October 16, 2011

Emotions... argh...

Just a quick little note mostly for myself to get it out.

I've done it at least 10 times at this point. His G-tube button looked loose, so I checked to see if the balloon had enough water in it. It was low, so I had to pull the button out to check the balloon to see if it was leaking. When I pushed it back in, it didn't go back in so smoothly, and it was a bit painful for him. I did not show him that it hurts me just as much. It usually doesn't affect me, but it did this time. Maybe because it was me that caused the pain, in a way.

That boy can get on my last nerve, but it rips my heart to pieces when he suffers. I know life is not meant to be painless, but when the pain is caused by CF, even indirectly, I want fix it for him.

October 6, 2011

8 Years...

Eight years ago, my life changed forever. When I held that sweet, little baby boy in my arms, I felt instantly bonded with him.

After I found out he had CF,  there were times I felt completely devastated. As if I didn't know how to go on. Other times, I felt incredible strength, as though I could fight and kill CF with my bare hands, and make all the bad parts of his life go away. Without God and my parents, I could not have made it this far.

Through the hospitalizations, helping him through physical pain, and spending weeks alone with him, we both strengthened each other. The older he has gotten, I've realized that I've helped him fight CF for 8 years, but in return he has helped me fight it as well. We are partners in fighting CF, and this past year, we have been jogging partners as well. At times, it feels like we are running away from CF, putting more miles between him and the hospital.

These past  8 years have been both difficult and happy at the same time. Trying to maintain an appearance of  "normal" life to the outside world, and trying to maintain this routine of treatments, feedings, antibiotics, pills, pills, pills ... the "fighting like mad" to avoid the hospital. Still, I wouldn't have it any other way. It has been an absolute blessing to watch this baby become an independent, social, outgoing, caring little man.

Happy Birthday, my little man.