The Long Middle

The old version of me would still call this a crisis.

There was a time when this much responsibility, this much uncertainty, this many variables would have felt like an emergency. Therapy, time, and experience have changed that. I don’t react the same way anymore. I don’t spiral at every shift.

But that doesn’t mean it feels light.

Everything is on me now. Income. Care. Medications. Schedules. Appointments. If my son catches a cold, I already know what that usually means. Colds often mean more seizures. That’s just a fact. I can’t change it. I won’t panic when it happens. I won’t treat it like a catastrophe.

But I still have to carry it.

The structure of my day hasn’t changed much. That’s part of what makes this the middle. Morning follows night. Work follows the morning routine and school drop-off. Pickup follows work. Dinner follows pickup. Bedtime follows dinner. Then it starts again.

Each segment feels like a middle. The morning is between the night and the workday. The workday is between drop-off and pickup. The evening is between dinner and sleep. It’s like a loop that keeps folding back on itself. Nothing climactic. Nothing final. Just continuation.

The worst version of events hasn’t come to pass.

The things I used to brace for haven’t arrived.

But nothing has resolved either.

There are still things in motion. Still decisions that aren’t finished. Still outcomes I can’t control yet. I can see that an official “new life” is approaching, but even that feels like another middle. I’m not there yet. I’m here.

Here looks like waking up, working out, showering, making breakfast, and packing lunches. It looks like responding to seizures while my son sleeps in late, postictal. It looks like getting him ready for school, dropping him off, going to work, leaving early to pick him up, and finishing work at home. Walking the dogs. Chores. Hoping for a game of Fortnite together before dinner. Cleanup. Bedtime routine. Repeat.

It’s not dramatic. It’s not cinematic. It’s routine.

And maybe that’s what the long middle really is.

Not the beginning. Not the breakthrough. Not the clean ending. Just the steady stretch where responsibility becomes ordinary. Where weight doesn’t disappear, but it becomes familiar enough that you stop naming it every hour.

The house is quieter now. Less chaotic. There’s space where noise used to be. That space isn’t exactly peaceful, but it isn’t volatile either. It just is.

I don’t know what the future version of this life will look like. I know there are changes coming. I know certain realities are solidifying. But today is not about that.

Today is about the loop. About carrying what needs carrying. About not treating endurance like emergency.

The long middle isn’t dramatic.

It’s repetitive. It’s responsible. It’s unfinished.

And for now, it’s just the way it is.

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.