Wednesday, March 2, 2011
Back To The Beginning: CF Sucks Part 1
Brock usually came home from work for lunch, but he walked in the door early that day...followed by my brother and sister-in-law. I knew what he had to say to me the moment I saw him. Brady was wearing a tiny yellow onesie with a duck on it. That moment will be suspended in my mind for the rest of my life. I think telling me that news was probably the hardest thing Brock has ever had to do. All I really remember is hearing myself screaming. I still wasn't sure what cystic fibrosis meant for us...but I knew that it had suddenly changed everything and that things were going to get hard. I knew that CF was the #1 genetic killer of children. I immediately began thinking about having to watch Brady suffer and potentially die. That was the day that the words "cystic fibrosis" began assaulting my brain like a machine gun.
The next several months were very hard. Managing Brady's medications and feedings became my full time job and there was a lot to learn. Unfortunately, many of the things you discover about CF scare the shit out of you. One of the first horrible things we learned was how to do percussion therapy on our baby (a.k.a. pounding/beating on the Brady's chest and back to loosen the mucous in his lungs). I'm trained in massage therapy, so I was familiar with the techniques already. This would be a required therapy, indefinitely...or until he was big enough for a Vest. I cannot describe how horrible it is to have to beat on your child...twice a day...for years. Brady was actually fine with it. He often fell asleep during the 15-20 minute sessions. Brock and I hated it with a passion. You have to pound hard. I cried after every time for months. We both developed a form of "carpal tunnel therapy arm syndrome" from the repetitive action of the therapy. We did everything we could to make therapy good and fun and special, but it was still so hard. I guess I feel that to understand why curing CF is so important...you must first understand why having CF is so crappy. It has been such a humbling experience for me to see Brady breeze through the things that cause my heart to just collapse. He is very special and very strong. I am very lucky.