I'm going to write this because I know people want to know and I don't really want to talk about it. I'm ok writing about it and I won't mind one bit if you comment, I just don't physically want to speak about it.
A little boy died today. His name was Connor. He was only 7. And he fought CF everyday of his short precious life. You can read about him at www.notsobrightandshiny.blogspot.com. It will break your heart. I never knew Connor. I don't know his parents. But I can't get them off my mind today.
On Tuesday when I met with Valerie Abati for our News 5 Interview, she asked me how I felt about the median age for survival with CF being 37. I danced around it a bit by saying things like "well that is just the average, many people live much longer" and "20 years ago most kids didn't live through adolesence so I can only hope that in 20 years the meadian age will be close to 80". What I wanted to say to her and to everyone is that I'm terrified. I do cry about it. I rock him extra long at night, Martin has to make me put him down. I want him forever and I don't want to think or talk about an end. I don't want to be niave but I also don't want to be debbie downer; I don't want to ruin our lives worrying, I just want to enjoy every moment that we all have together, treat Drew like everyone else. But deep down I am scared and I just want everyone to know that.
Recently I've been so up and down on how I feel about CF. Somedays I'm so hopeful, reading about all the new treatments and research going on. Other days I catch an article on how CF is way more complex that we ever could have imagined and its going to take forever before a true cure is really found. I know people and know of people who are in their 30's, 40's and 50's who are living with CF. They have had lung transplants, take dozens of medications every day, and spend weeks at a time in the hospital every year, but they are alive. I know people and know of people who never got to see their 2nd birthday, never made it into adolesence and never got the chance to experience the life that you and I take for granted.
I wonder why Drew got this disease. I'm not mad about it. Maybe God knew what wonderful family and friends we have and just needed that one more family to raise awareness and support to find the cure. Many people have told us that God doesn't give us anything we can't handle. I think we can deal with him; I just don't know if i'd be able to deal without him.