quiet in a way it hasn’t been before.

He understands how long he’ll be gone. He’s excited about it, too, which is the right thing and I’m glad for it. His mom’s place has a pool. They’re going to Colorado to visit family. He’ll get to do things he doesn’t get to do here, and he’ll get time with her that he needs and deserves. I’m going to back off and let them have that. Whatever it looks like in reality, right now he’s looking forward to it.

I want that for him. I do. And I’ll miss him every day of it.

The first morning will have its own weight. There’s somewhere I need to be, something tied to the process of how we got here, and I’ll go do that and then come home to a house that’s already started its six weeks.

The plan is to fill the time. We’ll still text and FaceTime. We’ll still play Fortnite and Rocket League online. That part doesn’t have to change. But the house will still be quieter than I’m used to. I’ll lean into work. Get the yard projects done that I’ve been putting off, because spending time with him always felt like a better use of an afternoon. Spend more time with my goddaughter. Let the dogs fill some of the space he leaves behind, which they will, because that’s what they do.

I don’t have a clean way to think about it. He’s excited, and I’m glad, and I’m dreading it, and I know it’ll be fine, and I know six weeks is a long time. All of that is true at the same time.

This is the shape of things now. The separation brought a new geography to his life, and six weeks is part of that.

I’ve known it was coming.

Knowing doesn’t make it smaller.

Our Thing

There is a picture from around his second birthday. He is standing in the driveway holding a basketball that is almost as big as he is, looking up at the hoop with complete seriousness.

He couldn’t make the shot on his own. I would catch the ball on its way up and guide it the rest of the way in, or lift him over my head so he could drop it through himself. When it went in he celebrated like he had done it alone. I made a big deal of it every time.

That was the beginning.

When we moved to Philadelphia we didn’t have a driveway anymore, but there was a schoolyard at his school a few blocks away. By then we were already on our epilepsy journey, already living inside the routines and the vigilance and the weight of it. We’d walk over and shoot around. I taught him how to play 21, the same game I had played as a kid. It was something ordinary we could do together in the middle of everything that wasn’t.

When we moved into our current house, the basketball hoop was one of the first things we bought. We were playing before the furniture was arranged, before the boxes were unpacked, before the house felt like ours. After years in the city we finally had a driveway, a yard, open space. We went outside and used it.

A few days after we moved in, the neighbor kids knocked on the door and asked if my son wanted to play. I watched from the driveway as they shot around together. In the city, friendships had required effort and coordination, phone calls and scheduling, nothing that could just happen. This did. It reminded me of how I grew up, wherever we lived there were always kids around and you’d just find each other. He got that here. Maybe for the first time.

For a few years the three of them played together regularly. Eventually they grew in different directions the way kids do. But my son and I kept playing.

His school has an intramural basketball program and he joined it his first year there. He wasn’t always the best player on the floor but he was the one with the biggest heart. He became a leader on the team, the kind that the other kids looked to, not because of his stats but because of how he showed up. Being on a team with his friends, competing, belonging to something. That mattered.

We are five summers into this driveway now. He is taller than me. He blocks my shots in a way that is partly skill and partly satisfaction, and I can see both in his face when he does it. Before we play he puts on music. Rock and roll, always. The specific song rotates. If he’s losing he’ll sometimes switch to something with more energy, a more powerful jam, as if the playlist is responsible for the score. I let him believe that.

The only things keeping me competitive are my jump shot and my free throws. That balance is shifting. I know it.

I don’t mind. Every moment with him is something I don’t take for granted. I have watched him struggle with so much. And so when he makes a good shot, when he beats me and celebrates, when he is just a kid in the driveway playing basketball with his dad, I hold onto that. He is getting older. He has his own life filling in around him, his own friends, his own things. I am grateful we still have this one.

He’ll get home from school and ask if we can play. He puts the music on and we go outside.

That’s enough for me.

Whatever Comes After

I sat at a table in the gym at my son’s school. At the other tables, there were a dog groomer, a police detective, someone from the state park maintenance crew, an archaeologist, and other community members. We were there for career day.

