Category: epilepsy

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

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.

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.