Clearly, all these posts suggest this feeling is so very 'normal' to life with CF! I think the hardest thing about being a CF caretaker is that it is lonely. Outside of forums like this, there are not many around us that really understand what we do each day, and what we carry around with us, in terms of the emotional weight and the toll that takes on us and on our families.
A few months ago, I had to leave my two daughters with my parents for a week. I had no choice. I had a major work commitment, and short of a hospitalization, I had to go. My youngest was on Tobi at the time, and both were up at four treatments a day. I felt horrible about leaving them at a time like that, and even more horrible for the fact that I was so glad to get away from that routine for a week. Although my parents had watched them before, I only left them when they were healthy. Leaving was so hard, and my feelings about leaving were so confusing and conflicted.
At the end of the week, my parents sat me down and told me how much they admire everything that I do for the girls, and they said that they never really understood how hard it was until they took on 'sick care' for a week. It was a long talk, and one that meant a great deal to me, because it felt like the first time someone other than my spouse really SAW what it meant to me to live -- not just with the disease, but with the daily care. Living with CF takes a toll on all of us, and it is one that is hard to understand until you have lived it.
