Walls and Doors

A few weeks ago, we attended the yearly fundraising event for my son’s school. The event was an opportunity to interact with other parents, teachers, faculty, and board members and to collectively celebrate that a place exists for kids like my son.

This year, the guest speaker was a Hollywood movie producer who attended the same school when he was my son’s age. The producer accepted the school’s Achievement Award and gave an emotional speech about how much the school helped him learn and grow and how it changed how he felt about himself and his outlook on the future.

Earlier in the day, he spent time with the kids, including my son. The kids worked together to create movie pitches and presented them to the producer. My son came home beaming, feeling proud of himself for his accomplishment, and also because the producer gave my son the inside scoop that there would be another Captain America movie.

We didn’t learn all the details until we spoke with one of my son’s teachers at the fundraising event. He often has a hard time remembering and sharing details, but his teacher was so proud of him, and we were equally proud and grateful that the producer had spent time with the children.

In his speech, the producer talked about his experience with the kids. He said it reminded him of what it was like to find a place like this school after struggling for so long in other schools. He looked at the faces of the kids and wanted to inspire them and show them that, even though they have challenges, with a loving family and by the right support, anything was possible.

When he said that, I felt a light come on.

I think a lot about my son’s future. I wonder what he will be capable of, and what options will be available to him. Often, those thoughts are about the things he won’t be able to do because I see how much he struggles today. But I think a part of that is because we traveled so much in the unknown, without the type of support that schools like this provide. Based on our experience, the unknown is dark and scary, and we spent so many years navigating potential futures in that dark, feeling around for a way out.

When it’s that dark, everything feels like a wall.

But that moment in the producer’s speech when the light came on made me think about how much our life has changed in the last few years. Our new home in our new town, my son’s new friends, and my son’s new school have all changed his life. They’ve changed our life. The school, in particular, has given him a sense of belonging in a safe space and the tools he needs to learn. He is surrounded by other kids like him. He is being taught in a way that works for him. And now, he’s seeing examples of what other kids like him have done.

The school has provided light in the dark, and, for the first time, we can see a little further ahead.

It’s because of that light that, for the first time, we can see that we’re not just surrounded by walls. We can see doors, too.

Catalysts of Change

A couple we are friends with were pregnant right before the pandemic began. We were excited for them, and my wife was more excited about the opportunity to hold the baby. Then the pandemic happened, and it would be almost two before we saw their son other than at a distance or through a window.

As the world has opened up a bit more, we were able to spend some time with them. Their son was already walking and saying words, and it was wonderful to see how happy he was. It was also wonderful to see how our friends had changed and opened up since their son arrived.

It made me think of how much I had changed, not just when our son was born but also after he was diagnosed with epilepsy and all the challenges that presented.

There are obvious reasons why having children changes us. They are completely dependent on us for everything, and that requires an instant upgrade of our maturity and level of responsibility. We lose some of our selfishness, and our choices become less about us. We start thinking more about the future. Having children takes us out of ourselves and expands the context in which we live.

It’s hard to change patterns that have been with you since you were young. I think most people say they want to be better parents than the ones they had but then wind up doing a lot of the same things our parents did, anyway. Having a child may be an opportunity to do differently, but that doesn’t mean we can or do.

When our son was born, I started on my journey of growth. I thought more about the example I would set for my son and the type of father I wanted to be. But I was a mess, and having him shone a big spotlight on how far I had to go both as a father and as a husband. I second-guessed everything because the weight of the responsibility was unlike anything I had experienced before. That insecurity caused me to go inward and protect myself, which pulled me further away from what I should have been doing for my family.

Eventually, we found our groove, but it felt more like a plateau than a destination. I did change, but just enough to keep things together and to move forward. We did family things, and I was progressing at work and felt like I had figured some of it out, but life would throw in a twist and let me know that I had barely started.

The first seizure was a wake-up call, like an alarm clock, but we were able to hit snooze. The second seizure, though, let us know that it was time to get up. The rapid deterioration of my son’s condition meant that I wouldn’t be able to sleep again.

There were years when it felt like everything was hanging on by a thread, both my son’s health and our family. The challenges we faced were impossibly difficult and not something for which anyone could have been prepared. When things were good, I pretended like they were always good. When things were bad, I disappeared into myself or into work or a dark hole, anywhere to avoid the fear and pain and struggle.

It took time, patience, therapy, and my son stabilizing before I could get out of that hole. I could have lost everything while I was in there. I almost did. But when I climbed out, my wife and my son were still there.

