Need Advice

[AbsintheSorrow]

To Katrina, of course you choose to tell your child whenever you like, but let me just tell you..... the "life threatening illness" thing you said. I can honestly say I knew CF would kill me since before I can remember. I don't know exactly what my parents said to me or when, but I know enough to say that I don't remember being told, because it was that long ago. My parents were always upfront with all of the information. So it's your choice, but I would suggest doing it before too much time passes (that is, before too many years pass).

And Candice, thanks for agreeing with me hehehe. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

"CF is going to kill me?" What kind of attitude is that?? There are no guarantees in life! No one knows what will kill them, but you live life to your fullest regardless. That's not the message I ever want to send my child. You can be honest without going overboard.

 

[AbsintheSorrow]

It's a very realistic attitude. I could also be hit by a bus, but I prefer CF thank you. And I didn't say WHEN, just said that I knew it would. You can be optimistic without having too much false hope, which I try to avoid. Will CF kill me? More than likely. Do I expect to see past "average" age? Yes, quite. Don't assume by one comment that you know whether or not I'm terribly pessimistic. I'm not. More realistic than anything.

 

[AbsintheSorrow]

And PS--- knowing CF will kill me doesn't mean I don't live life to the fullest. You ask my mother sometime, my friend Katie, my "little brother" Mini, my boyfriend (Mike). They'll all tell you. Mike has told me many times one thing he loves about me is that I get a kick out of small things that most people don't notice. He says living and loving me is even greater because of the CF because of the person it turned me into. He says he never takes anything for granted anymore, because of me. <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

firstly i want to say i admire any parent of a child with CF, because even if i dont agree with how they are acting the reason they are doing so is out of worry and love for the child i am sure! <img src="i/expressions/face-icon-small-smile.gif" border="0">

i dont think there is a right answer to a question like this. the only thing i would say is if you deliberately hide the fact that the average life expectancy is 31 therefore CF is still (unfortunately) generally fatal, then one day he will find out of his own accord and it will be a horrible horrible shock. i dont remember a time when i didnt know that CF reduces peoples life expectancy. my mum was always honest, and never lied that it does kill people, but reminded me that they are making medical advances all the time and that the life expectancy is ever increasing.

i think learning suddenly that your life could be drastically shortened is probably worse, but this is only my opinion. however and whenever your son learns about it, just be honest with a positive spin. it can cause early death yes. but there are people alive today aged 40+! therefore who is to say he wont go on and on?! <img src="i/expressions/face-icon-small-smile.gif" border="0">

best of luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[EmilysMom]

For those of you who are "annoyed" with Emily's outlook of "CF is going to kill me"....you have to remember that when she was born almost 21 years ago, we were told "She has a 50/50 chance of seeing her 18th birthday". The stats 20 years ago were not as good as they are now and we have always been honest with her as far as CF goes.
She is also right about stepping into the street and getting hit by a bus but I hope she doesn't do that...too messy! LOL
I always like to share this outlook a CF mom told me years ago.....
"You can always get hit by a train, but with CF, you are actually standing on the tracks...you just don't know when the train is coming."

 

[anonymous]

My goodness...I havent been on in a while and am shocked at this webpage...the poor mother wanted advice, not to be preached to. And whats with this taking sides...I agree with....or trying to defend your or others opinions...you gave her YOUR advice thats what she asked for...she didnt say write back a dozen times to defend yourself. whatever
anyway I just wanted to say if you do decide to tell him make sure he knows that MOST men are sterile not ALL men because there is a chance of him being fertil. Also if you tell him about life expectancy make sure he knows thats an average and not a definate....I was not told till my teen years and I believe it saved me from a lot of worry! I am NOT bitter at all for not being told at a young age and I completely respect my parents decision. I am not sure why everyone thinks your son is going to be so bitter. And I know your heart was in the right place for wanting to protect him. It shows that you deeply care for your son and his feeling. You may want to begin to tell him the more serious stuff now that he is a teen. Dont let the people that jumped at you, upset you. I would recommend Cysticfibrosis2chat if you would like advice without being jumped at...they are all very respectful and to all of you that will jump at me for this post, I dont think I will be back so save you breath.

 

[AbsintheSorrow]

*jumps* Haaahhh.

 

[IG]

Personally I think this board needs to take a good hard look at itself. Refer to My Thoughts on Board... Adult forum.

 

[cfmomoftwo]

That gives me a lot of hope. I just had a baby boy with cf four months ago (I already have a four year old girl with it) and I read that 95 or 98 percent of boys with cf are sterile. This debate is interesting because my daughter often talks about growing up and being a mommy and we are not sure she will be able to. We have often wondered how and when we need to tell her this.