Epilepsy Dad - Navigating the unpredictable world of a child with epilepsy.

What It Means To Be An Epilepsy Dad

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Father’s Day was last Sunday.

I woke up early, like I do on most Sundays, and went for a run. When I returned, I was greeted to my favorite sound in the world when my son said “Hi, Daddy. Happy Father’s Day!” as he handed me a card that he made himself and a big hug.

Being a father is the most amazing experience of my life. It’s also the hardest, most fun, most frustrating, most rewarding, and scariest experiences of my life. I feel the pressure to give my son a very different childhood than I had and, most days, I feel ill-equipped to do so, but I am trying.

Adding to the challenge of just being a good father is being the father to a child with special needs. Even if there were a manual called How To Be a Good Dad, it’s the equivalent to trying to read that book in the dark. Every intention, every plan, every expectation went out the window and I had to start again looking through a very different lens.

This July, it will have been five years since my son’s first seizure. It will have been five years since I started looking at the world through that different lens. And it will have been five years of living a very different life than I thought I would.

I’m not just a father. I’m an epilepsy dad.

When I became an epilepsy dad, I started this blog so that I could share my experiences navigating this new world. Five years in, here are a few of the things I’ve learned:

I may never know why this happened. I’m an engineer, a problem solver. I’m used to finding the reason why something is broken so that I can fix it. After countless scans and genetic testing, there is no identifiable reason why my son has seizures. But not knowing why and living in denial doesn’t change the fact that he has epilepsy.

It doesn’t matter why this happened. There is nothing that I could have done differently. Even if there was, there is no way to go back and change it. Looking backward and wondering why takes me away from the present, from my son, and from our future.

It may never go away. My son has refractory epilepsy, which means that even though we’ve tried a lot of different medications, he still has seizures. He is on the ketogenic diet and he has a VNS and he still has seizures. It is the most helpless feeling to know that there is nothing that I can do to fix this for him and that his seizures may never go away.

Plans change. I think as parents we all have grand plans for our children when they are born. But as our kids get older and discover what they want, those plans change. This is no different, even though I want to be mad at epilepsy and blame it for the changes. My son was always going to find his own path and, in some way, epilepsy will influence his course. But that is not a reason to give up on the future. It’s a reason to accept that plans change to support him on his journey of discovery, which is what a good parent should do, anyway.

There is a lot to be grateful for. Five years ago, we almost lost our son when the doctors couldn’t get his seizures under control. The pressure and fear and anger that I have felt in the last five years placed a strain on my relationships and on my marriage. But today, my son plays baseball and makes me the most amazing cards on Father’s Day. My wife and I are closer now than we have been in a long time. The situation hasn’t changed, but we have and I am grateful every day that we are together.

You can’t be an epilepsy dad without being a dad. At the end of the day, I’m still his dad. We still have fun, and laugh, and joke, and have pillow fights right before trying to take a nap. I still need to teach him good values and show him how to be a good person. It’s easy to get wrapped up in the worry and the diagnosis and the future but that shouldn’t take away from being a dad first. Because, especially with all the complexity that life has thrown at us, that is what he needs from me the most.

NEXT UP: Be sure to check out the next post by Lisa Hairston at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

My Captain America

The first time my son saw Captain America, he was three years old. Captain America visited his school, and I heard all about it when I got home from work. We were already a Marvel family because I grew up on Spider-Man comics, but from that day on, my son wanted to be Captain America.

His fourth birthday was his first with a superhero theme. He was, of course, Captain America. After his birthday, he wore his costume all the time. He battled evil and saved the day because he was Captain America.

Within a year, my son would be fighting his own battle. It wasn’t a battle against Hydra or Thanos. Instead, it was a far more relentless, cruel enemy. Epilepsy did to my hero what no other villain could do. It nearly won.

The battle was hard. The seizures wouldn’t stop. The medicine he was given flooded his blood with poison rather than give him superpowers. He couldn’t move or talk for days. But he didn’t give up. He fought just like his hero would, and he recovered. He walked out of that hospital and was riding his bike within a few months.

That was four years ago — four years filled with seizures, and struggle, and limitations. My son is still not seizure free. In spite of all the medication, therapy, and the ketogenic diet, his enemy lingers on and makes its presence known every day.

But my Captain America never gives up. Those four years were also filled with progress, and victories, and inspiration. They were filled with a universe of heroes.

As this chapter of the Marvel Cinematic Universe ends with Avengers: Endgame, I looked back at the last few years and saw how much of an impact the movies and the heroes in them have impacted our lives. Even though my son was wearing the costume before he saw his first Avengers movie, seeing his hero on the screen made him feel like he was up there saving the day.

Especially when life for my son got hard, he had these heroes to look up to and to inspire him. And so he would put on his costume when he needed to be brave. And he would grab his shield when the only thing he could do was fight.

Even to this day, if you find yourself walking around Philadelphia and you happen to see Captain America, there is a good chance that it is my son. My Avenger. My hero.

Resilience

Resilience is the ability of a person to cope with stress and adversity. It’s the “bouncing back” from difficult experiences. But what if the difficult experiences never end? How do you bounce back when it feels like the only thing you know how to do is fall?

We do a decent job on the day-to-day challenges. We bounce back from a bad seizure day. We bounce back from days when emotional regulation is harder than usual.

We have also learned to accept a lot of things. The endless medication and side effects. The ketogenic diet. The endless doctor appointment and therapies. The emotional toll that living in uncertainty takes. The lack of sleep.

But none of these things is likely to end. The seizures and the medications and the side effects and the doctors, they are all here to stay. This is our life. This is our normal. There is nothing to bounce back from.

But maybe resilience isn’t only about bouncing back. Maybe it’s making the most of it. Maybe its about finding the strength to continue on when there is no end in sight. And maybe it’s about finding something good every day even when, some days, that’s the hardest thing to do.

Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good. ~Elizabeth Edwards