epilepsy dad

Tag: life

  • Together, in His World

    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.

  • Bit of Both

    Bit of Both

    There’s this great line from the Marvel Guardians of the Galaxy movie where one of the characters asks his team what they should do next.

     Peter Quill: What should we do next? Something good? Something bad? A bit of both?

    Gamora: We’ll follow your lead, Star-Lord.

    Peter Quill: Bit of both.

    At a recent appointment with our neurologist, we were giving her an update on our son’s quality of life. As I listed the highs and lows, that line from the movie popped into my head because it perfectly captures where we are on our journey with epilepsy.

    For so long, it felt like we were chasing a single definition of “better.” Fewer seizures. Better focus. More sleep. But over time, I’ve learned that progress rarely shows up in a straight line. It comes in fragments stitched between setbacks.

    Even with the medication changes, VNS, and DBS, our son still has seizures most days. But they’re mostly when he sleeps and hasn’t had a daytime seizure in a long time. The seizures affect his sleep and rest, and he’s tired a lot. But we’ve been able to manage his exhaustion and prevent it from escalating and increasing his seizures.

    Because of his morning seizures, he often goes to school later, but he makes it through the day. He still struggles with his memory and executive functioning, but he is able to complete tasks and problem-solve. He’s behind socially, but he has a best friend. When we thought we should only expect regression in his cognitive abilities, we saw progress in math and other subjects.

    When the neurologist did the “finger-to-nose” test to assess his upper body movement and coordination, she observed some tremors and dysmetria. But he also plays baseball and can hit a fastball and throw a pitch. His reaction time is slow, but his coaches adapt their style to help him contribute. The team consists mainly of neurotypical teens who go to school together and socialize outside of baseball, but they treat my son kindly. This season, the coach even drafted his best friend onto the team.

    Last week, I wrote about embracing the bittersweet. Moments are never just one thing, and I sometimes struggle to find the good in bad ones, but I look for the bad when the moment is good.

    In the middle of sadness, there is love. In struggle, there is strength. In the hardest days, there is light.

    Life isn’t one thing, either. It’s a collection of moments and experiences stitched together over time. It’s natural to apply the same pessimistic lens to the collection as to each individual moment and get stuck in the pattern of only seeing the negative. But in life, just as it is with each moment, it’s important to see both.

    Maybe I won’t always find it right away. Maybe some days the sorrow will feel heavier than the joy. But if I can hold space for both, if I can remember that they live side by side, then maybe I can stay a little closer to hope.

    Maybe I won’t always recognize it immediately. Some days, the bad will feel bigger than the good. But if I can step back, hold space for both, and remember that neither tells the whole story on its own, I can keep moving forward.

    Holding space might mean celebrating a hit in baseball even if the rest of the day was hard, or letting my son’s laugh take up the room without immediately wondering how long it will last. It’s giving each part its due without rushing past the good or getting swallowed by the bad.

    That’s not just something to look forward to — it’s something to hold onto.

    So, what comes next? Something good? Something bad?

    Bit of both.

  • The War on DEI Is a War on My Son’s Future

    The War on DEI Is a War on My Son’s Future

    Like many parents of children with epilepsy and neurodivergent diagnoses, my wife and I have spent years advocating for accommodations that help our son navigate a world that isn’t built for him.

    At times, it felt as if it was us against the world. We would have to document, explain, and justify every request to provide our son an opportunity to thrive, not merely survive. While our journey has primarily been uphill, we have endured because our son deserves the same opportunities as everyone else.

    It was encouraging to see Diversity, Equity, and Inclusion (DEI) initiatives take a more critical role in our society in the last few years. These initiatives create environments where all individuals—regardless of race, gender, disability, or background—have equal opportunities to reach their full potential.

    Many DEI initiatives specifically address disability-related barriers, such as:

    • Ensuring accessible workplaces and schools
      • Promoting inclusive hiring practices
    • Providing reasonable accommodations (e.g., flexible work arrangements, assistive technology)
    • Educating organizations on disability awareness and reducing stigma

    It made me feel like our uphill journey might level off and that these programs might help relieve some of our struggles and fears about our son’s future.

    But then, Trump and MAGA happened.

    In the first few weeks after the new administration took over, it has ordered the rollback of DEI policies meant to open doors that were unfairly closed, falsely equating diversity efforts with discrimination. The ACLU wrote, “In his first few days, President Donald Trump is undertaking a deliberate effort to obfuscate and weaponize civil rights laws that address discrimination and ensure everyone has a fair chance to compete, whether it’s for a job, a promotion, or an education.”

    Without facts, they have blamed DEI initiatives for the devastating fires in California and, most recently, for the tragic crash between a military helicopter and a passenger jet in Washington, D.C. In a press briefing, they specifically called out part of the FAA’s DEI plan that included hiring people with disabilities, including neurodivergence and epilepsy.

    Let’s be clear: Accommodating neurodivergent people did not cause a plane crash, just as supporting people of color or the LGBTQ community did not start a wildfire.

    But the messaging, pandering to the MAGA base, aims to create an environment where rolling back protections and opportunities for communities who have been discriminated against, marginalized, and disenfranchised for so long becomes acceptable, even necessary.

    The Trump administration’s latest rollback of DEI initiatives isn’t just another political move—it’s a direct assault on people like my son. And it’s not limited to government institutions. By removing federal funding for DEI initiatives and rolling back the requirement for companies doing business with the government to have standards that address and prevent bias, the administration is bullying corporations to abandon or alter their DEI programs.

