epilepsy dad

Tag: family

  • 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.

  • On Grandfathers

    On Grandfathers

    My grandfather was one of the most influential people in my life. He passed away when I was only 18, although we didn’t see each other as often after I moved away with my parents 5 years prior.

    I didn’t have enough time with him.

    He worked at a Pratt & Whitney factory. I was fascinated by the aircraft his engines powered into the sky, and every year, he would bring me a company calendar highlighting them. I would hang the calendar on my wall, marvel at the specifications, and build models of the aircraft to show him.

    My sister, cousin, and I would spend a lot of time at my grandparents’ house, especially over the summers. We’d play in the yard he kept groomed with his riding lawnmower, which he would sometimes let me drive. We’d climb the apple trees overlooking the garden he had made for my grandmother. And I’d rest in the cool basement with him, watching golf on the old television until we both fell asleep.

    There were times when he worked the night shift, and when we spent the night, we’d watch him go to work after dinner and come home in time to have breakfast with us. Despite his inconsistent schedule, I remember him consistently making time for us.

    He instilled in me the importance of hard work and education, and he’s part of the reason I continued to get my bachelor’s and master’s degrees even after I had already started my career without them.

    I’ve been thinking about him because my dad passed away recently, and it made me think about the relationship my son had with his grandfather.

    Growing up, my dad (technically my stepdad, who I called “dad” as soon as he married my mother when I was 11) wasn’t especially warm. He was kind, and he was smart. I learned how to fix bicycles and do basic home repair and electrical work because he invited me to help him on projects around the house. But there was always an emotional distance. There were few hugs and no “I love you.” But he was a good dad and provided a good life for us.

    When my son was born, that started to change. We would visit my parents in Florida a few times a year, and my dad was always genuinely happy to see my son. He would greet us at the airport and welcome a big hug from his grandson. We would stay at their house and spend time together. I have pictures of my dad watching my son jump and splash in the pool and also following my son along a jelly bean trail left by the Easter Bunny. My dad was thrilled with every present and card my son gave him, as if each was the best gift he had ever received and was exactly what he wanted.

    As my son got older and after he was diagnosed with epilepsy, I could see my dad opening up. My son’s challenges cracked open a piece of my dad that even he didn’t know was there. He would always tell me how well my son was doing, how amazed he was at what my son could do, and how much he wanted my son to be okay.

    We moved my parents to live near us a few years ago. By then, my dad’s health had started to decline, both physically and mentally. But he maintained the same excitement to see us and his grandson every time we visited. We would have holiday dinners together, and while it was different from when I would go to my grandparents when I was young, it was a time for my son to spend time with his grandparents, too.

    Even though it got more challenging for him to get around, we took my dad to a few of my son’s baseball games. I’m not sure he always knew which player was his grandson, but he was so happy to be there and always told my son how proud of him he was. When I would stop by after work, the conversation with my dad would always turn to asking how my son was doing and how big he was getting.

    “He’s not a kid anymore,“ my father would say. “He’s a grown man.”

    Somewhere along the way, my father started to say “I love you” to us. At first, it was in response to us saying it to him. But then, he started to offer it himself.

    I don’t remember my grandfather saying “I love you.” We weren’t a big “I love you” family, so I thought it was normal. He would tell me he was proud of me and other, safer, phrases, so I didn’t know what I was missing.

    That’s one of the changes we made as parents. My wife brought that into the family, and I am grateful she did. I tell my son that I love him at school drop-off, randomly throughout the day, and every night before he goes to bed. It was nice to extend it to my parents so that my son could also receive it from them.

    The last time my son saw his grandfather, he and I had stopped by to visit. My dad looked old and tired and had fallen asleep, slumped to the side in his recliner. At one point, he woke up, saw us, and smiled. He asked about baseball and commented on how tall my son had gotten.

    A week later, I sat in the same room. My dad was on a bed provided by hospice instead of his usual recliner, and he was in a deep sleep. I talked to him about the memories he helped create and how grateful I was. I spoke to him about his grandson and how well he was doing.

    That would be the last time I would speak to my dad.

    A few days later, he was gone.

    Loss has a way of making us reflect on what truly matters. For me, it’s the time we have, the love we show, and the memories we leave behind.

    I am grateful that my son got to have time with his grandfather, especially these last few years. He got to see a man who, over time, learned to express love in ways he hadn’t before. He got to hear his grandfather’s pride, feel his warmth, and know, without question, that he was deeply loved.

