Back in 2016, I came across this special camp for kids with heart disease called Camp Taylor in Modesto, California. You see, I was in the midst of trying to digest the fact that my daughter had this thing called Long QT Syndrome and CPVT (yep—both) and that she had almost died. I was looking on the SADS website when I finally could go to it without crying and found a link about children’s heart camps. This is how I found Camp Taylor which is a camp that provides free medically supervised residential camps for kids living with heart disease. I checked out their website and honestly it looked pretty cheesy to me, but I needed a break. I was so exhausted after taking Sofia to her physical and speech therapy appointments as well as her cardiology, neurology, and psychology appointments. Battling with her to take her beta blockers every morning and her asking me through tears “why me” almost every day was my life. So, I signed her up and crossed my fingers they’d take her since it would only be 3 months since her cardiac arrest. I mean, when I applied, she couldn’t even remember what she ate for breakfast much less which drawer her shirts were in. At least they had a camp cardiologist and cardiac nurse practitioner on-site for the duration of camp as well as one nurse (usually a CVICU nurse) for each group of 8 kids. She’d be safe and maybe I could finally get some much-needed rest. Thankfully, they accepted Sofia. I would soon realize how deeply grateful I would be for Camp Taylor.
Camp Taylor changed Sofia. The child I picked up now took her pills like a champ because her cabin-mate (a heart transplant recipient) could take “HUGE” pills with “NO WATER MOM!” But even more important, Sofia no longer felt alone. She found her tribe. She was surrounded by kids who had scars on their chest. They didn’t stare at each other because they pretty much look the same, but also they know what it feels like to be stared at. They have dedicated time to talk and journal about her hopes and fears. During Heart Education, not only did they get to learn more about their heart disease, they learned about their cabin mates’ heart disease. Many of the camp counselors also have heart disease which means the counselors truly understand what the campers are going through. The counselors also serve perhaps a more important purpose. That is to remind the campers that they too can live and thrive in spite of heart disease. I was not prepared for the tears that streamed down my face when I picked Sofia up from camp. Tears of gratitude that I found this camp and tears of sorrow that I had to find this camp. As soon as we left, she was asking when she could return.
“You always have a place here.”
If you are reading this blog and your child has heart disease, please consider finding a heart camp to send your child to. There are not too many and, while some require your child be a patient of a particular hospital, others do not. Camp Taylor does not. They have welcomed campers as far away as Texas. If you have questions about Camp Taylor, please e-mail me at firstname.lastname@example.org.
About Shawna: Shawna is a heart mom from California who is a married mom of two spirited daughters—Sofia, 11 and Gabby, 6.