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.

Maine 2.0

For the second time during the pandemic, we’ve run away to Maine.

I’m starting this post on our first morning in the cabin. My son is at the dining room table, doing virtual school with my wife. The fog is starting to lift, and I can see out the window through the trees and across the secluded cove of fresh seawater that salts the air.

It’s surreal. Many years ago, my wife and I talked about living a more nomadic life, traveling around and doing work and school wherever we happened to find ourselves. I would work in a kitchen somewhere in Europe, and we’d drink wine and play music at night. Back then, I cooked more adventurously, and we drank, and we played more music.

But over the last few years, the practical part of me that optimizes for safety and comfort, when given a choice between planning that future or turning it into only a dream, chose the latter. I needed a job with good insurance. We needed to be near a hospital and a pharmacy. My son needed special accommodations at school. In a world with unpredictable seizures, changing medications, and endless speed bumps, we needed stability anywhere we could find it.

Over the years, as my son’s condition started to normalize, even if not stabilize, we’ve started to venture out further. At first, it was back to Colorado or Florida, places where we always had the security of friends and family around us. We’d go for a week at a time to the Poconos, still only a few hours drive back to the city and its services.

Our first big trip was to Hawaii, where we stayed for almost two weeks. Even though we were with friends, it was the first time since the seizures began that I felt like we were disconnected from the constant watch and care of our safety net. Sure, there were seizures on the plane and in the hotel and on the beach, but we embraced the adventure.

The next big trip was to Panama. Again, we went with friends, but this time we spent part of our time deep in the mountains away from any major city, and the other part on an equally isolated island. There were seizures on the plane, and in the mountains, and on the island. But I felt even more disconnected there but still safe.

When the pandemic started and we knew that I was going to be working remotely for the foreseeable future, we decided to pack up and head to Maine for a month. It was just us in a small house in a remote town along the ocean, but I felt like we were actually living in another place. The seizures followed us there, too, but I was working, my son continued his school work with his tutor, and my wife was writing and working. We visited the grocery store, cooked, found a pizza place we liked, and continued our lives, just in a different place. Now, we’re doing it again.

I don’t know if that truly nomadic lifestyle will ever be in the cards for us. I hope to embrace more working from home, assuming working from an office is ever a thing again. But that voice in my head is also whispering words like stability, and doctors, and pharmacy. It’s telling me that the world is going to get back to normal, and that a job requires an office to go to, and that we need the safety of benefits and insurance.

But it is in those moments where maybe I need to remember where we’ve been. More so, I need to look around at where we are right now. And maybe I should step outside and go for a walk and reconnect with being disconnected. And be open to a different future where everything is still possible.



The Perfect Picture

Years ago, I was really into photography. I still take pictures, especially when we travel, but I used to be a student of the art. I would read and research the science of photography, explore the styles of other artists, and spent a lot of time working with the tools that turned pixels into photographs.

I experimented with different subjects and techniques. We lived in Colorado, so beautiful landscapes were right outside our door. I also took headshots and pictures of performances for my wife’s musical theater school. I had a few images published and got to photograph one concert with an official press pass. But a special treat would be when friends would ask me to take pictures of their families.

I loved capturing those images and still smile when I see a picture I created years ago handing on their wall. But it was stressful. I felt a lot of pressure to take a picture that they would love and not disappoint them. I wanted every image to be worthy of hanging on their wall, but so much needs to go right to create that perfect picture.

Some things I could control. After a lot of trial and error, I created a checklist to remember to charge batteries, format memory cards, check the camera settings, clean the lenses, and other technical items to get ready for the shoot. We’d pick a location ahead of time, and the right time of day to try and get the best light. And we’d talk about clothing to have a few options ready that would look good on camera.

There were things that were outside of my control. A change in the weather or an unforgiving wind. An irritable, teething toddler hopped up on ibuprofen. But if you can take care of the things that you can control, you can mitigate the uncontrollable things and still have really good odds for things to line up for that perfect shot.

When we were staying in Maine earlier this summer, we attempted to take our own family pictures. I went through the checklist I keep in my head to get my camera ready. We all got dressed in our “Summer Maine casual” attire that included the nicest of the Marvel T-shirts that I packed, since I only packed Marvel T-shirts. We primped and preened. And then we headed to the beach.

The lighting wasn’t quite right, but we found a few locations that would work. I took a few pictures, but it was clear that my son was having a hard time listening and staying focused. We took a few more pictures, but he seemed to be somewhere else. We tried to push through, but eventually we were all too frustrated to enjoy the process and it was showing up in the pictures, so we stopped.

Back in the house, my wife and I were reflecting on what happened, and why this seems to be a regular thing. She pointed out that we didn’t set ourselves up the right way. We should have known better than to ask him to do something that he wasn’t capable of doing because we didn’t set him up to be able to do it.

She was right. We know that if we need him to be present and capable of doing something that requires a lot of focus and attention, we need to prepare him. We need to give him his meds at the right time, eats at the right time, and that he gets enough sleep. We need to balance cognitively difficult task with “brain breaks”. We need to structure the day and our activities in order to succeed. Just like my camera checklist, we have one for our son that removes as much uncertainty as we can from a complex condition. We have to control what we can because there is so much about his condition that is out of our control.

Looking back, we didn’t do that. I ran through the checklist for the camera, but we neglected to do it for our son. We let our guard down and took for granted that we had a few good days, so we thought we could coast into success. But that’s not the way it works. And the result was, rather than a fun experience, that we all felt disappointed and frustrated.

We spoke with our son later that night and apologized for our part in that frustration. The last thing I wanted was for him to take all the blame and carry any shame from that experience because of how we might have reacted. He is getting older and he is capable of taking responsibility for his actions, and he said he was sorry, too, which was amazing. He understood that we all made mistakes and, most importantly, that, no matter what, he was wonderful, and supported and loved.