i am worried about when to tell 8 yr old how serious cf really is. he is oblivious at the moment , i don't want to be put in the position of having to lie to him about mortality etc. how did adult cfers find out . were your parents' matter of fact about it all or were you left to find out accidentally. hope i haven't offended anyone <img src="i/expressions/face-icon-small-confused.gif" border="0">
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don,t want to be insensative but.....
- Thread starter anonymous
- Start date
i am worried about when to tell 8 yr old how serious cf really is. he is oblivious at the moment , i don't want to be put in the position of having to lie to him about mortality etc. how did adult cfers find out . were your parents' matter of fact about it all or were you left to find out accidentally. hope i haven't offended anyone <img src="i/expressions/face-icon-small-confused.gif" border="0">
You have to tell him upfront! I was left to find out accidently and I really haven't totally forgiven my parents to this day and I am 23! Because he is only eight and you are controlling most of his medicine I would just explain basically what CF is and what things he has to be careful about. As he gets older either he will look up more on his own or you can go into more detail when he asks. Be prepared to maybe go see somone either as a family or just him to help him deal more. I teach 8 year olds and if any of them have a disease that they know about, they only know the real basics. I think that in the long run it is better for their mental health because it is not so much a secret. Also, if you are going to tell him then I would also meet with his teacher so that if he mentions it in class she knows better how to respond.
Sue
Sue
You have to tell him upfront! I was left to find out accidently and I really haven't totally forgiven my parents to this day and I am 23! Because he is only eight and you are controlling most of his medicine I would just explain basically what CF is and what things he has to be careful about. As he gets older either he will look up more on his own or you can go into more detail when he asks. Be prepared to maybe go see somone either as a family or just him to help him deal more. I teach 8 year olds and if any of them have a disease that they know about, they only know the real basics. I think that in the long run it is better for their mental health because it is not so much a secret. Also, if you are going to tell him then I would also meet with his teacher so that if he mentions it in class she knows better how to respond.
Sue
Sue
I honestly am not sure if/when I was actually "told" what CF entails. I seem to always remember it being serious which is one reason I disregarded my treatments over the years to "live" & was allowed to do so by my parents. To this day tho I dont "dwell" on the inevetable. My daughter will be 8 in April & I always wonder with her at what point I need to address that part of MY CF with her (she has no CF0. I think she will eventually run into people that know of CF & they will ask cruel/stupid ?? that she isnt aware of. Such as.....how come your mother isnt dead yet? I have had adults ask me that so I dont put it past a child if they know CF is life shortening. I do think that you should be able to give as much info as possible without scaring the child. Each childs acceptance level varies so the amount of information to be given will vary. Its a hard call!
I honestly am not sure if/when I was actually "told" what CF entails. I seem to always remember it being serious which is one reason I disregarded my treatments over the years to "live" & was allowed to do so by my parents. To this day tho I dont "dwell" on the inevetable. My daughter will be 8 in April & I always wonder with her at what point I need to address that part of MY CF with her (she has no CF0. I think she will eventually run into people that know of CF & they will ask cruel/stupid ?? that she isnt aware of. Such as.....how come your mother isnt dead yet? I have had adults ask me that so I dont put it past a child if they know CF is life shortening. I do think that you should be able to give as much info as possible without scaring the child. Each childs acceptance level varies so the amount of information to be given will vary. Its a hard call!
Hahha....I think it's good to be oblivious....or rather have it in the back of his mind. Don't overexagerate....tell him how it is...be stern but not like overbearing. You don't want to scare the poor guy. Besides, it's not *that* bad...it's not like he was diagnosed with end stage cancer and only has a few months to live.
When i was young my mom got really drunk one night and told me that eventually my fingers would fall off from lack of oxygen. It freaked me out SOOOOOO bad. that was all i could think about for a long time....i got over it, but i still rmember that night.
Anyways...that are just my ideas. Make sure he know's it's important to do his stuff...and whatever happens, to never lose hope.
Kiel
When i was young my mom got really drunk one night and told me that eventually my fingers would fall off from lack of oxygen. It freaked me out SOOOOOO bad. that was all i could think about for a long time....i got over it, but i still rmember that night.
Anyways...that are just my ideas. Make sure he know's it's important to do his stuff...and whatever happens, to never lose hope.
Kiel
Hahha....I think it's good to be oblivious....or rather have it in the back of his mind. Don't overexagerate....tell him how it is...be stern but not like overbearing. You don't want to scare the poor guy. Besides, it's not *that* bad...it's not like he was diagnosed with end stage cancer and only has a few months to live.
