Category: seizures

Keeping The Door Open

If you believed the headlines, you might have thought that CBD was a miracle cure for epilepsy. After so many drugs failed to control my son’s seizures or burdened him with terrible side effects, I felt like we needed that miracle. But, in the end, CBD, like many other medicines, did not help to control his seizures.

This post isn’t about CBD. It isn’t about Keppra. It isn’t about dilantin, or topamax, or vimpat, or triliptol, or tegratol. It isn’t about any of them in particular but, in a way, it is about all of them. It’s about feeling like a door closes a bit more every time we stop another medication. There is still light on the other side because I can see it splashing through the opening onto the floor. But the beam is getting narrower. And no matter how I angle my head, I can’t actually see the source of the light. I have to trust that it is there.

I’m frustrated that another thing that has worked for others didn’t work for us. I hoped it would live up to the hype and that we would be one of the success stories. I want desperately for something to work for my son. As hopeful as I am that he will wake up one day seizure-free, I’m not greedy. I’d settle for a magic pill that would allow us to stop his other medication and free him from their side effects. A pill that would let him stop the ketogenic diet so that he could have a slice of pizza or a piece of candy.

The side effects. The ataxia. The attention. The unbalance. The learning difficulties. The feeling of being different. The loss of control of his mind and body. The lack of freedom. An uncertain future. I want that magic pill to take away these things, too.

But there is no magic pill. As every parent of a child with epilepsy knows, some things work for some people but not for others. We happen to be in the unlucky camp of people for whom most things don’t work at all.

The door hasn’t closed, though. I won’t let it. I jammed my foot between the door and the frame so that it can’t close. I’ve got one hand gripped on to the handle and the other with a firm grasp on the door, and I’m pulling as hard as I can.

I won’t let that door close.

There is too much at stake. When there is light, there is hope, and there is so much to be hopeful for.

I won’t let that door close.

If I have to, I’ll rip it right off its hinges.

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.

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.