    DEI initiatives aren’t some abstract concept, and these aren’t abstract policy changes. This administration’s actions aren’t just about politics. They’re about real people—our children, families, and futures. They’re about my son’s future. I’ve fought too hard for his right to an education, to be safe at work one day, and to live in a society that values him as a complete person.

    For families like mine, these programs are lifelines, offering hope and opportunity in a world that often feels stacked against us. Rolling back these protections isn’t just a policy change; it’s a betrayal of the progress we’ve fought so hard to achieve. My son and countless others like him deserve a future where they are valued, included, and given the chance to thrive. We cannot let these initiatives be dismantled without a fight. As parents, advocates, and allies, we must stand together, raise our voices, and demand a society that embraces diversity, equity, and inclusion.

    The stakes are too high to stay silent.

  • The Perfect Storm

    The Perfect Storm

    My wife pulled up a picture of me from a year ago on her phone. At least, I think it was me. The face in the picture had the same thinning hair and the same gray beard, except it was wrapped around a much rounder face. I recognized the shirt that person was wearing because I had the same one hanging in my closet, but it fit much tighter on that person than it did on me.

    Maybe it was the angle, or maybe the picture was altered—people can do all kinds of things with AI these days. Either way, I was suspicious of the image’s authenticity because I was blessed with a fast metabolism. I was the same weight for most of my youth and a consistent, slightly heavier weight for most of my adult life. It didn’t matter how much I worked out or what I ate.

    “When you’re 25 it will change…”

    “When you’re 40 it will change…”

    But it didn’t change. Even if my routines or diet did, everything averaged out to keep me exactly where I was. As I said, I was blessed.

    But then I remembered that, around the time that picture was taken, I had my first physical since the pandemic. As I stood on the scale, the number that appeared was much bigger than I had expected. The lab work that came back also showed markers that led my doctor to discuss medication to treat high blood sugar and cholesterol.

    Maybe that was me in that picture, after all.

    Do you remember the movie The Perfect Storm with George Clooney and Mark Wahlberg? It’s about these fishermen who get caught at sea when a trio of storms merge into, well, a perfect storm.

    That’s what happened to me during the pandemic. The combination of the world shutting down and limited access to my regular physical activity, the stress and unhealthy eating choices that came with it, and the increased fear, anxiety, and depression from extreme isolation and watching my son deteriorate physically and emotionally combined into a storm that consumed me.

    Even after we moved out of the city and the world began to open up, I couldn’t find my way out of it. Even after we found a school for our son and he began to improve, I couldn’t find the motivation to change. The storm had knocked out my engines, and I was drifting at sea.

    My physical exam results were like the light from a lighthouse far in the distance. I was drifting, and they warned me of the rocky shore ahead. I had to decide whether to continue to drift in that direction or try to fix my engine. Like the fisherman at sea, I thought about my family, who depended on me. I thought about the adventures we’ve had and the ones ahead of us.

    I picked up a book by Peter Attia called Outlive that discussed longevity and living better longer—not just living longer but living the life you want in the future. I don’t want to be 80 and sedentary. I want to travel with my family and be able to put my luggage in the overhead compartment on a plane. I want to play basketball with my son, play tennis with my friends, and go on long walks with my wife and the dogs.

    According to the book’s philosophy, I had to consider my future and work backward to the present to prepare for the life I wanted. That meant changing my ways that led to the person I saw in that picture and who stood on the scale in the doctor’s office. If I wanted to continue to be there for my son and family, I needed to fix my engine.

    The timing of this post wasn’t intentional, but it is serendipitous. As we begin a new year, it’s a natural time to reflect on where we are and where we want to go. The world and our lives are stressful enough, and being parents of children with special needs adds another layer of complexity and challenge that often leads to exhaustion, feeling overwhelmed, and depression.

    The decision to change—even in small ways—can set us on a better path. Whether it’s prioritizing your health, finding balance, or being more present for your loved ones, the first step is recognizing the need for change and believing it’s possible.

    Here’s to a year of growth, resilience, and renewed purpose.

  • Rock On

    Rock On

    The image above was 10 years in the making.

    The photograph on the left was taken in July 2014. We were in Philadelphia ahead of our eventual move from Colorado. My wife and son had a long week of exploring and house hunting, and we thought we’d unwind and play games. About an hour after that picture was taken, we’d be standing in the lobby waiting for a taxi and watching our son have his first seizure.

    Over the next 10 years, we’d see our son have countless seizures. We’d have many nights where we thought we would lose him. We would spend months in the hospital saving his life and then years trying to rebuild what was damaged. We would struggle to find his place in the world.

    The photograph on the right was taken at Dave & Buster’s a few weeks ago after our son’s last school day before winter break. As I walked around the corner and saw him pick up the guitar, I had the image of my present-day and my son 10 years ago, like two different realities, crashing together in my mind.

    While we’ve had struggles and challenges in the last ten years, the significance of that moment was that we’ve also had successes and accomplishments. Our son is 15 now, and we’ve had so many years we weren’t sure we would get. He plays baseball, enjoys gaming and streaming, and has friends. He’s in a school for kids like him, which gives him a place to learn and grow.

    When the picture on the left was taken, we didn’t appreciate how little knowledge and control we had over the future. Later that night, any vision we had for the future was shattered. The picture on the right reminded me that we can never predict the future. We can only learn to embrace every moment, victory, and opportunity to pick up the guitar and rock on.