Where Care Lodges, Sleep Will Never Lie

I walked from the living room to the kitchen, passing the door that led down to my son’s room. Out of the corner of my eye, I noticed a tuft of red hair sticking through the doorway. I stopped, tilted my head to the side, and saw an eye widen with the realization that the person it was attached to had just been caught.

This was the third time he was out of bed. He was restless and did not want to sleep alone. I slowly pulled open the door and asked him what he needed. “I was wondering,” he said, looking down at the floor, “if someone wanted to lay with me downstairs.” During the last few weeks, when his seizures were worse and when we were on the road, we often slept in the same bed. Now that we were home, we were transitioning back to our normal sleeping arrangements. This anxiety was an anticipated side effect. On the first night, he was so exhausted that he fell asleep in his own bed before he could plead his case for one my night in ours. On this second night, though, following a long afternoon nap, he was in a better position to resist.

“Come on, buddy,” I said as I led him back down in to his room. I climbed in to his bed and he followed, laying down next to me and putting his fingers in his mouth. By the light of his nightlight, I could see him adjust his body in to its ready-to-sleep position, and the tell-tale sign of impending sleep where he picks gently at his upper lip soon followed. His breath began to lengthen and, after only a few minutes, he was asleep.

On the nights that followed, we brought him back up to our room because his morning seizures had once again gotten worse and it was easier on all of us to be in the same room when they happened. No late night trips down the stairs and fumbling through the dark to find him sitting up in his bed; instead, we were next to him to reassure him and coax him back to sleep.

This has been the pattern of our lives for the past two years. When we think we are getting a handle on his seizures, we transition him back to his room. When he is in his bed, I vigilantly watch the monitor throughout the night and listen for any signs our most unwelcome intruder. When his seizures inevitably get worse again, we bring him back in to our room and spend the night uncomfortably cramped in a small bed, waiting for the sounds and uncontrollable movements that accompany the attack on my son’s brain.

If I seem tired, it’s because I am.  Sleep is sporadic and short and only serves to keep me functional the next day. Some days, it’s barely enough to keep the lights on, but I find a way. Because most of us that are living this life don’t have the luxury or desire to stop because if we do…what we miss could be everything.  So we stay on watch, careful and committed, for as long as we are needed.

This is what it is like to be the parent of a child with uncontrolled seizures.

Care keeps his watch in every old man’s eye,
And where care lodges, sleep will never lie.
― William Shakespeare, Romeo and Juliet

Owning My Duality And Being Seen

“Well,” I said, “twenty minutes before I got here, I watched my son have a seizure on the living room floor.”

The room fell silent.

What had started as a casual conversation about our personal lives and what we allow to escape turned in to an honest conversation about what it means to really know another person, and I dropped a bombshell.

I felt the emotion in my voice as the statement left my mouth. The quivering that comes from keeping my despair in check. I thought of the other seizures he had that day, and the one he had at 3AM as I walked in to his room. He was on the floor, changing his pajamas because he had an accident from an earlier seizure when another one hit him. As I reached him, his slurred words told me he had another bad seizure, and he cried.

I didn’t bring that up, though, so in the grand scheme of things, it was only a little bombshell. But it was enough. Maybe too much.

I rarely talk about those details. While friends, families, and coworkers occasionally ask how my son is doing, those glimpses can’t tell the full story. His condition is central to our experience, but the details of what we go through every day rarely cross the invisible boundary between our world and the one outside our walls. When I step out my door, I leave that struggle at the threshold and become the person that I need to be to fit the situation that I am entering.

There is a wonderful Ted talk by Ash Beckham where she talks about owning our duality. We should not be polarizing in our views…we shouldn’t have to choose between this or that. Instead, we can be both. Ash didn’t have to choose between being an aunt and an advocate, she could be both. She could hold those two things at the same time. Through compassion, empathy, and human interaction, as complex individuals, we are capable of holding so much more. She goes on to say that if people don’t see those things we hold or those things that we are, then they can’t truly see us.

I went back to that video as I was writing this post. I thought about how I don’t connect deeply with many people, and I wondered how much of that was because I don’t let those pieces of myself come out. I’m expecting to somehow build meaningful relationships without sharing those things that are most important in my life. If people aren’t given the opportunity to see how deeply I am affected by what is happening to my son, then how can I expect them to see me?

I need to own my duality. I need to be able to hold many things. And I need to be able to share those things with the people around me if I ever hope to build the types of relationships that are built on compassion, and empathy, and on truly being seen.

It’s not an easy task. It’s not easy to change the years of programming and overcome the societal expectations of men that left me closed and guarded and hidden. But it’s important. Maybe one of the most important things I can do for myself, and certainly an important example that I can set for my son so that he doesn’t go through his complicated and difficult life alone. He, too, will be many things at once, and I would like for him to be able to be those things at the same time, and to be seen for the brave, resilient, complex, and special individual that he is.


Playing Teeball Again For The First Time

Last year, we signed our son up for teeball. He was only out of the hospital for a few months and was still having seizures and suffering from severe ataxia and behavioral issues from the seizures and medicine, but we wanted to give him a bit of “normal”.

There were times when he would be in the field, in the “ready position”, wobbly and shaking from the ataxia, and he would have a seizure…the audible cue, his body glove slumping down and his body sagging. These seizures were short, he would spring right back up, back in position and waiting for the ball. If we tried to get him to leave, he would say no so we would monitor him and he was usually able to finish the game.

When the game was over, though, he would be so exhausted, and the exhaustion was sometimes followed by episodes of his extreme, angry behavior. We’d put him in the stroller to take him home, and he would be saying mean, hurtful things, or spitting, or hitting. We’d get him in to the house and hold him until the storm passed and he was able to calm down and take a nap.

There were good moments, too. Towards the end of the season, the coaches used a pitching machine instead the tee. Most of the kids would go up and strike out since it was obviously their first time trying to hit a moving target. But I’ve been pitching to my son for years…the tee we had was too big so we just pitched it to him and he would hit it. So he would step up to the plate, ataxic and off-balance, like a drunk stumbling down the street. He would go through the motions to get his feet set, his hands around the bat that he would lift up to his shoulder, and sway back and forth waiting for the pitch to come. When it did, his soft, fluid motion would bring the bat in perfect contact with the ball and he would crush it, and the look on his face made every other thought disappear.

It was a balancing act…trying to give him an opportunity to do something fun with other kids but managing his seizures and minimizing the behavioral issues. There was no right answer. I felt like I was a terrible parent for putting him in the situation, and I felt equally terrible on those days where we’d skip the games and he would sit inside, isolated, lonely, and just as angry and having just as many seizures.

We’ve come a long way in the last year. My son is again playing teeball. His ataxia is better but still visible, but his behavior is much more under control. He’s cheering on the other batters and saying “Batter up!” and “Good job!” as the other team crossed the plate. There have not been any on-field seizures and, after our last game, he played at the park with his friends because we didn’t need to rush home because of seizures or to brace for the oncoming fatigue-induced anger.

teeball epilepsy ataxia

My son doesn’t remember much about his first year of teeball, one of many holes that was caused by the seizures and the medicine. There are times when I wish I could forget last year, as well. But even though he doesn’t remember, I saw moments of joy and a sense of accomplishment as he hit the ball or ran to a base, and those are the memories that I choose to think of when I look back. If any memories from that time do come back to him, I hope that is what he remembers, too.

But if he never remembers last year, and if he only remembers his experiences this year, I’m grateful that we have this opportunity for him to play teeball again…for the first time.