epilepsy dad

Tag: epilepsy

  • 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.

  • Shame, Consequences, and Leading with Love

    Shame, Consequences, and Leading with Love

    “Come with me,” the security guard said.

    I was ten years old.

    My friend and I had ridden our bikes to a department store a few miles from my house and walked in with a brown paper bag. We headed to the toy aisle and filled our bag with Transformers and other loot, unaware that the security cameras were tracking us the whole time.

    It was just as I stepped onto the pressure pad to open the automatic door that our heist was thwarted, and we were escorted back into the store, up a stairwell, and into the security office.

    The security guard, an off-duty cop, rewound the security tapes and showed us his view of our activities. I watched myself from multiple angles walk shelf to shelf, pick an item, and place it in the bag. It was terrifying and embarrassing.

    The guard asked us for our information and, when he heard my last name, he paused. “Wait, ” he said. “Is your dad a cop?”

    My heart stopped. Every muscle in my body froze, but I managed to eke out a soft “Yes, sir.”

    My captor let out a hearty laugh. “Oh, he’s going to love this,” he said, as he picked up the phone to call the police.

    My friend and I were taken to the police station in the back of a police car, our bikes tucked away in the trunk. I thought about what my father would say. I thought about having to tell my mother and my stepfather. I thought about going to jail. It was and still is the longest car ride of my life.

    At the station, my friend and I were separated into different interrogation rooms. I’m not sure if it was intentional, but the lighting allowed me to see the silhouette of my father on the other side of the one-way mirror. The officer in the room with me asked me questions and created a very Scared Straight experience that had its intended effect.

    My father didn’t say much to me as he drove me home. I remember him telling me to have my mother call him as I stepped out of the car, and I walked up the stairs to face the consequences. Except no one was home, and I had to wait an agonizingly long time, staring out the front window, until I saw her car pull into the driveway.

    Immediately, every emotion spilled out of me, and when the door from the garage opened, so did a stream of words explaining what had happened.

    At the time, the consequences were predictable, if exaggerated. I couldn’t hang out with my friend again. I was grounded and lost some privileges for an unspecified amount of time. But the worst consequences were the feelings of guilt, shame, and fear that permeated every cell in my body.

    I wasn’t told that I wasn’t a bad person, or that people make mistakes. I wasn’t made to feel like my actions wouldn’t define how I felt about myself for the rest of my life. I wasn’t comforted, and my feelings weren’t acknowledged.

    Instead, those feelings of guilt, shame, and fear were amplified. My parents were mad and disappointed. It was one of the worst things that I could do to them. Their feelings were the only ones that mattered, and I was left to hold and figure out mine. I felt very alone.

    At ten years old, figuring out my emotions by myself wasn’t possible, and so I carried that guilt, shame, and fear for the rest of my life. To this day, I’ll sometimes swing a bag of purchases through the metal detector ahead of me so that, if it does alert, everyone will know it was the bag and not me.

    I think about that experience when my son makes a bad choice. I try to find that line between consequences, learning, and growth, without internalizing a destructive self-image filled with guilt and shame. Most days, it seems impossible, even without considering his mental and emotional challenges. And I can’t help but see myself at his age when I look at him, and that fear of doing it wrong and causing damage to him makes me feel unsure and indecisive.

    But seeing him that way also makes me think about what my younger self needed in those moments when I was teetering on the edge of emotional collapse. What did I need? What do I wish my parents had done? Can I do that for my son now?

    Often, it comes down to seeing him and asking more questions instead of projecting more statements that make the situation only about me and my feelings. It involves understanding that each of these moments has the potential to help him learn and make better decisions in the future, or shame him into destroying his sense of worthiness and self-compassion. Simply, it involves leading with love.

    Remembering that can be difficult in those big, emotionally charged moments, especially considering how they played out for me. But I keep trying. I try to quiet the echoes of my own childhood long enough to truly see my son—not just his behavior, but his needs, his struggles, his heart. And in those moments, when I push past fear and into empathy, I find the thing I needed most when I was ten.

    Not punishment. Not shame.

    Just someone who was willing to stay beside me in the mess.

    Someone who believed I was still good.

    Someone who was leading with love.

  • Here We Go Again

    Here We Go Again

    Here we go again
    Same old stuff again
    Marching down the avenue
    Six more weeks and we’ll be through
    I’ll be glad and so will you
    U.S. Army Marching and Running Cadence

    I was never much of a runner. I had the look of one. Tall and skinny, with long legs that should have made running easier. I was even a fast sprinter. But anything longer than the size of a football field, and my brain would scream at every one of my moving parts to stop.

    Imagine how much fun I had when I joined the army, where nearly everything involved…you guessed it…running. We’d wake up early every morning, head downstairs, and fall into formation. Our drill sergeant and his team would stand in front, bark out a few orders, and then my fellow soldiers and I would turn and follow our leaders, matching the rhythm of our steps to theirs, for however many miles we’d run that day.

    A few minutes into the run, one of the sergeants would begin calling out a cadence. Military cadences are rhythmic chants used during marches and runs to maintain a consistent pace, foster teamwork, and boost morale. They help synchronize movements, improve endurance, and build unit cohesion.

    They were magic. They kept me focused on the rhythmic call and response rather than the fact that I hated running, that my lungs and legs hurt, and that I should stop. Because I couldn’t stop. I couldn’t let my squad down. I couldn’t let myself down. I had to push through.

    One of the cadences, “Here We Go Again,” summed up basic training perfectly: the same grueling routine, day after day. Wake. Run. Eat. March. Train. Eat. March. Train. Eat. Chores. Bed. Every day, for 8 weeks, the same thing.

    Anytime I find myself repeating a pattern, especially a challenging one, I think of those early morning runs. I think of that need to push through, to not let my squad and myself down.

    Here we go again
    Same old stuff again

    We’re approaching one of those times. Toward the end of the school year, our son is always exhausted. He’ll have a harder time waking up in the morning and randomly fall asleep in the afternoon. Around the same time, baseball, one of the few non-school activities he still enjoys, starts demanding more energy and mental bandwidth. We also start figuring out what the following school year will look like, scheduling IEP meetings, and talking with his school and the district about our son’s challenges, needs, and potential. It’s mentally, physically, and emotionally draining on the entire family.

    Six more weeks and we’ll be through.

    Six more weeks until the school year ends. Six more weeks to push through. Six more weeks of having a routine, structure, and certainty. Six more weeks until the story that has been written ends, and there are only blank pages unless we can write down a new plan before then.

    It’s exhausting. It’s like those basic training marathon runs, where somehow we’d run in a circle but only be running uphill, defying physics, logic, and any sense of fairness. It tests our endurance and commitment. Parts of my brain are screaming to just stop.

    But we can’t stop. We can’t let our son down. We can’t let ourselves down. We have to keep going. We have to fill those pages with a plan for the next year, until we find ourselves again six weeks from the end of the school year with the same cadence echoing in my head.

    Here we go again.

    Same old stuff 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.