Epilepsy Dad

Five Seconds

They come in the early morning. Just as the sky is starting to lighten but hours before any of us want to be awake, these unwelcome visitors start as a misfiring in my son’s brain before traveling through his body and entering our world.

His seizures come like rolling waves. The first wave is long and drawn-out. It serves as the siren, alerting us . His body stiffens, his lungs slowly expel their content in a low, distinct moan. I wake up, roll over, put my hand on his chest, and tell him that it’s going to be okay.

One-one thousand.

A series of shorter waves come next. His body loosens slightly, then tenses again with a grunt. The cadence of the waves becomes steady beneath my hand.

Two-one thousand.

I sit up, rubbing the sleep from my eyes. They adjust to the dark and I can see my son’s body convulse. His eyes flutter, matching the timing of the repeating pattern of his body.

Three-one thousand

My perception of time goes awry. A few seconds have passed, but the agony that I feel acts as a multiplier and those seconds feel like forever. I have time to wonder whether these seizures will end soon or whether they will keep their tormenting hold on my little boy. There are no signs, no clues to help me predict the size of the storm. The only thing to do is to wait and to keep counting.

Four-one thousand.

The waves elongate slightly and are less intense, which gratefully means the end is near. I start to rub my son’s chest again and reassure him. I want my voice to be the first thing he hears. I want to give him a safe place to return.

Five-one thousand.

The seizures release their grasp on my son and his lungs fill violently with air as he desperately inhales. He sits up in bed, trying to get his bearings. He’s teetering between sleep and the unwanted awakening that his firing neurons have forced upon him.

I continue to watch him as the waves dissipate. Sometimes he simply turns over and falls back asleep. I like those times the best because its like he rides the waves of seizures safely back to shore. Other times, the waves crash his tiny frame in to the rocks. He cries and it breaks my heart even more.

Reality Always Wins

It’s easy to let denial take the lead. If we make it a day or a week without any seizures, it’s easy to let what is happening to my son fall to the back of my mind. There are moments when I let myself believe that we made it through it, that we figured it out and that the seizures are gone. Even if it’s just for a moment or an hour or a morning, I welcome the ignorant bliss that denial carries with it and pretend that this is not happening to my son.

The problem with denial, though, is that it doesn’t last forever.

Even without seizures, there are daily reminders that destroy the illusion. There are the pills that fill his tiny hands each morning and night that try to keep the seizures at bay. There is the diet that wreaks havoc on his body and takes away his freedom to enjoy the terribly delicious food that other kids take for granted. There are the behavior and attention issues that come with his condition and the side effects of his medication. There are the days when his balance is off, and when he falls a lot…a glance at his constantly bruised shins serve as his battle scars.

It’s hard to be in denial when you’re confronted with the effects of epilepsy and seizures every day. Ignoring these effects or simply wishing that things were different isn’t enough to keep reality from bleeding in to the fantasy. No matter how hard I try to keep it afloat, this denial bubble always bursts and sends me crashing back to earth. My shins are bruised, too, from bending over to pick him up off the ground. My heart is bruised from watching this happen to my sweet, innocent, and special boy.

The problem with denial is that it doesn’t last forever.

Reality always wins.

The problem with denial is that it doesn’t last forever. Reality always wins.

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Why Graduating Kindergarten Is A Big Deal

Last week, my son finished kindergarten.

A few years ago, I would have let that moment slip by. Honestly, moving on to first grade is pretty automatic and it would have been a normal right-of-passage, like losing a tooth. My wife would have handled the celebration, and I would have smiled and congratulated him while making snarky comments like “it’s just kindergarten” to my wife as she unsuccessfully tried to show me that every moment is important.

When that day finally came, I didn’t need my wife’s convincing. When I walked in the door after work, he ran to me and told me in a big, proud voice, “I finished kindergarten! I’m in first grade now!”. My eyes welled up with tears as I knelt to hug him and told him how proud I was of him for working so hard. “You did it, buddy”, I told him over and over as he squeezed his hug tighter and tighter.

He looked proud of himself, too. Rightfully so. He missed most of preschool due to seizures, side effects, and hospital stays. In the weeks leading up to the start of kindergarten, we weren’t even sure he would be able to go at all. His seizures were still not under control, we were still adjusting medicines, he was still adjusting to the ketogenic diet, and his behavior and attention issues were at their height. Dropping him in to a public school kindergarten with 28 other kids seemed like a terrible idea and one that could do more harm than good.

But we scrambled to get him registered, and to see what services would be available to help him. Technically, none, we learned. I felt like his epilepsy and related complications had come at an inconvenient time, too late for us to get him established as a special needs student and, therefore, not eligible for assistance. I remember thinking “Well, I’d prefer for him to not have epilepsy at all, but I’m sorry that he didn’t get out of the hospital sooner so we could fill out the paperwork.”

It was an unbelievably frustrating process, but we did get him registered and, although the special needs paperwork wasn’t completed, the principal assigned a school resource to act as an aide to my son for the few hours a day that he was physically capable of being there. Until the aide started, my wife was allowed to sit in the classroom with my son, so we had a plan for him to start kindergarten on the first day of school, although with a later start time to allow him to have enough rest to make it through the morning.

As a sign of things to come, on the first day of school, my son woke up early, dressed, at breakfast, and walked to school to start at the same time as his classmates. Of course, he had a seizure getting ready, but he didn’t let that stop him and he found the strength to push through.

He did that all year long.

When his body or mind was fatigued, when he couldn’t find words, or string together a simple sequence of events. When he couldn’t focus on a single task, or stop his body from shaking, or keep his anger and emotions under control. When he felt embarrassed about his special diet and watched the other kids eat whatever they wanted. When he missed chunks of time for therapy, or hospital visits. When he’d go home, exhausted, and sleep for hours, and then wake up and finish his homework and read and just try to keep up. Through all of that, my son woke up, almost every day, ready to put himself through it again.

My son had to work really hard to get to that day, and it was a really, really big deal.

I couldn’t be more proud.