Tag: seizures

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.

The Lost Year

This has been an extremely difficult year.

Not difficult in a single, dramatic way.

Difficult in the slow accumulation of loss.

The kind that doesn’t arrive all at once, but keeps showing up until you realize you’re standing in a year that no longer resembles the one you started in.

My father passed away this fall.

It was slow, and then it was fast. Months of watching a body fail, followed by an ending that still came as a shock. His world had grown smaller. His body no longer cooperated. His mind, at times, betrayed him. He was unhappy in ways that couldn’t be fixed.

His death brought grief. And guilt. And the familiar questions that arrive uninvited:

Should I have spent more time? Should I have been more patient? Should I have done something differently?

It also brought relief. And that’s harder to admit out loud. Relief that he wasn’t trapped in a body that no longer worked. Relief that the suffering had ended. Relief that the waiting was over.

I am grateful that we moved him closer. Grateful that my son got to know him. That he saw my son play baseball. That he showed interest in my son’s life, even as his own was narrowing. Those moments matter. They don’t cancel the loss, but they soften its edges.

Work added its own quiet weight this year.

For much of the year, I was in a role that wasn’t a good fit. The frustration built slowly, then all at once. Fear kept me there longer than I should have stayed. Responsibility did too. The job search dragged on, heavy with uncertainty. I eventually landed somewhere new, which brought some relief—but even that has continued to shift. The year ends without the sense of stability I hoped for.

My son still hasn’t seen the benefits we were hoping for from DBS. In fact, he’s having more seizures now than he was at the beginning of the year. When you’ve lived with uncertainty for this long, you’d think it would lose its power. It doesn’t. Each setback still lands hard.

My goddaughter’s health has changed as well, requiring more care, more attention, more presence. The needs don’t slow down just because you’re already stretched thin.

There have been other changes this year, too. Big ones. The kind that rearrange the shape of your life without asking permission. The kind that leave you trying to find your footing in a version of the future you didn’t expect to be standing in.

This year can’t end soon enough.

It feels like a year of subtraction. A year where things were taken faster than they could be replaced. A year where even gratitude felt heavy, like another thing I was supposed to hold carefully and do “right.”

And still, some things remain.

My son.

My goddaughter.

My dogs.

My health.

A few friends.

A job. Insurance. Shelter.

I don’t list these things to balance the scales. They don’t erase what was lost. They just exist alongside it.

I’ll carry them into the new year. I’ll keep showing up for the kids. I’ll keep working toward better outcomes where I can, and accepting limits where I can’t. I’ll keep looking for steadier ground.

This year feels like the floor.

Not the ceiling.

Next year isn’t about rebuilding what was lost. Some things can’t be rebuilt. Some things shouldn’t be.

Next year is about making something new.