(Guest blog post for Conquering CHD by Laura Hoagland)
To say I enjoy summer is an understatement. I LOVE summer! Growing up in the Pacific Northwest summer was filled with family vacations to the coast, afternoons on the lake and attending a local summer camp with school friends. As I got older, and especially throughout college, I intentionally scheduled traveling into my summer agenda; tours through Eastern Europe, roller coaster riding in Disneyland, exploring Alaska, sky diving, road trips with college friends down the entire west coast, zip-lining down Whistler Mountain, bungee jumping and paragliding over the Teton Mountains after a day in Yellowstone. This summer, I’m exploring Sweden and Iceland. I’ve always had an adventurous spirit and summer is when my spirit can truly soar.
In 2009, as I was finishing up my undergraduate degree in Special and Elementary Education, I quickly became nervous about my future. Not only was I about to leave the safety and predictability of being a student and enter “the real world,” but I was entering adulthood with CHD. My anxiety and nervousness led me to a quarter-life crisis! So I took my problems straight to Google! I began searching for support groups for young adults with CHD. I had met a handful of people with CHD before, but never had I met another person with Tricuspid Atresia, a single ventricle or the Fontan physiology. I felt like I needed a role model, a support group, someone to help guide me on my journey as adult with CHD. I felt alone and I wanted my hand held as I ventured into the unknown.
What does adulthood with a CHD look like? My search turned up message board sites and some Facebook groups but I had no luck in finding an in-person support group for adults. However, I did find summer camps for children with CHD.
Summer camp? Children? I LOVED summer camp when I was younger and as an aspiring educator, working with kids seemed like summer fun to me! I found Camp Odayin in Minnesota. I was worried that the Midwest would be too hot and humid for my half heart, but after discovering that camp was on a lake and had air conditioned cabins I applied to be a counselor. That summer my adventurous spirit got on an airplane and flew to Minnesota, where I knew no one. As a volunteer camp counselor, I spent the week horseback riding, canoeing, swimming and becoming a human bowling ball down a slip n’ slide, all while wearing silly outfits. Oh, and I got eggs cracked over my head by campers!
As summer faded into fall my memories of camp continued to shine bright. After an exhausting year as a first-year teacher, I was excited for summer break. I was mostly excited to venture the 1,500 miles and spend another week at Camp Odayin. Before I was to fly out for camp, I was in Southern Oregon with my family. The week before this vacation I was taken to the ER because I turned purple. While in Oregon my oxygen saturations dropped into the 70s. My parents, veterans of traveling with a “high risk” CHD kiddo, kept calm and arranged portable oxygen for the duration of our trip. I called my cardiologist and we scheduled an exploratory heart catheterization once our vacation was over. Talk about a damper on summer fun.
Vacation was over. It was a Thursday and I was at Seattle Children’s Hospital about to have my bajillionth heart catheterization, I’ve literally lost count. As I was walking myself into the operating room, and began climbing up on the OR table, tears welled up in my eyes. I was 24 and scared. Six years before when I had a heart catheterization, it didn’t go as planned and surgical intervention was required. This summer, I had plans, so things needed to go as planned.
My nurse looked at me and in a half-sarcastic tone asked, “Would a teddy bear make you feel better?” I looked at her, tears rolling down my cheek and replied, “Yes. I know I’m 24 and I’ve done this before, but I’m scared of the unknown.” She came back with beautiful quilt and I drifted off to the calm of anesthesia. When I woke up, my nurse looked down at me and said, “You don’t need to be scared. You’re O.K.”
In recovery, the doctors shared that there appeared to be evidence of a small “shower” of pulmonary embolisms, and it was time to be more aggressive with Warfarin. I was to spend the next several days recovering from the procedure. I explained that on Saturday I had a plane to catch to Minnesota. He said no. I’m stubborn. Two days after my heart catheterization, I got on that airplane. Some may think I was running away from something, but in reality, I was running towards something.
My second summer at Camp Odayin changed my life. My recent “heart scare” gave me perspective, a different view of camp and my role as a counselor. I had a camper so cyanotic that she required 24/7 oxygen, and she rocked it with more grace and class than I could ever imagine doing at 15. I had campers who showed off their scars like badges of courage and honor at waterfront and when they saw my scars they got excited that mine matched theirs. When I told my campers and co-counselors that I couldn’t go horseback riding because my leg was still recovering from my heart catheterization, no one looked at me like I was “weak” or weird. They were just impressed that the night before I was piggybacking campers around the ball field.
Growing up I was never bullied for having a heart defect, but I always had to explain myself. I had to explain why running was hard, why I needed an oxygen tank or why I had a scar down my chest. No, I wasn’t bullied, but I felt alone. This week, at camp, I didn’t feel alone. I felt like I belonged. I met several other counselors who were adults thriving with CHD. To this day I call them my heart family. The mission of Camp Odayin began to heal my heart that had been emotionally exposed in the OR. My spirit soared, because it was free. Free of explanation, free of judgement, free of worry.
I volunteered for three more summers before moving to Minnesota in 2013 and being offered a summer job on Camp Odayin leadership staff. Now I’m entering my 5th summer as Summer Camp Co-Director. This isn’t an ordinary summer job, it’s a job full of summer fun! I get to kayak, ride pontoon boats with kids, sing songs, play games, go tubing behind speed boats, throw water balloons and roast marshmallows. At camp, I may act like a “big kid” but Camp Odayin is where I grew up. Ten years ago, I was scared to enter adulthood with CHD, I felt fear as the path of adulthood loomed in front of me…it looked dark, hollow and lonely.
When I first went to Camp Odayin I was struggling with my quarter-life crisis. I searched for people who could help me along the journey, to help me see the light within the tunnel of adulthood. When I left camp that second summer, I left knowing what adulthood for a CHD looked like. It looked like me. I realized I am the light in the tunnel of adulthood. By living and continuing my journey, one day at a time, my experiences shine bright and illuminate the future, for my campers and other CHD survivors.
Deep in my heart, where there was once a hollow, lonely feeling of fear and an emotional wound, there is now hope, joy and confidence. At Camp Odayin I have the most summer fun imaginable, a week to be the role model I once longed for. When I introduce myself to campers, I don’t tell them I have a congenital heart defect, I just introduce myself as Hoagie. My intention as Camp Co-Director is to be my most authentic self and create a week where campers feel free to be themselves, no explanation needed. If they notice my scar and bring it up, I’ll share my heart story. If they just want to talk football, that’s OK too. In the summer, we’re free to be and as we say each night at Camp Odayin, “you can be happy if you let yourself be.”
Laura Hoagland was born with Tricuspid Atresia, Pulmonary Stenosis, VSD and and ASD. Laura has a single ventricle and had the Fontan procedure in 1991 at the age of six. If Laura is not at camp or in her classroom teaching you can find her adventure seeking and traveling. Laura lives by the motto, “half a heart, not half a life!”