Kris,
I know exactly what you are going through!!! I have two sons, Asher age 5 without CF and Isaac age 3 with Cf. Let me tell you my story. I teach kindergarten and I had a child in my class with CF. My best friend's son, Dane, was diagnosed with CF at 6 months old. I really felt that God was trying to prepare me with dealing with a child with special needs. I found out that I was pregnant during the same year as Dane was diagnosed and I had Nathan in my class. I was scared to death to get my ultrasound. When Isaac was born, I knew! Call it mother's intuition. He cried all of the time. He had several dirty diapers everyday. He was salty. I would give him 3 baths a day to try to take the saltiness away! I did not want to digest that my child had CF. I finally broke down to Isaac's doctor when he was 10 weeks old asking for him to send us for a sweat test. He assured me that Isaac was fine and Cf was just so much of a part of my life that I was imagining things. Well, the test came back and Isaac had CF. I have never felt so low in all my life. My heart hurt so bad. I began to pray and I knew that when awful things happen, and we give it to God, He will bring something good out of it. I joined the local CFF chapter. I volunteered at events and was able to talk to other moms. This helped more than anything! In my CFF group there are two sisters who both have CF. One is 24 and one is 35 and just had her first child. The fist time I saw them, I know they thought I was crazy. I could not keep my eyes off of them because seeing them as adults gave me hope for Isaac. Also, during one of my events, I met Ken Coleman, a Tennessee State representive, who is in his early fifties and has CF. What I've learned is that CF does not define Isaac. He is just as active and happy as my son Asher. I still have the same dreams for Isaac as I do for Asher. This is not a life sentence. It took a full year for me to not think of CF everytime I looked at Isaac. Now, all of his treatments are as normal to me as me brushing my teeth every morning. I still have hard times, though. Isaac was hospitalized for the first time earlier this month. Having my friend who has a son with CF is such a blessing. Cling together as a family. It's ok to cry! Your heart will feel better. There are so many things to be thankful for. There are several drugs in the pipeline that will help our babies. Find a cystic fibrosis foundation chapter to be involved in. When I raise money for CF, I really feel that I am making a difference. I will be praying for your family.
Casey