epilepsy dad

Tag: family

  • More Than Survival

    More Than Survival

    When I was young, I didn’t have a lot of support learning how to manage big emotions. When things got hard, I would go internal, like a turtle pulling itself into its shell. I’d get anxious and scared, pulling my extremities closer to my body to make myself as small as possible until the danger passed.

    That was a survival skill, but while it helped me get through the danger, it didn’t address the fear and anxiety that remained. I never learned to regulate my emotions and nervous system. As a result, I spent much of my life being an anxious, introverted, scared little boy and hiding from the world.

    I developed other skills to compensate. I found the courage to join the Army. After the army, I started a career, got promoted, and led teams. I got married and started a family. That’s when those compensatory skills began to fail, and I reverted to the safety of going internal, which had worked for me. Still, it didn’t work for deepening a relationship or dealing with difficult situations together.

    The stress of starting a family is real, and it was terrifying to bring another life into the world and be responsible for keeping it alive. I knew I wanted to give my son a better childhood and life than I had, which felt like a huge responsibility especially considering I had no reference or idea what that meant. It was easy to do the fun stuff with him, but the stress and anxiety brought some of those survival skills back to the surface which created distance between me and my family. But we managed.

    The bigger test was when we moved to Pennsylvania. We moved across the county into a new city for a new job and, within a few months, my son also began having seizures. Within that first year of moving, we spent nearly six months in the hospital trying to get his seizures under control, dealing with side effects from his medications, behavioral issues, and the fear of losing him, all in a new environment where we had no support.

    Again, those survival skills that I learned as a child came back in full force. I forced my emotions down inside my shell and focused my energy on the logistics and on getting things done, rather than dealing with the fear, anxiety, shame, and despair that were trying to make their presence known.

    That could be what was necessary. I needed to keep my job, maintain our insurance, put food on the table, and create a sense of normalcy in an unstable and unnatural time. While the crisis was happening, I needed that focus and detachment. But afterward, when the danger had subsided and what was left was the rebuilding of our son, that detachment became a divide, a chasm I couldn’t reach across to connect with my family.

    I’ve spent a lot of time since then to cross that divide. Therapy, self-reflection, and the hard work of being present have brought me closer to my son, and I hope they have also set an example for him on how to balance survival with connection. It’s not easy, but it’s worth it because my son deserves more than just survival.

    He deserves me.

  • Alone Together

    I don’t know where you’re going, but do you have room for one more troubled soul?

    That’s a line from the Fall Out Boy song Alone Together. The title itself is an oxymoron. How can someone be both alone and together at the same time?

    There are a lot of ways to interpret it. Some people hear it as being about drugs. Others think it’s about two people in the same physical space, but still feeling isolated and apart.

    That idea feels familiar. During the pandemic, my family and I were together in the same house, but often living separate lives. We ate in different rooms. We passed each other in the hallway with only transactional conversations. We were together, but we were also alone.

    Sometimes, that distance can feel easier. It can be exhausting to be emotionally available all the time, especially when there is no break or separation. But if that becomes the norm, it’s a dangerous road. The road to ruin, as the song puts it, “and we started at the end.”

    There’s another way to look at the phrase, though. You can also be physically alone from the rest of the world, but emotionally together with someone else. That’s how I often feel with my son. We are separate from much of the world—by circumstance, by hospital stays, by the realities of epilepsy—but in that separation, we are together. Us against the world. Not really alone at all.

    That’s the tension at the heart of the song. It’s also the tension I feel as a parent and caregiver. Lonely, but not alone. Together, but sometimes separate. Finding connection even in isolation.

    Let’s be alone together. We can stay young forever. Scream it from the top of your lungs.

  • The Cleverness of Me

    The Cleverness of Me

    “Oh, the cleverness of me.” (Peter Pan, Barrie 1911)

    In Peter Pan, after teaching Wendy and her brothers how to fly, Peter proudly declares, “Oh, the cleverness of me.” It’s a line that sparkles with the joy of discovery but also reveals the limits of his childlike perspective. Peter delights in his own ingenuity, yet he lacks the maturity to see the risks or responsibilities that come with it. That mix of brilliance and blindness captures both the wonder and the danger of living only in the moment.

    I am constantly amazed by my son’s ability to devise clever creations. He often comes up with inventive workarounds to the challenges he faces, ideas that make me marvel at the way his brain works.

    He made a custom case for his phone using cardstock and markers. He created a marble run by tracing pieces of track on paper and taping them together. He taped a “lock” on his door so that he could use the key that Santa gave him. And he finds clever ways to win the games of skill at the arcade.

    But like Peter, he doesn’t always have the executive processing or life experience to recognize when those solutions carry risks or could be dangerous. He figured out how to use my wife’s devices to disable the screen time and parental controls on his devices. He installed different browsers on his computer when he was blocked from visiting inappropriate websites. And he finds interesting places to hide the evidence from a candy binge.

    Eventually, though, he gets discovered and we have teachable moments as I expand the ways I need to monitor his behavior as he expands his bag of tricks. In these instances, his behavior is generally age-appropriate, although the technology makes it easier for him to have access to inappropriate content.

    But it also makes it easier for him to find himself in dangerous situations. The websites he visits are also full of predators and scammers looking for teenagers to manipulate and extort, and the reality is that my son is more susceptible than a typical teenager. His emotional immaturity and challenges with executive functioning often prevent him from fully understanding the dangers associated with using his cleverness to bypass the safety measures that we put in place.

    It’s a reminder of how thin the line can be between brilliance and vulnerability, and how much he still needs us to guide him.

    However, I struggle with striking a balance between celebrating his cleverness and protecting him from dangerous things, and celebrating creativity when he lacks the maturity to recognize its limits. Most of the time, I lean too heavily on protectionism, and it feels as if I am constantly criticizing him or pointing out the flaws in his creativity. I tell him how his idea won’t work, or how to make it better. I don’t spend enough time encouraging him to experiment with his ideas and continue trying to figure things out.

    He will need that cleverness to adapt to a world that wasn’t built for him. He will need that ingenuity to navigate challenges that most people will never have to face. My job isn’t to stifle it in the name of safety but to help him learn how to use it wisely, to guide him as he figures out when to leap and when to look first. It’s not easy to let go of protectionism, but I know that if I can nurture his creativity instead of only policing it, that cleverness—the same spark that sometimes gets him in trouble—might one day be the thing that helps him fly.

  • 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.

  • The Last Baseball Game

    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.

    epilepsydad baseball

    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.