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.
I thought we were going to be a hockey family. I grew up watching the Hartford Whalers and would pretend to play hockey on the frozen ponds when I was a child. When I moved back to Florida after my military service, the Whalers were no more, so I latched on to the Tampa Bay Lightning and started taking hockey classes at a nearby rink. When I moved to Colorado, I joined a recreational team and played for years until the late nights became too much, and I settled for playing the occasional drop-in game.
My son and I started playing floor hockey as soon as he could walk. He was on the ice taking skating lessons when he was two, and by the time he was four, he started hockey clinics. When we would go to a hockey game, my son would make me keep my phone handy in case the Colorado Avalanche needed him. It was awesome.
Around that time, we moved to Philadelphia. By then, my son had had his first seizure, but it was only one, so we still looked for ice rinks in the area for him to continue skating. But, by that winter, things had taken a turn for the worse, and he would wind up being in and out of the hospital for the next few months.
By the spring, we were out of the hospital, but his seizures were still not under control. We were in a new city with no friends, no family, and the only support we had was at the hospital. We had just spent months isolated in the hospital and wanted to give him something to do. Skating wasn’t an option, at least until he became more stable, but we found a tee-ball league nearby and signed him up.
That first season was rough. There were wonderful moments watching him play with the other kids as he learned to hit and throw and play the game. But there were constant reminders that we hadn’t yet figured out what was wrong. We would watch as my son stood on third base and slumped over because of a seizure, only to pop back up and try to get back into the game. Sometimes he could; other times, we’d rest and hold him on the sideline as his tiny body recovered, watching the other kids continue to play. It was heartbreaking. But he loved being on the field, so we made it work.
Eventually, and after he stabilized a bit more, we signed him up for some skating lessons and a hockey clinic. They taxed his body and brain, and we had at least one seizure on the ice, but he was happy. Again, though, his seizures and the side effects of his medication took over, and skating was too much for him. For a while, we tried working on hockey skills on a concrete rink, but even that was too much. We still loved going to games and playing on the tennis courts in the park. My son still dreamed of a career in the NHL, but skating and being on the ice took too much out of him to be able to do it consistently.
Baseball, though, was different. Each spring, we would sign up, even though we didn’t know how much our son would be able to handle. Each spring, I would fill out the signup forms and list his condition and make notes to warn his coaches about his issues with stamina and attention. Each season, my son would show up on the field and work hard to be a part of the team.
Through the years, we were lucky with the teams he was on and especially the coaches. The experience the coaches created for him was exactly what he needed, and it gave him a bit of normalcy during a very unstable time. And the coaches were good people, too. One year, his coaches attended our local Epilepsy Foundation gala, donating their time and money to a cause so important to our son and family.
When the pandemic hit, we missed those moments. When the weather permitted, we would go to a field as a family and play. As fun as that was, it wasn’t the same. Just as the world was beginning to open up and we were going to register for the upcoming season, we uprooted and moved out of the city and missed the registration for our new community, and missed out on another season.
This spring, though, we signed him up as soon as registration opened. Again, I filled out the forms and felt nervous filling out the “Medical Conditions” section. I was worried that we had found a bubble of support in our previous league where the coaches knew my son and that this new league wouldn’t be as positive. He’d be surrounded by entitled suburban kids and parents who have known each other for years. I was worried he wouldn’t fit it because it’s easier to do when everyone is new, but here he would be the only new kid coming in, and it had been years since the last time he played. I was worried that this experience would take away something that he loved to do.
I suppose it could have gone that way. But shortly before the season started, I receive this message from his coach:
Immediately, I felt better. That simple gesture lifted the worry and fear I had been carrying from the time I signed him up. The conversation that followed was sincere and kind and set my son up to have a positive experience on the team. We continued to communicate as we figured out where my son was physically and what he was capable of (which turned out, as always, to be much more than I assume he is).
Even though many of the other kids had been playing together for years, my son felt like a part of the team. The players celebrated hits, and solid fielding plays. They cheered for each other and got to know each other…Fortnite was a popular topic and something that my son had in common. A few kids from our neighborhood were on different teams, so my son also developed connections across the league. I couldn’t help but smile as I saw the kids chat and mingle during batting practice before a game, like professional baseball players getting ready to hit the field.
A highlight for me was during a day of celebration that the league puts together for the kids that raises money to support the organization. One of the events was a Home Run Derby for the 12-year-olds who would be “graduating” from their division. Only a few kids could hit the ball over the fence, but there was a point system for hitting deep balls that allowed everyone to participate.
