epilepsy dad

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  • Still a Hockey Player

    Still a Hockey Player

    My son wants to be a hockey player again.

    Actually, he’s wanted to be a hockey player for most of his life.

    Hockey has always been part of his identity. He had a hockey stick in his hands as soon as he could stand. He left the hospital with an NHL toque on his head. One of my earliest memories of him is lying on a couch in a hospital room a day or two after he was born, him asleep on my chest, a hockey game on the television.

    Before the seizures.

    Before we knew what was coming.

    When he was little, we played hockey in the living room with miniature sticks and a foam ball. We took turns as players and goalies. We went to an outdoor rink near our house with sticks and a ball and played one on one.

    One time, there were other people there—teenagers, I think. One of them was a goalie. He let my son take shots on him. Let a few go in. My son was three or four. This was still Colorado. Still before everything changed.

    He started skating when he was two. He joined “Intro to Hockey” when he was about four. Right before we moved to Pennsylvania. Right before the seizures started.

    Right before we knew what we were carrying forward.

    Once his seizures were somewhat under control—though never eliminated—we tried again. We went back to skating. We worked on stick handling off the ice. But even that eventually became too much. Then COVID hit, and everything stopped.

    When we moved to the suburbs and the world slowly opened back up, we tried skating lessons again. But they were exhausting for him. His ankle strength wasn’t there. His stamina wasn’t there.

    Eventually, we stopped.

    But hockey never really went away.

    A few years ago, he brought up the idea of being in the NHL. We talked about how it wasn’t something he could safely pursue. With his health challenges and the fact that he still has seizures, the risks of hockey make it unsafe.

    We tried to name other ways hockey could still be part of his life. Other ways to love the game and stay close to it.

    We watch hockey. He loves his Avalanche. We went to an NHL Finals game—his Avalanche versus my Tampa Bay Lightning. The Avalanche won 7–0 and went on to win the Stanley Cup.

    Two facts my son reminds me of constantly.

    A few weeks ago, he told me he’s been practicing hockey every day. Because that’s one of the things we always talk about when people eventually make it to the NHL—how much work they put in before anyone noticed.

    He asked me whether he should be a player or a goalie.

    He’s been wearing his Avalanche jersey again. Drawing players. Talking about teams. He understands that he might not get to choose which team signs him.

    Now I have to talk to him again.

    That’s the hard part. Not the safety. Not the medical reality. The sense that something meaningful may be slipping out of reach.

    I ask myself whether I’m wrong for not letting him live in the fantasy of it. Whether I should just let it sit there, untouched.

    But he’s sixteen. And I don’t want him chasing something that can’t hold him safely. I want him chasing something that asks a lot of him. Something that’s still hard. Something that still matters. But something that’s possible.

    Working toward an NHL career isn’t something he can do safely. But there may be other ways for hockey to remain part of his life. Other paths that keep the game close.

    I don’t need those paths to replace his dream. I just need them to exist.

    This isn’t a conversation I can rush. Or solve. Or make painless. It’s something I have to sit with him in, and return to as he grows and changes.

    I know I’m not the one who set these limits. I know where they come from.

    All I can do is stay with him as he bumps up against them, and not look away.

  • Finding My Footing

    Finding My Footing

    I didn’t notice the ground at first.

    There was no moment where things clicked into place. No deep breath followed by relief. No sense that I had made it through something. If anything, it was the opposite. The days just stopped surprising me in quite the same way.

    That’s how footing arrived.

    After a year where everything felt unstable, predictability began to creep back in. Not because life got easier, but because fewer things changed from one day to the next. The shape of my days started to repeat. Mornings followed a familiar pattern. Appointments landed where I expected them to. Fewer decisions felt urgent. Fewer moments demanded that I brace for impact.

    It didn’t feel like progress. It felt quiet.

