Tag: seizures

The Long Plateau

We are standing on a plateau.

For the past few years, my son’s condition has remained the same. He still seizes almost every day. He’s still on a handful of medication multiple times a day and the ketogenic diet. He still struggles in school and navigating relationships with his peers.

I should be grateful that he hasn’t gotten worse.

The beginning of our journey with epilepsy was the equivalent to falling off a cliff. We went from a normal childhood to fighting for his life in the matter of months. We went from school and friends to hospitals and doctors and nurses and therapists. We went from playing hockey to being toxic on medication and needing to be carried to the bathroom. Back then, I would have longed for things to stay the same.

Once he was stabilized, we spent the next few years trying to rebuild what he’d lost. Progress was agonizingly slow, especially as we discovered more pieces of him that could not be rebuilt. We stumbled every time we pretended that things were ever going to be like they were before. While we were no longer falling, the slope of ascent was so gradual that it was hard to tell if anything was getting better.

Eventually, some things did get better. There were fewer seizures, confined mostly to the early morning. He graduated from a handful of therapies. He stepped foot in school again. Some things did get better, but not back to where he was before that first seizure. And not any further.

Are we really plateauing or does it just feel that way? Are we doing everything we can to keep making progress or, like a person trying to lose weight, are we giving the appearance of doing everything but secretly skipping workouts or sneaking in extra calories? Or have we truly reached our limit of progress?

Years ago, when the direction of my son’s condition turned around, every day probably felt this way. I wondered whether things were as good as they would get, much like I’m doing now. I wondered if we were doing everything we could and whether we we doing everything right. I looked for someone to blame rather than accepting the reality of the situation. Because it’s impossible to believe that, no matter what you do, things will never be what you though they were going to be.

The longer things stay the same, the more I forget how far we’ve come. The more that “this is it” feeling takes over. The longer I sit in that feeling, the harder it is to hold on to hope for better.

And this plateau feels so long.

A Boy’s Journey

During the first few weeks of January, we traveled to Xenia, Ohio, to meet our son’s service dog, Emmet. It was a meeting more than two years in the making.

I’m going to try a few new things this year, so I thought I’d share the first part of a video from our trip.

I also want to thank our generous friends and family who contributed to our fundraising campaign that made this possible. I am so grateful and humbled to have met and be surrounded by so many amazing people.

If you would like more information on service and service dogs for children, please check out 4 Paws For Ability.

Please subscribe to our YouTube channel here EpilepsyDad on YouTube!

Maine 2.0

For the second time during the pandemic, we’ve run away to Maine.

I’m starting this post on our first morning in the cabin. My son is at the dining room table, doing virtual school with my wife. The fog is starting to lift, and I can see out the window through the trees and across the secluded cove of fresh seawater that salts the air.

It’s surreal. Many years ago, my wife and I talked about living a more nomadic life, traveling around and doing work and school wherever we happened to find ourselves. I would work in a kitchen somewhere in Europe, and we’d drink wine and play music at night. Back then, I cooked more adventurously, and we drank, and we played more music.

But over the last few years, the practical part of me that optimizes for safety and comfort, when given a choice between planning that future or turning it into only a dream, chose the latter. I needed a job with good insurance. We needed to be near a hospital and a pharmacy. My son needed special accommodations at school. In a world with unpredictable seizures, changing medications, and endless speed bumps, we needed stability anywhere we could find it.

Over the years, as my son’s condition started to normalize, even if not stabilize, we’ve started to venture out further. At first, it was back to Colorado or Florida, places where we always had the security of friends and family around us. We’d go for a week at a time to the Poconos, still only a few hours drive back to the city and its services.

Our first big trip was to Hawaii, where we stayed for almost two weeks. Even though we were with friends, it was the first time since the seizures began that I felt like we were disconnected from the constant watch and care of our safety net. Sure, there were seizures on the plane and in the hotel and on the beach, but we embraced the adventure.

The next big trip was to Panama. Again, we went with friends, but this time we spent part of our time deep in the mountains away from any major city, and the other part on an equally isolated island. There were seizures on the plane, and in the mountains, and on the island. But I felt even more disconnected there but still safe.

When the pandemic started and we knew that I was going to be working remotely for the foreseeable future, we decided to pack up and head to Maine for a month. It was just us in a small house in a remote town along the ocean, but I felt like we were actually living in another place. The seizures followed us there, too, but I was working, my son continued his school work with his tutor, and my wife was writing and working. We visited the grocery store, cooked, found a pizza place we liked, and continued our lives, just in a different place. Now, we’re doing it again.

I don’t know if that truly nomadic lifestyle will ever be in the cards for us. I hope to embrace more working from home, assuming working from an office is ever a thing again. But that voice in my head is also whispering words like stability, and doctors, and pharmacy. It’s telling me that the world is going to get back to normal, and that a job requires an office to go to, and that we need the safety of benefits and insurance.

But it is in those moments where maybe I need to remember where we’ve been. More so, I need to look around at where we are right now. And maybe I should step outside and go for a walk and reconnect with being disconnected. And be open to a different future where everything is still possible.