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.

This time I went back further. A week of footage, looking for a seizure count to bring to the appointment.

There were days I couldn’t find anything. I looked carefully and there was nothing obvious. That doesn’t mean he didn’t have them. His seizures are short. Sometimes he’s under the blanket and the camera can’t see him. Sometimes there’s a sound and sometimes there isn’t. The absence of evidence isn’t the evidence of absence, and I know that. I’ve known it for a long time.

But I noticed what I felt when I couldn’t find any. Something that wanted to be hope. Maybe the DBS is working better. Maybe the combination of medications and devices is finally doing more of what it’s supposed to do. I let myself feel that for a moment before remembering his last EEG was messy. What we see on the surface isn’t always the whole picture.

Then I found them. One each day for the last two days. Clear, unmistakable, the movement and the sound. I heard one this morning from my office before I even looked at the footage. I already knew it would be there.

I’m not pessimistic about his seizures. I’m realistic. I’ve learned the difference.

Then I kept watching. Further back, later at night, hours I don’t usually check.

He was up.

Not awake-because-of-seizures up. Just up. His Alexa has a screen, and he had figured out how to use it like a tablet. Nobody had thought to put controls on it. He had figured that out too. Moving around his room, doing whatever he does when the house is asleep and no one is watching. His own quiet life happening in the dark.

Sometimes I’ll find something on the printer in the morning. An artifact from wherever he went the night before. I’ll ask him about it and he won’t remember. Before, when I’d catch him up at night and ask him the next day, same answer. The nighttime version of him is a different person, moving through the house while the rest of us sleep, leaving things behind that he can’t account for in the morning.

It was funny at first. A teenager with a secret schedule, convinced no one knew. And then it wasn’t funny, because I started doing the math. This is why he’s exhausted in the morning. This is why he sleeps so late. He’s not lazy and he’s not being difficult. He’s been up half the night.

And then the quieter thing arrived. The shame that comes when you realize something was happening and you didn’t know. I should have checked sooner. I should have caught this earlier. Maybe if I had, we could have addressed it, and maybe he’d be getting to school at a reasonable hour instead of barely making it in.

I know that’s not entirely fair to myself. I check the footage every morning. I listen for sounds. I do the job. But there’s a part of caregiving that never quite accepts that you can’t see everything, and when you find a gap it feels like a failure even when it isn’t.

The neurology appointment is next week. I’ll bring the seizure count. I’ll mention the insomnia. We’ll see what they say.

A good appointment looks like this: keep doing what we’re doing. Maybe a DBS adjustment, maybe not. No medication changes. No new experiments.

We’ve been adjusting and experimenting and waiting for twelve years. Stability is its own kind of victory. Even when stability means he still has a seizure every morning and a tablet he wasn’t supposed to have at two in the morning.

That’s usually how it goes.