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.

There’s All Kinds of Success

I was listening to a recent episode of Adam Grant’s Work/Life podcast where he and author Susan Dominus discussed the psychology of achievement and success. There were a few quotes from the episode that stuck out to me as the parent of a child with special needs.

I think this idea that parents are burned with, which is that if their child does not succeed in some socially conventional way, that they have not done their job.

That idea used to live rent-free in my head.

I thought my job as a parent was to prepare my son for the world—and by “the world,” I meant the conventional path: grade school, high school, college, career. That was the map I followed for the first five years of his life.

Then he started having seizures. He was diagnosed with epilepsy. And still, I clung to that same definition of success. I believed I could outwork the diagnosis, push through the limitations, and keep him on the traditional track. But the more I pushed, the harder it became—on both of us.

Eventually, I realized that holding on to that version of success was causing harm. Not just to his progress, but to his spirit—and to our relationship.

My job is to prepare my son for the world. But first, I have to meet him where he is. Not where society expects him to be. Not where I once hoped he’d be.

Right here, right now.

Is it a parent’s job to measure their child’s utility and successfulness in life?

It is a painful trap to judge our parenting by how well our kids reflect society’s idea of worth. We start to see them as mirrors of our own success or failure. We fear that they won’t measure up if they don’t fit in, if they are awkward, or if they don’t meet the normalized expectations of a traditional education, career, and life. It’s bad enough that, unless you have an extraordinary talent or athletic ability, fit unrealistic expectations of beauty, or have an idea that can make a fortune, you’re already excluded from those seen as the most valuable.

And more dangerously, we risk not seeing our children at all.

There’s all kinds of success.

Success shouldn’t be a single destination. It should be a personal journey—based on who he is, what he loves, and what he’s capable of. My job is not to chart the course, but to walk beside him, to clear the obstacles, and to remind him that his path is valid—even if it doesn’t look like anyone else’s.

That’s the shift I’ve had to make: from measuring success by milestones to celebrating presence, progress, and personhood. My son may not follow the path I once imagined, but every step he takes on his path is a triumph. And every time I choose to see him—not through the lens of expectation, but through the truth of who he is—I succeed, too.

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.