i had a friend with CF die when i was young - probably at around 6 or so. she was older, and i had met her through a cff event that she had always worked. as she got sicker, the cff brought in another younger child to help with the fundraising. i was that child. cross infection rules weren't that strict in those days and so i knew her...not super well bu ti did know her. i also happened to live next door to a young girl exactly my age who also had cf, and then later her younger sister with cf. so the three of us younger cfers started working this national fundraiser event and right afterward the older girl (around 16 or so) died. after that, i distinctly remember asking my parents not just "why do i have to do treatments?' but the far scarier "will i die from this disease?" question.
my parents were open and honest but not harsh. like amy's mom they used the term cf in a very normal manner, encouraged me to do treatments in front of friends, and, like christian's mom, they never let me out of any chores, etc. b/c i was "sick." but when i asked the question point blank, i got the response of "well, right now many people die of cf, like your friend mary [name changed here] b/c there is no cure. we are working very hard to find a cure, though, and we're going to do our best to make sure you live a long and healthy life." and that was pretty much it. i got the same answer pretty much every time, and when i turned 12 i found a copy of "alex: the life of a child" in my parents' library and they told me i could read it at that point, b/c i was older, and then we had a frank discussion about alex's life and how lucky i was to live in a time when there were more meds, etc. but my parents encouraged me to be open and sad about it when friends with cf got sick or died. they didn't want me to hold that in or not talk about it. they also NEVER used scare tactics, never said "you will die if..." or "you will go to the hospital if...", just as they never made it seem like it was any of my friend's faults that some of them were sicker than i was.
in other words, my family talked about cf any time it came up. they were really open, even about the "scary stuff" (to a reasonable point -- you'll notice they had hidden "alex" and i didn't find it until 12). they tried to teach me the importance of staying healthy without teaching me that getting sick would somehow be "my fault." and they answered all my questions. but at the same time if anyone asked erin (my non-cf sister) where she wanted to go to college or what she wanted to be when she grew up, my parents made darn sure i was asked as well. because as far as they were concerned, we were planning for a future. thank god for that, too, b/c now i have a degree and a fantastic life that i absolutely love.
i second christian: totally admire you all for having such a hard job!
