I applied to be a runner for I Run for Michael (IR4) back in the early summer of 2013. With IR4, runners are paired with people who have difficulty running due to physical challenges. By July I was matched with Gareth, a young man in Pennsylvania. The reason Gareth’s family had applied for a runner is because he has a mitochondrial disorder which makes it difficult for him to expend energy in a way that is equivalent to other boys his age.
Once you are matched, it doesn’t take long before you start dreaming of meeting your match. You share so much, on the private I Run for Michael page, in messages, cards, letters, and other types of communication. But nothing is the same as looking someone you have come to care about in the eyes.
When I started making plans to do the 2015 New York City Marathon on March 15, 2015, as part of Team in Training/Team SOAR, I started googling around for 5Ks in the area where Gareth lives, since it was within driving distance of NYC. Lo and behold, there was a 5K in his town on the Saturday before the Sunday half marathon! The event was the Warm Hearts 5K benefiting the Sam Vlasics Foundation for Heart Defect Awareness
On Friday, March 13, 2015 (yes, Friday the 13th!), I flew to Newark, and took one of the trip’s many buses into NYC. I dropped my luggage at a hotel room of a helpful friend, visited the race expo to pick up my number for Sunday’s half marathon, returned to the hotel room to consolidate my stuff into a small bag for the 5K with Gareth, and headed out to a bus for his town.
I should note that all throughout this traveling, and for days leading up to it, and until the moment my head hit the pillow that evening, I prayed that the 100% chance of rain for Saturday would be wrong (it wasn’t).
Saturday morning, Gareth, his mom Kim and his dad Nick picked me up and we headed to the race venue! Although I have done the race morning/packet pickup drill countless times, it was exciting to share it with Gareth. He wanted to take a “light jog” around the building and I was all to happy to oblige (because moving = warmth and it was quite chilly!!).
We snapped a few pictures before the race (unbelievably throughout the whole day we never managed to get a picture with Gareth’s parents in it — which is a disappointment but I suppose that gives us an excuse to get together again in the future!).
We did a bit of strategizing. Because Gareth’s mitochondrial disorder (MCAD) makes it difficult to use energy for an extended period of time, we decided he would run the first half mile with me, then wait for me to do the loop around an industrial park that followed the first half mile. We would meet up to run in together. Poor Gareth (and his dad, Nick) had the worst part of the deal … standing around in the cold rain FREEZING while I ran (and, sigh, walked some as I was dealing with the heart rate issues that have been cropping up lately).
Finally I made it around to the spot where Gareth was waiting for me. We had a little under a half mile to go. Having seen several pictures and videos of other IR4 children and runners sharing races together, I have to admit I had in my mind’s eye a picture perfect scene of Gareth and me crossing the finish line together, hands raised victoriously (NOTE: the picture perfect scene fantasy did NOT include freezing rain!).
Gareth and I started toward the finish line. He had lots of pent up spirit, having frozen to the bone while waiting for me. As we approached the finish line, my HR zoomed up (the preliminary diagnosis is Atrial Fibrillation but that is still getting resolved) and I had to stop and walk at what was supposed to be the big big moment!!! Given the choice of passing out (not picture perfect) and staying upright but walking, I chose to walk. It was awesome watching Gareth sprint through the finish line. He waited for me, came back to me, and we did cross the finish line together (chivalrous kid, this one!).
Gareth’s family took me out to breakfast at a local diner after the race. We were all happy to be out of the wet/cold weather and to share a meal together. (And yes, this southerner did have to ask what pork roll is!). As we finished up our breakfast, I checked the bus schedule and we came to the conclusion that we should try to get me to the 1:15 bus (which as it turns out is a Sunday bus (read schedules much, Paula?)). Good thing we arrived at the depot in time for me to catch the 12:45 at the last minute (hence the hasty goodbyes and lack of pictures with Gareth’s parents!). I was able to make it back to the city in time for a lovely warm shower and to get ready for a team dinner prior to my NYC Half Sunday morning.
I loved the fact that the 5K I happened on to was a benefit for a Congenital Heart Defect cause. My friend Karen here in Tallahassee has taught me a lot about CHD (and she sent an awesome goodie bag from Broken Hearts of Florida for me to give Dana, Sam’s mom and head of the Sam Vlasics Foundation). Since our family has a history of Long QT Syndrome, we feel an affinity for all causes heart related. I liked helping a cause close to my heart (yes, I had to say it that way!).
It Takes a Village
I started emailing Dana quite some time ago when it appeared I may be able to do the 5K. I explained the situation with IR4, and the fact that we would possibly need to make some accommodations due to Gareth’s MCAD. Long story short: she said “whatever you need, we’ll make it work.” And she did. I am so grateful.
In addition, I am a person who tends to do things by myself first and ask for help second. I made a plan to stay at a hotel Friday night (because frankly, as wonderful as IR4 meetings seem to almost always be, that’s a lot of pressure on two sets of people who don’t know each other yet), and I planned to take a cab from the bus depot to the hotel. It wasn’t a long distance but not really walkable at night. Yelp reviews such as this one left me feeling a little leery. When Kim offered to pick me up at the bus depot, I agreed. We had such a nice visit, and a quick sandwich (no, I hadn’t thought ahead to plan dinner (ongoing joke of the weekend — you’re a veteran traveler??)). It was really nice to visit briefly prior to race morning and get in our first “getting to know you” moments without the race adrenaline playing a part. I know Gareth and family had to wait around for the bus (which was later than planned), leave early on Saturday morning to pick me up, and make other accommodations to make my visit so pleasant. They were awesome.
You Gotta Have Heart
I was SO disappointed to have an AFib (if that’s what it is!) attack right before the “big finish.” At the times prior to meeting back up with Gareth that I had to talk to keep my HR down, and the times I had to stop and walk right before the “big finish,” all of the negative self talk I have struggled with as I have gotten slower and slower was swirling through my head. BUT of all the people around whom to accept the fact that I had to make accommodations for my health, this was the place to do it. That is Gareth’s life … making adjustments moment to moment to balance enjoyment and the thrill of using energy with the fact that the physical challenges necessitate doing things that don’t necessarily look “active” to unknowing onlookers. (And honestly…the scene of him running through the finish line by himself was priceless to me!).
I Get It A Little Better Now
You can read about mitochondrial disorder. You can tweet about it, try to understand, listen to people’s explanations. I still am no expert, but what I did “get” by being in Gareth’s presence is that like any boy he likes to go places fast. Even a trip to get a napkin involved a sprint or skip. When he and I were starting the race, I explained that I am running slower than usual due to trying to figure out this heart thing and appealed to him to pace me. But of course he wanted to run. Who wouldn’t? The challenge is the pain he may face later if he doesn’t parcel out the way in which his energy is used.
Love Love Love
I am struck, in ways I find difficult to express, with how much these two parents love their child. Not that they wouldn’t love their child but seeing that love in action, on a day called “warm hearts,” warmed mine. I am sure they think they are just doing what any parent would do, but they do it well and clearly this kid is their heart.
Why is Paula Wearing a Skunk Hat?
This day coincided with the Idiots Running Club Skunk Run. That called for a skunk hat (and skunk shirt, of course). I was a little worried about that until I “got” Gareth’s sense of humor. It all worked out!
Lastly, more pictures:
Note: The I Run for Michael organization has many more runners waiting for children to run for! For more information, visit the site by clicking this link. (Or ask me! I am happy to answer questions!).
Wife of one, Mom of two, Friend of many. My pronouns are she/her/hers.