Let me be frank for a moment. Samantha barely seems to have Cystic Fibrosis on most days. Since her adenoid/tonsil removal, which also involved a sinus surgery, she has had very few symptoms (cough, drainage, etc). Her weight is still frustrating, but she's energetic, healthy, and active. In short, most people wouldn't know that she had a disease that will kill her by the time she reaches the age of 37.
On those days, I have to remember, forcing myself somehow, that Samantha is one of the lucky ones. I just read of another CF patient who died today. It was sad, and yet inevitable. It's not that I'm losing hope, I'm just in denial. I guess I just ignore the facts about CF.
So it's time to get busy again. Upcoming on the schedule is putting together some volunteer opportunities for my Sailors to work with the local foundation office, running a marathon to support the foundation, and taking care of my daughter. It's game time. Gotta refocus.
1 year ago