What did you tell your children about CF?

CFHockeyMom

New member
We've never really sat down and had a talk with Sean about it. We've always just taken every little opportunity to give him information and made him responsible for his treatments/meds as much as possible.

There are a lot of wonderfu "success" stories on here from our adult CFer's. Maybe start by sharing some of those. It will help him know that he's not alone and may sparks some questions.

A lot of parents shy away from answering questions from their young CFer's only to find themselves in a position to have an all encompassing "CF talk" in the not so distant future. I've found it's a lot easier to incorporate honest open discussion in our daily lives. Death is part of life regardless of CF so don't shy away from those opportunities either. Sure, for little ones the details aren't significant but again incorporating these kinds of little lessons now can make things a lot easier later.
 

CFHockeyMom

New member
We've never really sat down and had a talk with Sean about it. We've always just taken every little opportunity to give him information and made him responsible for his treatments/meds as much as possible.

There are a lot of wonderfu "success" stories on here from our adult CFer's. Maybe start by sharing some of those. It will help him know that he's not alone and may sparks some questions.

A lot of parents shy away from answering questions from their young CFer's only to find themselves in a position to have an all encompassing "CF talk" in the not so distant future. I've found it's a lot easier to incorporate honest open discussion in our daily lives. Death is part of life regardless of CF so don't shy away from those opportunities either. Sure, for little ones the details aren't significant but again incorporating these kinds of little lessons now can make things a lot easier later.
 

CFHockeyMom

New member
We've never really sat down and had a talk with Sean about it. We've always just taken every little opportunity to give him information and made him responsible for his treatments/meds as much as possible.

There are a lot of wonderfu "success" stories on here from our adult CFer's. Maybe start by sharing some of those. It will help him know that he's not alone and may sparks some questions.

A lot of parents shy away from answering questions from their young CFer's only to find themselves in a position to have an all encompassing "CF talk" in the not so distant future. I've found it's a lot easier to incorporate honest open discussion in our daily lives. Death is part of life regardless of CF so don't shy away from those opportunities either. Sure, for little ones the details aren't significant but again incorporating these kinds of little lessons now can make things a lot easier later.
 

CFHockeyMom

New member
We've never really sat down and had a talk with Sean about it. We've always just taken every little opportunity to give him information and made him responsible for his treatments/meds as much as possible.

There are a lot of wonderfu "success" stories on here from our adult CFer's. Maybe start by sharing some of those. It will help him know that he's not alone and may sparks some questions.

A lot of parents shy away from answering questions from their young CFer's only to find themselves in a position to have an all encompassing "CF talk" in the not so distant future. I've found it's a lot easier to incorporate honest open discussion in our daily lives. Death is part of life regardless of CF so don't shy away from those opportunities either. Sure, for little ones the details aren't significant but again incorporating these kinds of little lessons now can make things a lot easier later.
 

littledebbie

New member
I understood a lot by a very early age but I only communicated snip it's of what I knew to my Mom for a while. i think I didn't want to be forced into the conversation. I wanted to make sure I would have control of talking about it, and what we would talk about, and that the conversation would stop at any point I wanted it to. Mini control freak <img src="i/expressions/face-icon-small-smile.gif" border="0">

I think that if he is resisting hearing you when you try to talk to him, he may not be ready yet. I would just keep trying every once in a while to see if he's ready. I would give yourself a definite cut off point, like 8 or 9 maybe. And maybe he will take the info in more of a progressive gathering of facts instead of a watershed moment? All in all I would just keep the topic open, venture into the dialougue once in a while and follow his lead for now.
 

littledebbie

New member
I understood a lot by a very early age but I only communicated snip it's of what I knew to my Mom for a while. i think I didn't want to be forced into the conversation. I wanted to make sure I would have control of talking about it, and what we would talk about, and that the conversation would stop at any point I wanted it to. Mini control freak <img src="i/expressions/face-icon-small-smile.gif" border="0">

I think that if he is resisting hearing you when you try to talk to him, he may not be ready yet. I would just keep trying every once in a while to see if he's ready. I would give yourself a definite cut off point, like 8 or 9 maybe. And maybe he will take the info in more of a progressive gathering of facts instead of a watershed moment? All in all I would just keep the topic open, venture into the dialougue once in a while and follow his lead for now.
 

littledebbie

New member
I understood a lot by a very early age but I only communicated snip it's of what I knew to my Mom for a while. i think I didn't want to be forced into the conversation. I wanted to make sure I would have control of talking about it, and what we would talk about, and that the conversation would stop at any point I wanted it to. Mini control freak <img src="i/expressions/face-icon-small-smile.gif" border="0">

