Tag: future

Dream Big

The other day, I was driving my son to music camp. The camp was at the same place where he takes his drum lessons but, rather than private lessons, the camp groups the kids into bands that perform at the end of the week.

When I asked my son if he liked the band experience, I expected his response to involve the difference between lessons and performing or what it is like to play with other musicians. Instead, his response centered around wondering if he would get on the Wall of Fame that the school had of previous students.

I wasn’t entirely surprised by his response. Very often, his goals involve a championship. When we talk about hockey, he wants his name to be on the Stanley Cup. When we play Fortnite, he wants to be on the leaderboard or have his own skin like the influencers have. He talks about subscribers and likes for his Twitch feed and YouTube channel.

As a kid, I remember being young and obsessed with getting my initials on every video game I touched to leave my mark on everyone who would play the game after me. At one point, my initials filled the high score screen of a game called Mr. Do that I played every day while waiting for the school bus.

I played basketball in the driveway and imagined the next shot was a buzzer-beater to win the championship, and I tossed balls in the air and pretended that I faced a full count and needed a hit to win the game. Creating the ultimate clutch scenario and delivering is the dream of many would-be heroes, even those of us who were not destined for sports greatness. It added drama to a sport or game that I loved to play.

I’ve heard interviews with professional athletes who had the same dreams, except they focused on achieving them. Even at a young age, they would spend hours working on their game, taking slap shots, making free throws, or swinging a bat. They aimed to become a professional athlete and help a team win a championship by delivering in that clutch moment.

Whether it’s video games, sports, or music, that desire to be the best can be a great motivator. But what happens when achieving that dream becomes the bar? What if whether a dream is achieved becomes the only measure of worth?

I love that my son has big dreams. For everything he has been through and everything he struggles with daily, he could have just as easily become a victim of his situation and have no dreams at all. But I’m afraid that if he doesn’t achieve his dream, he will resent the experience rather than be proud of himself for what he did accomplish.

I realize those are my feelings and may not be his. It breaks my heart that his chances of playing in the NHL are minuscule, and because I’m disappointed for him, I’m expecting him to be disappointed, too. But my feelings are based on my frustration and anger at what his condition has taken from him, which probably results in a higher degree of disappointment, just like it results in a higher degree of admiration for what he can accomplish.

Ultimately, my job as his parent is to let him have his dreams and make it okay, whether he achieves them or not. My job is to instill in him the ability to be proud of himself for his accomplishments and to encourage him to love the experience, the sport, and the time he could do what he enjoys. It’s my job to show him that there is a sense of accomplishment in doing something and then working at it to improve and become the best you can be, even if it doesn’t come with a trophy or picture on a wall.

I’m a big believer in dreaming. If you don’t dream it, you can’t become it. – Magic Johnson

Dream big, pal.

10 Years

We’re coming up on the 10th anniversary of our son’s first seizure.

When he was nine years old, we marked the milestone of half of his life being with seizures and half of his life being without seizures. Now, he has lived more than 2/3 of his life so far with seizures. We barely remember a time before.

When his seizures first started, there were times when we didn’t think we would see another day, never mind another year. The first few years were filled with countless emergency room visits, long hospital stays, extensive therapies, medications, related side effects, special diets, and surgery. Our son was broken down into his basic parts but stayed intact through the love and support of the people around us.

The next few years were about staying afloat, with a pandemic mixed in because things weren’t hard enough. The seizures never went away. We struggled to find him a school, a community, and friends as he drifted further from his peers in academics and social interactions.

These past few years, we have gone from staying afloat to building. We moved to the suburbs where we have more space. We found him a school that has accepted him and helped him learn and grow academically and socially. He graduated 8th grade. He has friends. While we don’t know what it will look like, he has a future. For so many years, that was just another “f-word.”

10 years. 10 years of little sleep, lots of worry and struggle, but also lots of love. 10 years of personal growth to become a better father and husband. 10 years to feel like we might see 10 more years after we weren’t even sure we would get even 1.

Regardless of what the past 10 years have looked like, I am grateful for each and every one of them.

Avoiding Reality

A while ago, I went with my parents to an appointment with an estate planning attorney. We’ve been pushing them to get a new will and legal documents since they moved to Pennsylvania, but it never seemed to be a priority.

Over the last year, though, both of my parents have continued to struggle with health issues and it has only gotten worse. While their nest egg wasn’t substantial, they had specific wishes for what to do with their estate and it wasn’t enough to just tell me what they were.

As I sat in the lawyer’s office and listened to his questions, I thought about our plan. Or rather, our lack of a plan. The extent of our planning is adding beneficiaries to our accounts, which is a) not a plan and b) not enough. If either my wife or I pass away, the other can manage to keep things going. However, the elephant in the room is what happens when both of us are gone and, more importantly, what happens if that happens when my son is young or if he’s not able to be on his own.

A few years ago, I started to write a post by jotting down what was in my head:

  • I know he is going to get older.
  • I don’t want him to.
  • I want him to stay this age.
  • I want him to be able to stay with us.
  • I want to be able to take care of him.
  • I don’t want him to have to face the world.
  • I don’t want him to have to take care of himself.
  • I don’t want him to have that burden.
  • I don’t want him to fail at it and to have a hard life.
  • I have to set him up to do it himself.
  • I have to put in a safety net.
  • But I’m not going to be here forever.
  • I’d fail him if I pretended he wouldn’t get older, or didn’t do anything because I didn’t think he would get older or because I don’t want him to get older.

There is a lot to unpack there, but the thoughts and questions I had years ago are still relevant today. Each year, I’ve thought “this is is shaping up to be the year we get things under control.” However, each year ended with the same questions remaining unanswered.

Who will take care of him if he is still a minor? At one point, we had a plan there, but it’s been too long and so many years that the family who would have taken him is no longer viable.

How will he make a living? What if he isn’t able to work or generate an income? What if the only money he will have is what we can leave him? I make a good living, but there are a lot of expenses that come with any medical condition, both normal living and trying to have a good life, medical expenses, educational expenses, and other things that chip away at the nest egg.

Facing these concerns and answering these questions is the only way we can realistically try to secure the future we want for our son. But being realistic means accepting and facing reality, which is not a trait I am always known for, especially when it comes to my son’s future. There is always a reason to put it off. There is always “one more thing” we want to do to get everything in order before we talk to someone. The result is another year without a plan, which is such a disservice to him.

It’s time to do different.