Windows, Light and Hope

The last few months have been all about change. After a long search, I found and started a new job. We sold the house that we lived in when my son was born back in Colorado. And next month, we’re leaving the apartment we landed in when we moved to Philadelphia.

This is the apartment we lived in when my son’s seizures and side effects were at their worst. The couch by the front window is where we held him for hours during his mood and behavior. I would sit on this couch and stare out the window at the street as he spat, and hit, and screamed terrible things. I would watch the people walk by, normal families with normal lives doing normal things. I wondered if that would ever be us again.

I felt like the world was watching us from the other side of that window, too. We were in full view of the passersby who could see how ill-equipped and unprepared we were for what was in front of us. They saw us sitting on the couch reacting out of fear and desperation. They saw every mistake my wife and I made dealing with our son and with each other.

The way our apartment is laid out, the window by the couch is the only source of natural light. In an otherwise dark apartment during a very dark time, there was no other place to go. So we sat in view of the world outside so that we could see it and let in whatever light we could. We traded agony and exposure for light.

But sitting on that couch and in that light also gave us hope. No matter how dark our apartment and our life got, we could see that there was more. As our son fought against us, we could close our eyes and feel the light on our face and hope.

After a seemingly endless struggle, hope won out. Our son came back to us. He was weathered, as we all were, and different, and stunted in some ways, but he was our boy. Instead of holding my son on that couch to protect him, he would sit next to me reading or playing on his tablet. Instead of me staring at the people walking by with envy or feeling judged by them, I felt like we could join them.

Eventually, we did join them. And now, we’re taking the next step in our journey. We’re not moving to a new place with a blank slate. Our son still has seizures. He still suffers from the side effects of his medicine and the damage that they and his seizures did. We’re bringing our scars with us. But we’re bringing his progress, too. We’re bringing the lessons we learned and the closeness we feel from having survived it. And we’re moving into a place that is full of windows, and light, and hope.

The Long Run

My son stood on top of the first obstacle at the start of the race. He had just given an interview and talked about having seizures that had the crowd let out a collective “aww”. In his hand, he held the blowhorn that would signal the start of our wave. The emcee counted down then helped him push the button on the horn. It called out with its loud sound and the crowd cheered in response. The race had begun.

By the time I had climbed the first obstacle to reach my son, he was already on to the next one. He thought he needed to lead our wave for the entire race, so I sprinted to reach him and told him to slow down. “It’s a long race, buddy,” I said. “This is only the beginning.”

That is how my son approaches most things…head on and at full speed. It’s inspiring to see but also nerve-wracking. He’ll push himself beyond his limits without considering the consequences. For him, the consequence of physical exhaustion is seizures. My wife and I take on the role of the governor to regulate his unstoppable, unrelenting engine. That puts us in the middle of his desire to conquer the world and our desire to keep him safe. It’s an impossible balance and one that I rarely feel successful at. But I tried my best to pace him but also let him open up a little and have fun.

He tackled each obstacle with a determined attitude and a beaming smile. There were people who saw his interview that ran by to cheer him on. He would wave in response as he eyed the next challenge. Another person came up and told him that she had epilepsy, too and that it wouldn’t stop either of them. I was proud of him, for how he was tackling the race, for talking about his epilepsy, and for that smile.

If there were ever a metaphor for our life, it was that race. There will be obstacles that we need to face. There will be times that we need to be brave. There will be times we need to lean on and be grateful for the support around us. But there will also be fun and the sense of accomplishment that comes from doing things that are hard.

As he came down the slide on the last obstacle, I could see a huge smile on his face. He put his completion medal around his neck and told everyone how he made it through each obstacle. Then, on the way home, he said he wasn’t feeling good. He went straight in for a nap and I could tell his body was shutting down. During his nap, he had a cluster of seizures, more than he has had in a while. That was the gut-wrenching part where I questioned whether I let him push himself too hard. I know that uncertain feeling too well, and it’s heartbreaking.

As his body contorted against his will, I wondered whether it was worth it. The sense of accomplishment, the fun, and the experience. Was it worth what was happening to him? The lives of the people he touched when bravely stood on top of the first obstacle and told his story. The awareness he brought to epilepsy. The support he received from the people around him. Was that worth it?