    I noticed it first in my body. My shoulders weren’t as tight. I wasn’t flinching every time my phone buzzed. I slept a little more, not well, but better than before. My body figured it out before my mind did. Something had shifted. The ground wasn’t solid, but it wasn’t moving under my feet every time I stepped.

    That’s when I realized I was finding my footing.

    Not everywhere. Not all at once. Just in enough places that I wasn’t constantly correcting myself mid-step.

    A lot of that steadiness came from the things that didn’t move.

    My son’s needs didn’t pause while everything else changed. Neither did my goddaughter’s. School still started at the same time. Appointments still had to be made and kept. Medications still needed to be managed. Meals still needed to happen. Dogs still needed to be walked.

    There was no room to wait for clarity.

    Parenting didn’t provide answers, but it provided structure. It gave the day edges. It gave me somewhere to put my weight. Showing up wasn’t heroic or meaningful in the way people sometimes describe. It was necessary. It was grounding.

    Some things didn’t shift. I built around them.

    That responsibility didn’t make life lighter, but it made it steadier. It pulled me out of my head and back into the day in front of me. It narrowed my focus in a way that helped. When everything else felt provisional, the kids anchored the present.

    Finding my footing didn’t mean feeling safe. It didn’t mean feeling confident. It didn’t mean believing the worst was over.

    It meant knowing where I could stand.

    There are still plenty of places where the ground feels uneven. There are still unknowns that sit just outside the frame of my days. There are still moments where I feel the urge to brace, to anticipate, to prepare for something I can’t name yet.

    But I’m not slipping the way I was before.

    I’m not steady everywhere. But I know where the ground holds.

    For now, that’s enough.

  • The Lost Year

    The Lost Year

    This has been an extremely difficult year.

    Not difficult in a single, dramatic way.

    Difficult in the slow accumulation of loss.

    The kind that doesn’t arrive all at once, but keeps showing up until you realize you’re standing in a year that no longer resembles the one you started in.

    My father passed away this fall.

    It was slow, and then it was fast. Months of watching a body fail, followed by an ending that still came as a shock. His world had grown smaller. His body no longer cooperated. His mind, at times, betrayed him. He was unhappy in ways that couldn’t be fixed.

    His death brought grief. And guilt. And the familiar questions that arrive uninvited:

    Should I have spent more time? Should I have been more patient? Should I have done something differently?

    It also brought relief. And that’s harder to admit out loud. Relief that he wasn’t trapped in a body that no longer worked. Relief that the suffering had ended. Relief that the waiting was over.

    I am grateful that we moved him closer. Grateful that my son got to know him. That he saw my son play baseball. That he showed interest in my son’s life, even as his own was narrowing. Those moments matter. They don’t cancel the loss, but they soften its edges.

    Work added its own quiet weight this year.

    For much of the year, I was in a role that wasn’t a good fit. The frustration built slowly, then all at once. Fear kept me there longer than I should have stayed. Responsibility did too. The job search dragged on, heavy with uncertainty. I eventually landed somewhere new, which brought some relief—but even that has continued to shift. The year ends without the sense of stability I hoped for.

    My son still hasn’t seen the benefits we were hoping for from DBS. In fact, he’s having more seizures now than he was at the beginning of the year. When you’ve lived with uncertainty for this long, you’d think it would lose its power. It doesn’t. Each setback still lands hard.

    My goddaughter’s health has changed as well, requiring more care, more attention, more presence. The needs don’t slow down just because you’re already stretched thin.

    There have been other changes this year, too. Big ones. The kind that rearrange the shape of your life without asking permission. The kind that leave you trying to find your footing in a version of the future you didn’t expect to be standing in.

    This year can’t end soon enough.

    It feels like a year of subtraction. A year where things were taken faster than they could be replaced. A year where even gratitude felt heavy, like another thing I was supposed to hold carefully and do “right.”

    And still, some things remain.

    My son.

    My goddaughter.

    My dogs.

    My health.

    A few friends.

