Category: seizures

Where Do We Go From Here

I’m coming up on the 8th anniversary of the Epilepsy Dad blog. That’s more than 200 posts documenting our journey since my son was diagnosed with epilepsy in 2014.

The beginning of that journey was pure chaos. We were coming through nearly losing our son when the doctors couldn’t control his seizures when I wrote my first post. I captured the endless and severe side effects of the medications we tried. I shared our experiences with therapy as my son lost control of his emotions. I documented every attempt to control seizures, from CBD to the VNS, that were never able to silence them fully. And I captured not just my son’s challenges but the impact that this complicated condition had on my family and me.

Admittedly, the last few years have been sporadic with posts. I’ll get the inspiration to write when we reach a new milestone or when we encounter a new setback, but largely it’s gotten more difficult to find that inspiration because our life feels pretty settled.

Settled. It’s a strange word to be using. My son still seizes every day. He still takes handfuls of pills multiple times a day. He still struggles in school, socially, and emotionally. His future is still uncertain. From the outside, it must look anything like being settled. But this is our normal. This is our every day, and less and less does anything happen outside that normal.

That’s not to say that we don’t celebrate the exceptions when they do happen, no matter how small. A good report from his teachers or doctors. A hit at a baseball game. A dominant win at Uno. We also have the good fortune to have had amazing experiences and see interesting places. In many ways, we’ve worked hard to get to this place so that this could become our normal, in spite of the challenges.

But where do we go from here?

When I sat down to write, my intention was to make that question about the blog. What else is there to write about? What other part of our story was there to write about when most days feel like a re-run of the previous day?

It was different when the blog started. I used this blog as a way to process my thoughts and feelings about my son’s diagnosis when every day brought new challenges, or when I was reacting to a new obstacle or achievement. It felt like every day there was something to write about, then it was every week, then every month. And now, I’m writing about how there isn’t much to write about.

As I pondered that thought about the blog, though, the act of writing down my thoughts changed to thinking about the future of my son and our family. So much of the last few years have been reactionary, but now we’re trying to shift our gaze from looking backwards to looking forward. From being reactive to being proactive.

Where do we go from here? Forward. Where we go from here is to experience what is ahead of us. Where we go from here is unwritten and unknown, but it is also something we can influence and contains the potential that we can work towards. And maybe, there will be something to write about.

I don’t plan on shutting the blog down, but posts may not be as frequent as we step into the future. But I hope you’ll check in. I hope you’ll be in touch, whether its leaving a comment or sending me an e-mail. And I hope, wherever you are in your journey, that when you find your normal, you can be grateful for the progress, make the most out of every single moment in the present, and be hopeful and intentional about the future.

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.

There Is No Blue Wire

We don’t really know how long our son was in status epilepticus.

We had moved to a new city only six months before, around the time when my son had his first seizure. He had his second a few months later, which lit a fuse inside his brain. We started to see more “ticks”. I didn’t think anything about them, at first, because they looked very different from the seizures we saw. But he started having more of them. The fuse was burning and it was quickly reaching the explosives.

In movies, when a hero defuses a bomb, it’s very dramatic. She’s on the radio with the experts who are talking her through the process.

“Take off the cover.”

Our hero unscrews the cover, exposing a spaghetti of wires. “Done,” she says. “I see the wires.”

“Now, “ a voice says through her earpiece, “carefully trace the wires back to their source. You should see a control board with a power source.”

Our hero uses the back of her hand to wipe the sweat from her brow. She squints her eyes as she uses the screwdriver to carefully push wires out of the way to reveal a circuit board with a series of glowing lights.

“Done. I see the board, ” she confirms.

“Ok, coming off the back of the board you should see a red wire and a blue wire. You need to cut the blue wire.”

Our here slowly grabs the wire cutters from her pocket. In her left hand, she uses the screwdriver to push back the wires further. As she starts to weave the wire cutters into position with her right hand, she stops.

In movies, when a hero defuses a bomb, there is a blue wire. In our story, there was no blue wire. The spark ignited. The bomb exploded.

Inside my son’s brain, an uncontrollable chain reaction began and sent electricity coursing through every cell. His body contorted. He was disoriented. He slept. The cycle repeated for days as another team of doctors tried to contain the secondary effects of detonation, like stopping the spread of radiation after Chernobyl.

While the doctors managed to prevent the worst possible outcome, the damage was done both from the seizures and the tactics employed to put out the electrical storm. We’re still dealing with those consequences years later. But our son is here, and he’s happy, and we are grateful.