When I think of "Heart Month" I don't get too excited because honestly it's not just a month for me. Every month of the year for the rest of my life will be "Heart Month." This isn't denying that devoting the month of "Love" to bring CHD awareness is bad thing. It isn't. Its just that I used to go all out for heart month. I'd post every day, run ads in our local newspaper, sale raffle tickets for baskets that we'd put together and then this year I stopped. Not because I don't want to bring awareness because I do, but because I felt like the only thing I was doing was putting more stress and pressure on myself. Like the world of HLHS depended on me posting and talking about CHD everyday. I felt like I was letting Raygen down if I wasn't trying to get her story out there. I felt as a heart mom I wasn't doing my part if I didn't post every day, but in truth, the only person I was letting down was Raygen. I would get so into posting about Raygen that I would forget to enjoy her.
Heart Month is important, but really I don't see too many people talking about how our hearts really work. You always hear things like: "You have a big heart," "His heart is two sizes too small," "You make my heart happy," "Your my heart," etc. This is probably how most of us think about our hearts. It makes me laugh now because before Raygen that was my train of thought as well. Now when I think of the heart it has nothing to do with feeling. It has to do with function. Not the make believe thought that our heart is only there to feel "love" or be "broken," but a organ in our body necessary for life. If only our heart was just responsible for feelings. Our heart, my heart, your heart is responsible for pumping blood throughout the body via the circulatory system supplying oxygen and nutrients to the tissue and removing carbon dioxide. Not what you want to see on a Valentine Card is it? Now most of (unless your the 1 in 100) have a normal heart that does this with 4 chambers. Raygen on the other hand does not have 4 chambers she has two. Raygen is missing her entire left side of her heart. The left side of the heart is responsible for pumping oxygenated blood into the aorta, the large artery that carries blood to the body. Raygen's two chamber heart will now be responsible for a four chamber job. Sounds frightening doesn't it? Well it is. The right side of her heart will now be responsible for what is usually the job of the left side by pumping the oxygenated blood to they body. Her deoxygenated blood will flow from the veins to the lungs without passing through the heart. I know it's complicated and probably too much information but it's like asking two men to guard 500 prisoners. It's a big task your asking and failure isn't an option.
I know that the only way awareness for CHD or any medical condition that needs support is spread awareness everyday. Not just the doctor appointment or the statics, but the everyday life because that is the truth. The truth is being Raygen's mom is the most rewarding and scary experiences in my life. I can fix most anything that needs to be fixed. If I can't fix it I know who can, but when it comes to your daughter's heart that is completely up to God. My hope is spread awareness everyday. Celebrate Raygen and her heart everyday. Not because I feel the pressure or feel like the world will forget all about HLHS if I don't talk about it, but because I feel that Raygen is a inspiring little girl.
Erin & Raygen