When and how do I tell her?

[beaudz34]

My daughter is only 5 years old, she was diagnosed at 5 months. She knows she has CF, and she has no problems telling her friends or anyone who asks why she takes the enzymes, or why we do the CPT and why she has the puffers.
I know she's still a little young for this, but I often wonder how and when I should tell her the "reality" of CF, that it's a fatal illness. Obviously, she hasn't been told yet. I worry that she'll overhear it from someone talking, or that one day when she's a bit older she'll come across the information on the Internet or in books. As I said, I know she's young now, but when's the right time? Can anyone share their experience? What can I expect when she does find out? And HOW do I tell this to my beautiful little girl?

 

[beaudz34]

My daughter is only 5 years old, she was diagnosed at 5 months. She knows she has CF, and she has no problems telling her friends or anyone who asks why she takes the enzymes, or why we do the CPT and why she has the puffers.
I know she's still a little young for this, but I often wonder how and when I should tell her the "reality" of CF, that it's a fatal illness. Obviously, she hasn't been told yet. I worry that she'll overhear it from someone talking, or that one day when she's a bit older she'll come across the information on the Internet or in books. As I said, I know she's young now, but when's the right time? Can anyone share their experience? What can I expect when she does find out? And HOW do I tell this to my beautiful little girl?

 

[beaudz34]

My daughter is only 5 years old, she was diagnosed at 5 months. She knows she has CF, and she has no problems telling her friends or anyone who asks why she takes the enzymes, or why we do the CPT and why she has the puffers.
I know she's still a little young for this, but I often wonder how and when I should tell her the "reality" of CF, that it's a fatal illness. Obviously, she hasn't been told yet. I worry that she'll overhear it from someone talking, or that one day when she's a bit older she'll come across the information on the Internet or in books. As I said, I know she's young now, but when's the right time? Can anyone share their experience? What can I expect when she does find out? And HOW do I tell this to my beautiful little girl?

 

[beaudz34]

My daughter is only 5 years old, she was diagnosed at 5 months. She knows she has CF, and she has no problems telling her friends or anyone who asks why she takes the enzymes, or why we do the CPT and why she has the puffers.
I know she's still a little young for this, but I often wonder how and when I should tell her the "reality" of CF, that it's a fatal illness. Obviously, she hasn't been told yet. I worry that she'll overhear it from someone talking, or that one day when she's a bit older she'll come across the information on the Internet or in books. As I said, I know she's young now, but when's the right time? Can anyone share their experience? What can I expect when she does find out? And HOW do I tell this to my beautiful little girl?

 

[beaudz34]

My daughter is only 5 years old, she was diagnosed at 5 months. She knows she has CF, and she has no problems telling her friends or anyone who asks why she takes the enzymes, or why we do the CPT and why she has the puffers.
I know she's still a little young for this, but I often wonder how and when I should tell her the "reality" of CF, that it's a fatal illness. Obviously, she hasn't been told yet. I worry that she'll overhear it from someone talking, or that one day when she's a bit older she'll come across the information on the Internet or in books. As I said, I know she's young now, but when's the right time? Can anyone share their experience? What can I expect when she does find out? And HOW do I tell this to my beautiful little girl?

 

[Emily65Roses]

It's simpler than it seems. You tell her when she asks, and truthfully. Period. Parents tend to underestimate kids. When a kid asks a question, they're ready to hear the answer.

Clearly, you want to speak in whatever is age appropriate for her, but tell her the truth. Take my advice when I say to never lie to her about it. And furthermore, don't hide it from her for too long (I wouldn't hide it at all, 5 years old or not, but I'm the minority opinion on that around here). In my experience, generally speaking, the kids that remember "the day!" where they learned CF would likely kill them, are more torn up about it. The kids that don't even remember being told (like myself), because we've always known, are the ones that seem better adjusted. Again, my experience.

For me personally, I don't ever remember being told that CF would kill me. I've just always known. So I don't have any awful memories of my mom sitting me down and telling me the truth. She just answered my questions truthfully as the years went by, so I never had a big shocking CF reality moment.

 

[Emily65Roses]

It's simpler than it seems. You tell her when she asks, and truthfully. Period. Parents tend to underestimate kids. When a kid asks a question, they're ready to hear the answer.

Clearly, you want to speak in whatever is age appropriate for her, but tell her the truth. Take my advice when I say to never lie to her about it. And furthermore, don't hide it from her for too long (I wouldn't hide it at all, 5 years old or not, but I'm the minority opinion on that around here). In my experience, generally speaking, the kids that remember "the day!" where they learned CF would likely kill them, are more torn up about it. The kids that don't even remember being told (like myself), because we've always known, are the ones that seem better adjusted. Again, my experience.

For me personally, I don't ever remember being told that CF would kill me. I've just always known. So I don't have any awful memories of my mom sitting me down and telling me the truth. She just answered my questions truthfully as the years went by, so I never had a big shocking CF reality moment.