My son was excited to participate, always believing he could hit a “dinger.” Nervously, I signed up to pitch to him during the event. Selfishly, I thought it would be a good father/son moment. But, even though I’ve been pitching to him since he first picked up a bat, I wanted to ensure that he was set up for success. When I asked him what he preferred, he said that he wanted me to pitch, so I practiced for days ahead of the event.
When I was out there on the mound, it wasn’t about whether or not my son hit any home runs (he didn’t) or how far he hit the ball (very, very far). It was watching him step up to the plate and do something brave. It was watching him take that deep breath, set himself up, and swing the bat. It was watching the smile on his face or the way he holds the pose at the end of his swing when he makes solid contact. It was hearing the other players in the dugout cheering for him when he sent a ball to the outfield or to try to reassure him when he had a string of infield hits. It was, after his time ended, walking up to him and telling him how proud of him I was and seeing how proud of himself he was.
The season’s final game was a “Graduation Game,” where they put all the 12-year-olds on teams one last time. It felt like an All Star Game where all the kids who had gotten to know each other over the season could go out and play one last time. After the game, each player received a plaque commemorating the season. They called up each player one by one while the others cheered. My heart swelled when it was my son’s turn, and I hid behind my phone to not embarrass him with my huge smile and watering eyes.
I am so grateful that my son has found something that brings him joy. There were times when I only focused on the loss of hockey…the idea that something he loved was taken away from him by his condition. There were times watching him have seizures on the field or struggle with his stamina and attention that I worried that he wouldn’t be able to find anything else. There were times when my overprotective, helicopter-parent nature and the terrifying experiences we’ve had with epilepsy have caused me to focus on the things he shouldn’t or can’t do.
But going through these experiences and watching my son continue to surprise me with what he can do…it’s humbling and wonderful and inspiring. It has caused me to move from a place of fear to a place of hope and gratitude. It has caused me to stop worrying as much about creating a perfect experience and to appreciate and enjoy the experiences as they come more fully. Every day my son teaches me something just by being himself. Every day, I feel like the luckiest dad in the universe.
One night before bed, my wife came and sat next to me.
“I know you’re tired,” she said. “But when you get that tired, the way you check out is to be really short with us, and like we are bothering you. We haven’t been spending a lot of time with our son, and that’s how he sees you at night.”
Of course, she was right. Looking back, I can see how I responded with one-word answers or a tone of disinterest. Our nights became about checking out by sitting on the couch watching TV while our son played video games online with his friends in the basement. Dinner time was mostly apart, as well, us watching TV while he ate and watched his iPad.
It was too easy to fall into this routine. The long winter nights, the lingering pandemic, the burnout from keeping everything together leeched our energy and motivation. We checked out long before it was time to check out, and anything that required exerting effort or interest was met with resentment and disdain.
After my wife called me out, I felt ashamed and guilty. I used the excuse of letting him play with his friends to justify my behavior. “He’s doing what he wants to be doing, so it’s ok to check out.” But it was just that…an excuse.
I’m glad that he has friends now from school and has more independence to hang out with them virtually. It’s what he wants to do and what he should be doing, especially after many years of isolation.
It also comes after so many years where we were always “on,” too. We were the caregivers of a child with epilepsy, with all the care and worry that required. We were his emotional regulators when he couldn’t do it himself. We were his teachers and his entertainment when he was too sick to attend school. That was in addition to trying to manage our own lives, jobs, and relationships.
But moving from one extreme to another threw everything out of balance. That’s not to say that the amount of time needs to be equally portioned. My son is getting older, and we’re not his only source of entertainment or care anymore. He should be spending more time with friends and more time with himself. But that doesn’t mean those two things should be the only things in his life or that they are excuses not to be a parent.
Or a husband. Sitting on the couch next to my wife isn’t spending time together. We’re relaxing but not interacting. We just happen to be occupying the same space and doing the same thing.
As in most situations, awareness is the first step to change. I’m grateful to my wife for pointing out where I was and how I was responding to our son. Since then, I’ve been more aware of my tone, and we’ve also started having more family dinners, more walks in the neighborhood, and more ping pong tournaments in the basement. My son still plays with his friends, and my wife and I still veg out on the couch watching television. But, now, those aren’t the only things we do.
Shortly before the year started at my son’s new school, we received an e-mail announcing that they were recruiting for their soccer team. When we mentioned it to our son, he was excited, so we signed him up.