When i was young my mom got really drunk one night and told me that eventually my fingers would fall off from lack of oxygen. It freaked me out SOOOOOO bad. that was all i could think about for a long time....i got over it, but i still rmember that night.
Anyways...that are just my ideas. Make sure he know's it's important to do his stuff...and whatever happens, to never lose hope.
Kiel
When i was young my mom got really drunk one night and told me that eventually my fingers would fall off from lack of oxygen. It freaked me out SOOOOOO bad. that was all i could think about for a long time....i got over it, but i still rmember that night.
Anyways...that are just my ideas. Make sure he know's it's important to do his stuff...and whatever happens, to never lose hope.
Kiel
Emily65Roses
New member
I've always known, and been grateful to my parents for being truthful with me.
Emily65Roses
New member
I've always known, and been grateful to my parents for being truthful with me.
Hi Janet. This is ,indeed, a very delicate matter. I was only diagnosed when i was 15 and ,at that age, i wasnt told by anyone how serious my condition was, i dont blame anyone because my parents, themselves, were still learning what it was and it comes as a big shock to find out something like that, i understand them completely. I ended up finding out the worst way, i looked up as much as i could at the time, on the internet especially; at that time, i couldnt really speak english and the portuguese websites weren't (and still aren't) updated at all. They were very poor in information, so what i can say is that, personally, finding out, in my teens, that i had a life threatning ilness was very dificult and it jeopardized so much my adolescence to a point where i got depressed , i just couldn't accept it. So as far as my experience goes, adolescence is the wrong period to find out about something like this so yes, i would advise you to talk to him while he's a child.
Hi Janet. This is ,indeed, a very delicate matter. I was only diagnosed when i was 15 and ,at that age, i wasnt told by anyone how serious my condition was, i dont blame anyone because my parents, themselves, were still learning what it was and it comes as a big shock to find out something like that, i understand them completely. I ended up finding out the worst way, i looked up as much as i could at the time, on the internet especially; at that time, i couldnt really speak english and the portuguese websites weren't (and still aren't) updated at all. They were very poor in information, so what i can say is that, personally, finding out, in my teens, that i had a life threatning ilness was very dificult and it jeopardized so much my adolescence to a point where i got depressed , i just couldn't accept it. So as far as my experience goes, adolescence is the wrong period to find out about something like this so yes, i would advise you to talk to him while he's a child.
thelizardqueen
New member
My parents were always very upfront about my CF. I remember telling a friend at the age of 6 that I was going to die early because of my CF. I don't remember how my parents told me, but they were very upfront, but at the same time very positive. I'm glad that they told me at a very early age what CF was all about.
thelizardqueen
New member
My parents were always very upfront about my CF. I remember telling a friend at the age of 6 that I was going to die early because of my CF. I don't remember how my parents told me, but they were very upfront, but at the same time very positive. I'm glad that they told me at a very early age what CF was all about.
To me, I feel there is no nice way of breaking it to him. I was totally informed about it when I was very young, and had to deal with all that uncertainty early on. I knew about the disease in it's entirety way before 8 years of age. Just like all of us, he will have to deal with the mental minefield that is CF. It will get worse when he is in his teens, and depending on the child he might need counseling. The approach I take with other young people with CF who are still trying to cope is to inform them that ALL of us die, but not all of us live, and our life isn't measured by how many years we are here on earth, and to live each day like it may be your last, and suck all the marrow out of life that you can. If someone lives to be 30 and has a full life with CF or any other life shortening disease, and then someone lives to be 100 with no disease and doesn't live life to it's fullest, who is better off? To me the 30 year old is much better off.
To me, I feel there is no nice way of breaking it to him. I was totally informed about it when I was very young, and had to deal with all that uncertainty early on. I knew about the disease in it's entirety way before 8 years of age. Just like all of us, he will have to deal with the mental minefield that is CF. It will get worse when he is in his teens, and depending on the child he might need counseling. The approach I take with other young people with CF who are still trying to cope is to inform them that ALL of us die, but not all of us live, and our life isn't measured by how many years we are here on earth, and to live each day like it may be your last, and suck all the marrow out of life that you can. If someone lives to be 30 and has a full life with CF or any other life shortening disease, and then someone lives to be 100 with no disease and doesn't live life to it's fullest, who is better off? To me the 30 year old is much better off.