On Finding His Tribe

When I was maybe 10 or 11, I read a book about a girl named Dawn, who had cancer. I remember her going to “Cancer Camp” and how much it meant to her to be around her peers, to feel “normal.” For some reason, the idea of that camp stuck with me. I just never knew how close it would hit to home with my own family years later.

My 6-year old son, Bodie, has Hypoplastic Left Heart Syndrome (along with a few other fun surprises). For the past almost 7 years, I have immersed myself in the “Heart Community.” I have made friends with other heart moms, some only virtually through social media, some only in person, and some that started virtually but eventually became in person relationships. In it, found MY tribe. It is full of amazing women with stories like mine, who have children like my son. Women who share my fears, and who talk me off of my anxiety ridden ledge at 2am. We are there for each other through this crazy journey.

I have introduced some of these women to my family, and we do things with the ones who live locally. My son, and his 9 year-old heart healthy sister, get to see other kids like them occasionally. I thought that was enough. I really did.

I was wrong.

MY tribe has been wonderful for me. But it hasn’t quite met the needs of my son and his sister. And I didn’t even realize it, until last weekend, when we went to our first Heart Camp. And then I saw it. The profound connections made between survivors. The look that simply says “I’ve been there. I get it.” The sense of comradery, of feeling “normal” in a world where their scars make them anything but. The overwhelming shared hope of seeing older survivors living amazing, authentic lives in spite of their very serious heart conditions.

Meeting up with a heart family here or there, or once a year at a Heart Picnic is wonderful. There is a very valuable space for that. But, honestly, there is a vast difference between a few hours spent with other heart families – and 72 hours straight spent immersed in the heart culture with tons of families (there were over 60 families at our camp!).  It is difficult to even put into words what our weekend at Heart Camp meant to us as a family.


Perhaps the best way to explain it is to describe the most profound moment of the weekend for me. My sweet boy, at the tender age of 6, has just in the past 6 months or so started to become self-conscious about his scars. This summer, he has wanted to keep his rash guard on anytime he is swimming.  On Saturday night, the camp was offering all sorts of fun activities, including tattoos and face painting. My son wanted to put a tattoo on his chest. But he wouldn’t take his shirt off. He asked me if we could just go to the bathroom and do it instead, and then started to make up all sorts of excuses for why he didn’t want to get the tattoo after all.

I was at my emotional wits’ end. Despite my reassurances that it was heart camp and he didn’t need to worry about his scars, he wouldn’t budge. I didn’t know how to help him. And then, something extraordinary happened. Our family had been assigned a mentor, an amazing teenager living with heart disease, to shadow us for the weekend. Our mentor was Kenny. When Kenny realized Bodie was struggling, he came over, took his shirt off to show his own scars, and began to talk to Bodie. Before I knew it, we were surrounded by 3 mentors, all teenage boys with their shirts off in the cold evening air, just to show my son that his scars weren’t anything to be ashamed of. And they were reassuring me that they, too, had all gone through it.

Kenny took Bodie a bit away from us to talk to him. I don’t know what their conversation entailed. All I know is that, in a very short period of time, my son had his shirt off and wanted to show me his scars and talk about how brave he was.

I know this is a journey, and this won’t be the last time we talk about my son’s scars. But last weekend was a valuable stepping stone in his journey to acceptance. And for that, I will be forever grateful. That moment would never have happened without heart camp. I love my son, and I support him in every way I can, but, at the end of the day, this is HIS journey, and I don’t know what it’s like to walk in HIS shoes. But his peers at Heart Camp do.

On Saturday morning of our camp, we had the opportunity to attend a Q&A panel with 12 of the teen mentors. Upon being asked what had helped ease their journeys the most, every single one of them recommended Heart Camp. And I don’t doubt it. The benefits are enormous. It was clear from looking at how close all of the teen mentors were that their experiences at Heart Camp had fundamentally shaped their views on their hearts and their futures. They were an exceptionally inspiring and tight knit group of young adults.

We are profoundly lucky in California, since we have 2 heart camps to choose from, Camp Taylor in Northern California (where our family was last weekend) and Camp del Corazon in Southern California (which starts at age 7). With a family camp for younger kids, and options for siblings to attend youth camp alongside the CHDer, Camp Taylor was the perfect choice for our family.  And one that was absolutely worth every minute of the 5 hour drive there. Not every state has 2 options within driving distance. But there ARE camps across the United States. We at Sisters by Heart are working on compiling a list – if you know of one, please let us know so we can add it to our list! If you have a CHDer of school age, I could not encourage you enough to see whether there is a heart camp near you.  We met one teen mentor who flew from Denver to California for Heart Camp each year. I promise, the experience your child gains will be 100% worth it!

Before heart camp, I had MY tribe. Last month at Heart Camp, our son found HIS tribe.  One that he will walk with for the rest of his life. And for that, we are inexplicably grateful. As they so beautifully put it at Camp Taylor, heart camp is where "Kids Meet... Scars Blend... Wonders Happen!!!