There was a time, not too long ago that patients like myself and my friends with CHD didn’t live. There was a time, not too long ago when the doctors told parents that compassionate care was the only option for their young ones. There was a time, when there was no hope for children with complex CHD.
A lot has changed over these really short years, and for the better. Challenging babies are living, they are surviving surgeries and they are growing up. There have been some amazing and wonderful milestones in the lives of children who are considered “complex kids” and while we get to live and do some amazing things – there are still some things that some of us CHD patients will never get to do.
It’s an inspiring idea, to go for your dreams and fight for them. But in the lives of many CHD patients, we don’t always get to achieve our dreams. The sad reality is, we can do everything right, take all the medication that is prescribed, have multiple surgeries and follow the doctor’s orders – but that will never make us healthy enough to do some of the things we wished we could.
Growing up, I was convinced that I would become a nurse and work in the CVICU. Nurses have had such an amazing and wonderful impact in my life and my families as well. Becoming a nurse was my first dream and the one I held steadfast to for years… but then reality hit. My mom sat me down my senior year and we had a heart to heart conversation about how unrealistic me being a nurse was. It was physical draining for any healthy person, let alone someone like myself. Not to mention, how would I be able to run to one end of the hospital if there was an emergency? Would I be physical able to pick up and move my patients? Would I be able to get up that early in the morning and work an eight to twelve hour shift with barely any break? I had to be honest with myself, and the answer was no, I wouldn’t be able to do that.
It crushed me, I cried for days on end. I even accused my mom of “destroying my dream.” The thing is, children are told from a young age to follow our dreams and fight for them – which is wonderful. But when it comes to kids with complex CHD; there are going to be dreams we will never be able to achieve. Our first dream, or even our second or third may not be realistically doable. And because we’ve overcome so many obstacles and have seen miracles happen in our lifetime – it’s a harsh and saddening reality when it sets in that there are going to be things that no matter what we do to make ourselves healthy, we will never get to do.
I came to the realization that I could do everything “right” and keep myself alive, but it would never make me healthy enough. And because of that, there are going to be things I want to do in my life that I sadly will never be able to do.
Hope and Love,