I came across a post on Instagram recently. It said something like: no one talks about the grief of giving medications to a child who can’t tell you how they feel.
I’ve been thinking about that. Not for the first time.
(more…)Tag: seizures
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What the Camera Finds
The neurology appointment is coming up, so I went back through the footage.
This is part of the routine. We have a camera in his room as part of how we monitor his seizures at night and into the morning. I check it most days, usually just the early hours, scanning for the telltale movement and sound that tells me what kind of morning we’re starting. I know what I’m looking for. After twelve years I can spot it quickly.
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Nothing, Again
A few years ago, we did genetic testing for the first time. An exome sequencing — not the full genome, but a significant portion of it. They found a variation in the PRICKLE1 gene, which is associated with epilepsy. It looked like it might be something.
It wasn’t.
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A Step Back From the Edge
I used to feel like I was already over the edge.
Not standing near it. Not testing it. Over it.
There were stretches where it felt like I was constantly catching myself mid-fall. Managing medications. Managing schedules. Managing finances. And at the same time, bracing for volatility. Wondering what I was walking into at the end of the day — whether it would be a call from school, a number on a bill, or a silence that meant something had already shifted.
It wasn’t dramatic in the moment. It was just normal. That’s what makes it harder to recognize in hindsight. I was in freefall and calling it responsibility.
My son still had seizures. My goddaughter still struggled. Work still pressed. But layered over all of it was instability. The kind that keeps your nervous system activated even when nothing specific is happening. The kind that makes you feel like collapse is always a few inches away.
I hate heights.
If I look over the side of a building, my body reacts before my mind does. There’s a queasy suspension. A sense that gravity is closer than it should be. That feeling used to live in my chest most days. Not because catastrophe was constant, but because it was always possible.
The edge is still there.
My son still has seizures. A cold still increases risk. My goddaughter is still medically fragile. Work is still work. The debt is still heavy.
But I’m not over it anymore.
I’m a step or two back.
I can see the drop. I don’t like it. I don’t pretend it isn’t there. But I’m standing on solid ground. The weight I’m carrying feels steadier. It doesn’t swing the way it used to.
That’s the difference.
The risk hasn’t vanished. The responsibility hasn’t lessened. The uncertainty hasn’t resolved.
What’s changed is the footing.
I’m not bracing for the next shove. I’m not scanning every moment for signs of collapse. I’m not ending each day with the sense that I barely made it through.
I’m standing.
Close enough to respect the edge. Far enough back to move deliberately.
The edge isn’t gone.
But I’m not falling anymore.
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No Extra
There’s no extra right now.
Not extra money. Not extra time. Not extra energy. The margins are narrow. The system runs because it has to.
Sunday mornings are for medication.
I make coffee. I put on a podcast or an audiobook. I stand at the kitchen island and start with mine. A few supplements come out first so they can go into my son’s pills later. Mine go straight into the organizer. His get laid out on a paper towel, seven days in a row, then transferred into the plastic containers. When they’re finished, Sunday goes on top.
I take my pills. I set both containers on top of the coffee machine for when he wakes up. The dogs are usually on the couch, half-watching. They know the routine.
Every morning I swap the containers. I take mine. I put them back. It’s mechanical. Quiet. Just part of the structure.
Everything goes in the calendar now. Appointments. School events. Guitar lessons. Therapy. Tennis. If it isn’t there, it doesn’t exist. The to-do list is long, but it turns over. Things come off. New things go on. Nothing flashy, but nothing slipping.
The house is tidy. The clothes are clean. The dogs get walked, even when it’s freezing. They get groomed. My son and I get haircuts regularly. It might look like a small luxury from the outside, but it feels more like maintenance. A way of saying we’re still taking care of what’s ours.
There’s no extra, but there’s enough.
We’re not adding new things. Guitar and tennis stay for now, but they’re the first to go if something else demands attention. I don’t feel deprived. What we have feels deliberate. Contained.
The debt is heavy. The future has large shapes in it. I want clarity. I want the numbers to go down. I want more margin. But the day-to-day isn’t falling apart.
That’s new.
Control feels quiet. It isn’t about power. It’s about not bracing. It’s about knowing that if something goes wrong, it’s a problem to solve.
I’ve been doing this job longer than the title suggests. Now there’s no one else to absorb it. Income. Meds. Schedules. Appointments. A cold this weekend. Likely more seizures. That’s just the math. I’ll adjust. I’ll keep going.
The system holds.
It isn’t elegant. It isn’t abundant. But it’s ordered. Maintained.
There’s no extra right now.
There’s what must get done. There’s what keeps us steady.
For now, that’s enough.