community Archives - Epilepsy Dad

The Theater of Cowardice

What unfolded in Congress last week wasn’t just political strategy — it was a performance. A performance where many were aware of the potential damage this bill could cause, and still chose to go along with it anyway.

The new tax-and-spending bill is massive, packed with everything from tax breaks to military funding. But hidden inside are deep cuts to Medicaid — the very program that supports families like mine. It’s a lifeline for children with disabilities, for the elderly, for rural hospitals. And yet, that lifeline was negotiated away like a bargaining chip in the final hours before a holiday break.

What struck me was how many others clearly wrestled with their conscience — and still voted yes. They voiced concerns in the press. They called the process rushed. They acknowledged the human cost. And then they folded. They let themselves be swayed by late-night tweaks, vague promises, or political loyalty. They did what was easiest, not what was right.

This isn’t new. But it’s still devastating.

When I read about lawmakers huddling under blankets in the Senate chamber at 3 a.m., fueled by carrot cake and caffeine, I couldn’t help but feel the disconnect. I know a different kind of 3 a.m. — one spent next to a hospital bed, watching your child attacked by seizures as doctors huddle over him trying to save his life.

It’s easy to stand tall when the cameras are rolling, when your party is watching, when your vote aligns with power. It’s much harder to stand up when you’re standing alone — when your vote might cost you political capital, or a committee seat, or an invitation to the next fundraiser, or the favor of a narcissistic, fascist dictator.

But that’s what courage demands.

Senator Chuck Schumer said it plainly: “They didn’t have the courage, they didn’t have the backbone to vote with the people of their states.” Some senators voted in “obeisance to Donald Trump and his billionaire buddies,” even when their constituents — the ones in hospital beds, the ones relying on Medicaid for cancer treatment or seizure meds or speech therapy — were the ones who stood to lose the most.

We’ve been in this fight too long to pretend this doesn’t hurt. I’ve filled out the Medicaid renewal forms while sitting on the floor of a hospital room. I’ve seen the costs of the pills, therapies, and surgeries that kept my son alive and have given him a life worth living. These programs, flawed as they may be, are holding up families like mine. If they cut it down, what’s left?

This wasn’t just cowardice. It was a performance of leadership with no real cost to the performers. But for families like mine, the cost is very, very real.

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.

Walls and Doors

A few weeks ago, we attended the yearly fundraising event for my son’s school. The event was an opportunity to interact with other parents, teachers, faculty, and board members and to collectively celebrate that a place exists for kids like my son.

This year, the guest speaker was a Hollywood movie producer who attended the same school when he was my son’s age. The producer accepted the school’s Achievement Award and gave an emotional speech about how much the school helped him learn and grow and how it changed how he felt about himself and his outlook on the future.

Earlier in the day, he spent time with the kids, including my son. The kids worked together to create movie pitches and presented them to the producer. My son came home beaming, feeling proud of himself for his accomplishment, and also because the producer gave my son the inside scoop that there would be another Captain America movie.

We didn’t learn all the details until we spoke with one of my son’s teachers at the fundraising event. He often has a hard time remembering and sharing details, but his teacher was so proud of him, and we were equally proud and grateful that the producer had spent time with the children.

In his speech, the producer talked about his experience with the kids. He said it reminded him of what it was like to find a place like this school after struggling for so long in other schools. He looked at the faces of the kids and wanted to inspire them and show them that, even though they have challenges, with a loving family and by the right support, anything was possible.

When he said that, I felt a light come on.

I think a lot about my son’s future. I wonder what he will be capable of, and what options will be available to him. Often, those thoughts are about the things he won’t be able to do because I see how much he struggles today. But I think a part of that is because we traveled so much in the unknown, without the type of support that schools like this provide. Based on our experience, the unknown is dark and scary, and we spent so many years navigating potential futures in that dark, feeling around for a way out.

When it’s that dark, everything feels like a wall.

But that moment in the producer’s speech when the light came on made me think about how much our life has changed in the last few years. Our new home in our new town, my son’s new friends, and my son’s new school have all changed his life. They’ve changed our life. The school, in particular, has given him a sense of belonging in a safe space and the tools he needs to learn. He is surrounded by other kids like him. He is being taught in a way that works for him. And now, he’s seeing examples of what other kids like him have done.

The school has provided light in the dark, and, for the first time, we can see a little further ahead.

It’s because of that light that, for the first time, we can see that we’re not just surrounded by walls. We can see doors, too.