Category: epilepsy

Still a Hockey Player

My son wants to be a hockey player again.
Actually, he’s wanted to be a hockey player for most of his life.

Hockey has always been part of his identity. He had a hockey stick in his hands as soon as he could stand. He left the hospital with an NHL toque on his head. One of my earliest memories of him is lying on a couch in a hospital room a day or two after he was born, him asleep on my chest, a hockey game on the television.

Before the seizures.
Before we knew what was coming.

When he was little, we played hockey in the living room with miniature sticks and a foam ball. We took turns as players and goalies. We went to an outdoor rink near our house with sticks and a ball and played one on one.

One time, there were other people there—teenagers, I think. One of them was a goalie. He let my son take shots on him. Let a few go in. My son was three or four. This was still Colorado. Still before everything changed.

He started skating when he was two. He joined “Intro to Hockey” when he was about four. Right before we moved to Pennsylvania. Right before the seizures started.

Right before we knew what we were carrying forward.

Once his seizures were somewhat under control—though never eliminated—we tried again. We went back to skating. We worked on stick handling off the ice. But even that eventually became too much. Then COVID hit, and everything stopped.

When we moved to the suburbs and the world slowly opened back up, we tried skating lessons again. But they were exhausting for him. His ankle strength wasn’t there. His stamina wasn’t there.

Eventually, we stopped.

But hockey never really went away.

A few years ago, he brought up the idea of being in the NHL. We talked about how it wasn’t something he could safely pursue. With his health challenges and the fact that he still has seizures, the risks of hockey make it unsafe.

We tried to name other ways hockey could still be part of his life. Other ways to love the game and stay close to it.

We watch hockey. He loves his Avalanche. We went to an NHL Finals game—his Avalanche versus my Tampa Bay Lightning. The Avalanche won 7–0 and went on to win the Stanley Cup.

Two facts my son reminds me of constantly.

A few weeks ago, he told me he’s been practicing hockey every day. Because that’s one of the things we always talk about when people eventually make it to the NHL—how much work they put in before anyone noticed.

He asked me whether he should be a player or a goalie.

He’s been wearing his Avalanche jersey again. Drawing players. Talking about teams. He understands that he might not get to choose which team signs him.

Now I have to talk to him again.

That’s the hard part. Not the safety. Not the medical reality. The sense that something meaningful may be slipping out of reach.

I ask myself whether I’m wrong for not letting him live in the fantasy of it. Whether I should just let it sit there, untouched.

But he’s sixteen. And I don’t want him chasing something that can’t hold him safely. I want him chasing something that asks a lot of him. Something that’s still hard. Something that still matters. But something that’s possible.

Working toward an NHL career isn’t something he can do safely. But there may be other ways for hockey to remain part of his life. Other paths that keep the game close.

I don’t need those paths to replace his dream. I just need them to exist.

This isn’t a conversation I can rush. Or solve. Or make painless. It’s something I have to sit with him in, and return to as he grows and changes.

I know I’m not the one who set these limits. I know where they come from.

All I can do is stay with him as he bumps up against them, and not look away.

A Place Where Awareness Ends

I was making lunch for my son and went into the pantry to grab the bag of cheese puffs. It was the big bag, the one we keep on the top shelf. He had some as a snack after school the day before.

The bag was wide open.

It was sitting exactly where it always sits, but unfolded, unsealed, left the way it was when he last touched it.

He knows to fold the bag over. We’ve talked about using a chip clip to keep it closed. I suspect he remembered that he needed one, looked for it, didn’t see it in the basket where they usually are—probably because something was in front of them—and stopped there. He’s not great at moving things out of the way to see if what he’s looking for is behind them. And instead of asking for help, he put the bag back on the shelf and walked away.

This happens a lot.

The cereal bag left open on the counter. A piece of recycling placed on top of the bin instead of inside it. A dish in the sink instead of the dishwasher. His lunchbox still holding an apple core or a wrapper from earlier that day.

It can feel like I’m following his tracks through the house, noticing the small places where things were almost finished. Little markers of effort that ran out just before the end.

I don’t get mad when I find the bag open again. I recognize it as a place where his awareness ended that day.

I offer gentle reminders. Sometimes they stick for a while. Sometimes they fade, and weeks later I find the cereal bag open again on the top shelf. Not because he doesn’t care. Not because he’s being careless. But because holding all the steps—seeing the problem, finding the tool, moving obstacles, finishing the task—can be more than his brain can manage in that moment.

This is what a lot of caregiving looks like.

Not emergencies. Not hospital rooms. Not big, dramatic moments. Just quiet maintenance. Picking up what was left behind. Closing the loops that didn’t quite get closed. Learning to read these small, unfinished things not as failures, but as information.

They tell me where his energy ran out. Where his attention drifted. Where the world became just a little too much to hold all at once.

So I fold the bag. I clip it shut. I rinse the lunchbox. I don’t sigh. I don’t lecture. I just keep walking behind him, filling in the gaps.

This is part of how I love him.

Not a Map, but Landmarks

I’ve spent a lot of time lately telling myself that I don’t have a map.

That’s been true, and in some ways, it’s been comforting. A map suggests routes and timelines and destinations. It suggests confidence. It suggests that someone knows how this is supposed to go.

I don’t.

But as the weeks pass, I’m realizing that even without a map, landmarks are coming into view.

There are dates on the calendar now. Not dramatic ones, and not ones I want to narrate in detail, but meaningful ones. Moments where things that have been suspended will start to settle. Where uncertainty will narrow, even if it doesn’t disappear.

I still don’t know how all of this will look when it’s finished. I don’t know the exact shape of my days or where everything will land. There are decisions I haven’t made yet, and some I won’t be able to make alone.

But there are things I do know.

I know I want custody. I know I want stability for my kids. I know that taking care of my family comes first, even when it’s hard and even when it’s expensive. I know that the debt and the mess left behind don’t get ignored just because they’re uncomfortable. They get faced, one step at a time.

I know that whatever comes next has to fit the reality I’m in now, not the life I imagined a few years ago. I’m not trying to rebuild an old version of things. I’m trying to build something that can actually hold.

Those aren’t plans. They’re not strategies. They don’t tell me how any of this will work.

They’re landmarks.

They’re fixed points I can orient toward when everything else feels vague. They tell me which direction matters, even if I don’t yet know the route. They help me decide what gets my energy and what doesn’t, what I’m willing to compromise on and what I’m not.

For a long time, I thought maps came first, and movement followed. Now I’m learning that sometimes it works the other way around. Sometimes you move carefully, paying attention, until enough of the landscape reveals itself enough to sketch something resembling a path.

I’m not there yet.

But I don’t feel lost in the same way I used to. I can see what I’m walking toward, even if I can’t see how to get there. That has been enough to keep me moving through the uncertainty without rushing past it.

Maybe the first map isn’t routes or timelines or answers.

Maybe it’s priorities.

For now, these landmarks are enough. They give me a way to stand inside what’s coming without pretending I’m ready for all of it. They remind me that not knowing the details doesn’t mean I’m directionless.

It just means I’m still on the way.