I think that if he is resisting hearing you when you try to talk to him, he may not be ready yet. I would just keep trying every once in a while to see if he's ready. I would give yourself a definite cut off point, like 8 or 9 maybe. And maybe he will take the info in more of a progressive gathering of facts instead of a watershed moment? All in all I would just keep the topic open, venture into the dialougue once in a while and follow his lead for now.
 

littledebbie

New member
I understood a lot by a very early age but I only communicated snip it's of what I knew to my Mom for a while. i think I didn't want to be forced into the conversation. I wanted to make sure I would have control of talking about it, and what we would talk about, and that the conversation would stop at any point I wanted it to. Mini control freak <img src="i/expressions/face-icon-small-smile.gif" border="0">

I think that if he is resisting hearing you when you try to talk to him, he may not be ready yet. I would just keep trying every once in a while to see if he's ready. I would give yourself a definite cut off point, like 8 or 9 maybe. And maybe he will take the info in more of a progressive gathering of facts instead of a watershed moment? All in all I would just keep the topic open, venture into the dialougue once in a while and follow his lead for now.
 

littledebbie

New member
I understood a lot by a very early age but I only communicated snip it's of what I knew to my Mom for a while. i think I didn't want to be forced into the conversation. I wanted to make sure I would have control of talking about it, and what we would talk about, and that the conversation would stop at any point I wanted it to. Mini control freak <img src="i/expressions/face-icon-small-smile.gif" border="0">

I think that if he is resisting hearing you when you try to talk to him, he may not be ready yet. I would just keep trying every once in a while to see if he's ready. I would give yourself a definite cut off point, like 8 or 9 maybe. And maybe he will take the info in more of a progressive gathering of facts instead of a watershed moment? All in all I would just keep the topic open, venture into the dialougue once in a while and follow his lead for now.
 

littledebbie

New member
I understood a lot by a very early age but I only communicated snip it's of what I knew to my Mom for a while. i think I didn't want to be forced into the conversation. I wanted to make sure I would have control of talking about it, and what we would talk about, and that the conversation would stop at any point I wanted it to. Mini control freak <img src="i/expressions/face-icon-small-smile.gif" border="0">

I think that if he is resisting hearing you when you try to talk to him, he may not be ready yet. I would just keep trying every once in a while to see if he's ready. I would give yourself a definite cut off point, like 8 or 9 maybe. And maybe he will take the info in more of a progressive gathering of facts instead of a watershed moment? All in all I would just keep the topic open, venture into the dialougue once in a while and follow his lead for now.
 

pnhuffman

New member
Thanks for the information. I always try and tell him that he needs to do this so he can breathe easier , grow up to be big and strong and live a good long life. He says but I'm breathing now. He is silly.
Her is something funny he was telling me and my husband yesterday in the car while we were driving. He was wanting a cat and we told him no because I have severe allergies to cats and I dont think it would eb a good idea. Well. He was sitting there and all of a sudden he goes. "Hey when you and dad get really old and go to heaven I'm gonna get a cat and take care of it." I thought that was funny. My husband says to me at least I'm gonna be old. I said I'm glad that he thinks we are going to heaven. LOL
 

pnhuffman

New member
Thanks for the information. I always try and tell him that he needs to do this so he can breathe easier , grow up to be big and strong and live a good long life. He says but I'm breathing now. He is silly.
Her is something funny he was telling me and my husband yesterday in the car while we were driving. He was wanting a cat and we told him no because I have severe allergies to cats and I dont think it would eb a good idea. Well. He was sitting there and all of a sudden he goes. "Hey when you and dad get really old and go to heaven I'm gonna get a cat and take care of it." I thought that was funny. My husband says to me at least I'm gonna be old. I said I'm glad that he thinks we are going to heaven. LOL
 

pnhuffman

New member
Thanks for the information. I always try and tell him that he needs to do this so he can breathe easier , grow up to be big and strong and live a good long life. He says but I'm breathing now. He is silly.
Her is something funny he was telling me and my husband yesterday in the car while we were driving. He was wanting a cat and we told him no because I have severe allergies to cats and I dont think it would eb a good idea. Well. He was sitting there and all of a sudden he goes. "Hey when you and dad get really old and go to heaven I'm gonna get a cat and take care of it." I thought that was funny. My husband says to me at least I'm gonna be old. I said I'm glad that he thinks we are going to heaven. LOL
 

