Choosing Butterflies

Camp Oki

Before 2010, Heart Month would’ve been another awareness day/week/month that passed me by without more than a “There’s a day/week/month dedicated to that?” and then I’d move on with my life.

But in 2010, a few years into the corporate world, I wanted to do something meaningful with my vacation time. Specifically, I wanted to volunteer at a camp for kids who were sick, and I told a group of friends this. One of those friends was a nurse who said, “I actually volunteered at a camp for kids with congenital heart disease. Do you want me to connect you?” And I said, “Sure.”

Then after a few more conversations, saying “Sure” a few more times, documenting my vaccine history back to the very beginning of my life, and a panicked “what have I gotten myself into” email to a random camp volunteer, I was driving up to Camp Oki.

This was probably the biggest Butterfly Moment I’ve ever experienced…and this was before I even knew that Choosing Butterflies would be a thing in my life. I was absolutely terrified the entire time. And it changed my life.

Today, the fact that February is Heart Month hits me hard. I read all the articles and watch all the videos. Heart Month stats are so completely personal to me now.

Congenital heart disease (CHD) is the world’s leading birth defect. About 1 in 80-100 Canadian children are born with CHD. (source)
For me, these 1 in 80-100 are real people. They make friendship bracelets, sing camp songs, and stay up after I think they’re all asleep. They put on bathing suits that reveal the scars they usually hide. They giggle and argue and cry and solve problems and hug. They love Justin Bieber and they hate Justin Bieber. They try new things with trepidation and they try new things with more enthusiasm than I know. Their late night conversations cover topics such as hospital food and exhausting stress tests and MRIs. They answer the question “do you have a heart transplant?” with “not yet.”

These 1 in 80-100 are faces in my life. They are faces that I spent a week with each summer for four years. Today, they are faces that occasionally show up in my social media feed, that look back at me in photos, and twice they’ve showed up in real life when the stars align and we unknowingly are in the same place at the same time.

And the sad reality is that these faces can be very sick, and some are gone too soon, like Candace. And out of something so tragic, comes strong bonds between heart kids and a support system that I don’t think adults are capable of forming.

Sixty years ago only about 20% of children survived to adulthood; that number has since increased to about 90%. (source)
Because of Oki, two of my closest friends are adults with CHD (one of which was the recipient of that “what have I gotten myself into” email). For the most part, they live completely normal lives – working in exciting jobs, planning weddings, having kids. But things I take for granted are a little more complicated for them. For example, one had to commute from North Bay to Toronto to give birth to her son. The other has to avoid alcohol completely. This is their reality.

Sandwiched between two friends with very special hearts

And I also got to meet Maya. Maya had cancer when she was a baby, had a heart transplant when she was 21, and just last month was diagnosed with cancer. Again. She’s kind of amazing and an awesome writer and you should read her blog.

Despite the physical and psycho-social benefits associated with physical activity, the majority of youth with heart disease are inactive. (source)
Side note: this research paper was conducted by Dr. Fiona Moola, my dear fellow Oki volunteer and crazy smart friend, and Dr. Joel Kirsh, the Founder of Camp Oki

Oki campers would tell us over and over again, “I can’t do that, I have a heart condition.” Capture the Flag, climbing to the top level of the high ropes course, swimming in the lake… “I can’t, I have a heart condition.” To which we responded, “so does everyone else here, and I think you can.” And they did. Kids with CHD are fragile, but not as much as their parents, teachers and coaches might think, and in turn, as much as they might think.

At camp, there were doctors and nurses to be there “just in case”, there were encouraging friends who somehow knew how to implement just the right amount of peer pressure, and more than 100 other people that cheered for them when they did the thing they told us they couldn’t do.

At Oki, I witnessed kids swim in a deep lake without a life jacket, discover they were really good at archery, and could, in fact, eat 12 pancakes at breakfast. I saw kids cautiously start a game of ultimate Frisbee and finish the game running full speed into the end zone.

I saw so many first times…first time wakeboarding, first time playing basketball, first time sleeping away from mom and dad. And when heart kids do a lot of firsts in a safe place with fellow heart kids also doing firsts who are all cheering for each other? That, right there, is the magic of Oki.

Because I randomly told a group of friends about a very specific idea I had, and then acted on it when the opportunity presented itself, I am a Heart Month advocate. Not because I was forced into it by circumstance, but because I chose it.

And if there’s one message I can share as a Heart Month advocate, it is be a donor. I can tell you stories about kids (and adults like Maya) who have been given more life because of a heart transplant. They’ve gotten to go to camp and make friends and have experiences that they wouldn’t have had if it weren’t for a heart donor. Organ donation impacts real people with real stories that might have more chapters because you’ve registered and let your family know.

So when you hear it’s Heart Month, I hope it won’t be an awareness day/week/month that just passes you by. I hope you’ll think of Oki and my campers, and Candace and Maya, and all the people living more life because of organ donation.