Category: epilepsy

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.

The Perfect Storm

My wife pulled up a picture of me from a year ago on her phone. At least, I think it was me. The face in the picture had the same thinning hair and the same gray beard, except it was wrapped around a much rounder face. I recognized the shirt that person was wearing because I had the same one hanging in my closet, but it fit much tighter on that person than it did on me.

Maybe it was the angle, or maybe the picture was altered—people can do all kinds of things with AI these days. Either way, I was suspicious of the image’s authenticity because I was blessed with a fast metabolism. I was the same weight for most of my youth and a consistent, slightly heavier weight for most of my adult life. It didn’t matter how much I worked out or what I ate.

“When you’re 25 it will change…”

“When you’re 40 it will change…”

But it didn’t change. Even if my routines or diet did, everything averaged out to keep me exactly where I was. As I said, I was blessed.

But then I remembered that, around the time that picture was taken, I had my first physical since the pandemic. As I stood on the scale, the number that appeared was much bigger than I had expected. The lab work that came back also showed markers that led my doctor to discuss medication to treat high blood sugar and cholesterol.

Maybe that was me in that picture, after all.

Do you remember the movie The Perfect Storm with George Clooney and Mark Wahlberg? It’s about these fishermen who get caught at sea when a trio of storms merge into, well, a perfect storm.

That’s what happened to me during the pandemic. The combination of the world shutting down and limited access to my regular physical activity, the stress and unhealthy eating choices that came with it, and the increased fear, anxiety, and depression from extreme isolation and watching my son deteriorate physically and emotionally combined into a storm that consumed me.

Even after we moved out of the city and the world began to open up, I couldn’t find my way out of it. Even after we found a school for our son and he began to improve, I couldn’t find the motivation to change. The storm had knocked out my engines, and I was drifting at sea.

My physical exam results were like the light from a lighthouse far in the distance. I was drifting, and they warned me of the rocky shore ahead. I had to decide whether to continue to drift in that direction or try to fix my engine. Like the fisherman at sea, I thought about my family, who depended on me. I thought about the adventures we’ve had and the ones ahead of us.

I picked up a book by Peter Attia called Outlive that discussed longevity and living better longer—not just living longer but living the life you want in the future. I don’t want to be 80 and sedentary. I want to travel with my family and be able to put my luggage in the overhead compartment on a plane. I want to play basketball with my son, play tennis with my friends, and go on long walks with my wife and the dogs.

According to the book’s philosophy, I had to consider my future and work backward to the present to prepare for the life I wanted. That meant changing my ways that led to the person I saw in that picture and who stood on the scale in the doctor’s office. If I wanted to continue to be there for my son and family, I needed to fix my engine.

The timing of this post wasn’t intentional, but it is serendipitous. As we begin a new year, it’s a natural time to reflect on where we are and where we want to go. The world and our lives are stressful enough, and being parents of children with special needs adds another layer of complexity and challenge that often leads to exhaustion, feeling overwhelmed, and depression.

The decision to change—even in small ways—can set us on a better path. Whether it’s prioritizing your health, finding balance, or being more present for your loved ones, the first step is recognizing the need for change and believing it’s possible.

Here’s to a year of growth, resilience, and renewed purpose.

Rock On

The image above was 10 years in the making.

The photograph on the left was taken in July 2014. We were in Philadelphia ahead of our eventual move from Colorado. My wife and son had a long week of exploring and house hunting, and we thought we’d unwind and play games. About an hour after that picture was taken, we’d be standing in the lobby waiting for a taxi and watching our son have his first seizure.

Over the next 10 years, we’d see our son have countless seizures. We’d have many nights where we thought we would lose him. We would spend months in the hospital saving his life and then years trying to rebuild what was damaged. We would struggle to find his place in the world.

The photograph on the right was taken at Dave & Buster’s a few weeks ago after our son’s last school day before winter break. As I walked around the corner and saw him pick up the guitar, I had the image of my present-day and my son 10 years ago, like two different realities, crashing together in my mind.

While we’ve had struggles and challenges in the last ten years, the significance of that moment was that we’ve also had successes and accomplishments. Our son is 15 now, and we’ve had so many years we weren’t sure we would get. He plays baseball, enjoys gaming and streaming, and has friends. He’s in a school for kids like him, which gives him a place to learn and grow.

When the picture on the left was taken, we didn’t appreciate how little knowledge and control we had over the future. Later that night, any vision we had for the future was shattered. The picture on the right reminded me that we can never predict the future. We can only learn to embrace every moment, victory, and opportunity to pick up the guitar and rock on.