Author: Dave

By His Side

A noise stirred me from my sleep. Instinctively, I rolled to face the monitor. Even though it was on the dimmest setting, my eyes struggled to focus against the light of the screen. I closed one eye completely and squinted the other until I could make out the image. Then, another sound. That sound. The sound that still breaks the silence of the early morning. The sound that wakes me from my sleep and tells me that my son’s brain has lost control.

Some mornings, I watch the screen to see if my son can put himself back to sleep. But this morning, I could tell by the way the sound echoed through the halls that it was a bad seizure. I slid my body off the bed and felt the cold floor beneath my feet. Keeping one eye closed did little to help readjust to the darkness. I navigated my way through the kitchen on instinct until I reached his door. I felt for the handrail and made my way down the stairs. Halfway down, my eyes finally caught up to the rest of my body and I could make out the bottom of the stairs. I swung myself around the banister and landed at the foot of my son’s bed as he sat upright and started to cry.

I write a lot about these early morning hours. These are the hours when our unwelcome visitor makes its presence known. These are the hours of sounds, and seizures, and tears. Of scrambling down stairs and early morning comfort. The hours without sleep, when there is nothing to do but think about our lives…my son’s life.

I wonder if these trips to his room will ever end. I wonder if our house will ever be quiet again in the early morning, or if I will ever be able to let my guard down. I wonder if this is his life, destined to call out into the night for the rest of his days. I try not to think about who will answer that call when I am gone. On that night, I was there, like I was on countless other nights. I did answer the call, like I will for as long as I am able.

I crawled into bed with him and sat next to him. I rubbed his back and told him that he was okay, that everything was going to be okay. It didn’t feel like a lie when I said it, but it didn’t quite feel like the truth, either. After a few minutes, he started to calm down. I helped him lay back down and covered him with his favorite green blanket. He stuck his fingers in his mouth as he closed his eyes. I laid next to him until his breathing slowed and the sound of him sucking on his fingers faded to silence. Then I stayed a little longer, letting my own eyes grow heavy, and fell asleep by his side.

The Importance Of Scoring Goals

Coming out of the womb, all my son wanted to do was play hockey. He started skating before he was two, and we played floor hockey almost every day, even when he had a broken foot. When he was five, before we left Colorado, we signed him up for an “Intro To Hockey” class. Watching him step on to  the ice (and fall) for the first time in full hockey gear was one of my favorite moments. I remember him skating around during warmups as if he was preparing for an NHL game. His energy was electric. Every time he made eye contact with me, I saw the look on his face that, as his father, I’ve strived to replicate ever since.

The onset of his seizures changed our lives in many ways. Huge ways. Profound ways. But one of the hardest things for me to accept was taking away that look my son had when he was on the ice. When the seizures started, he would ask when he could get back to playing hockey. When he was at his worst, he stopped asking altogether. It was like taking air from him when he desperately needed to breathe. He needed to feel a connection to something to take away the fear and uncertainty. We couldn’t play floor hockey. We’d watch hockey on the television but I didn’t know if that was helping or hurting. They were pictures of a lost love that stayed just out of reach.

After a long recovery, but amidst continuing seizures, he picked up his hockey stick again. Our epic battles of floor hockey returned. He skated, but it was inconsistent and only as his endurance, balance, and ataxia would allow. We found a coach to work with him off the ice on hockey skills. It was good to see him back in the world that he loved, but those activities were only parts of the whole. As he was able to do more of these activities, he started asking about ice hockey again. Every time he did, I still didn’t have an answer. It broke my heart.

For two years, that question stabbed me every time he asked it. Finally, though, after grueling rehabilitation, we did something I thought was impossible. We signed him up for another hockey class. Granted, the first class didn’t go as planned. As I mentioned in a previous post, that first time back on the ice include a handful of seizures. But he stuck with it and he’s been going as much as his body and mind will allow. There were a few sessions he missed because he was too exhausted. But he kept going back, even when the drills were hard and as he struggled to control his body. He falls a lot, maybe not more than other kids, but every fall takes its toll more on him. Physically and emotionally, after practice he is spent, wasted and unraveled. But during class, he’s so, so happy.

Last week, they set up nets and let the kids move the puck from one and to the other and shoot. Unless you’re a goalie (or even if you are), scoring a goal represents one of the defining moments for a player. Watch a young player in the NHL score his first goal and you can see that lifetime of waiting finally end. I felt the same way watching my son push the puck across the ice and take a shot. It seemed like a lifetime had passed since that class in Colorado. But after he took a shot, and after the puck slowly crossed into the net, he made eye contact with me. I saw the look that I wondered if I would ever see again.

epilepsy dad hockey fatherhood

During the car ride home that night, we watched the videos I took of him on my phone. “Did you see me score a goal on the backhand?” he asked. “Of course, ” I replied and restarted the video. We watched it over and over. Every time, I was more grateful than the last.

Backhanded goal and celebration…

A post shared by David Monnerat (@davidmonnerat) on

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.