When we first got the diagnosis of cystic fibrosis I felt like my son was getting a life sentence. I still sometimes have these moments and they hurt. I would do anything to take away his pain, his struggles, his tears! As a parent it is the hardest thing to watch your child suffer. I know this is just the start of that suffering for him, but I will be there for him the whole time!!!
Jace is gaining weight and looks like a super healthy, happy 5 month old. You would never look at him and see cystic fibrosis. That is a good thing and a bad thing. I love my son more than anything and will continue to give him all the medication the doctors tell me to.
I don't want this to be a life sentence and so I will do everything in my power to give him a long life!! I do get depressed sometimes though when I read or hear stories of other children dying before age 25. It makes me so sad! I am scared for the future, but it is looking bright with recent medications to help make his life longer. I will continue to update this blog on our life as we face these trials.
I want people to understand cystic fibrosis because knowledge is power. I still learn new things everyday about this complex disorder.
Jace is my hero and I feel like he is going to be just fine, but the fear of loosing him is scary.