In the past few years, I have done more to become the husband, father, and person that I want to be than I have at any other point in my life. Even going back through old posts, I remember those difficult times and can see a record of my progress. I can look around and see how much closer I am to my wife and how intentional and present I try to be with my son.

But I’m not done. There is more to do. This is a lifelong journey of growth, with the course adjusted at each milestone. Milestones like having a child. Milestones like nearly losing a child. These events are opportunities to grow if we let them. And we should. The stakes are too high to ignore them. And the rewards are too great to ignore.

Welcome the change.

What Emmet Did On Summer Vacation

Earlier this summer, we took a family trip back to Colorado.

Colorado has always been a special place for our family. My wife and I met there, were married there, and our son was born there. Even though we left when he was four, my son has maintained a strong connection to the state, especially its sports teams. His favorite teams are all Colorado teams.

The week we visited, two things were happening. First, the NHL Stanley Cup Finals were happening in Denver between my son’s favorite Colorado Avalanche and my favorite Tampa Bay Lightning. There was also a Colorado Rockies baseball game later in the week.

When we planned the trip, we wanted to attend both games. These would be our service dog Emmet’s first sporting events, but this was also our first trip flying with him.

Flying with Emmet was pretty straightforward. There was paperwork to fill out, and we talked to an airline representative when we booked the tickets, who secured us seats in the bulkhead. On some airplanes, the bulkhead usually has extra leg room, so I expected Emmet to be able to lay down comfortably during the flight. However, on the plane we were on, the bulkhead was just the first row of economy seats behind the first-class seats. There wasn’t much extra space. On the trip out to Colorado, my wife was already there, so it was just my son and me on the plane, which meant we only had two of the three seats in the row. Fortunately, the woman who occupied the third seat was extremely friendly and didn’t mind when Emmet, after much fidgeting and shuffling, finally decided to lay down under our legs.

When we landed in Denver, we were excited to get off the plane. Since the flight was a few hours long, our first stop was the pet relief area. The one in Philadelphia was tucked in a corner, fake grass with a fake fire hydrant but well maintained. The pet relief area in Denver was a different story. It was a small room that reeked of ammonia and urine. Emmet started pulling towards the door as soon as we entered the room, and, no matter how hard I tried to encourage him, he wouldn’t pee. I didn’t blame him. Fortunately, I could take him outside once we reached the baggage claim area.

The hockey game was next on the calendar. I contacted the arena to ask for guidance on bringing a service dog, and the staff was very helpful. Tickets were difficult to find, and there were no accessible seats available, but the box office suggested that we check the day of the game to see if any opened up. They didn’t.

When we got to our seats high up in the arena, we were in the middle of the row, and there was very little room between our seats and those in front of us. Emmet spent the first two periods on my lap. If you’ve never had a 60-pound dog sit and squirm on your lap for 2 hours, I don’t recommend it. But for the first two periods, besides shifting to get comfortable, he seemed to enjoy the experience, watching the players and puck move back and forth on the ice.

By the third period, though, he was growing more uncomfortable, and the arena was getting louder as the Avalanche pulled away in the score. My wife took him outside for the rest of the game, and he was much happier. So were my bruised legs. Lesson learned.

The baseball game was a different story. Emmet did great walking through the crowded stadium. We were able to secure accessible seats, which, at a baseball stadium, are generally roped-off sections at the concourse level behind the lower sections. We had folding chairs, shade, and enough space for him to stretch out comfortably and take in the game. The noise level, especially since it was outside, was much more tolerable for him, as well. Before we left, we swung by the team store and let him look at the pet section, where he selected a squeaky plush baseball bat, which he carried to the register himself.

Other than another extended delay, the return flight was much more manageable. My wife was traveling with us, so we had the entire bulkhead row for Emmet to stretch across and lay down. He settled in much easier, too, as did I, since I knew what to expect. I relaxed and watched a movie, occasionally reaching my hand down to comfort Emmet, and he fought sleep. We were all exhausted, both from the flight and from the activity-packed trip.

After we landed, we grabbed our bags, found the car, and headed home. We pulled into the driveway and unpacked the car. We left the bags in the kitchen, opening them only to retrieve our toothbrushes. We made it upstairs, washed up, changed into our pajamas, and fell into our beds. Emmet gave one last stretch and jumped into my son’s bed with him, laid his head down, and took a big, deep breath. As much of a fantastic trip as it was, full of amazing and first-time experiences, it was good to be home.