What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

what do you think?

A

Allie

New member
The warning I would give to parents with no intention of telling thier kid the whole truth about CF, is someone else might. Ahava told a kid , 8 years old, the truth, assuming he already knew. Turns out, not at all. His mom and I got into it like two momma bears. Now the kid knows. From my daughter. If that's an acceptable risk, fine. But know you are taking it.
 
A

Allie

New member
The warning I would give to parents with no intention of telling thier kid the whole truth about CF, is someone else might. Ahava told a kid , 8 years old, the truth, assuming he already knew. Turns out, not at all. His mom and I got into it like two momma bears. Now the kid knows. From my daughter. If that's an acceptable risk, fine. But know you are taking it.
 
A

Allie

New member
The warning I would give to parents with no intention of telling thier kid the whole truth about CF, is someone else might. Ahava told a kid , 8 years old, the truth, assuming he already knew. Turns out, not at all. His mom and I got into it like two momma bears. Now the kid knows. From my daughter. If that's an acceptable risk, fine. But know you are taking it.
 
K

kayleesgrandma

New member
I remember Allie, that incident, and I know what you mean. Everyone should have an answer for when their child asks "the question". We are all going to die, some sooner than others. We started dying the minute we were born. But there we go on the being "sensitive to others" bit. . .
 
K

kayleesgrandma

New member
I remember Allie, that incident, and I know what you mean. Everyone should have an answer for when their child asks "the question". We are all going to die, some sooner than others. We started dying the minute we were born. But there we go on the being "sensitive to others" bit. . .
 
K

kayleesgrandma

New member
I remember Allie, that incident, and I know what you mean. Everyone should have an answer for when their child asks "the question". We are all going to die, some sooner than others. We started dying the minute we were born. But there we go on the being "sensitive to others" bit. . .
 
E

Emeraldmirror

New member
Not telling your kid they have a disease is one thing..telling them they are going to die is another.. do i think you should flat out tell your kid they're going to die, no but i don't think you should ever keep it from them that they have cf, name the disease, tell them about it, explain they have lots of mucus and need to do stuff to help it go away... don't get me wrong i keep lots of people basically at a need to know basis, i'm not going to offer any additional non essential information, of course by the time i could read i was always looking up cf and found out for myself. Being a bad parent would be flat out lying to your kid about them having a disease, on the flip side being a bad parent would also being constantly telling your kids that they're going to die as well... but those are just my opnions.

Ashley 22 w/cf
 
E

Emeraldmirror

New member
Not telling your kid they have a disease is one thing..telling them they are going to die is another.. do i think you should flat out tell your kid they're going to die, no but i don't think you should ever keep it from them that they have cf, name the disease, tell them about it, explain they have lots of mucus and need to do stuff to help it go away... don't get me wrong i keep lots of people basically at a need to know basis, i'm not going to offer any additional non essential information, of course by the time i could read i was always looking up cf and found out for myself. Being a bad parent would be flat out lying to your kid about them having a disease, on the flip side being a bad parent would also being constantly telling your kids that they're going to die as well... but those are just my opnions.

Ashley 22 w/cf
 
E

Emeraldmirror

New member
Not telling your kid they have a disease is one thing..telling them they are going to die is another.. do i think you should flat out tell your kid they're going to die, no but i don't think you should ever keep it from them that they have cf, name the disease, tell them about it, explain they have lots of mucus and need to do stuff to help it go away... don't get me wrong i keep lots of people basically at a need to know basis, i'm not going to offer any additional non essential information, of course by the time i could read i was always looking up cf and found out for myself. Being a bad parent would be flat out lying to your kid about them having a disease, on the flip side being a bad parent would also being constantly telling your kids that they're going to die as well... but those are just my opnions.

Ashley 22 w/cf
 
S

Scarlett81

New member
I do not think its neccesary to tell a 4 yr old-this is going to kill you. Children are resilient, but they don't have the brain ability to process something like that. So, yes I agree with Ashlee about that.

I think you can say in other gentler words, esp if a child is young, how serious this illness is. As it gets older, reveal more information. But its not always neccesary to give a kid the cold hard facts of life in a "deal with it" way.

I still think you should be open with your kid about it, however.
 
S

Scarlett81

New member
I do not think its neccesary to tell a 4 yr old-this is going to kill you. Children are resilient, but they don't have the brain ability to process something like that. So, yes I agree with Ashlee about that.

I think you can say in other gentler words, esp if a child is young, how serious this illness is. As it gets older, reveal more information. But its not always neccesary to give a kid the cold hard facts of life in a "deal with it" way.

I still think you should be open with your kid about it, however.
 
S

Scarlett81

New member
I do not think its neccesary to tell a 4 yr old-this is going to kill you. Children are resilient, but they don't have the brain ability to process something like that. So, yes I agree with Ashlee about that.

I think you can say in other gentler words, esp if a child is young, how serious this illness is. As it gets older, reveal more information. But its not always neccesary to give a kid the cold hard facts of life in a "deal with it" way.

I still think you should be open with your kid about it, however.
 
M

mneville

Guest
Maybe I'm naive or just an optimist. Aidan is now a very healthy two years old and by the time he is old enough to ask about life expectancy...I think it will be a normal age. I have no doubts that he will live a very long life. I tell him now that he has CF. He thinks it is great right now- he takes the Creon and actually loves the VEST for an hour daily. I won't tell him he will die early because we have no idea whether he will or not. Why dwell on something that may never happen? I really can already tell that Aidan is such a little fighter- he has amazing spirit and spunk. I think CF is something he will take in stride. And I will do my best as his mother to teach him to.

Megan
 
M

mneville

Guest
Maybe I'm naive or just an optimist. Aidan is now a very healthy two years old and by the time he is old enough to ask about life expectancy...I think it will be a normal age. I have no doubts that he will live a very long life. I tell him now that he has CF. He thinks it is great right now- he takes the Creon and actually loves the VEST for an hour daily. I won't tell him he will die early because we have no idea whether he will or not. Why dwell on something that may never happen? I really can already tell that Aidan is such a little fighter- he has amazing spirit and spunk. I think CF is something he will take in stride. And I will do my best as his mother to teach him to.

Megan
 
M

mneville

Guest
Maybe I'm naive or just an optimist. Aidan is now a very healthy two years old and by the time he is old enough to ask about life expectancy...I think it will be a normal age. I have no doubts that he will live a very long life. I tell him now that he has CF. He thinks it is great right now- he takes the Creon and actually loves the VEST for an hour daily. I won't tell him he will die early because we have no idea whether he will or not. Why dwell on something that may never happen? I really can already tell that Aidan is such a little fighter- he has amazing spirit and spunk. I think CF is something he will take in stride. And I will do my best as his mother to teach him to.

Megan
 
You must log in or register to reply here.
Top