On the first day of practice, I took my last meetings from the bleachers to check in on my son. Soccer practice was after a full day of school, which was also something new for him, so I wanted to make sure that he wouldn’t push himself past the point of exhaustion.
The team was a mix of kids who had never played soccer before alongside seasoned veterans who ran circles around the other kids. My son was in the former category. I could tell there was a lot of new information being thrown at him, but he hung in there. When practice was over, I gave him a high five, and we headed home.
That night, as I was putting my son to bed, we talked more about his day. When the topic of soccer came up, he said he was excited but also very tired, adding, “maybe I’ll skip soccer tomorrow.”
As we talked more, it was obvious that the full day of school and soccer practice was physical and mentally draining, but there was more to it. Soccer was something new, too, and he wasn’t good at it yet. He was feeling nervous and insecure, especially since one of his friends on the team was much better than my son.
It’s easy to get excited about something new. Still, sometimes that excitement only carries you up to the point where you have to do the new thing: signing up for a new activity like soccer, moving to a new location, or changing jobs. But when you are standing on the side of the field, about to put in an offer on a new home, or reading a job offer, that’s when the fear and uncertainty creep in.
What if I’m not good at it? What if someone else is better? What if I get rejected? What if I make the wrong choice? What if the new thing is worse? What if I miss out on something better? What if I don’t deserve this?
Those voices in our heads that question our choices and our worthiness get louder as we get closer to acting on that excitement. They thrive in uncertainty and fill in the gaps between what we know and what we don’t know yet with stories of fear and doubt. They don’t want us to put ourselves out there. They don’t want us to fail. They want to keep us safe. But they can also keep us from something better.
I look at my own life and how many times I was afraid to start something new. I think about the experiences I would have missed out on had I not taken the next step.
I shared with my son stories of when I was afraid or uncertain. I told him how I was nervous when I joined the Army, and the first time I played drop-in hockey in the city, even though I didn’t know anyone. I told him about getting on stage to give a presentation, and how I still get nervous when writing a post for this blog. I told him how I wasn’t sure that I could do any of those things, just like he wasn’t sure about soccer. But, especially when it is something that you want to do, sometimes the hardest thing is taking that next step.
Not everything went the way I thought it would or wanted it to, but I can look back and be proud that I took that next step. I can be grateful for the experiences that I’ve had. And I can use those experiences as a catalyst the next time I face uncertainty, insecurity, and doubt.
“Let’s see how you feel in the morning,” I said. “We shouldn’t make any decisions when we’re this tired.”
“OK, daddy,” he replied and turned to the side and closed his eyes.
The following day, he came down for breakfast, already dressed and ready for school.
“Good morning, daddy,” he said, pointing at his socks. “These are soccer socks because they are long like soccer players wear.”
“I see that,” I said. “How are you feeling about playing today?”
“I’m excited,” he replied. “I think I was just tired last night and a little nervous, but I’m ready to get on the field!”
He sailed through the next few practices and now spends time between practice kicking the ball in the yard. He also learned that one of his friends in the neighborhood was on a soccer team and picked up a few tips from him.
He got through that initial fear and found a new activity that he enjoys doing. Not every story will have such a happy ending, but he would never have known unless he took that next step.
This week is my wife’s and my 13th wedding anniversary.
When I think back to how it all began, it seemed improbable that we would have ever met. I was a software engineer working in a Colorado suburb, and she was an actress and musician running a musical theater school in the foothills. We traveled in different worlds that had little overlap. But we both had friends that encouraged us to try online dating, and my favorite algorithm of all time is the one that decided that we were a match.
We started slowly. We spent months getting to know each other over e-mail and texts. The first time we talked on the phone, I was visiting my parents and pacing around their pool like a nervous teenager. When I returned from my trip, we finally had our first date and our first kiss.
As our relationship continued, I started to see more of her world. On one date early on, I sat at a table, nursing a drink, watching her sing on stage. I still smile when I think about it. I was already in love with her, and there was something transcendent about watching someone you love doing something they love.
At the time, I was learning about photography, so I became the official photographer for her school and began to take photographs of the performances. I would see her share her gift with the children and watch as they put on these incredible, professional performances. What she was able to draw out of these kids and the way she did it was inspirational.
The more time I spent in her world, the more amazed I became. She brought things out of me, too, that I didn’t know anyone could. It was challenging at times, and I didn’t always handle it well, especially when what was coming out collided with my baggage and fears. But I was growing, and we were growing together, and I knew that I wanted to spend the rest of my life with her. Our wedding day was a wonderful, blurry blending of our two lives.
