Conner Jones

I have been delaying this post for a few days now because every time I think about Conner Jones and his family, I cry. The news of Conner's death really rocked my world. Even though CF is in my life every single day, Conner's story really, truly puts into perspective how fragile life is, and how lovingly and delicately it should be treated. Conner lost his valiant fight against CF and Prune Belly Disease at the young age of seven. You can read about his story here, on Sarah's (his mom) blog.

I never knew Conner. I have never met Sarah or Brad Jones in person, although if I did I would probably hug them and never let go. Because of Sarah's raw emotion and brutal honesty on her blog, I feel like I have known them forever. My heart aches for them, for their loss. My words can't even describe the emotions that I have had in the last few days since Conner's passing, so I cannot even fathom what Sarah and Brad have to go through. I realized that not only do I hate cystic fibrosis with every inch of my being, but I realized that I'm pretty scared of it...mostly it's unpredictability.

CF is different for every person fighting it. No two stories are ever the same. It treats everyone differently, and yet the outcome is always the same. I hate it. It scares the shit out of me. My goal from the beginning, when Lucy was diagnosed two and a half years ago, has always been to stay positive because that is what Lucy will emulate. Monkey see, monkey do. And to stay honest with myself and with Lucy. Always...even if that means talking about death.

Talking with Lucy now about death is an obvious "no" at two years old, but I must prepare myself mentally to be able to be completely honest with her when the time comes. Huge strides are being made constantly in the CF research world to help not only prolong the life of CFers, but make it a better, healthier life for them. I find this extremely encouraging in that Lucy may live to see 60, but I don't think we will see a cure for CF in Lucy's lifetime. I may catch some flack from some people about that statement because it certainly is not thinking positively, and we fight so hard for research and a cure. You can click here to find out how I feel about being realistic.

While I feel I must be honest with Lucy about ALL aspects of CF and all that it entails, because I will never lie to her about it, I really want her to focus on the life she has and how great it can be and will be. I want Lucy to get everything she can out of life. Take it and run with it. I want her to know that her life is fragile, and that every day should be lived to the fullest.

The Jones family portrays love at it's finest and fullest. A parent's love for a child runs deeper than any other emotion. The willingness to fight to the death, the power to love someone so deeply; it cannot be stopped. I will never forget as long as I live, Conner Jones and his family. Conner is an inspiration to me. His fight, his spirit and his strength is heroic. Sarah and Brad's fight for their son's life, their spirit and their strength at a time of such deep loss and grief is heartening.

Breathe easy now, Connerman. I know I will never forget you.