lifestyle Archives - Epilepsy Dad

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.

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.

On the Other Side of the Door

I could feel the tension and energy seeping under the door. I could hear the curse words through the door, some directed at the situation and others at me. I could hear pencils and books being pushed off the desk and onto the floor.

Moments before, I was on the other side of the door nudging my son to stay on task and finish his chores and homework. He had been home for about an hour and still hadn’t finished cleaning his room or completing his homework.

I pointed out the clothes, toys, and trash scattered across the floor. I showed him the overflowing trash and collection of empty soda cans that he had hidden behind the dresser in his closet and his yellow homework folder sat unopened on the edge of his desk.

It wasn’t the first time I checked in on him, and his sigh of frustration got louder each time. He would stand up and begin to clean as I left the room, only for me to return with no discernable difference in its cleanliness.

After the third time, he snapped. He sat on the edge of his bed, and every answer to my questions about his thoughts and feelings included an appropriately placed curse word.

“$*!&#! homework.”

“$*!&#! chores.”

I wanted him to have his feelings, but I knew he wasn’t in a place where he could hear me or talk about them. So, I used my years of therapy to acknowledge his anger and frustration. I offered a few pieces of advice to help him navigate and source his anger, and then I told him to come and find me if he needed help or when he was ready to talk.

That’s when I found myself on the other side of the door, listening to his sounds of anger.

Leaving the situation is often the hardest thing to do. I desperately wanted to make him feel better…to say the right thing to make his anger disappear. But I’ve learned (again, thanks to years of therapy after countless examples of trying to solve everyone else’s feelings) that it’s not how it works. I’ve also learned that staying in the situation and taking the anger, frustration, and attacks is not required in any relationship. It doesn’t serve me, and it establishes and persists a toxic pattern of behavior that will strain or ruin a relationship.

There are times when it is necessary to stay in the room, particularly if there is a fear of harm. We went through that a lot when our son was younger, especially after we got him out of status and went through the myriad of side effects from medications like Keppra. There was little regulation, little impulse control, and a lot of anger. Oftentimes, we would have to sit with him, hold him, and take his rage until it passed.

We have worked hard to get here individually and as a family. The skills we have learned allowed us to identify and process our feelings and to understand and maintain a sense of love, trust, and respect. They allowed me to leave the room.

Ultimately, the most challenging but essential lesson is this: I can’t fix every moment of anger, frustration, or struggle my son faces. What I can do is create a safe space for him to process those feelings, knowing that I’m always there on the other side of the door.

It’s not about being perfect or having all the answers—it’s about showing up, staying connected, and trusting the work we’ve done as a family to guide us through. Healing isn’t linear, and neither is parenting, but each moment like this reminds me of how far we’ve come and how much strength and love we’ve built together.