epilepsy dad

Tag: fatherhood

  • There’s All Kinds of Success

    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

    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.

  • Fine.

    Fine.

    On days when I work from home, I like to pick my son up from school. I sit in the line of cars slowly making their way to the exit and wait for the teacher to send him out.

    As he walks toward the car, he looks exhausted most days. School asks more of him each year—more performance, more endurance, more emotional regulation, and more social navigation.

    He throws his backpack into the back of the car and plops down in the front passenger seat.

    “Hi, pal. How was school?” I ask.

    “Fine.”

    That’s it.

    Fine. One word. One syllable. Full stop.

    “Well, what did you do in…” and I’ll rotate through his subjects.

    Sometimes I get a short answer, but most of the time he says he doesn’t remember.

    As a parent, it’s frustrating. I can see that he’s tired, but I don’t want him to think that—by not asking how his day went—I don’t care. I genuinely want to know how his day was, what he did, and what he learned. I’m curious about his experiences and want to understand more about what he does and how he sees the world.

    Additionally, my son struggles with his memory, so I feel pressure to ask the question right away—for a chance to hear any details before they fade. If I don’t get an answer, it feels like I’ve lost the opportunity to connect with him. It becomes an unmet need when his answer feels like it shuts the door.

    But that’s my need.

    His need, after working so hard all day just to get through it, is not to engage in that moment.

    I recently read an article about how school is harder for kids today, and something clicked.

    It may seem simple, but a genuine answer to the “how was school today” question requires considerable effort and decision making to synthesize information from a busy day.

    When my son gets in the car, he’s not just carrying books in his backpack. He’s carrying the weight of every demand he had to meet. He’s carrying the exhaustion from seizure-disrupted sleep. He’s carrying the side effects of his medication. He’s used up every bit of energy just to make it through the day.

    “Fine” isn’t a brush-off. It’s an exhausted plea for peace.

    The article offered a simple but powerful suggestion:

    Consider the purpose. Ask yourself whether you want to gather information or simply connect with your child.

    As much as it feels urgent to gather information about his day—as a way to connect—it often does the opposite. It leaves me frustrated and leaves him more drained, trying to process my question, reach into his memory, and find the right words. Instead of connecting, in those moments, we drift farther apart.

    My goal, always, is to connect with him.

    I want him to know I’m happy to see him. I want him to know that I feel lucky to be able to pick him up. I want him to know that I see him. I want him to know that I appreciate how hard he worked to make it through the day and that I hope he’s proud of himself, because I am.

    Instead of starting with a question that requires him to do more work, maybe I will start with a statement. Maybe one of those.

    Or maybe I’ll just tell him how lucky I am to be his dad.

  • Setting My Son Up for Failure

    Setting My Son Up for Failure

    The other day, I stepped into my son’s room.

    As part of his daily routine, he’s supposed to make his bed, clear off his floor and desk, put away clean clothes, and bring his dirty cups and laundry downstairs. In my head, it’s a simple list—something that should only take a few minutes if he stays on top of it. After all, I’ve been doing those chores and more for a long time.

    So when I walked in and saw his bed unmade, things scattered on the floor, and dirty clothes thrown into the closet, I became frustrated. I pointed out what he missed and left him to fix it.

    This has become the pattern more often than not. Sometimes, I go back into the room two or three times to point out what still isn’t done. My frustration builds each time.

    The thing is, I know he’s not lazy, and I know he’s trying. He has trouble staying focused and on task. So when I leave him to figure it out on his own and keep coming back with corrections—even if I think I’m helping—I’m creating a spiral. He winds up feeling frustrated, too. Worse, it can make him feel like a failure.

    Part of the world we’re navigating is learning to manage our expectations. In areas where we know he struggles—like reading—we’ve been given guidance on how to set the bar. We can offer support, recognize his effort, and celebrate what he accomplishes.

    But I forget to apply that same mindset when a task seems “simple” to me or when I think it’s something he should be able to do. That’s especially true with everyday life skills like tidying up, cleaning after himself, or remembering to shower. I get so caught up in what it might mean if he can’t do those things that I lose sight of how it must feel to him that they’re difficult in the first place.

    My experiences aren’t his experiences. What seems easy or hard to me doesn’t always match how he perceives the same task. And when I forget that, my intention to “teach him responsibility” ends up doing more harm than good.

    It’s easy to celebrate accomplishments when the expectations are clearly set—or when he does something I know I couldn’t do myself. When he solves a difficult math problem, or stands in the box with two strikes and gets a hit, we cheer him on and pat him on the back.

    It’s much harder to pause my fear and frustration in the everyday moments. But those moments matter, too. Because even if we’re quick to celebrate his wins, how we respond to his struggles will shape how he sees himself. That’s one of my experiences I explicitly don’t want to pass on to him.

    But, as they say, awareness is the first step.

    That day, after I saw what was left undone, I didn’t just point it out again. I sat on his bed and asked him to sit next to me. The look on his face told me everything.

    “It must be really frustrating,” I said, “when I come in here and tell you the room’s not done, and then leave you to figure it out.”

    “Yes.” His head and shoulders sank lower.

    “I’m really sorry I didn’t recognize that sooner. How’s this: What if we do your room together? Every day, after school, you and I will come in here and get it done. That way, you’ll see what I mean when I ask you to clean it, and you won’t be left alone to figure it out. Would that help?”

    His head lifted, and I saw him breathe a little easier. “Yes,” he replied.

    “Let’s do it,” I said as I stood and helped him to his feet.

    It hasn’t been long, but I can already see the difference in his attitude when we do it together. The task may still be hard—but he’s not doing it alone.

    It’s not about lowering the bar. It’s about meeting him where he is. And that makes all the difference between setting him up for failure and setting him up for success.