The World Outside

I’m lying in bed next to my son who I haven’t seen all week. With my right hand on my laptop, I reach my left hand over and rest it on his back, making sure he is still there. I can feel his breathing, my hand rising and falling with each of his breaths.

On the other side of him is my wife, who I was also missing. The last few weeks have been a whirlwind. A new job. A new house. A new school year for my son. A new medication for his seizures. A new outlook. A new focus.

With so many changes going on, I’d been so consumed with my life that I hadn’t looked up to see the world outside. When I finally did, I wished I hadn’t. The world kept turning. Things kept happening. Hurricanes, mass shootings, fear, and hatred. Human beings being cruel to each other and using their power to silence their victims. It seemed that the world had been uglier than usual in the time that I’ve been away. I felt both selfish and grateful to be away from it. To not experience it. To not get involved. To focus on my life and to shut out the world.

But that couldn’t last. The world seeped in, overflowing an already stressed situation. The combined strain tested the strength of that connection to my anchor. Our stressful lives during a chaotic time in an especially cruel world. Survival became about pursuing the path of least resistance. It was easier to hide from the world than it was to be a part of it. It was easier to not write than it was to write. It was easier to use the excuse of being too busy in life to avoid being a real part of it.

I pushed myself away from the world but I had nowhere to go. My family is my anchor, and I was thousands of miles away in every meaning of that phrase. A cross-country trip that followed added physical distance to the emotional. But on the plane ride back, I could feel the weight of the last few weeks lifting. The world in conflict sped below me as I looked out the window from a familiar, distant perspective. But it wasn’t the world I was eager to get back to. It was my family that was pulling me back, and I couldn’t get to them fast enough.

And so here I am, restlessly lying in bed next to my family in our new home. My obligations to our new life and the workday ahead steal my focus. But my son’s breath serves as a metronome that brings my attention back to this room. The cadence of his breathing and the rising and falling of my hand on his chest connect me to him. I find my wife’s hand in the same place, so we’re all connected together once again. The world outside and my insecurity conspire to keep the attention of my head and my heart. In this moment, though, I know that it will be my family that gets me through.

Moving To Australia

Before my son was born, my wife and I talked about moving to Australia. It wasn’t because we were having a terrible, horrible, no good, very bad day. It was because we had been there on our honeymoon and we loved the experience. The idea of packing up and living on the other side of the world seemed like an amazing adventure.

In a way, it’s the same reason we moved to Philadelphia. While it wasn’t on the other side of the world, it might as well have been. Moving from the suburbs to the city. From the Colorado laid-back mentality to the always-moving city. The people and culture are as different as if we had moved to another planet.

At the time, the logistics of moving were easier. I already had a job, so we only needed to pack and find a place to live. Everything else we could figure out as we got more familiar with our surroundings. But we landed in Philadelphia right before my son’s seizures started. After that, the idea of moving became a lot more complicated.

It’s no longer a simple matter of packing up and finding a place to live. “Everywhere” is no longer the list of possible destinations. Our mindset needed to shift from aspirational to practical. The nature and complexity of my son’s condition mandated more specific requirements.

We would have to research the hospitals in the area to get a feel for their ability to support my son. How good is the medical care? Do they have the testing equipment on site, like a video EEG, or would we have to travel to another hospital? How easy is it to get in to see our neurologist?

We also have to do more research on the schools. In the past, we would have asked about class sizes and the quality of the education. Now, we would need to ask more targeted questions. Can they accommodate my son’s special needs? Can he get a one-on-one aide? Is the nurse familiar with seizures and epilepsy? Will the integrate him or isolate him?

Many of the answers to these questions would remove cities from our list of potential new homes. And there are many more questions to ask, each one shortening the list.

In many ways, epilepsy has taken away choices. Where we can live is one area, but there are so many. It also forces restrictions on what job I can take, what activities my son can do, even what he can eat. I assumed that we could build our lives by picking pieces from an unlimited list of options. But instead of the full buffet, we’re limited to the salad bar.

It would be easy to be resentful. It would be easy to see these limitations that epilepsy has imposed on us make and feel like victims. It would be easy to see only loss. Loss of freedom. Loss of choice. Loss of potential. But being where we’ve been, I’m grateful for where we are. I don’t resent what we don’t have or where we can’t go because I know how special what we do have is.

I still like the idea of an adventure. I still think about moving to Australia. Maybe some day, if we can get my son’s epilepsy under control, we’ll be able to move to have that adventure. Until then, we are exactly where we need to be. The dream of living in another part of the world might seem far away. But the reality is that our journey so far has brought us closer together.

Talking To My Son About Epilepsy

Imagine we are sitting at a table across from each other. I’m trying to teach you a complicated concept. Except I don’t understand the concept, either. And I’m also trying to teach it to you in another language. Except neither of us speaks that language. And the room we are in is pitch black.

That is what it is like to talk to my son about epilepsy. It’s a topic that I didn’t have a reference for until it entered our lives. I’m learning what it means to be the parent of a child with a disability, but not what it means to have epilepsy. My son has a different perspective. He knows what it feels like to have epilepsy, but he doesn’t have the words to always share what he is going through. He doesn’t remember his life before seizures enough to describe the difference. So we fumble as we try to connect and create a shared experience.

Occasionally, I’ll be able to pull something out of my growing knowledge bank to share with him. A few weeks ago, we strolled through Caesar’s Casino in Atlantic City. We passed a statue of Julius Caesar and I mentioned that he ruled the Roman Republic. I also mentioned that he had epilepsy. “He had epilepsy and he ruled the world, ” I said, “so you can do anything that you want to do.” I skipped the part about Julius possibly suffering from migraines and not seizures. The opportunity for bonding was more important than proven historical accuracy.

There are flashes of a connection, but not enough of one. Epilepsy and seizures will affect him for the rest of his life. History lessons might be inspirational, but they don’t explain what he is feeling and why. They won’t build his epilepsy vocabulary. They might keep him hopeful, but they can’t predict what it will be like for him in the future. Nothing can.

As a father, it makes me feel helpless. It’s my job to protect him. It’s my job to teach him the ways of the world. I think that if I do more research, if I learn more facts, that I’ll somehow be able to forge a path for him. If I can’t make him better, I at least want to make his life easier. But without knowing what he is going through, I’m never sure I’m doing the right thing. What I can do, and what helps me balance my frustration, is loving him and making him feel secure.

Sometimes, there is light in the room. I’m able to see how brave he has become when he tries something new, talks to people, or jumps fifteen feet into a ball pit. I see how hard he works to do basic tasks and how much harder he has to work to do the things he likes doing. There is enough light to see that our family is around the table, trying to connect with each other. We’re still not speaking the same language, but there is enough light to see that we’re in this together.