Summer in September: Pacemaker/ICD Camp lets kids be kids

Grace ziplining (3)Often you hear from parents that they want their child to be the best, the standout star — the child who rises above the rest and sets herself apart from the group as unique or special. But when you have a child who is often told NO, who has been set apart from a group because she is considered too fragile, too sick, too something … your hopes are different.

No child wants to be left out— an onlooker, an outlier — as many of our children are in their everyday worlds. For a parent, seeing your child cast aside due to something completely out of her control is often heartbreaking.

When Ligia Jordao, a nurse who worked for many years with the Heart Center’s Electrophysiology Program, told my husband Mark and me about Pacemaker/ICD Camp, we were skeptical. I couldn’t imagine sending our Grace off for a weekend by herself without us.

How could we drop off our precious girl, with a g-tube, a pacemaker and visible — and not so visible — scars that may show in her pink swimsuit?

Ligia listened to my fears and we both cracked up — me through my tears — at my worries. She reminded me the electrophysiology staff were at the camp, and if we added up all the hourly rates of the volunteers like Dr. Doug Mah, nurse Amy Walsh, nurse Jamie Harris, Jose Rivera, Susan, Adriana, Emily (and many more ) our kids would have the most qualified AND expensive babysitters in the world!

I cried the ugly cry in the passenger seat as we pulled away after dropping Grace off for her first night at Pacemaker/ICD Camp, my husband holding my hand the whole time.

best cabinThe afternoon we picked her up, moms, dads and grandmas lined up with tear-streaked faces as we watched a slideshow set to music.

Pictures of our heart kids careening off platforms held only by a zip line, line dancing to “Cotton-Eyed Joe” and kayaking across a lake were greeted with hoots, hollers and cheers from the crowded room, while Sara Barielles’ “Brave” played in the background.

It took my breath away to see Grace and all her friends in the Pacemaker/ICD Camp photos as one of the crowd.

Our Grace had found her people. Thanks to all of the nurses, doctors, Lou Bergholz and his amazing staff from Edgework Consulting and the incredible counsellors at Camp Burgess, all of our kids were part of one pretty Cool, Smooth, Stylin’, Groovy bunch (These are the names of the different cabins.) who just happened to have pacemakers.

The countdown to next year’s Pacemaker/ICD CampEllie Meghan and Megan (3)

Grace started counting the days until next year’s camp the moment we began our trip home.

Along with her camp friends, she held on to rubber ducks, sported silly hats with mustaches and proudly showed off camp T-shirts all year long to envious friends and siblings.

Then Sharky (a camper-turned-counselor) posts the countdown, Amy and Jaime sift through mountains of paperwork, Lou compiles dance playlists, and the kids eagerly await the moment when they step off the bus in beautiful Sandwich, Massachusetts.

But we parents, we silently hold back tears as we check and double-check our to-do lists, making sure we completed physical forms, sent one last pacemaker just in case and packed favorite pillows, stuffed animals, crazy outfits for dance parties and of course — medications.

Before we know it, September finally rolls around and our heart kids are campers again — just one of the crowd.

Thank you to the huge crew of selfless dedicated staff for willingly joining this amazing family. Your commitment and obvious devotion to our kids is appreciated beyond words. Thank you, thank you from the bottom of our super-powered hearts.

Tracey and Mark are parents to Sydney (congenital heart block), Grace (congenital heart block, pacemaker) and Jude (born with congenital heart block discharged from cardiac care at age 4).
Tracey and Mark are parents to Sydney (congenital heart block), Grace (congenital heart block, pacemaker) and Jude (born with congenital heart block discharged from cardiac care at age 4).

Learn more about Boston Children’s Heart Center’s Electrophysiology Program.