That was a question asked on my Mrs. America paperwork. Unfortunately, my answer could only be fifteen seconds in length because it will be recorded and possibly played the night of competition - if I make the top ten. While I'm content with my answer I gave, there is so much more I wanted to say. It's not that I expect all the judges will be web-surfing the contestant's blogs before the pageant, but let's just say they are.....What would I want them to read here that would give them better insight into why I want this title so badly - into why it means so much?
I can't really describe to you what it's like to be told your child's life will probably be cut short. For me, it was a combination of numbness, disbelief, fear, desperation and many other feelings I can't put into words. When my daughter was diagnosed with cystic fibrosis at birth, I didn't know what to do other than to hold her, rock her, love her, and pray - pray that God would heal her of the horrific disease that I was learning more and more about each day.
When she was a couple of weeks old, however, something inside me shifted. I still wanted to pray and hold and rock - but there was a new desire inside me -a desire to fight. I made a decision that a life-expectancy of 36 was not ok with me. I made a decision that I was not going to let my daughter become a statistic. I made a decision that I was not going to be ruled by fear, but that, instead, I was going to get out and do whatever it took to change my daughter's fate.
I threw myself into volunteer work for the Cystic Fibrosis Foundation, flying to Washington, D.C. for conferences, chairing our gala year after year, attending walks, all the while telling everyone I could about CF and what they could do to help. This past year, however, I came to a point where I felt I had gotten about as far as I could as "Hayden's mommy". I needed something more - a title that could get me into the public eye. That is how I was led to enter the Mrs. Oklahoma pageant.
I need the job of Mrs. America. There are so many wonderful things I could do for my cause with the title. I have plans in my head for appearances on Ellen, The Today Show and Good Morning America. I have an entire hour planned for Oprah on orphan diseases with an emphasis on CF. I need to stand before Congress to fight for the Clinical Trials bill. Without it, many people have to choose between entering a trial or having health benefits. I need to encourage more people to become organ donors. Many people with CF are waiting for lung transplants and liver transplants. We have a boy in my local CF community waiting right now for the latter. Every two months when Hayden has a check up, I find myself holding my breath as the doctor feels her liver and checks her blood oxygen levels. Now matter how well she is doing now, I always have it in the back of my mind that it could be her someday - it could be her depending on an organ donation to live.
There are so many things I could do with this title. Not for me, and not even just for my daughter, but for the entire CF community. I want to have an active role in saving my daughter's life. I want her to grow up and know that her mother did everything in her power to make a difference on her behalf. That is why I want to be Mrs. America.