epilepsy dad

Category: lifestyle

  • Moving To Australia

    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.

  • Balancing Out The Hard Stuff

    Balancing Out The Hard Stuff

    I followed my son as he ran on to the field at the football stadium. He sprinted down the same tunnel as the players, past the same motivational signs, and on to the same grass. Underneath his coat he wore the team jersey but with their dark green helmet clearly visible on his head. We stood on the field and looked at the 60,000 seats from the same perspective that the players do. The experience was very, very cool.

    I was grateful to be standing on the grass with him. I smiled as I watched his face wear a combination of amazement and excitement. This wasn’t an experience that many people get, but it was one of many that my son has had. When he was in the hospital, he met athletes and superheroes. He attended movie premieres and dance recitals in the lobby. He won bingo and has appeared on the hospital’s closed-circuit TV. He was in a fashion show and a music video.

    Thinking back on those experiences, I wonder how many of them we would have had if my son hadn’t had epilepsy. Not because they were at the hospital, but because I wouldn’t have taken advantage of them. Or I would have let my wife take him by herself because I wouldn’t have known how special those moments were. I would have missed how brave he was raising his hand to ask the ultimate frisbee team a question. I would have missed how special he felt seeing a movie before any of his friends. I would have missed the look on my son’s face standing on that field. I would have taken those opportunities for granted and missed out on them completely.

    As grateful as I am for those opportunities, I struggle with the unfairness of it all. Why my sweet, innocent child was burdened with such an unfair, unrelenting condition. Why he walks around in a fog of medication. Why he has difficulty processing and why he is always exhausted. Most days, the scale seems very much tipped against him.

    And yet, these moments make him smile. They let him be a normal kid. They also make him feel special. They’re a gift from the universe trying to balance out the hard stuff that my son goes through every day. They are also to teach me to appreciate the opportunities and to be present during them with my son.

    I don’t know if the scale will ever be even. As his father, nothing can undo the memories of how bad things got for my son. But the part about being present? I’m grateful for the lesson.

  • By His Side

    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

    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

  • The Appearance Of Being Strong

    The Appearance Of Being Strong

    We’re more than two and a half years into our journey. For a third of my son’s life, he’s lived with seizures. It’s getting harder to remember the time before them. The carefree days before hospitals and therapies seems more like someone else’s life.
     
    Our new life doesn’t feel like it is getting any easier, even being so far into it. There is no resolution. There are no reasons. There is no consistency except for the looming threat of another seizure. It is chaotic to manage his diet, his medicine, and his appointments. There is a never ending stream of complexities in our lives. On the good days, it feels like we’re barely treading water. On the bad days, it feels like we’re drowning.
     
    We’ve met a lot of families that have been dealing with seizures much longer than we have. I look at them as if they are the strongest people in the world, dealing admirably with such an impossible path. They somehow figured out how to manage the unmanageable. Their perspective keeps them sane and grounded and able to function in such a complex system. I’ve often wondered if we would find that place, and if someone on the outside would think the same thing about us.
     
    I keep waiting for a switch to flip, for that “a ha” moment where the mystery of how to navigate this life is explained. So far, it hasn’t happened and it’s frustrating. I’m a smart guy. I figured out how to ride a bike, drive a car, program a computer and build a robot. But there is no pattern in what is happening. There’s nothing for my mind to organize around and to sort out. We are in a constant state of reaction with very little that we can control.
     
    The lack of control and my inability to figure it out makes me feel like we’re not there yet. People around us use words like “strong”” and “brave” but I can’t let that in because I don’t believe it. Every seizure, every outburst, every failed medicine, every closed off path, every false hope. As much as I try to hide their impact from the outside world, it feels as if I wear them as visibly as I wear clothes. I’m only forcing myself to do what I need to do for my son and my family.
     
    But, maybe, that’s what everyone else does, too.