Author: Dave

My Wife Is A Superhero

This summer, my wife and I attended a concert at an outdoor venue outside the city. It was a warm night, the sun beating down on us as we stood in line to enter.

I scanned the crowd. The energy was good. I noticed a family sitting on the ground towards the end of the line. I didn’t think much of it, other than that the lines must have gotten long enough to reach where they had decided to sit.

Moments later, there were screams.

“Daddy!” a young voice yelled.

I looked over and saw the father of that family lying on the ground. People started to pull away and a small circle formed, watching.

“Daddy!”

I turned to see, as everyone else was backing up, my wife dashing towards the sound.

Security arrived and started moving everyone back. Enough space cleared to see that the man was beginning to come around. My wife was on the ground with a young girl who was crying and calling for her dad and a young boy who stood frozen, watching as people arrived to attend to his father.

I watched as my wife comforted the children, surrounded by the commotion and chaos of the crowd, watching and whispering as the staff pushed them back. Eventually, the father was sitting up, and I could see that he was talking. A wheelchair arrived. The man made it into the chair, and a medic pushed him through security with his wife at his side. My wife followed, holding the hands of the two children as she continued to calm their distress.

This wasn’t the first time that I saw my wife step up in this way. She’s done it for our son hundreds of times, reacting to the sound of our son having a seizure and rushing to his aide. She’s done it for her students over the years. And she’s done it when we are out in public, and the need arises. It’s always instinctual, it’s always kind, and it’s always genuine.

It’s always inspiring.

The world needs more of that. We’re afraid to step in. We’re indifferent. We’re so eager to attack anyone in our space and to not accept help. We’re too selfish to be altruistic. We’re too polarized to have empathy for the “other.” Stories like this are anomalies, which is why they get so much attention when they happen. Kindness is so rare that stories and videos showing it are treated as curiosities, like catching sight of an endangered species.

I sometimes take it for granted that not everyone is capable of giving or receiving kindness and empathy. I see my wife’s example and how she instills that same kindness in our son. Because of her, I notice it in the other people in our lives, as well.

Maybe someone who saw my wife jump in will feel compelled to do the same the next time they see someone who needs help. Perhaps they’ll be inspired to demonstrate even a small act of compassion, understanding, and love. We are capable of such wonderful things, but without more empathy and kindness, we will eventually become the endangered species ourselves.

After we entered the venue, we grabbed some food and sat on the lawn that overlooked the city. People slowly strolled up the path past us to start finding their seats.

“There she is!” A familiar voice led my eyes to a little girl with her family in the distance who was pointing at my wife. Her face beamed as she waved. I saw the mother mouth “thank you” to my wife as they slowly made their way along the sidewalk. The father cast a glance of deep appreciation to my wife as they continued on their way. My wife waved back, and I could see her eyes water as she took a deep breath.

I know superheroes exist because I married one, but we need more of them. If we can find them, or if we can become them, maybe there is hope.

You’ve Got A Friend

A few weeks ago, we had one of my son’s friends from his new school and his family over for dinner.

My son goes to a school for unique learners. He started there last year, and we uprooted from the city to move closer to the school. It was a big risk at the time, but it paid off.

It’s the first time we felt like he was in a place that understood him and was putting in the work to teach him. It’s the first time since our epilepsy journey started that he has been able to attend a full school day. My son is happy, learning, and surrounded by kids who are just like him; each one of those students has unique challenges and reasons for being there.

My son and his friend often FaceTime after school and play Minecraft. I’ll hear them talking and laughing from the basement, and I’ll exchange greetings with his friend when he hears me checking in. When his friend was out of school for a few days, my son would check in with him to see how he was doing. When his friend came over for dinner, the first thing he said when he got out of the car was that he needed to check on my son to make sure he was okay because my son had a rare daytime seizure the previous day.

The boys played for hours. They played video games and had Nerf battles in the basement. We heard the same joking and laughing in person that we did when they were chatting on FaceTime. It was a wonderful sound to hear in person.

While the boys played in the basement, the adults stayed upstairs and talked, mixing time between crafting and food preparation. We had a lot in common. Both families were dealing with a severe medical condition, as well as the complexities that come with it. Both boys struggled in school, and both families struggled to find a place that would work for them. There were doctors’ appointments and extended absences from school that made it hard for them to build and maintain friendships. But both families found a place where we felt the boys could learn and grow and where they found each other and other friends just like them. Both families also have one more year before we go back to the negotiating table in order to continue at the school that has given our kids a chance to be seen and to learn.

Listening to them share their story also made me furious. Not just because families of children with special needs shouldn’t have to fight so hard or be abused by the system, but also because the way their family was treated was amplified because of their race. The things they were told about their son were shameful and terrible, even more so because the comments came from people who called themselves educators.

