Tag: parenting

Opening Up About My Son’s Hidden Epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

If you saw my son on the playground, you might not notice anything wrong with him. He’d be running, playing, and laughing alongside the other children. Epilepsy is a “hidden disability”. It can remain invisible, hiding its nature until a seizure reveals the cruel truth. For my son, his seizures occur in the early morning hours outside the view of the rest of the world. While there are traces of other symptoms of his condition, they, too, often go unnoticed. As a result, we control whether to expose his condition to the people around us.

There are times when it is easy to know that we should disclose his condition. At school, he is on a 504 plan so his epilepsy is well documented, and he has special accommodations during the day. His aide and his teacher have both come to understand him and are able to better adapt to his needs. While many of his classmates can’t grasp what they cannot see, we are as honest with them as we can be. It’s hard to not notice the aide, the breaks and the absences. Ignoring the reason for them would confuse his young class more.

Sometimes disclosing his epilepsy is a matter of safety. Before we signed him up for hockey, we asked if they were comfortable with a student that had epilepsy. On the first day of practice, we talked to the coach to remind him. When my son had a seizure on the ice, the coach was prepared and we spoke with him afterward, as well. It would have been unfair and irresponsible to hide my son’s epilepsy, even if he hadn’t had that seizure. It also could have easily traumatized his coaches. It’s bad enough seeing a seizure when you know one is possible. It’s another thing to be caught off guard.

As his father, I worry what the stigma of epilepsy will do to my son. Classmates made him feel different because his ketogenic lunch was strange. They weren’t trying to be mean, but it caused my son to hide his lunch for weeks. As he gets older, the comments may not be as innocent. My wife and I work hard to give him a good foundation of strong values and a deep sense of self-worth. I don’t want him to feel shame because he has epilepsy. But he’s my little boy, and knowing that he’ll face challenges because of his condition is hard. The idea that he’ll be stigmatized by others because of it is unbearable. That alone makes me want to protect him and never tell anyone about his epilepsy.

So I hide his struggle (and ours) from those around us. I don’t talk about his condition or volunteer any information for fear of judgment or pity. To the parents from his school and his hockey class, he’s another normal kid. To the people passing on the street and the people that see him on the playground, he blends in with everyone else. Some days, those moments feel like a gift that I don’t want to let go of.

It’s tempting to take the same approach in every situation. But epilepsy is such a big part of his life that people won’t know the real him with that piece missing. They won’t know how hard he works to function on a bad seizure day or to navigate the fog caused by his medicine. They won’t know that he has different limitations and abilities. They’ll never understand him without that piece of the puzzle and I want him to be understood. He is worth understanding.

Is it better to feel like everyone else when you know that you aren’t? Or is it better to always feel different but to always be yourself? Should the answer I’d give for myself be the same that I’d give for my 7-year-old son? These are the questions that I found myself asking as I tried to wrap up this post for epilepsy awareness. I struggled for a long time trying to come up with a concise answer, but I couldn’t. Because there is no answer. There is just doing the best that I can with what I am capable of doing and with my son always first on my mind.

NEXT UP: Be sure to check out the next post tomorrow from Audra Sisak at www.hislifewithautism.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.

March 12, 2017
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.

March 7, 2017
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.

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 Feb 20, 2017 at 2:44pm PST

February 28, 2017
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.

February 21, 2017
Throwing It Back

We walked along the shore of Atlantic City. The beach was quiet with only a few other souls in view. The sun warmed the winter air to a comfortable temperature and cast stark shadows of the shells on the sand. The seagulls circled silently around us riding the current in the air. The waves rhythmically pushed themselves ashore. They darkened the sand to an almost black and erased the footprints that my son had left moments before.

That morning along the beach, my son took to launching enormous clam shells back into the sea. The inhabitants had been the unwilling dinner guests of another sea creature or one of those circling seagulls. Now, their empty shells laid scattered along the shore. I watched as my son scurried along the sand, finding the biggest ones, and brought them up to the water’s edge. The ocean had given up the shells to the land and now my son was sending them back.

Since my son was young, he has always liked to throw things in the water. He liked to see how far he can throw something against the limitless backdrop of the ocean. There were no walls to bounce off, no cars to avoid, only infinity against which to test his strength. After he hurled an object into the sky, he would track it through the air until it reached its destination. Would it skip or would it splash? Either was acceptable, as long as it was far. On the really good ones, he’d turn to me and ask if I saw how far it went. Of course I was watching, I told him, but he was already looking for his next projectile.

As I watched him throw shell after shell, I thought about the things I’d like to throw into the sea. I’d start by taking his seizures from him. Like a piece of paper, I’d crumble them up into a ball until they held their shape. I’d grip it like a fastball and wind up with enough torque that, when I let go, the seizures would disappear over the horizon. I’d do the same with his medicine and their side effects. His learning and attention issues would be the next to go, followed by his fatigue and ataxia. Over and over, I’d crush these afflictions into dense spheres and throw them with all my strength. Whether they skipped or splashed, I only want them far away from my son, somewhere at the bottom of the sea.

February 14, 2017