This is going to be a several-part series about my unexpected trip east. It was originally just going to be about my diet (which I’ve made a few concessions on), but I figured I had to get more involved. There will be subsequent parts about my diet and about all the crazy stupid things that happened to us, but first, a moment to talk about why I left.
A very good friend of mine, Jason Marshall, and his wife Jen lost their 15-month old son Gavin a week ago. Gavin was born with congenital nephrotic syndrome, a very rare genetic disorder that causes his kidneys to leak out proteins and other nutrients. While I never looked, I was told the mortality rate of this extremely rare condition was quite high (more than 50%?) So I don’t think anyone would ultimately say it was totally unexpected that he passed, but what made it most surprising was the timing.
The first year of this condition is the hardest, and he made it through more or less unscathed. Despite having to have frequent treatments (at first they were daily and then every other day, for four hours, in the hospital.) After many months, they were able to transition to home treatments, but any sort of complication (such as a low-grade fever) meant they had to go back to the hospital, and it was usually for several days or a week or more. However, after a month-long battle at the hospital a few months ago, Gavin had shown signs of doing the best he’d done – gaining weight, being in great health. Jen had recently taken a video of Gavin walking (with the assistance of holding onto things) ALL around the room. Then, last Thursday, he simply stopped breathing. Despite the valiant effort of the EMTs, they could not bring him back.
I heard this news at around 7:30 am last Thursday. By noon, I had already made plans for the whole family to head over to New Jersey and then Connecticut to be there for Jay and Jen. Now, I’m not a godparent to Gavin or anything, but I always felt there was an extra-special kinship that the Marshall family and ours shared, despite the kids never having met. Jay has probably spent more on cool onesies and gadgets for Duncan and Landen than we have, and I was fortunate enough to be able to give parenting advice here and there for Gavin (I was one of the first of Jay’s friends to be a father.) So it was a no-brainer for me to be there.
Let me tell you about Gavin. In 15 months, he was able to touch more lives positively than most people strive to in a lifetime. He was loved like few others out there, and he loved with such amazing strength right back. He had a smile that melted hearts, and they melted often as he smiled all the time. There were a few things about Gavin I noticed in the two times I’d been fortunate enough to meet him. He was trusting, loving, and incredibly bright. He taught those around him so many things: how to fight, how to scooch, and how to love. But the one thing he taught over all else was how to smile amid adversity. His life was about as challenging as you could get for a child of any age, yet you’d be hard pressed to find a photo of him not grinning ear to ear. In fact, among the photos at the wake was one where someone had held up a clear drum-head, and Gavin put his mouth up to it and blew, puffing out his cheeks. It is one of the greatest photos I’ve ever seen.
As I said, I was lucky enough to meet him twice. Once when he was probably less than 3 months old. He slept for nearly the few hours I was at Jay’s house, though I did get to pick him up a few times when he eventually awoke. He was so light at the time, yet I still felt like I was holding not just a baby, but a whole person. The seeds for his glowing personality were already there. But it was the last trip I’ll always remember.
Last month I had to go east for work. I arranged it so I’d have a disc golf tournament to go to in CT. It was an excuse to try to get up to see Jay and Jen and Gavin. It became immediately apparent though that the plans just didn’t line up – Gavin was basically confined to his house on Saturdays for his treatment, and I had to be back in Jersey by 7 for another obligation. But I was driven at the time to see them for reasons I didn’t know then. I borrowed a car and woke up at 7:30 to drive 3 hours up to see them when he got up from his nap. Before I drove down 2 hours to practice at the disc golf course I would have at tournament, I squeezed in maybe 3 hours of hanging out. In all, I drove 5 hours out of my way. But I was resolute in my desire to go. While there, I got to see enjoy the magic that is Gavin. I took some photos with him and of him playing with a friend’s 4-month-old. I got to watch him perfect the art of forward-scooching. I took him on a walk, just him-and-me, to the pond in the backyard, where we talked about fishing. And most dear to me, I got to play a simple game of rolling a ball back and forth with him for more than 5 minutes. At the time, I thought it was simply really cool. Now I think it’s one of the coolest thing I’ve done in a long time.
It’s not just me. The scope of people that Gavin affected is far-reaching. I would estimate there were several hundred people who filed in and out through the 4-hour ceremony. Family, friends, neighbors, and friends-of-friends. Perhaps the most touching was the stream of nurses and doctors who visited. I had heard that many nurses had stopped by, and those that weren’t there were covering other nurses’ shifts so more could come. I don’t know the tally, but I do know these people were simply doing their JOB and they fell in love with Gavin and had to pay a final visit. The nephrologist (sp?) came by too, and she had just retired two weeks previous. If one of my clients passed, I doubt I’d even know. When Gavin passed, everyone knew, and everyone cared more than they might have thought. I know I’ve cried more tears this week than I have in the last 5 years put together.
I’d met Gavin twice in fifteen months. In that time, I’ve not seen my mother at all, nor one of my brothers. I’d only seem my twin brother once. There was something special about Gavin, and I feel honored to have ever met him. I know many there at that wake had never had the pleasure.
Gavin Robert Marshall, rest in peace little buddy. Your smile has made – and will continue to make – countless people smile in return.