This is the reality for kids who don’t fit into the box. The system, every system, is designed for the majority. It’s more efficient when all the pieces look the same and can be treated the same way. When an “other” shows up, it slows down the machine. The system will try to make the “other” confirm if it can or discard it in order to return to “normal.”

In some cases, when the “other” proves resistant to being discarded and fights back, the system makes conditions intolerable until the “other” has no choice but to leave. We’ve experienced this ourselves, and we’ve seen it play out too many times with the people around us, especially those on a similar path. It plays out the same way in the bureaucracy of the local school system as it does on the national stage.

Navigating this world is hard and exhausting. It often feels lonely and isolating. It’s been a while since we talked to someone who understood our experience that deeply. It was cathartic to look across the table and see someone who knew what it was like. As terrible as the experiences have been, it was comforting not to feel alone.

Playing in the basement, it was also apparent that the boys didn’t feel alone, either.

In Broad Daylight

Baseball season may be over, and my son and I have started playing catch almost every day in the yard. He had such a good season, and hearing stories of how professional athletes practice every day inspired him to do the same.

I remember playing catch and baseball with him when he was younger. We started with a padded, big-barreled bat and a stuffed ball. I’d gently toss the ball, and he would mostly pick it up from the ground and try to throw it back. It was a huge milestone when he started to catch the ball.

As he got older, we moved up to a baseball and glove. He struggled, like most of us, to work on those muscles to squeeze the glove closed when he caught the ball, so sometimes the ball would fall out. But as he got older, stronger, and practiced, those muscles and the softening glove made it easier to keep the ball in the glove.

Over the years, we introduced ground balls and popups, with the ground balls getting faster and the popups getting higher the older and more skilled he got.

I have these thoughts as I watch him now, catching balls on the backhand and making solid throws into my glove. I can throw it harder to him, and he can throw it harder back, creating a solid smacking sound as the ball hits the glove. If I don’t catch it just right, sometimes I’ll feel a sting in the palm of my hand or on my thumb if the ball doesn’t catch the netting correctly. I’ll exaggerate a grimace, and my son will feel like he threw the ball as hard as a major league player.

It’s to the point now where we will take turns catching the ball, flipping it into the air with our glove, catching it casually in our throwing hand, and returning the ball in a series of smooth motions. Sometimes he’ll add a spin or flip the ball up between his legs and catch it. Such showmanship!

It’s been so amazing to come home after work and for him to ask me if I want to go outside and play catch. “Of course,” I’ll say. Spending one-on-one time with him every day is important, and playing catch with your son is something most dads aspire to, and we’re doing it. No matter how tired I am, even if we only play catch for 15 minutes, it’s worth it. And I know he enjoys it, too. Even after a long day at school, he’ll come home tired and rest for a bit, but then ask me to play catch when I get home.

The other day, we went out to play catch. After a bit of warming up, we started walking farther apart to increase the distance. As we did, we began to both add flair to our catches before returning the ball.

My son threw the ball a little low, so I bent down to catch it in my glove. I stood to return the ball and, at first, thought he was doing some kind of dance while waiting for the ball. A few seconds later, I dashed across the yard. It wasn’t a dance. It was a seizure.

My son hasn’t had a daytime seizure in a long time. Most of his seizures are in the early morning while he is sleeping. Occasionally, if he’s exhausted, he might have one going to sleep at night or during a nap. But we haven’t had a daytime seizure like this in years. It reminded me of the seizures he would have when this all started while he was playing tee-ball.

The seizure wasn’t very long, but I got to him before it ended. He was still standing, his hands stiff in front of him and his body jerking in rhythmic motions. Once that stopped, I helped him sit on the ground.

He was postictal, his lips smacking as he started to come around. I rubbed his back as we sat on the grass, telling him that I loved him and that he was going to be ok.

“Did I have a seizure?” he asked.

“Yes, pal,” I replied.

It struck me as I sat there with him that I hadn’t seen a seizure like that in person in a long time. Usually, I see them through the camera in his room. There is a sense of routine to those. I wake up and watch the monitor to see if I need to go to him, but most of the time, he rolls over and simply falls back to sleep.

But this one was right in front of me, in broad daylight. It reminded me of the seizures he would have playing tee-ball. The seizures would attack in broad daylight, in front of everyone, as my son tried to play. It was hard not to be brought back to that time as the feelings of fear and desperation that I felt back then tried to resurface. I did my best to push them away and comfort my son, hoping this was an anomaly rather than a sign of things to come.

Once he recovered, I brought him inside to cool off and rest. My wife came down, and we sat on the couch and watched a movie as a family. I watched my son as we settled in. I don’t think he remembered what it was like to have a seizure, either, and I could see him work through his feelings. Eventually, he leaned into my wife and focused on the movie, little laughs coming as the characters did something funny. I started to let my guard down, too, and settled next to him.

Eight years in, seeing a seizure doesn’t get any easier. But the way we respond, with compassion and love, helps connect us and push away the fear and the darkness.