Saturday, May 29, 2010
Ramblings of a CHD mind
I have been busting my bum for weeks to figure out ways to advocate not only for my daughter but for all CHD families I have met over the past 3 months especially. When I was pregnant with Sevanna, My Mom and I did alot of reasearch so I could be armed in making the best decisions for myself and Sevanna once she arrived and began her fight for survival. I wanted to always have knowledge because for me that equaled hope. I didnt take alot of graphic pictures of Sevanna when she was first born because I was just too consumed in being with her as much as possible. Not to say that there isnt any floating around, there just arent too many of her initial first days, weeks and couple months of life.
Your probably wondering what point im getting at.. Well I'll tell you.. When I wasnt caring for Sevanna, I had my head buried in books, magazines and websites trying to keep that knowledge up. Then I did something to me that I feel was very dumb. I let my guard down, I felt 'safe' and that means for a long while I stopped questing for knowledge becuz it was nicer to live in my "its all good" bubble. That doesnt mean I stopped being Sevanna's best care provider & advocate - it means I let myself get a tad too hopeful. I banked on Sevanna doing well because thats what her Dr's pushed upon me.
Since her fontan in March which took over a year to have happen, I met some people that reminded me of how blessed I am that Sevanna IS still here. Because of their particular circumstances, I decided to come back to the world of knowledge ALONG with a MAJOR desire to advocate for those who who no longer have a voice by telling Sevanna's personal story which I have held private for so long. I do it because she inspires people. Especially those that get what a miracle it is for each day we have with our CHD babies & children, and even any other parent I talk to understands on some level. In telling her story though I want it understood it is not done for exploitation, sympathy or to have her gain some type of celebrity status. I use Sevanna's story as a way to put a face to this disease, a way to show its very real and the warriors and angels really are nothing short of medical miracles!! I talk to friends, family, other parents & even strangers about the awareness and reasearch needed to help find answers as to the 'why' this disease affects SO many, yet SO little is done to back the necessary funding needed to provide the answers we as a CHD community so desperately seek.
So please wont you join my mission to help raise awareness and fund much needed research?? It would be nice if one day I could tell Sevanna that what she has endured wasnt for nothing. I want so much for CHD NOT to be the most common birthdefect and biggest pediatric killer currently known in the world, not that I want ANY disease taking the lives of inncoent children, but im sure you know what I was getting at...