My “Heart Family”

Throughout the first 12 years of my life, I was presented with a few opportunities to meet other patients with congenital heart defects. There were no other young heart patients that I knew of at school, in my community theater family, or in my dance classes, but throughout my four heart surgeries, my family and I connected with patients in the hospital enduring the same everyday struggles. As we all know, however, a hospital is very unlike the outside world. Patients see and are perceived through a different lens. The summer that I turned 12, my world opened up. I became part of a new family that would change my life and I found a new best friend who will be a friend for life.

I learned about Camp Odayin, a camp for kids with heart conditions in Minnesota, from a nurse at my hospital in Michigan. After flying to Minneapolis, I hopped on a bus that would take about 50 campers on a three-hour trip to the beautiful wooded town of Crosslake. When I sat down, however, I immediately became homesick, and second-guessed my decision as a camper next to me began to cry because she didn't want to leave her mom. A very wise counselor suggested I switch seats with her, and my new seatmate uttered three memorable words that would change my life forever: "Hi! I'm Cassie."

The friendship that Cassie and I established that summer was just the beginning. I was fortunate to spend five incredible summers at Odayin, and each year, my bonds grew stronger. I developed a very large “heart family” over those five years, many of whom I am still close to today. Camp Odayin has meant so much to me that I have volunteered as a counselor for the past six years and hope to volunteer for many years to come.

Volunteering at camp and other congenital heart-related events like heart walks and benefits has opened my world to even more people with ACHD. I even moved from Michigan to Minnesota almost two years ago so I could become more involved in camp-related activities and to see my heart family more often. There are many former campers, like myself, who have become counselors. I meet campers every summer who see a positive future for themselves when they discover that their counselors share similar heart conditions and are leading full, productive lives. If you're part of the ACHD community and you want to meet and help others with similar heart conditions, I highly recommend volunteering at a camp for kids with heart-related illnesses—it’s an excellent option.

The most significant thing that I have learned from my heart family is that I am not alone. When I have had issues with my Coumadin, end up in the ER because I have fallen and hit my head and need a CT scan because of my blood thinners, or have had bleeding during oral surgery, I realize how fortunate I am to have this network of people who are always willing to listen and understand my struggles. For many heart patients, one of the most significant things that set us apart from our peers is our surgery scars. While we may be teased for them at home, camp is a place where most everyone has a battle scar, a place where these are seen as badges of courage and bravery.

I have witnessed campers connecting at Camp Odayin because this is the first time they are meeting someone else with the exact same condition as them. My heart family and I have been through so much together, including losing some of our own. Through these experiences, I have also learned to live every day to the fullest and to cherish those closest to you, because you never know what tomorrow could bring.

I am always looking for opportunities to grow my heart family even stronger. This June, I will once again have the opportunity to meet congenital heart defect patients at the Adult Congenital Heart Association conference in Orlando. This will be my first time attending this conference, or any ACHA event, and I am beyond excited to finally meet individuals who I have been connected with on social media for months.

I am so lucky to have had these opportunities, and know that so many future possibilities will allow my heart family to grow even more. To quote my favorite Camp Odayin song, “All of our hearts are deeper than you can see. You can be happy if you let yourself be.”