I Believe...

I believe that children with heart disease are special and God put them here on Earth for a reason. I also believe that these children have resilience and strength, and can bounce back from anything life throws at them. I believe that they are meant to inspire others and despite some extra challenges they may face, they can achieve their dreams just like anyone else.
When I did the interview for my project I asked, “If you could change having heart disease, would you?” I was surprised to here that both the children and parents said that they would never change a thing. Many of the parents said that they thought everything happens for a reason and even though their child may have heart disease, they love them no matter what. Another parent said that they couldn’t imagine a different lifestyle and life without heart kids would be boring. They also felt their child having this condition is one of the reasons that would bring their family closer together. As I observed the families, I could feel the love they had for each other and just how blessed they felt to have their child. For the parents, their kids mean everything to them. They are their parent’s bundle of joy and love of their life. These children have the power to spread their love and sparkle of life to everyone around them.
I think the kids have come to realize that having heart disease is just a part of who they are. It’s taught them to live with compassion and given them strength, strength to fight and to survive. Without this resilience, many of these kids would probably have died, because let me tell you, these kids have gone through a lot, both physically and mentally. They have physically endured doctors visits, hospital stays, medicines, catheters, open-heart surgeries, scars, feeding tubes, stents, and pace makers. They have also mentally overcome struggling to fit in, classmates teasing them, feeling different and left out, not being able to keep up with their friends from fatigue, and people picking out things they can and cannot do. Yet through it all, they stand tall. Their inner strength inspires others. One of the parents said, “Just watching how strong my son is, has made me stronger too.”
Though it is very challenging to be a child living with this disease, if these children never had their medical conditions, the families I talked to would never have met each other. They met through a group called Kardiac Kids, which is a support group for families who have children with heart disease. The four families that I spoke with became extremely close and get together almost every week. I’ve seen with my own eyes the strength of the bond they share. They understand each other and what each other has gone through. They support each other thorough hard times and can relate on a level like old friends or close family. Despite the struggles they face daily, they enjoy life to the fullest. Because the kids cannot engage in extreme physical activities and sports, they put together a singing and dance group called the Mini Heartbeats. I’ve gone to some of their get togethers and these people party like no other! They sing, laugh, eat, and dance the night away! As Keegan, one of the heart kids said, “If we want to dance, we will. We're trying to prove people wrong. We're going to go out there and we're going to dance." God couldn’t have hand picked a more perfectly matched four families than these to have met.
Though all four of these families are not the wealthiest bunch, what they lack in money they make up in heart. There’s an annual heart camp every year, Camp Taylor, and lots of money is needed to fund this camp. These four families are extremely motivated and fight for the camp to happen every year. They fundraise and do everything from garage sales to setting up booths and fundraising websites. Their hard work allows this camp to be held for their families and for other “heart” families.
One of my favorite quotes from Camp Taylor is “Pills and pacemakers keep these kids alive, but Camp Taylor lets them live!” This camp is one of the single places these kids feel completely normal in. It’s a safe haven, a world away from their daily trials and tribulations. It is a camp created just for them, where it’s normal to have a long, zipper scar across your chest, it’s normal to take daily medications, and it’s normal to get tired easily. As one of the camp members said, “When I am at Camp Taylor, I don’t feel like I am the only one with heart problems. I can just be in my own skin and not feel embarrassed about my body.” Before these kids go to this camp, many of them don’t know anyone else with their same condition and feel very alone. When they look around camp and see all the other kids just like them, there’s an immediate connection because they know they’ve gone through similar life experiences and know what it feels like. Ryan Russell, a camp mentor said, “Being part of Camp Taylor has given me a new found sense of self. It has made me comfortable with my disease, no longer alone. I now belong to a community where I most definitely belong, to a unique group of people very few can relate to. People can say they understand what my family and I have been through, but they can’t possibly. Camp Taylor lets you surround yourself with people who “know” what we’ve been through, even if they don’t actually say it.” Camp Taylor gives these kids a place where there’s people they can count on who have gone through similar experiences. Camp Taylor also allows these kids to accomplish things they never thought possible such as a ropes course. People always tell them what they are incapable of or shouldn’t be doing, but at camp they are finally told, “Yeah, go ahead and do it!” It is a place that encourages them to do all they can and helps them to believe they can achieve their dreams.
Though most children with heart disease have endured far more then most will in a lifetime, they still hold on and stand strong. Activities and groups like Camp Taylor, Mini Heartbeats, and Kardiac Kids lets them live their life out to the fullest. I believe that they were given this medical problem as a source of inspiration for all that witness their fight and resilience. Though these kids may never be pro athletes or win a Super-bowl, they’re already winners. They have beaten death and have lived to tell their story and rejoice in their victory.