epilepsy 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.

Together, in His World

I stood behind my son in a deep cave. A torch on the wall behind us was the only light, casting our long shadows down the tunnel ahead.

“What are we looking for?” I asked.

“Diamonds,” he said.

We continued forward, using our pickaxes to clear the stone blocks in our path. The deeper we went, the darker it became. Occasionally, we’d hit pockets of lava or veins of redstone. I mostly followed his lead—he knew where to dig, where to place torches, when to mine, and when to run.

Then I saw movement ahead. I hung a torch on the wall and, when it ignited, I saw a very large spider walking toward us.

“I hate spiders,” I sighed.

My son didn’t hesitate. He didn’t flinch. While I stayed back, cautious and reluctant, he moved forward.

That’s how it’s always been. In these games, in these worlds, he becomes someone else—bold, decisive, brave. He leads with purpose, unburdened by the hesitation that sometimes follows him in the real world.

I raised my head to see him at his computer, locked in, defeating the red-eyed monster. With the path clear, I looked back down at my iPad, and we pressed on in our quest.

It had been a while since we had played in the same physical space. Lately, he’s been focusing on his streaming “career,” diligently trying to build an audience on Twitch. He’ll come home from school, finish his homework and chores, head to his room, and close the door.

I’ll watch his stream. Sometimes he plays with friends. Sometimes alone. Sometimes we play together—but two floors apart, connected only by FaceTime or in-game audio. It’s something, but it’s not the same.

Today was different.

Minecraft is one of the few games where he takes the lead. He’s the expert—he builds the world, sets the rules, and guides the mission. He lights up when he shows me what he’s made—a house with hidden doors, a rollercoaster that goes through a mountain, or a massive Captain America shield reaching impossibly high into the sky.

In the real world, everything takes extra energy. Every day is a challenge that he doesn’t always show. The constant pressure to keep up, to interpret unwritten rules, to manage the invisible toll of his condition—most people wouldn’t notice it, but it’s there. And it wears on him. But in these digital spaces, he’s free. Confident. In control.

Sitting beside him, I kept glancing up from my screen. I saw how invested he was in keeping me alive, on task, and included. He was unusually chatty, explaining our next steps. His voice was proud. His posture relaxed. He was happy.

And I was, too.

We’ve been in a bit of a rut lately—living in separate spaces, our lives occasionally overlapping. I’ve caught myself worrying that the distance is permanent. That the doors he closes might stay that way. It’s easy to panic when that happens. To think it’ll take something big to bring us back together.

And maybe that fear comes from knowing what distance can become.

Because that’s what happened to me. I hid in my room, hands on a keyboard, eyes on a screen, building worlds in code. I created that distance—between me and my parents, who didn’t understand me, and my sister, who didn’t want to be around me. In my room, and in that world, it was easier. I was safe. And no one did anything to change it. So the distance became permanent.

But today reminded me: sometimes it only takes a moment. A small step into his world. A little curiosity. A shared screen. A diamond hunt.

Not to fix everything, but to find each other again.

The Last Baseball Game

The baseball was hit high to right field, where my son was playing. I watched as he tracked the ball and positioned himself under it. His feet were planted. His glove was up. He was ready to make the catch.

Then, the ball slipped past his glove and bounced off the top of his head.

There was a moment of panic as he put his hand on his head where the ball had struck. Then, with his hand still on his head, he started chasing the ball.

The coaches from both teams were calling for the play to stop. The base runners slowed their advance as the coaches and my son’s teammates headed to the outfield. All eyes were on him as his coach checked him out. After a few minutes, they guided him off the field and onto the bench.

That will likely be the last play of my son’s baseball career.

We knew going into this season that it would likely be my son’s last. He was going to end his career last season, but the opportunity came up for him to play with his best friend, so he decided to play another year.

And it was a great year. We had one of the best coaches—the same one we had two years ago. The same coach who rushed to the field when my son got hit. The same coach who gave him multiple opportunities to play and even pitch, experiences that my son likely wouldn’t have gotten with anyone else.

I’ve written a lot about baseball over the years. Although we started as a hockey family, epilepsy and my son’s health had other plans. The stamina and balance required for hockey were challenging, and even with a helmet, a fall to the ice or crashing into the boards was extremely risky.

Baseball, though, has always had a more manageable pace and physical requirements. In the field, he mostly stood around, and, in between innings, he sat on the bench until it was his time to bat. There were enough kids that he could rest for a few innings on his worst days, but still participate however he was able.

There were teeball games, back when we were still trying to get his seizures under control, where he’d have a seizure on the field, stand back up, and be ready to make a play. There were games where the side effects of his medication made him wobbly or angry, and we would sit and hold him in the grass to see if it would pass.

As he got older and his seizures were more controlled, he was able to play more innings. His processing and motor skills were still challenging, but those were awkward years for most of the kids, so he fit right in.

In the last few years, however, the gap in skill between my son and most of the kids has widened. He still gets hits when even stronger players strike out, and he makes great fielding plays to get an out. His hits don’t go as far, and his throws aren’t as sharp as his teammates’. But still, he shows up, steps onto the field, and enters the batter’s box, ready to do his job and contribute to his team.

His heart always made up for any gaps in his skills.

It was his heart that drove him to chase down the ball after taking it off his head. He had a job to do, and he didn’t want to let his team down. While it would be easy to focus on the missed catch, this play best demonstrates who my son is as I think about his time playing baseball. It’s who he has always been.

Despite his challenges and the odds against him, he shows up.

He does his best.

And he never gives up.

If you like baseball, I’m reading a wonderful book called “Why We Love Baseball” by Joe Posnanski. It’s filled with some of the best plays in baseball, including the story of Jose Canseco taking a ball off the top of his head, too, with an unexpected result.