A couple months ago I received an email from one of my friends that really made me think, it actually brought tears to my eye as I was responding. I want to share part of the email and my response.
My friend writes, "I know that one of the things that gets to me the most is knowing I am supposed to be the fix it guy, the protector of my family. And yet when it comes to this, knowing I wouldn't be able to fix any part of this, or feel like I was helpless to protect my children would be the thing that would break my spirit for good."
One of the hardest things that I have had to accept is that there is not a onetime fix for cystic fibrosis. There is nothing I can do that will allow Gabrielle to stop all, or any of, her treatments. However, this is where having a different perspective comes into play. The "fixes" for CF are drugs and therapy and more drugs and more therapy. And we cannot for get about food, nutrition is a key part also. The fix is something that we have to work at consistently every day. I never imagined that my child would refuse food, be a druggie, and have to be "beat" at least twice a day.
One great thing that I have found is that when dealing with a chronic disease you have a different perspective. Your attitude and the way you look at things have to be different from those that don't deal with them. As hard as it is to do you have to accept everything about the disease as normal. Normal for us has to be constant change, constant challenges, constant treatments, and most importantly constant prayer. We have had to learn that we cannot do everything on our own and we have to accept the loving support from our friends and family.
Gabrielle is who she is because of the CF and I would not change that for anything.