My topic was AI.

I’ve spent more than a decade working in artificial intelligence. In most rooms, the conversation covers the hype, the promise, and the fear of what AI is taking away. Today it was about the kids. About how, whatever path they found, AI would be part of it. How it could help them be creative, express ideas, and make things that hadn’t existed before.

I wanted to use it as an opportunity to talk to the teachers as well. They were as curious as the kids, maybe more so. They chose this work deliberately, and they took everything seriously, including this. Some were more comfortable with technology than others, and some were still trying to separate what they’d heard about AI from what it actually was. But they knew it was here. They knew their students would use it. And they understood, maybe more clearly than most, that for kids like theirs it could be something more than a productivity tool. It could be an enabler. A way in to things that had felt out of reach.

The first group of kids entered the room.

I had a sign on my table. My name is Dave. My son goes here. He’s in tenth grade. Ask me about AI.

When each group came over I’d ask their names, what grade they were in. I told them my son went to this school. I asked if they knew what AI was and offered the simplest explanation I could — using a computer to create something new. Then I told them my son had made a song using AI. That it was on Spotify and Apple Music. And I played it.

They listened. When it ended I told them there was no one playing instruments, no one singing. A computer made all of it.

I asked them if they wanted to create something.

With the younger ones I had cards with Mad Libs style prompts. They would fill in the words and I would enter them and we would watch their idea become an image. Their dog as a superhero. A hero with brown hair wearing armor made of green dragon scales. They were amazed at how it worked. The words going in, the image coming out, something that hadn’t existed a moment before. I also had a handout they could take home, with example prompts their parents could try with them.

The middle school kids didn’t need the cards. They came up with their own ideas. One wanted an image of something specific. Another wanted a training plan for a video game he was trying to get better at. They knew what they wanted to make. They just needed someone to show them the tool.

Some had already used ChatGPT. A few had used it for homework. One girl said she used it as someone to talk to.

That made me think about my son.

About the years he spent on the outside of social groups, wanting to be understood, not always finding the right person or the right moment. About what it would have meant to have something that would just listen. That wouldn’t get tired or distracted or move on. The adults in the room were thinking about AI in terms of what it might take from these kids. That girl was using it for something the adults hadn’t thought to offer her.

That’s always the interesting part. Not what the technology is supposed to do. What people actually do with it.

I was waiting at my station when a few of his teachers stopped by to tell me he had been excited about career day. That he had prepared questions. That he was ready.

When his group came in, he started at the far end of the gym. I watched him work his way around the room, stopping at each station, his piece of paper in hand. He was serious in a way that was hard not to notice. Not performing seriousness. Actually in it. Each presenter got his full attention.

Eventually he made his way to me. He had a wry smile when he arrived, like he had been saving something.

He asked me what I wanted to be when I was younger.

I told him I wanted to be a marine biologist for most of my life. That I was always good with computers and had my first one around age ten and started learning to program. That somewhere along the way the computers won.

He listened. He wrote something down.

We’ve had this conversation before. A few times, actually. It’s not one of the things his brain decided to store, so each time it comes back around it’s new to him. I don’t mind. I’ll answer it as many times as he asks.

He worked through the rest of his list until he was done. I watched him move on to the next table, his paper still in hand. And then it was over. I packed up my things and he walked back across the gym to join me.

As we walked to the car, I asked him how it went, and who he talked to, and what he learned. He was excited that he got to pet the dog. He was interested in the auto body shop, and I told him they were the ones who fixed the mirror on our car. I don’t know if he was looking at any of them as possibilities. I just loved that he was curious.

His school thinks about this deliberately. They talk about life after graduation as something to prepare for, not just something that happens. Giving kids a glimpse of what their futures could look like, what’s out there, what questions are worth asking. They’re educating the whole child. The curiosity. The encouragement to chase it. The bravery to follow through. That’s how they do it.

He showed up with questions. He asked every one of them and left curious about something new.

Whatever comes after, that’s a place to start.