Month: February 2021

Tapped

My son does this thing where the muscles in his face loosen. His cheeks look chubbier as they drape softly down to his jaw. His mouth separates a little, and I can see the tip of his tongue pushing through. Sometimes he’ll swallow slowly, which at the same time seems automatic but also like it takes all of his concentration and energy.

That is one of the signs we see that lets us know when he is tapped.

There are other signs, too. He has an even harder time with his executive functioning and memory than he normally does. It’s more difficult for him to regulate his emotions. He gets angry and frustrated. But that look on his face is the look of someone who has given everything they can for the day. It’s how we know he’s done.

This isn’t something that only happens occasionally.

It happens every day.

There are days when it happens sooner, usually around this point of the school year or when we did such things after a baseball game. There are days when it happens later, like on a lazy weekend. And there are days when it happens more than once, usually once before and then later on after a nap. But it always happens. Every day. Every day, my son gives everything to get through the day.

Every day, my son gets tapped.

The other day, I sat on the edge of the bed with my son and studied his face as he leaned against his pillow, watching his iPad. I tried to be present with him. I asked him what it felt like and if there was anything I could do for him, but even asking a question forces him to try to muster enough energy to think and respond. He’s such a good kid that, even tapped, he tried to find enough energy to process my question and think of an answer. It felt cruel. I felt terrible. And so I didn’t ask any more questions, and I sat with him and rubbed his head and let him tune out.

Unless you knew him, you wouldn’t know that anything was going on. He might just look like a tired kid. Its invisible nature is one of the many curses of epilepsy. His doctors, who have seen the same in other patients as they see in my son, understand it. But it’s harder to convey to others because they don’t know him and because they don’t have a reference for that level of exhaustion.

“Imagine climbing a mountain. Now, imagine if everything you did felt like climbing a mountain. Now, imagine if that is what you felt like every day. “

Every day, my son climbs that mountain. Every night, he falls asleep only to find himself back at the base of the mountain when he wakes up. Then he starts to climb again. He pushes, he grinds, he stumbles, he gives everything he can until his body, and his brain can’t do anymore.

Every. Day.

He’s eleven years old.

The Long Plateau

We are standing on a plateau.

For the past few years, my son’s condition has remained the same. He still seizes almost every day. He’s still on a handful of medication multiple times a day and the ketogenic diet. He still struggles in school and navigating relationships with his peers.

I should be grateful that he hasn’t gotten worse.

The beginning of our journey with epilepsy was the equivalent to falling off a cliff. We went from a normal childhood to fighting for his life in the matter of months. We went from school and friends to hospitals and doctors and nurses and therapists. We went from playing hockey to being toxic on medication and needing to be carried to the bathroom. Back then, I would have longed for things to stay the same.

Once he was stabilized, we spent the next few years trying to rebuild what he’d lost. Progress was agonizingly slow, especially as we discovered more pieces of him that could not be rebuilt. We stumbled every time we pretended that things were ever going to be like they were before. While we were no longer falling, the slope of ascent was so gradual that it was hard to tell if anything was getting better.

Eventually, some things did get better. There were fewer seizures, confined mostly to the early morning. He graduated from a handful of therapies. He stepped foot in school again. Some things did get better, but not back to where he was before that first seizure. And not any further.

Are we really plateauing or does it just feel that way? Are we doing everything we can to keep making progress or, like a person trying to lose weight, are we giving the appearance of doing everything but secretly skipping workouts or sneaking in extra calories? Or have we truly reached our limit of progress?

Years ago, when the direction of my son’s condition turned around, every day probably felt this way. I wondered whether things were as good as they would get, much like I’m doing now. I wondered if we were doing everything we could and whether we we doing everything right. I looked for someone to blame rather than accepting the reality of the situation. Because it’s impossible to believe that, no matter what you do, things will never be what you though they were going to be.

The longer things stay the same, the more I forget how far we’ve come. The more that “this is it” feeling takes over. The longer I sit in that feeling, the harder it is to hold on to hope for better.

And this plateau feels so long.