It's been a while since I've blogged, and I wish I could say I had some kind of great story or funny anecdote to share with you. But I don't. All I can think of is how much I hate Cystic Fibrosis and how unfair it is for so many people to carry this burden. There are so many diseases and disorders and syndromes and cancers out there that affect so many people, but until something affects you or someone you love, it's impact is not as great.
I am blessed that although my children have CF, they have been relatively healthy, but because CF is a progressive disease, it's always in the back of my mind that things can change in a heartbeat. To borrow a line from another CF parent, as soon as my children took their first breaths, CF began taking away their tomorrows. Only half of people with CF will live to be 37. Half.
There is a CF mom right now whose 7-year-old CFer, Conner, has been put under hospice care. This boy has been through hell, and he just turned 7. I can not imagine either of my kids having to go through even half of what this boy has gone through or fight as hard as he has fought, and yet the end of his life is near, a life that never really even began. Like any child, he talks about what he'll do when he grows up, not realizing that he'll be lucky to even make it to his eighth birthday.
My heart aches for Conner and for his family. His mom, Sarah, blogs about Conner and their everyday struggles, at http://notsobrightandshiny.blogspot.com/. I do hope you visit her blog. She has the courage and strength to speak not only for her son but for all CFers, educating others on this seemingly invisible yet ugly and devastating disease.
I know I could blog forever about CF, about my kids and their struggles, about Conner and his fight, about how much CF sucks, but I've cried enough tears tonight and dwelled in the crappy knowledge that my kids have CF--and other peoples kids have CF--and we can't fix it. We can only pray that one day there will finally be a cure. That one day our kids will be fixed. That one day they will become what they want to be "when they grow up." That one day we can say they won't die from CF and it will be the truth.
For now, I will love my kids with every fiber of my being and never forget to tell them that. I will be the best mom I can be and give them the best life I can give them. In the words of Conner's mom Sarah: "I know [Conner] is only on loan to me from God...and I count each day as a blessing...had I know he was only going to be here with me for seven short years, I would've made them better. I would've been better. I would've done more for him. More smiles...more family memories...but now...it's all moving so swiftly in the other direction that all I have are the undones and what-ifs...and that's devastating." I pray that I will never have to say these words myself. I pray for Sarah and for the rest of Conner's family, that they can find strength and comfort in a time when it's difficult to find such things. Most of all, I pray for a cure for CF, so lives like Conner's won't be lost anymore.
Damn you, CF.