 

[Emily65Roses]

It's simpler than it seems. You tell her when she asks, and truthfully. Period. Parents tend to underestimate kids. When a kid asks a question, they're ready to hear the answer.

Clearly, you want to speak in whatever is age appropriate for her, but tell her the truth. Take my advice when I say to never lie to her about it. And furthermore, don't hide it from her for too long (I wouldn't hide it at all, 5 years old or not, but I'm the minority opinion on that around here). In my experience, generally speaking, the kids that remember "the day!" where they learned CF would likely kill them, are more torn up about it. The kids that don't even remember being told (like myself), because we've always known, are the ones that seem better adjusted. Again, my experience.

For me personally, I don't ever remember being told that CF would kill me. I've just always known. So I don't have any awful memories of my mom sitting me down and telling me the truth. She just answered my questions truthfully as the years went by, so I never had a big shocking CF reality moment.

 

[Emily65Roses]

It's simpler than it seems. You tell her when she asks, and truthfully. Period. Parents tend to underestimate kids. When a kid asks a question, they're ready to hear the answer.

Clearly, you want to speak in whatever is age appropriate for her, but tell her the truth. Take my advice when I say to never lie to her about it. And furthermore, don't hide it from her for too long (I wouldn't hide it at all, 5 years old or not, but I'm the minority opinion on that around here). In my experience, generally speaking, the kids that remember "the day!" where they learned CF would likely kill them, are more torn up about it. The kids that don't even remember being told (like myself), because we've always known, are the ones that seem better adjusted. Again, my experience.

For me personally, I don't ever remember being told that CF would kill me. I've just always known. So I don't have any awful memories of my mom sitting me down and telling me the truth. She just answered my questions truthfully as the years went by, so I never had a big shocking CF reality moment.

 

[Emily65Roses]

It's simpler than it seems. You tell her when she asks, and truthfully. Period. Parents tend to underestimate kids. When a kid asks a question, they're ready to hear the answer.

Clearly, you want to speak in whatever is age appropriate for her, but tell her the truth. Take my advice when I say to never lie to her about it. And furthermore, don't hide it from her for too long (I wouldn't hide it at all, 5 years old or not, but I'm the minority opinion on that around here). In my experience, generally speaking, the kids that remember "the day!" where they learned CF would likely kill them, are more torn up about it. The kids that don't even remember being told (like myself), because we've always known, are the ones that seem better adjusted. Again, my experience.

For me personally, I don't ever remember being told that CF would kill me. I've just always known. So I don't have any awful memories of my mom sitting me down and telling me the truth. She just answered my questions truthfully as the years went by, so I never had a big shocking CF reality moment.

 

[beaudz34]

Thank you for that response. I do have another question, now that I think of it. What about her 7 year old brother? He still doesn't know the effects of this on his sister either. Is now the time to tell him the truth? He'll be devastated, I'm sure, even though his little sister likely has years ahead of her. Thanks again.

 

[beaudz34]

Thank you for that response. I do have another question, now that I think of it. What about her 7 year old brother? He still doesn't know the effects of this on his sister either. Is now the time to tell him the truth? He'll be devastated, I'm sure, even though his little sister likely has years ahead of her. Thanks again.

 

[beaudz34]

Thank you for that response. I do have another question, now that I think of it. What about her 7 year old brother? He still doesn't know the effects of this on his sister either. Is now the time to tell him the truth? He'll be devastated, I'm sure, even though his little sister likely has years ahead of her. Thanks again.

 

[beaudz34]

Thank you for that response. I do have another question, now that I think of it. What about her 7 year old brother? He still doesn't know the effects of this on his sister either. Is now the time to tell him the truth? He'll be devastated, I'm sure, even though his little sister likely has years ahead of her. Thanks again.

 

[beaudz34]

Thank you for that response. I do have another question, now that I think of it. What about her 7 year old brother? He still doesn't know the effects of this on his sister either. Is now the time to tell him the truth? He'll be devastated, I'm sure, even though his little sister likely has years ahead of her. Thanks again.

 

[Emily65Roses]

I hate computers. HATE. I had a nice long response. And my internet browser crapped out. So now you're going to get the abbreviated version, I apologize.

Treat him the same as you treat her. Answer his questions truthfully and age-appropriately.

Kids take their cue from you. If you tell them while you're sobbing, it'll scare the hell out of them. If you present it as "yes, the average is 36 right now, but it's growing every year, and there are newer and better meds every year" etc, it'll lighten the blow.

You want to give them the truth, but still some hope. My one piece of advice on that would be to stick to realistic hope. I wouldn't go ranting about a cure or anything yet. My parents were told a cure was "right around the corner" when I was 5. That was 18 years ago. The cure still isn't here. They're still saying it's "right around the corner." I'm not holding my breath. Instead, concentrate on stuff that IS here. Newer and better meds, better clinics, better therapies, transplants are safer than they were years ago, etc etc. When I was born, there was no Pulmozyme, no Colistin, no hypertonic saline, no Vest, they didn't even know what gene caused CF until I was 5 (that's when the "cure" talk started). Look at all the strides they've made in 23 years. Expect at least that many more in the next 23 years. Chances are, by the time your daughter is an adult, she'll be in much better shape than CF adults currently are, because of all the meds and therapies she will have had available from day one.

