epilepsy dad

Tag: family

  • 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.

  • Uncertainty, Fear, and Hope

    Uncertainty, Fear, and Hope

    “It’s not the unknown itself that paralyzes us—it’s our fear of what it might hold.” – Unknown

    In life, there is always uncertainty.

    Will my car start? Will there be traffic? Will I make it in time?

    Is this milk bad? What will happen if I drink it anyway?

    Most of the time, we aren’t aware of how much uncertainty there is. We focus on the present moment and the task at hand. Our awareness and perception are constrained to what is in front of us.

    That’s a good thing. It would be terrifying if we were constantly aware of just how much uncertainty there is. We’d be paralyzed by fear—fear of the unknown, of what the future might hold, and of how little control we truly have.

    “When everything is uncertain, we crave control. But clinging to certainty can keep us from growing.” – Unknown

    Sometimes, though, uncertainty is impossible to ignore. Sometimes, it compounds until it becomes big enough to have a gravity of its own. And sometimes, it collapses on itself like a black hole that consumes every other thought.

    Uncertainty about my son’s future. Uncertainty about my career. Uncertainty about the health of a loved one. Financial uncertainty. Relationship uncertainty. Each can be daunting by itself and occupy my thoughts. But, together, there can be nothing else. No other thought can escape.

    When uncertainty dominates our thoughts, it can be overwhelming. In these moments, it’s easy to focus on the negative, like the discomfort of not knowing and the worst-case scenarios that could unfold.

    I’ve always tended to wait for the other shoe to drop, focusing on the rare moments when it does rather than the many times it doesn’t. This pattern is known as negativity bias—the tendency to give more weight to negative experiences than to positive or neutral ones. Even when good outcomes are more common, the few bad ones loom larger in my mind, especially during times of uncertainty, when the unknown consumes my thoughts.

    It’s hard to remember that uncertainty isn’t always a bad thing because it’s difficult to imagine positive outcomes when all you see is the unknown.

    Uncertainty is the refuge of hope.— Henri Frederic Amiel

    I like this quote because it shifts perspective. While uncertainty can be unsettling, it also allows space for hope. The unknown holds the potential for something better, new opportunities, healing, and change.

    I try to remind myself of this when fear takes hold. When everything feels uncertain, there is still room for hope. And sometimes, hope is enough to keep moving forward.

  • The Real World

    The Real World

    This is the true story…of seven strangers…picked to live in a house…(work together) and have their lives taped…to find out what happens…when people stop being polite…and start getting real…The Real World.

    Around the time I graduated high school, MTV launched a show called The Real World. The first season followed seven young adults living together in a New York City loft, documenting their interactions, conflicts, and discussions about race and identity. It was marketed as an unscripted glimpse into young adulthood, but in reality, The Real World was anything but real. The show was heavily edited, and its cast was carefully selected to generate conflict and drama. The environment was artificial—a manufactured version of adulthood designed for entertainment rather than truth.

    Lately, I’ve been thinking about that contrast between reality and expectation as we navigate our own version of The Real World—helping our son transition into adulthood. We’re working with a transition counselor to understand his path forward, and it’s forcing us to confront some hard realities about his future.

    This process has resurfaced unanswerable questions and concerns about how much support our son would need to get through his daily life. Will he remember to take his medication? Does he know when to do laundry? Will he remember to turn the stove off? Would he be able to finish chores and tasks without getting distracted?

    The scripted version of adulthood—the one where you turn 18, go to college or get a job, and move into your own place—isn’t the one we’re working with. Instead, we’re piecing together a different kind of future shaped by his abilities, challenges, and the resources available to help him live as independently as possible.

    The good news is that there are benefits and programs designed to support people like him. However imperfect, there are systems in place that can help him build a life. A life where he can find his own sense of independence, identity, and path.

    The bad news is that these systems and benefits are the same ones under attack by the current administration. Social Security, Medicare, Medicaid, the Department of Education, and support for non-profits are all in danger of being eliminated or losing some or all of their funding. The uncertainty of the future of these vital support programs directly correlates with the uncertainty I feel about my son’s future.

    Ultimately, this is the real world that I am thinking about. Not the one made for television, but the one that exists where there are no cameras. A world that is not made for people like him. A world where, one day, he’ll have to live without us, whether those support systems exist or not. What that world looks like and what his quality of life will be in that world is what we are fighting for.

    It’s not scripted.

    It’s not edited for drama.

    It’s just real.

  • Who I Am Meant to Be

    Who I Am Meant to Be

    Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.

    Bernice Johnson Reagon

    When my son started having seizures, I was paralyzed. I was afraid. I was helpless. I was there physically but didn’t know how to be emotionally present for him or my wife. I had disassociated from the situation, leaning into my job and the mechanics of keeping a household running. My wife became the full-time caregiver in a new city without any family to support her through my son’s most challenging times medically, intellectually, and emotionally.

    After years of therapy, I still struggle with the semantic debate about whether to say I was afraid or I felt afraid. But looking back, I think I was both because while those words described how I was feeling, they also described my actions. And inactions.

    It was an impossible time, and I committed to doing better. Over the years, I became a better partner and father, but I had a lot of work to do to repair the damage those years did to the relationships in my life.

    A few years ago, my wife had health challenges that limited her capacity for physical activity. Rather than distancing myself from the situation, I tried to lean in. In addition to going to work, I took on most of the responsibilities around the house. I thought showing her I could care for her would be enough. But the same lack of emotional connection persisted. She was cared for but wasn’t receiving what she needed and deserved most.

    Being the parent of a child with special needs is challenging enough. Coming into the situation with trauma and fears makes the situation infinitely more complex, dangerous, and demanding. I know families who have been ripped apart by it. I also know families who have become stronger, and I wanted to be one of those families.

    Rather than paralyzing me, I want these challenges to help me discover who I can be. I want to be the type of person who can show up and be present. I want to be a person who can be vulnerable when the vulnerability is needed. I want to be the type of person who makes a person feel seen who is struggling, or in pain, or needs to feel seen. I want to be the type of person who isn’t afraid to be seen.

    I still have moments of doubt, of fear, of wanting to retreat into old patterns. But each time, I remind myself that being present, vulnerable, and truly showing up is a choice. And every time I make that choice, I get closer to the person I want to be.