yellowfrog,
I have been away for a while and only saw your post tonite. After all of the broohaha I am hesitant to post - and tHEN< OF COURSE< I am not a parent. I am a window and an outlaw aunt.
I am impressed that you are asking for asvice. I am not surprised that it is hard for you to know what to do about this - if, how and when to have the talk about life expectency. When I think how difficult it is for so many parents to have the "SEx" talk I cannot even imagine how difficult it is to have the "progressive, terminal illness with shortened life expectency" talk.
My late husband was told by the docs when he was in the 7th grade that his life exepectency was at the outside 35 (different genetic condition not cf brought this on). I have no idcea when my nieces were told. They are like 21 now and I was sushed from saying CF in front of them only 2 years ago. I hope they and their parents talked about it before they were 18 - but with the sushing I'm not sure.
I have no idea what the perfet age is. Jane says "age appropriate" information - and, of course, that is always best, but then there is the issue as "person-appropriate" information and that differs by the kid and the kid's health. A 12-year old who the docs are suggesting transplant to is a lot different thatn a 12-year old who has never been on IV meds.
I do think that foks (even kids) pick on the fact that they are a lot sicker than others (if they are). And I know from lour family and being a school librarian that kids often find out on their own (just like about sex). While maybe finding out about the real facts of sex from your peers and the internet might be OK (you can check later to see if your parents will tell you the truth), to find out about CF that way just seesm awful lonely and scarey (and maybe real out of date information). I know the nieces knew the truth the day I was shushed and yet because my husbnad and I were shushed they never got a chance to talk to my husband about how he had lived successfully almost 25 years past his original projected lifesapn. I suspect that he was the one that understood the most about what they were going thru and would have been the most help, but....
So because of the family experience, I'd err on the side of having the4 talk erarly. Yes it might be mind bloweing, but at least you'll be there with them to help see them through and to get them additional counseling help if they need it.
To be all alone and find the information out from a stranger or the web. To wonder why your parents never discussed it with you. To think that perhaops that your parents could NOT talk to you about it - that you have to protect your parents or that it is such a terrible secret that it can not be shared with your parents. That just seems way too tough.
My thoughts are Too long and too late I know. But this has been such a big issuein our family that I can't believe it. There's an article a woman named Harriet McBryde Johnson once wrote about growing up with the shadow of an eraly death hanging over her. If I can find the link again, I'll post another post with it in. I know I've posted it here before so you might search on McBryde to find it. She is no fan of denial, but on the other hand she doesnot feel that focusing on terminal can sometimes stop folks from finding their reason for living - forom finding their own voice and then speaking their own truth and acting in their own power.
-LisaV
