Oh my... that would have really freaked me out too. I know the whole death thing has penetrated my 12yr old's awareness (we are not certain about his status; it's his sister with CF) and while he tells US he doesn't think about it, I know this is not really the case.
He flipped out at school in science recently. They were learning about genetics and watched a movie where CF was one of the things featured and some stupid kid made fun of a kid getting CPT w/ the rubber percussor & doing nebs. He started mimicking it, saying 'bang on me with suction cups and give me a toke'. Shawn stood up right there and yelled 'That is NOT FUNNY, those treatments mean life or death, if you don't do that stuff you will get infection after infection after infection until you DIE.'
Now, I have never put it in those kind of bald terms with Shawn, ever. But he obviously knows it. Talking more about this with him just... I just don't know the right things to say. Emily is 8 and a bit delayed developmentally; I have no idea what her perception of it is because she is limited in her expressive speech. I hate not knowing how she is feeling/what she is aware of when it comes to the reality of CF because then I can't help her beyond just trying to be reassuring in general and that is not always enough.
I am sure you are doing ALL you can for him and his sister- we know it affects all of our children- he's clearly a perceptive and sensitive kid to have drawn this comparison.