    A job. Insurance. Shelter.

    I don’t list these things to balance the scales. They don’t erase what was lost. They just exist alongside it.

    I’ll carry them into the new year. I’ll keep showing up for the kids. I’ll keep working toward better outcomes where I can, and accepting limits where I can’t. I’ll keep looking for steadier ground.

    This year feels like the floor.

    Not the ceiling.

    Next year isn’t about rebuilding what was lost. Some things can’t be rebuilt. Some things shouldn’t be.

    Next year is about making something new.

  • Friendship and Resilience: One Link at a Time

    Friendship and Resilience: One Link at a Time

    I’ve never been good at maintaining relationships beyond the present moment.

    I know people who have maintained friendships since grade school. Grade school. They became friends before they were teenagers and still talk to each other twenty or thirty years later.

    I know other people who do yearly trips with college friends. Trips. They board an airplane and fly to another location to play golf, gamble, or whatever it is that friends who have known each other for twenty years do.

    These are such foreign concepts to me.

    After each move in my life, I started over. Friends from our first apartment in Connecticut became memories once we moved across town. When we moved to Florida, it was like starting over, except for periodic visits from family to keep that connection alive.

    After I walked across the stage to get my high school diploma, the four years of bonds that I built were broken and discarded. At 19, I joined the Army and left Florida behind, too, once I left for basic training. I spent my entire enlistment overseas, and trips home were infrequent. Since my neighborhood friends were away at college, they, too, became artifacts of a different time.

    The first person who spanned multiple stages of my life was my friend from the Army who looked out for me when I arrived in Germany. She was pregnant when I arrived, and when she had her daughter, I became a de facto godfather and uncle. She left the Army and returned home before I did, but after my enlistment ended and I returned to Florida, I would visit her and her family periodically.

    For the few years I spent in Florida after the Army, I started another life as my professional career began. I was part of a group of young, single professionals, and we became friends and spent time together outside of work, too. There were friendships, community, and dating, but I set those aside when I took the opportunity to leave the heat behind and move to Colorado.

    Colorado was another opportunity to start over. I didn’t know anyone, but my friend from the Army became a flight attendant, and Denver was a hub for her airline. We were still in contact, and when she had a layover in Denver, we were able to see each other. I still occasionally visited her family and also joined them on a trip to China.

    Eventually, though, even that relationship started to fade. She would get married, and so would I, and I was grateful to have her at my wedding before our lives went in different directions.

    After my son was born, I felt like things might be settling down. I had a group of friends who were married and starting families, and we developed solid friendships as the kids grew up together. For a few years, especially with one of the families, it felt like the kind of lifelong bond that I have seen others have. But a job offer across the country pulled us from that life and dropped us into a new one where we knew no one and had to start over.

    Leaving our friends this time was tough, both because of the connection we created and because we were alone and isolated when my son began having seizures. For a few years, every relationship was transitory. Doctors, nurses, and staff were the most consistent people in our lives. My son struggled to maintain regular attendance at school, which left him as a constant outsider as the other children formed bonds. He longed for his friend in Colorado, the last stable friendship he had. We were lucky for a few years to travel back to Colorado and spend time with them, but it wasn’t the same.

    Even after he was more stable, his health and the constant appointments made his attendance spotty, further impeding his ability to form friendships. It seems as if just when we would find a sense of routine and normalcy, the universe would use its cosmic hand to shake things up.

    The pandemic hit and separated the world. The move to an online school, separate from the public school his friends attended, created more distance. Finally, as the world opened up and we found a school we believed was right for him, we left the city for the suburbs, and those tenuous relationships we struggled to maintain eventually faded.

    In some ways, this latest iteration of our life feels settled. The teachers and community at my son’s school provide structure and consistency, which helps form strong relationships. However, on a personal level, at a smaller scale, it feels temporary.

    Transitory.

