I just finished reading the book "Alex: Life of a Child" by Frank DeFord. It's a work of non-fiction by an author whose daughter passed away at age 8, from CF.
Although the book thoroughly depressed me- Todd tried to read it, he reached about page 2 and gave up, he was to sad to go on - it also was a huge slap of reality for me. I guess, because Hayden "looks" so healthy right now, I had forgotten about the seriousness of his illness. The book reminded me that CF is a progressive disease, that Hayden will never get any better, he can only get worse. I'm so terrified for my little boy. Right now, his whole life depends on the treatments that Todd and I give him. His LIFE, and the length of it, is totally in our hands. It may happen that he will live to be 50-something, but there is also a chance that his health could suddenly take a turn early on in life.
Every parent has the fear that they will outlive their child, the fear of losing them to a car accident or some other freak incident. The hardest part is not knowing whether or not it will happen. When Hayden was diagnosed, I felt that he was given a sort of death sentence. I know he will not live to be an old man (unless they find a cure or a miracle drug!), I know that he may have to endure a lung transplant at some point in his life, I know that he may not be able to have kids, and I know that he is going to suffer from a lot of pain in his life, and as a parent, it kills me inside.
My biggest wish for him, besides a cure, is that I could take the pain away, just rip the CF right out of his body, throw it in the incinerator...gone for good. I know that, in reality, this can't happen- so for now, I will pray - something that is awkward for me, but hey, I'm willing to overcome that for the sake of my baby. I will pray for a cure to come soon. I will pray for him to outlive me, for our family to be a whole, loving unit. I will pray that he can beat the odds and this nasty disease that he harbors. And last but not least, I will pray that he knows and understands how much his family loves him, that we never wished this horrible thing upon him, and that maybe, possibly, through his illness, he can teach the world, or even just a few people, the value of life and love for one another ....the REAL important things about living.