Tag: epilepsy

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!

The Year That Was 2020

Let me start with the understatement of this brand new year:

2020 didn’t go according to plan.

The pandemic changed our lives…our world. So many people have lost their lives. I have friends who lost loved ones to the virus. I know people who have lost their jobs. We were forced into isolation and lived without physical connections. We lived in fear of the virus and of each other.

The deaths of too many of our Black brothers and sisters shone a light on the pervasive racism that continues to exist in our country. We watched our city express its frustration and desperation for change on the streets, as did many others across the nation and around the world.

The election continues to demonstrate the divided nature of our country. The same tools that we used to connect with each other when we couldn’t be together also spread dangerous conspiracies that endangered lives and pulled us apart.

The pandemic didn’t create these things. We were already disconnecting from each other every time we checked our phones while spending time with others or in the middle of a conversation. Racisms and its damaging effects have existed forever. And our divisiveness goes back to the start of our country.

2020 wasn’t a dumpster fire because it created new problems. Instead, it is because it stoked many separate, smoldering problems. The embers from those fires were carried far and wide, where they were able to gather enough fuel to grow and the individual fires started to connect into a massive blaze.

The fire has done so much damage. This is usually the part of a post where I would write how fires in a forest clear the way for change. I would mention how the nutrients from the dead trees are returned to the soil and how those nutrients and exposure to sunlight encourage new growth. But I’m having a hard time believing it myself.

Because of the effects of my son’s epilepsy, I’ve spent a lot of time over the last few years standing among the ashes. When you’re standing among the ashes, it’s hard to see anything other than the damage that the fire has caused. It’s hard to believe that things are going to be any different when it takes so long for those seeds to sprout and become a new forest.

The turning of a calendar isn’t going to make racism go away. It’s not, nor is a new president, going to bring our country together. It’s not going to return our lives to what they were before, even if we wanted to pretend that these problems didn’t exist before the pandemic.

Change doesn’t come just from the flipping of a calendar or the passing of time. Change comes from wanting things to be different. Change comes from believing that things can be different. Change comes from action.

We have to clear away the ash and encourage those seeds to grow.