    The people I see every weekend at tennis disappear when the courts close until we pick it back up in the spring. We see similar faces every summer during baseball season, but only during the games and never beyond the playoffs, while most of the players attend the same school and have a year-long connection. It’s wonderful to have those circles to return to, but they are scattered rings rather than connected links in a chain.

    More and more, it feels like those links close as they fall off the chain, preventing them from ever being reattached. My son is done with baseball, forever removing that link from the chain. He’s had close classmates ghost him after leaving the school, damaging those links beyond repair. His best friend from the past two years is transferring to a public school, so they won’t see each other every day, which leaves that important link hanging precariously close to being disconnected.

    But maybe the goal isn’t to build one long, unbroken chain.

    Maybe what matters is the ability to keep adding new links — to connect with the people who come into our lives when they do, to hold onto them for as long as we can, and to be grateful for each link while it’s there.

    My son already knows how to do that. He connects deeply, he feels the hurt when a link breaks, and then he finds a way to add new ones. In his own way, he’s building resilience — and showing me what it looks like to keep building a life, one link at a time.

  • Lucky Penny

    Lucky Penny

    We’ve been spending some time in Chattanooga to support our goddaughter as she recovers from surgery.

    My wife and I have been taking turns spending time with our goddaughter at the hospital, and her grandparents have been extremely kind, bringing our son on various adventures to the aquarium, shopping, and restaurants.

    One afternoon, her grandparents were at the hospital so my wife, son, and I decided to explore downtown and find a fun activity. We parked the car and stepped into downtown Chattanooga.

    We lived in downtown Philadelphia for years, so when I use the word “downtown”, it’s technically true. However, it’s like coming from Colorado and hearing people on the East Coast use the word “mountain” to describe the adorable hills they ski down.

    But downtown Chattanooga checked a lot of boxes. It had a combination of southern eateries and national chains, obscure shops and traditional retailers, and a blending of locals and tourists on the sidewalks.

    We parked the car in a lot and stepped onto the sidewalk, adding ourselves to the mix. We had made it half a block before we saw another feature that Chattanooga had in common with other city centers.

    As we passed a storefront, we saw a person in need asking if we had any change we could spare. I awkwardly felt in my pockets and found nothing. I apologized and he nodded the way you would expect a person who has been told the same thing hundreds of times a day would do and we continued down the sidewalk.

    After a few more steps, my son stopped and turned back to the man. I watched as my son reached into his pocket and handed something to the man. I didn’t see what my son said, but I did hear the man say, “Thank you, but I can’t take your lucky penny.”

    My son held his hand up in the universal “I’m not taking it back; it’s yours now” gesture and stepped back. The man looked at me and then back at my son, a small but genuine smile breaking through the weariness on his face.  “Thank you,” he said again, softer this time.

    My gaze shifted to my wife who was nearly in tears. I felt the same way.

    As parents, we often look for signs that we’re making the right choices for our children. We want them to have opportunities to be successful and to grow up to be kind, caring individuals. We want them to have better than we did and be better than we were. But we don’t always get that validation, especially when we’re navigating the challenges that come along with their unique needs.

    I spend more time assuming that I am making the wrong choices than acknowledging the signs that my son is on the right path. I worry that my trauma will prevent me from being who I need to be for him or that my insecurities will be passed down to him, like my brown hair or love for video games.

    Then there are moments like this. Moments that force me to stop. Moments that open my eyes. Moments that show me who he is.

    We continued up the block until we found a place to sit. My wife dug into her purse and found a little cash. She gave it to our son, and I followed him up the block to where the man was still seated. My son handed him the folded-up bill and, in return, received a thank you and a handshake. I nodded to the man when he looked at me, and he gave me a look of deep appreciation.

    Parenting is a journey filled with doubt, but also these small, brilliant flashes of clarity. Watching my son that day, I saw the kind of person he is becoming. And for a moment, all the worry faded, replaced by gratitude—because if nothing else, he is growing into someone who leads with his heart.