parenting Archives - Page 24 of 51

My Captain America

The first time my son saw Captain America, he was three years old. Captain America visited his school, and I heard all about it when I got home from work. We were already a Marvel family because I grew up on Spider-Man comics, but from that day on, my son wanted to be Captain America.

His fourth birthday was his first with a superhero theme. He was, of course, Captain America. After his birthday, he wore his costume all the time. He battled evil and saved the day because he was Captain America.

Within a year, my son would be fighting his own battle. It wasn’t a battle against Hydra or Thanos. Instead, it was a far more relentless, cruel enemy. Epilepsy did to my hero what no other villain could do. It nearly won.

The battle was hard. The seizures wouldn’t stop. The medicine he was given flooded his blood with poison rather than give him superpowers. He couldn’t move or talk for days. But he didn’t give up. He fought just like his hero would, and he recovered. He walked out of that hospital and was riding his bike within a few months.

That was four years ago — four years filled with seizures, and struggle, and limitations. My son is still not seizure free. In spite of all the medication, therapy, and the ketogenic diet, his enemy lingers on and makes its presence known every day.

But my Captain America never gives up. Those four years were also filled with progress, and victories, and inspiration. They were filled with a universe of heroes.

As this chapter of the Marvel Cinematic Universe ends with Avengers: Endgame, I looked back at the last few years and saw how much of an impact the movies and the heroes in them have impacted our lives. Even though my son was wearing the costume before he saw his first Avengers movie, seeing his hero on the screen made him feel like he was up there saving the day.

Especially when life for my son got hard, he had these heroes to look up to and to inspire him. And so he would put on his costume when he needed to be brave. And he would grab his shield when the only thing he could do was fight.

Even to this day, if you find yourself walking around Philadelphia and you happen to see Captain America, there is a good chance that it is my son. My Avenger. My hero.

No Joy In Mudville

Spring is here, and in our house, that means baseball. My son loves to play baseball. I always thought we would be a hockey family, but playing hockey wasn’t in the cards for him. The nature and flow of baseball, however, made it the perfect game for where my son is physically and cognitively.

We’ve been lucky in the last few years with coaches, too. They let him play. They encourage him. They teach him. They make him feel like a part of the team. And they keep the game fun.

I, on the other hand, feel like I’m doing everything that I can to suck the joy out of this game that he loves.

One day last week, I took him to practice. His practices are in the evening, which makes it harder for him to concentrate, especially after a long day and school. That day, he also had a nap shortened by a seizure, and he’s been having more seizures at night. It was not ideal, but it also wasn’t new.

He usually pulls it together for the hour, but he was a little off that night. He was having a hard time listening, and I could see that he was having a hard time physically. His muscle memory was failing him. Actions and movements that were generally automatic for him were labored or forgotten.

I got extremely frustrated. Not really at him, but for him. I was mad at epilepsy. I was jealous of the other kids and parents who just show up and don’t have these struggles. But all that frustration comes out channeled at my son. “I’m sorry,” he’d say, as I huffed as I turned to retrieve another wildly thrown ball. “I’m sorry,” he’d say, as I asked him to stop diving into the muddy ground. “I’m sorry,” he’d say, as I explained to him why a ball got passed him.

During the scrimmage, the coaches were figuring out who should pitch next and my son went up and said that he would. At first, the coaches were reluctant, but then one challenged him and said, “If you can throw me three strikes, you can pitch.” My son stepped to the mound and threw only three pitches to the coach. All strikes.

When he faced his first batter, I could see my son go into his head and play as he does in his room. He pretended that the catcher is signaling pitches and shook them off. He tossed the ball in the air like they do in the movies. And then he threw a pitch nowhere near the plate.

From the sideline, I yelled at him, but he wasn’t listening. In between batters, I walked up to him and tried to help him focus. “I’m sorry,” he said. He managed to get some pitches over the plate but walked the first two batters. The third batter crushed the ball but it was caught and thrown back to first base for a double play. Two outs.

They let my son continue to pitch. He was so excited, in spite of my yelling. In spite of my frustration. He walked one more batter but then struck out the next batter to end the inning.

That night, I was sad and embarrassed. I made a big deal out of how well my son did, but inside I’m feeling the shame of blanketing practice with the sound of my voice yelling at my son. But it didn’t feel like an isolated incident. I think it helped explain why my son apologizes so much.

Before he drifts off to sleep, I tell my son that I can’t imagine baseball is very fun for him with me yelling at him all the time. I told him I’d do better. And I will. My son finds joy in a lot of things, but baseball holds a special place in his heart. I would hate to take that away from him.

A Sense Of Time

I had a birthday recently. Getting older doesn’t generally bother me but, this time, my birthday felt different. This time, my birthday came with the realization that, realistically, I’m past the mid-point of my life. It made me feel like I was running out of time.

I’m running out of time to spend with my family.

I want to spend as much time as I can with my family. I want to look back on my life and not think that I worked too much, or was on the computer too much, or was on my phone too much. I want to look back on my life and know that I was a present father and husband. I want to know that I went to all the baseball games and performances and that my wife and I had date nights. I want to know that I was there when my family needed me.

There are so many obligations. There are so many distractions. There are so many demands on my time. My birthday made me wonder if I was making the right choices with how I spend my time.

I’m running out of time to prepare my son for the future.

Epilepsy through such a curveball at my son’s development, both intellectually and socially. It set him back a few years, and the gap is widening between him and his peers.

I worry that there will not be enough time to prepare my son for the world. I worry about what will happen to him after I am gone. But sometimes, I worry too much about preparing him for the future that I forget to let him be a kid. My birthday made me wonder if there was a way to help him develop and grow while still giving him the childhood he needs and deserves.

I’m running out of time to prepare the future for my son.

I also feel such a sense of responsibility to prepare the future for my son. We don’t know what his life will look like after we’re gone. We don’t know if the seizures will ever be under control. We don’t know if he’ll be able to support himself, or hold a job, or have a family.

I used to think only about having enough money for a comfortable retirement, but now I think about how I can best secure a comfortable future for my son. There is less time to do that now, and focusing on the future takes away from the present and spending time with my family. My birthday made me wonder if I was making the right choices now to protect my son in the future.

There is still time.

Although it originally felt like a sense of urgency, what my birthday actually gave me was a sense of time and the importance of it. It made me question my relationship with the future and the present and ask myself if I am spending my time in each way that I should. It made me realize that I often live at the extremes, ignoring either the present or the future, instead of finding the healthy balance between the two.

I’m not sure what I’ll do with the gift, but I’m hopeful that I will make the most of it. I suppose we’ll have to see what happens.

In time.

Enjoy yourself. It’s later than you think. ~Chinese proverb