pnhuffman

New member
Thanks for the information. I always try and tell him that he needs to do this so he can breathe easier , grow up to be big and strong and live a good long life. He says but I'm breathing now. He is silly.
Her is something funny he was telling me and my husband yesterday in the car while we were driving. He was wanting a cat and we told him no because I have severe allergies to cats and I dont think it would eb a good idea. Well. He was sitting there and all of a sudden he goes. "Hey when you and dad get really old and go to heaven I'm gonna get a cat and take care of it." I thought that was funny. My husband says to me at least I'm gonna be old. I said I'm glad that he thinks we are going to heaven. LOL
 

pnhuffman

New member
Thanks for the information. I always try and tell him that he needs to do this so he can breathe easier , grow up to be big and strong and live a good long life. He says but I'm breathing now. He is silly.
Her is something funny he was telling me and my husband yesterday in the car while we were driving. He was wanting a cat and we told him no because I have severe allergies to cats and I dont think it would eb a good idea. Well. He was sitting there and all of a sudden he goes. "Hey when you and dad get really old and go to heaven I'm gonna get a cat and take care of it." I thought that was funny. My husband says to me at least I'm gonna be old. I said I'm glad that he thinks we are going to heaven. LOL
 

pnhuffman

New member
Thanks for the information. I always try and tell him that he needs to do this so he can breathe easier , grow up to be big and strong and live a good long life. He says but I'm breathing now. He is silly.
Her is something funny he was telling me and my husband yesterday in the car while we were driving. He was wanting a cat and we told him no because I have severe allergies to cats and I dont think it would eb a good idea. Well. He was sitting there and all of a sudden he goes. "Hey when you and dad get really old and go to heaven I'm gonna get a cat and take care of it." I thought that was funny. My husband says to me at least I'm gonna be old. I said I'm glad that he thinks we are going to heaven. LOL
 

jdprecious

New member
Jaelyn knows that she has 65roses... she still doesnt say Cystic Fibrosis correctly... so cute... anywho... she knows that she takes her meds everyday to keep her healthy.... everything we do is to keep her healthy... healthy is her favorite word...

Mom can I have a banana. No Jae go to bed. But Mom its healthy for me!!!

She does know that she can get sick and maybe one day die if we dont keep her healthy.. but she also knows that everyone dies one day... so that is why we do what we do everyday. Her grasp is great for a 5 year old. My mother hates it that I am as open with her as I am, but I wont lie to my child. I want her to know why we do what we do so she will always want to do it. Understanding from an early age will hopefully make it no big deal as she gets older. This is what I am hoping for.
 

jdprecious

New member
Jaelyn knows that she has 65roses... she still doesnt say Cystic Fibrosis correctly... so cute... anywho... she knows that she takes her meds everyday to keep her healthy.... everything we do is to keep her healthy... healthy is her favorite word...

Mom can I have a banana. No Jae go to bed. But Mom its healthy for me!!!

She does know that she can get sick and maybe one day die if we dont keep her healthy.. but she also knows that everyone dies one day... so that is why we do what we do everyday. Her grasp is great for a 5 year old. My mother hates it that I am as open with her as I am, but I wont lie to my child. I want her to know why we do what we do so she will always want to do it. Understanding from an early age will hopefully make it no big deal as she gets older. This is what I am hoping for.
 

jdprecious

New member
Jaelyn knows that she has 65roses... she still doesnt say Cystic Fibrosis correctly... so cute... anywho... she knows that she takes her meds everyday to keep her healthy.... everything we do is to keep her healthy... healthy is her favorite word...

Mom can I have a banana. No Jae go to bed. But Mom its healthy for me!!!

She does know that she can get sick and maybe one day die if we dont keep her healthy.. but she also knows that everyone dies one day... so that is why we do what we do everyday. Her grasp is great for a 5 year old. My mother hates it that I am as open with her as I am, but I wont lie to my child. I want her to know why we do what we do so she will always want to do it. Understanding from an early age will hopefully make it no big deal as she gets older. This is what I am hoping for.
 

jdprecious

New member
Jaelyn knows that she has 65roses... she still doesnt say Cystic Fibrosis correctly... so cute... anywho... she knows that she takes her meds everyday to keep her healthy.... everything we do is to keep her healthy... healthy is her favorite word...

Mom can I have a banana. No Jae go to bed. But Mom its healthy for me!!!

She does know that she can get sick and maybe one day die if we dont keep her healthy.. but she also knows that everyone dies one day... so that is why we do what we do everyday. Her grasp is great for a 5 year old. My mother hates it that I am as open with her as I am, but I wont lie to my child. I want her to know why we do what we do so she will always want to do it. Understanding from an early age will hopefully make it no big deal as she gets older. This is what I am hoping for.
 
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