P. Sunshine

P. Sunshine
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Monday, August 29, 2005

reality bites

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.

4 comments:

Anonymous said...

I am happy that you contacted the CF couple. They are doing well and helping others. Hayden knows your love, he is a very happy baby. I hope there is no guilt inside you. He will always know that he is loved, that is the best feeling in the world. Love Dad

Terri Lynn said...

With my eyes full of tears after reading what you wrote, I will try to write my feelings.
"WHY HAYDEN?" I know I have said it more than once. I also know Hayden has a purpose in life. He has made a difference in my life. Hayden knows how much you and my brother love him. Aunt Terri loves him too. After we move and get settled in, give me a couple of weeks, I will be over to take care of the boy(s) so you and Todd can have some husband/wife time together, and I can spend time w/the boys. Just let me know what works for you. LOTS OF LOVE........TERRI LYNN

patti said...

Thanks, Terri, you have been such a HUGE help. Husband and wife time? what's that?!
Good luck with the "m-word"!!!

patti said...

Thanks, Terri, you have been such a HUGE help. Husband and wife time? what's that?!
Good luck with the "m-word"!!!