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

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.

The Clothes Make the Man

My wife joined a band last year that plays regularly at different restaurants and venues in our area. My son and I try to go to every show, taking in a set or two as we have dinner together and watch our matriarch do what she loves to do and does so well.

A few weeks ago, I was waiting for my son to finish getting ready so we could go to a gig. I was wearing a T-shirt with her band’s name and jeans. My son came around the corner sporting blue jeans, a black on-brand Marvel shirt, and a bright red blazer on a hanger over his shoulder.

“Nice,” I said as we headed to the car.

After we parked, my son stepped out of the car and pulled his jacket from the hanger over the back seat. He slid each arm in turn into the coat and buttoned a single button below his chest, and we headed in.

When we entered the venue, my wife saw her tall, handsome son sporting a bright red blazer. She came over, gave him a big hug, and told him how good he looked. She brought him to the stage, and I played paparazzi, taking pictures of the dapper gentleman and the singing star.

We made the rounds to greet the band, and each of them commented on how tall my son was and how sharp he looked in his jacket. At our table, the waitress also mentioned his blazer, and I could see him carrying himself more confidently and maturely. Sitting across from me, he looked five years older.

The clothes make the man.

“Man.”

It’s such a loaded word. He’s the size of a man and wears men’s clothes, but inside, he’s still the same boy who, for many years, would go to every doctor’s appointment in pajamas or a costume. I watched his face as he sat at the table obsessively struggling with a Rubik’s Cube. His brain wouldn’t let him stop, but it wouldn’t help him remember or apply the techniques to solve it.

The gap between his outward appearance and his internal workings continues to widen, as does the gap between his development and that of his peers. These gaps are getting harder to reconcile, and they stoke my fear of him being misunderstood by the outside world. I try my best to push those fears away as he looks up at me. I smile, and we talk about his strategy to solve the puzzle and listen to my wife’s voice fill the restaurant.

After dinner and between sets, we said goodbye to my wife. She again commented on how good my son looked in his jacket, and I saw him stand a little taller. He carried that height from my wife’s table and the door, growing even more as a handful of random patrons also commented on how good he looked in his red blazer.

“I feel like a celebrity,” he said as we stepped through the door. In addition to his bright red blazer, he wore a priceless, confident smile.

As we walked to the car, I couldn’t help but marvel at how much that red blazer seemed to transform him—not just in how others saw him, but in how he saw himself. For a few hours, he wasn’t the boy with special needs or the countless doctor’s appointments. He was the tall, confident young man turning heads and making impressions.

While I know the gaps will always be there, that jacket gave him a taste of a world where he could be seen without his struggles, even if only for a little while.