    And now, he’ll carry those memories with him, just as I carry my father’s and my grandfather’s with me. In that way, love never really leaves us—it simply finds new ways to be passed on.

  • Patterns

    Patterns

    I sat in the chair at the side of my goddaughter’s bed in the hospital. She had major surgery a few days prior and was recovering in the intensive care unit.

    As she slept, her body continued the healing process, connected through tubes and wires to various machines delivering her medicine and monitoring her progress. A screen displayed her heart rate and breathing rate with regular peaks and valleys of rigid blue and green lines. Rhythmic tones broke through the muffled sounds of the hallway outside.

    There is something familiar about the screens and the sounds of a hospital room. With my son, we’ve spent months at a time in the hospital. Eventually, the sounds faded into the background, like living near a highway or railroad for too long. It is then the absence of those sounds that I notice.

    I stared at the screen and watched the lines move left to right before starting again on the left and overwriting the evidence of the past. At times, the lines perfectly overlapped the pattern of the one before. At other times, the peaks were slightly shifted forward and gave the appearance of a wave being animated to the left.

    I watched one of the many intravenous drips. Three drops. Then another three. Then three. Then four. Three. Three. Three. Four. Every fourth cycle, the pattern would change to three, three, four before starting the original sequence again.

    Observing these patterns was soothing. It made me feel like she was safe. It made me feel that the universe was continuing in an orderly fashion with every molecule and atom precisely in its expected state and that the cells in her body were repairing the intrusion of the surgeon’s instruments.

    The patterns represent order after chaos, stability after uncertainty, and calm after a storm. They bring a sense of control. They bring peace.

    As welcome as this feeling was, I didn’t expect to find myself experiencing it again. I thought the first time I felt it, after the doctors were finally able to lift my son from status and stabilize him when we thought we might lose him, would be the only time. I remember sitting in the dark hospital room without the constant flow of doctors, nurses, and therapists and letting out a breath of relief. It was probably the first deep breath I had taken in months.

    I would feel that feeling again many times as my son’s condition proved challenging to manage, and we found ourselves back on the neurology floor of the children’s hospital. Each stay started in a panicked attempt to wrestle back control from his seizures, and each stay ended with another deep breath and the thought that we had gone through an ordeal for the last time.

    But there is no last time for us. Whether it’s from surgeries or complications for our son, for my aging parents after a stroke or a fall, or for our goddaughter as she attempts to find a way forward to better health, we will always find ourselves back in the hospital, surrounded by the monitors and sounds.

    When we find ourselves there, listening to the sounds of the machines, we will seek out the moments of calm, stability, and peace that come from the comforting presence of these patterns. While we can never know what will happen next and have little control over the outcome, we can choose how we experience it.

    As I sat beside my goddaughter, I chose to embrace that peace.

    Because in that moment, it was enough.

  • The Weight of Hope

    The Weight of Hope

    I was having a conversation with my goddaughter who recently underwent surgery. The topic of hope came up, and how it was hard to have hope when there is a history of disappointment in the outcomes.

    I have often felt the same way. It’s been difficult in the 10 years that we’ve been navigating our son’s epilepsy to always maintain a sense of hope. We’ve tried multiple medications, the ketogenic diet, and he’s had both VNS and DBS surgery. But with every medication, diet, and device, he continues to seize most days, in addition to the other challenges that he faces mentally, physically, and emotionally.

    It made me think of the notion that “hope floats.” Hope bubbles up to the surface and can sit on the water, no matter how hard things get. It can be like a lifesaver, keeping the body afloat. But when the vessel is full, hope rises to the surface and floats away, falling over the edge into oblivion.

    I’ve come to believe that hope is dense and heavy, and why carrying it can sometimes be exhausting. There were times—after another failed medication, after another seizure-filled night—when I wanted to let go of hope completely…to just set it down and go on without it.

    But I learned that the people around me can carry some of that weight, and that is what I and the people around her who love her will do for you, I told her. We will carry hope, and we will fill your cup when you need it.

    “But what if my cup is full of other things?” she asked.

    I nodded in understanding. When hope is absent, other things will fill that cup. Fear, trauma, hopelessness, despair. It can feel like there is no room for anything else.

    The good news about hope, I explained, is that it’s denser than whatever else might be in the cup. When we pour in hope, it will displace and push the other things out.

    Hope isn’t always easy to carry; sometimes, it feels more of a burden than a lifeline. But we don’t have to carry it alone, and when we are able, we can carry it for the people we love.

    No matter how heavy it feels, hope is still worth carrying.