epilepsy dad

Author: Dave

  • 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.

  • 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.

  • The War on DEI Is a War on My Son’s Future

    The War on DEI Is a War on My Son’s Future

    Like many parents of children with epilepsy and neurodivergent diagnoses, my wife and I have spent years advocating for accommodations that help our son navigate a world that isn’t built for him.

    At times, it felt as if it was us against the world. We would have to document, explain, and justify every request to provide our son an opportunity to thrive, not merely survive. While our journey has primarily been uphill, we have endured because our son deserves the same opportunities as everyone else.

    It was encouraging to see Diversity, Equity, and Inclusion (DEI) initiatives take a more critical role in our society in the last few years. These initiatives create environments where all individuals—regardless of race, gender, disability, or background—have equal opportunities to reach their full potential.

    Many DEI initiatives specifically address disability-related barriers, such as:

    • Ensuring accessible workplaces and schools
      • Promoting inclusive hiring practices
    • Providing reasonable accommodations (e.g., flexible work arrangements, assistive technology)
    • Educating organizations on disability awareness and reducing stigma

    It made me feel like our uphill journey might level off and that these programs might help relieve some of our struggles and fears about our son’s future.

    But then, Trump and MAGA happened.

    In the first few weeks after the new administration took over, it has ordered the rollback of DEI policies meant to open doors that were unfairly closed, falsely equating diversity efforts with discrimination. The ACLU wrote, “In his first few days, President Donald Trump is undertaking a deliberate effort to obfuscate and weaponize civil rights laws that address discrimination and ensure everyone has a fair chance to compete, whether it’s for a job, a promotion, or an education.”

    Without facts, they have blamed DEI initiatives for the devastating fires in California and, most recently, for the tragic crash between a military helicopter and a passenger jet in Washington, D.C. In a press briefing, they specifically called out part of the FAA’s DEI plan that included hiring people with disabilities, including neurodivergence and epilepsy.

    Let’s be clear: Accommodating neurodivergent people did not cause a plane crash, just as supporting people of color or the LGBTQ community did not start a wildfire.

    But the messaging, pandering to the MAGA base, aims to create an environment where rolling back protections and opportunities for communities who have been discriminated against, marginalized, and disenfranchised for so long becomes acceptable, even necessary.

    The Trump administration’s latest rollback of DEI initiatives isn’t just another political move—it’s a direct assault on people like my son. And it’s not limited to government institutions. By removing federal funding for DEI initiatives and rolling back the requirement for companies doing business with the government to have standards that address and prevent bias, the administration is bullying corporations to abandon or alter their DEI programs.

    DEI initiatives aren’t some abstract concept, and these aren’t abstract policy changes. This administration’s actions aren’t just about politics. They’re about real people—our children, families, and futures. They’re about my son’s future. I’ve fought too hard for his right to an education, to be safe at work one day, and to live in a society that values him as a complete person.

    For families like mine, these programs are lifelines, offering hope and opportunity in a world that often feels stacked against us. Rolling back these protections isn’t just a policy change; it’s a betrayal of the progress we’ve fought so hard to achieve. My son and countless others like him deserve a future where they are valued, included, and given the chance to thrive. We cannot let these initiatives be dismantled without a fight. As parents, advocates, and allies, we must stand together, raise our voices, and demand a society that embraces diversity, equity, and inclusion.

    The stakes are too high to stay silent.