Training from the Heart

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Pacemaker Camp

“Do you have a pacemaker or an ICD?”

“A pacemaker.”

“Me too.  I got it a few years ago, when I was seven.”

“I got mine when I was a baby.”

“Cool.  Hey, want to see this video?”

I listened intently from across the aisle of our coach bus. The girls were giggling, chatting, making silly faces and taking selfies on their phones. They compared sneakers and nail polish, then talked about which activities they’d choose the next day at camp (archery, for the first time this year; swimming, for hours and hours; ZIPLINING!!). 

It was day one of Pacemaker/ICD Camp. I didn’t know it then, but I was in for the most hectic, jam-packed, inspiring weekend of the entire summer.

Since I began working with the Heart Center, in 2011, I’ve heard stories about Pacemaker/ICD Camp’s magic every fall. As more of my non-clinical colleagues began to sign up as volunteers, I thought, hey, I like kids. I like s’mores. I should volunteer too! This summer I finally remembered to submit my name early and secure a spot in the afternoon pre-camp training for volunteers. Before I knew it, September 11 had rolled around, and I was on that bus as a counselor overseeing a cabin of 12 pre-teen girls.

I really didn’t know what to expect, but that’s because this camp is something you have to experience to understand. 

Kids with pacemakers are left out of traditional summer camps due to a frustrating conundrum: regular camps can’t afford the higher-tier health insurance they’d need in order to accept children with pacemakers, and camps for kids with life-threatening illnesses don’t accept kids with pacemakers because their condition is not severe enough. So, these kids are too sick for one kind of camp and not sick enough for the other. 

That’s why Pacemaker/ICD camp is so special. Here, these kids can be kids. They know what they can do, and they’re free to run and play and try new things. At this camp, many of the counselors are actually nurses and doctors from the Heart Center’s Electrophysiology Department who know exactly what exercise limitations, if any, each child has, as well as the medication regimens of each camper.

Watching children come out of their shells and exude confidence over the course of the weekend was truly a one-of-a-kind experience. A first-time camper in our cabin performed a solo dance/song routine in front of the entire group on Sunday morning. Girls who were too shy to speak more than a few words the first night strutted down the runway at our big finale costume fashion show.

Saturday wasn’t even halfway over when one of my campers turned to me and said, “This is the best day of my life.” (She later qualified that with, “Well, second best. The best day was when I found out I was going to be a big sister.”) These girls inspired me to let loose and have fun; I learned how to whip and nae nae, a new dance* that all the campers were doing; I went ziplining twice; and I donned a costume mustache, cowboy hat and Mardi Gras beads for casino/carnival/hoedown night. (Did I mention you have to experience camp to understand it?).

As camp drew to a close, moms, dads, siblings and grandparents slowly made their way up the hill to the dining hall where the end-of-camp slideshow was playing. Watching them absorb photo after photo of joyful, carefree faces at summer camp was extremely powerful. 

What I didn’t see over those three days was what the other 362 days of the year are like for these kids.  Speaking with the parents and families, I came to a deeper understanding of just how important this experience is—how important it is for them to feel just as capable and part of the group as anyone else.

After the final camper was heading home, and those of us volunteers who rode the bus back were ready to crash on our respective couches, Dr. Doug Mah turned to me and said, “So, you’re definitely coming next year, right?” It wasn’t the first time I had been asked that question over the course of the weekend.  At first, the repetition made me wary – but as camp went on, I had no qualms about answering with a heartfelt “Of course!” 

One mom told me the kids start counting down the days until next year’s camp as soon as they get home. What they probably don’t realize is their counselors are counting down too.

*This dance may not be new at all. Everyone who remembers the 90s feels old at camp. 

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- Sandra L. Fenwick, President and CEO

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