Almost a year after we were married, our son arrived. We didn’t have much time to explore life as a married couple, and the change and the challenges of being new parents strained our relationship. My wife had to take a break from teaching, and I only had a few weeks off before I had to return to work. There were hard days, but we were so grateful for his presence, and we did our best to figure it out.
Eventually, we found help from an amazing nanny and my wife could return to work. She found her groove with the school and managed to juggle being a business owner and being a mother, and one of my favorite pictures from that time was when our son played the baker’s son in Into the Woods.
I was slowly advancing in my career, as well. When my company offered me a position that required moving to Philadelphia, my wife didn’t hesitate. It’s only in hindsight that I can even begin to appreciate how much she gave up to support me in that move. But it was only the start of the things that she would give up.
On their first trip to Philadelphia, my son had his first seizure. It was not the introduction we hoped for to the city that would become our new home. But it was one seizure, and it didn’t stop our move east.
The second seizure came as my wife and son boarded an airplane a few months after our move. She managed to get him off the plane and rode with him in the ambulance to the children’s hospital. By the time I met them at the hospital, my son was stable, but my wife was understandably shaken.
In the months that followed, my son’s condition only got worse, and my wife was the one who was with him every day. I would go to work, and she would be alone with him in the house in a city where we didn’t have any family or support outside of what we received at the hospital. When my son’s condition got so bad that he needed to be admitted, and when we discovered what “Keppra Rage” was, and when we thought we were going to lose him, she was the one that bared most of the burden, and she is the one that essentially pulled us through.
Over the next few years, my wife would start teaching music or singing with kids of families we met through school, but it was hard to keep the momentum going. Even as my son was becoming more stable, he still couldn’t do full days at school. Some days we’d get a call from the school nurse, and my wife would need to go pick our son up. Some days he would seize so much that we couldn’t send him to school at all, and my wife would stay home with him. The unpredictable nature of our son’s condition made it impossible to have a fixed routine or plan too far out into the future. She was constantly forced to rearrange her schedule or cancel her lessons last minute. It became too hard to manage so she would stop doing those things so that she could focus on our son.
Often after the stress and frustration had gone beyond the breaking point, we would try to bring in someone to help at home. But the erratic nature of our son’s condition and the impact on his day made it hard to schedule help, too. We paid a nanny to be on standby in case we needed to pick my son up early because there was no one else we could call. But that wasn’t sustainable financially, so, again, it fell to my wife to give up the things she wanted to do.
When the pandemic hit, it initially felt like a relief. We were home together and I should be able to help more. But it didn’t start well. Even if I wasn’t going to an office, I would still disengage and disappear behind meetings during the day. My wife was still the one that carried the responsibility of taking care of our son.
When the new school year started, we tried a dedicated virtual school. Even the haphazard attempt at going virtual by my son’s brick-and-mortar school helped with his anxiety, so we thought it might be a better fit. My wife was supposed to serve as the “learning coach” who would monitor progress and step in if our son got stuck. But it turned into another full time teaching job. My son struggled with the structure and pace of virtual learning. He had a hard time keeping his focus and attention and wouldn’t know what he was supposed to be doing. My wife spent every minute keeping him on task, or helping him do the work, or trying to teach him whatever he didn’t pick up from the teacher. She was in the room with him all day, watching him struggle and watching him fall further behind.
Over the years, it was always my wife’s instincts that triggered the alarm and forced action. She’s the one who recognized his struggle at school and pushed for a 504 and eventually an IEP. She’s the one who got him a one-on-one aide. She’s the one who got him back into occupational or speech therapy when there were signs of regression. She’s the one who knew that the virtual school wasn’t working and started looking for a school more suited to our son’s needs.
Around the same time, she also recognized that it was time to move out of the city. We got lucky and found both a school and a house in a nearby suburb. When the neuropsychologist said that the best thing we could do for my son after we received the results of his latest test was “find him a school” and “find a way for him to be around other kids,” we had already done both of them thanks to my wife.
As we are settling into our new life, I’m seeing my wife start to come alive again. She’s starting to do the things that she was meant to do. She’s teaching a few students in the city and talking about starting a class. She’s working on a book. She’s putting herself out there in those ways that inspired me to do the same all those years ago. It inspires me even more today.
I am so grateful to be on this journey with her. There is no way for me to balance the scales, but I can keep working at being the best husband and father I can be. I can keep looking for ways to lighten her burden and to support her as she has more capacity to find herself again.
After so many years of putting others first and being forced to give up so much of herself and what she needed, maybe this is going to be her year.
