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.


It’s Hard To Come Home

After three weeks of traveling, we headed back to Philadelphia. My son laid with his blankets against the window and we watched Colorado disappear in to the distance. The cars and the people were the first to fade, including the friends and family that we left two years ago when we moved east. The roads and the buildings were next to go as we climbed higher. Finally, the mountains were gone beyond the horizon as we straddled the line between the life that we had and the one we are trying to build in our new home.

epilepsy dad going home

It was good to be in Colorado. It was good for my son to be there, surrounded by people who love him. Surrounded by some of the only friends he has. Even though we’ve lived in Philadelphia for two years, for most of that time, he was sick and wasn’t able to make many strong bonds. Colorado, for him, still represents his universe, where everything is except for us. Philadelphia has only a smattering of significance, with a few friends but where most of his connections have come through the hospital or his condition.

It was good for me to be in Colorado, too. It was good to see my family happy. It was good for me to be able to talk face-to-face with friends that knows us from before and after the move and from before and after the seizures came. I move around a lot, and I don’t tend to keep people in my life that span the transition. It’s hard for me to maintain the connection, even though technology has in many ways made it easier. So those connections usually fade, just like the landscape passing by the airplane window.

But leaving Colorado was different. Those connections that we made there were stronger than I have ever had before. The life that we had there carries more weight than the life here that we have still yet to build. In many ways, Colorado still feels like home, but I force myself to respond with “Philadelphia” when I’m asked where home is, as if I’m trying to train my brain to actually believe it.

That makes it hard to come back. To leave a place where my son wore a constant smile. Where the faces of the people who looked at my son were those that love him and accept him and that weren’t only doctors or nurses or therapists. Where we were graced by a few seizure-free days. Where, when we lived there, anything was still possible.

I looked out the window from 35,000 feet. The landscape was a wash of browns and blues and greens. There wasn’t anything to identify where we were, and I felt the pull from both the east and the west. Between the future and the past. Between possibility and acceptance. These two places that were my homes…that are my homes…that mean completely different things.

As the plane hung in the air between those two places, I thought how hard it was to come home.

Especially when you don’t really know where home is.