Before I leave....

I can't believe it is finally here. I leave in two days for Mrs. America. It is the opportunity of a lifetime and I am so honored to be representing Oklahoma in this amazing adventure. The following is a post I wrote back in June. I thought I'd post it again because I know a lot of people will probably visit my blog during the week at Mrs. America and this is what I would like all of them to know.....


Why do you want to be Mrs. America? 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.

Edited to add: Since writing this post, Congress passed the Clinical Trials bill! It will now go before the House of Representatives. Thank you so much to those of you who helped me write letters to our members of Congress!