Keeping the Beat: A retreat for kids with pacemakers and ICDs

Kids from the retreat get ready to zip line.
Photos by Richard Koch

Every year in early September, something extraordinary happens at the YMCA Camp Burgess on Cape Cod. That’s when a group of kids with pacemakers and implantable cardioverter defibrillators (ICDs) descend on the campground for the Keeping the Beat Retreat, a weekend filled with games, outdoor activities, dancing, singing and bonding. This year, I was lucky enough to get to join in on their fun as a volunteer counselor.

The weekend began with hugs, high-fives and screams of excitement as the kids piled off the bus and connected with old friends and former counselors. As a first-timer, I was clearly in the minority. Many of the kids have been attending the retreat for years, some since it began in 1999.

  • A counselor plays the ukulele for two boys.
    A quiet moment with a ukulele

Dinner, dancing and s’mores

The festivities started on Friday night with dinner and a dancing party, followed by a huge campfire by the lake with s’mores and lots of “repeat after me” songs. Judging by the volume, the kids knew many of the songs by heart. By the time we finally made our way back to our cabins, it was way past many of the younger kids’ bedtimes.

About the retreat
The Keeping the Beat Retreat offers some Boston Children’s patients with pacemakers and ICDs the only opportunity they may have to attend a camp-style retreat. Kids with chronic heart conditions are often excluded from traditional camps, and yet aren’t considered “sick” enough to attend a medical camp. In addition to providing a safe, structured environment for these kids to explore and have fun, it also helps build more trusting relationships between the kids and the medical staff, which can ultimately help improve the kids’ health.

The next day, the retreat got into full swing early, with bingo and breakfast followed by dancing. I quickly discovered that no meal at the retreat is complete without a few spins on the dance floor. Manning the DJ booth for the weekend was Lou Bergholz from Edgework Consulting, retreat director extraordinaire. Not only did Lou have his pulse on the kids’ favorite tunes and dances, both new and old, but he also knew every attendee personally by name.

After clearing the dance floor, the kids began the first of four activity sessions for the day. For each session, they got to choose between rock climbing, arts and crafts, boating and swimming, archery, ziplining, outdoor games and photography.

“What surprised me the most was how immediately positive the experience was for the kids,” says Maia Borensztein, a research assistant at Boston Children’s and another first-time volunteer. “Usually it takes kids a few days to warm up. But they just jumped right in from the moment they arrived and were willing to try everything.”

Lou Bergholz, retreat director, poses with a group of kids.
Lou Bergholz, retreat director, helps get the crowd cheering.

Keeping an eye on health

Throughout the weekend, Dr. Doug Mah, director of the Pacemaker and ICD Program at Boston Children’s and medical director of Keeping the Beat, along with Dr. Laura Bevilacqua and nurses Amy Walsh and Kimberly Deckett kept an eye on everyone. While nurse Jamie Harris couldn’t be there in person this year, she was key in coordinating and organizing this year’s retreat.

The medical oversight is so well-orchestrated that you barely even notice it. One minute the medical staff would be dancing along to “The Wobble” or “Cotton Eyed-Joe,” and the next giving a dose of medicine before jumping back in to join a conga line.

Kids dancing at the retreat.

“It was really cool to see how comfortable the kids were with each other and the staff,” says another first-time counselor, Cate Gray, a researcher for the Boston Adult Congenital Heart (BACH) Program at Boston Children’s. “It’s one place where they can be totally comfortable talking about their heart conditions — they were all comparing scars and swapping stories.”

After dinner on Saturday, the main lodge area was transformed into a huge boardwalk-style area for Carnival Night, a big favorite with the kids. Wacky costumes and western wear are encouraged as kids, counselors and medical staff play a variety of carnival-style games to earn as many “chips” as possible for their cabin.

Kids from the retreat play the frog toss during Carnival Night.

I was completely wiped out by the time we headed back to our cabin. We got ready for bed and gathered around the girls’ bunks to talk about highlights of the day. After we counselors turned in for the night, the girls stayed up, talking about their favorite TV shows and sharing stories about their lives. It struck me how inclusive and kind they were with each other. As the mom of two teenagers, I know this isn’t always the case.

Ice cream for breakfast

Sunday morning was the much-anticipated ice cream breakfast. (Yes, it was as good as it sounds.) The kids exchanged emails and Twitter handles while Lou spun some more tunes. When he played “Fight Song” by Rachel Platten and “Don’t Stop Believing” by Journey, all the kids stopped what they were doing to join in. It was incredible to watch these kids, of all ages and backgrounds, respond in the same way to these songs of courage and hope.

Ice cream breakfast at the retreat.
Lining up for the ice cream breakfast

After a morning activity session, we gathered back in the main lodge for lunch, followed by a slideshow of the weekend’s highlights. Then we headed outside and made a huge circle for a final closing ceremony. In turn, each group of kids, counselors, staff and clinicians ran inside the circle to give and receive high fives from the rest of the group.

Everyone from the retreat poses for a group shot.

As I watched the kids file back onto the bus, it was hard to believe the weekend was already over. Time to start the countdown to next year’s retreat.

Learn how you can help support the Keeping the Beat Retreat.