I used to think that was an impossible question, but maybe the answer is simple. What makes it worth or not it isn’t measured by finishes or medals or seizures. What makes it worth it is that feeling that, in spite of his epilepsy, he can do amazing things. What makes it worth it is knowing that we are in this together, for the good and the bad. What makes it all worth it, in the long run, is filling his life with moments that make him smile.

Bowling With Friends

Recently, we went to a friend’s kid’s birthday party at a bowling alley. Of course, I had to bowl, too. In the lane next to me was a boy named Brody. He had a tiny, wiry frame and thick, black glasses. When we went for the same ball, he spoke to me but I wasn’t sure what he said. I asked him to tell me again and he repeated himself but I still didn’t get it. His mother who was standing behind him came over and told me it was okay if I didn’t understand him. She helped him get his ball and guided him back to the bowling ramp.

The kid was a machine. He bowled ball after ball, sending one down the lane and then excitedly waiting for it to return up the chute. It was always the same pearl-colored ball, the same adjustment of the ramp, and the same smile.

When the pizza arrived and the other kids sat down to eat, Brody kept bowling. His mother would stick a piece of pizza in front of his face, he’d take a bite, then put his ball up on the ramp. It was like watching an endurance athlete compete with a trainer by his side giving him fuel.

At one point, Brody looked at me after I got one of my many, many (two) strikes and said “wow”. Then he said “fast”. I told him that it helped that I was bigger, but that I’ve watched him send some balls down pretty fast as well. He smiled and picked up another ball and sent it down the lane. “See?”, I said. “Fast.”

For the next hour, Brody and I bowled side by side. We cheered each other on and after almost every ball we’d share a one-liner. I’d say “So close!” “Great ball!” “You’ll get it next time!”. He’d tell me to throw the ball fast again and “wow!” if the pins made a lot of noise and bounced around in the pit.

At one point, Brody sent the ball straight down the middle of the lane. “That’s a good ball, buddy! Good ball!” I exclaimed. The ball pushed through all the pins leaving none standing. He looked at me with a look of such joy and I had the biggest smile on my face. Then he started dancing. Forget end zone celebrations from athletes that do them all the time. There is nothing like watching a kid who accomplished something own it with dance moves.

At the end of the party, I told Brody how much fun it was to bowl with him. He reached over, smiled, and tickled me. I smiled back and went to change my shoes. Brody picked up his ball and carried it to the ramp.

As I sat swapping one pair of stylish kicks for another, I noticed my wife talking to Brody’s mom. I didn’t think anything of it then. But as we headed out the door, Brody’s mom came over and gave me a big hug.

My wife told me after we left how much the way that I treated Brody had meant to his mom. She told my wife that my son saw I how I treated Brody, so he will learn to treat people the same way.

It broke my heart. All I did was treat Brody like the kid that he is, and that was enough to cause a reaction in his mother. Because, for whatever reason, the default from people is to not treat him that way.

It made me think about how people treat my son. Most of the time, he looks like a normal kid and his seizures happen inside our bubble at home. But there are differences that kids do notice and that they already question. Why does his lunch look different from ours? Why can’t he eat the birthday cake? Why does he have an aide to help him in school? Why does he leave early or why is he absent so much? Right now, these questions come from curiosity. But I’m afraid that the day is coming when those around him will turn those questions into ammunition. We have lost our tolerance for people and things that are different.

But the response should not be apologies and isolation. It should be inclusion and acceptance. I’m trying to show my son how to treat other people with kindness and respect so that he will do the same and expect the same in return.  I’m trying to raise a resilient kid that won’t let labels slung in fear or ignorance define him. I want him to understand that everyone has their stuff. But if we make an effort to get through that stuff, we can find a person worth knowing, just like he is worth knowing. And like Brody is worth knowing. And, sometimes, we get to make new friends and, if we’re lucky, we get to see the magic of a smile or a celebration dance. And, sometimes, that effort and that magic will affect the other people around us, too.