Category: lifestyle

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.

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.