I remembered a part I left out... you can also speak of CF examples around here as a form of hope. There are CF adults all over this place, CF people going to college, grad school, CF people getting married, living on their own, CF people having their own kids. That stuff is all over the place. Show her these examples, and it'll make it seem even more plausible for her.

 

[Emily65Roses]

I hate computers. HATE. I had a nice long response. And my internet browser crapped out. So now you're going to get the abbreviated version, I apologize.

Treat him the same as you treat her. Answer his questions truthfully and age-appropriately.

Kids take their cue from you. If you tell them while you're sobbing, it'll scare the hell out of them. If you present it as "yes, the average is 36 right now, but it's growing every year, and there are newer and better meds every year" etc, it'll lighten the blow.

You want to give them the truth, but still some hope. My one piece of advice on that would be to stick to realistic hope. I wouldn't go ranting about a cure or anything yet. My parents were told a cure was "right around the corner" when I was 5. That was 18 years ago. The cure still isn't here. They're still saying it's "right around the corner." I'm not holding my breath. Instead, concentrate on stuff that IS here. Newer and better meds, better clinics, better therapies, transplants are safer than they were years ago, etc etc. When I was born, there was no Pulmozyme, no Colistin, no hypertonic saline, no Vest, they didn't even know what gene caused CF until I was 5 (that's when the "cure" talk started). Look at all the strides they've made in 23 years. Expect at least that many more in the next 23 years. Chances are, by the time your daughter is an adult, she'll be in much better shape than CF adults currently are, because of all the meds and therapies she will have had available from day one.

I remembered a part I left out... you can also speak of CF examples around here as a form of hope. There are CF adults all over this place, CF people going to college, grad school, CF people getting married, living on their own, CF people having their own kids. That stuff is all over the place. Show her these examples, and it'll make it seem even more plausible for her.

 

[Emily65Roses]

I hate computers. HATE. I had a nice long response. And my internet browser crapped out. So now you're going to get the abbreviated version, I apologize.

Treat him the same as you treat her. Answer his questions truthfully and age-appropriately.

Kids take their cue from you. If you tell them while you're sobbing, it'll scare the hell out of them. If you present it as "yes, the average is 36 right now, but it's growing every year, and there are newer and better meds every year" etc, it'll lighten the blow.

You want to give them the truth, but still some hope. My one piece of advice on that would be to stick to realistic hope. I wouldn't go ranting about a cure or anything yet. My parents were told a cure was "right around the corner" when I was 5. That was 18 years ago. The cure still isn't here. They're still saying it's "right around the corner." I'm not holding my breath. Instead, concentrate on stuff that IS here. Newer and better meds, better clinics, better therapies, transplants are safer than they were years ago, etc etc. When I was born, there was no Pulmozyme, no Colistin, no hypertonic saline, no Vest, they didn't even know what gene caused CF until I was 5 (that's when the "cure" talk started). Look at all the strides they've made in 23 years. Expect at least that many more in the next 23 years. Chances are, by the time your daughter is an adult, she'll be in much better shape than CF adults currently are, because of all the meds and therapies she will have had available from day one.

I remembered a part I left out... you can also speak of CF examples around here as a form of hope. There are CF adults all over this place, CF people going to college, grad school, CF people getting married, living on their own, CF people having their own kids. That stuff is all over the place. Show her these examples, and it'll make it seem even more plausible for her.

 

[Emily65Roses]

I hate computers. HATE. I had a nice long response. And my internet browser crapped out. So now you're going to get the abbreviated version, I apologize.

Treat him the same as you treat her. Answer his questions truthfully and age-appropriately.

Kids take their cue from you. If you tell them while you're sobbing, it'll scare the hell out of them. If you present it as "yes, the average is 36 right now, but it's growing every year, and there are newer and better meds every year" etc, it'll lighten the blow.

You want to give them the truth, but still some hope. My one piece of advice on that would be to stick to realistic hope. I wouldn't go ranting about a cure or anything yet. My parents were told a cure was "right around the corner" when I was 5. That was 18 years ago. The cure still isn't here. They're still saying it's "right around the corner." I'm not holding my breath. Instead, concentrate on stuff that IS here. Newer and better meds, better clinics, better therapies, transplants are safer than they were years ago, etc etc. When I was born, there was no Pulmozyme, no Colistin, no hypertonic saline, no Vest, they didn't even know what gene caused CF until I was 5 (that's when the "cure" talk started). Look at all the strides they've made in 23 years. Expect at least that many more in the next 23 years. Chances are, by the time your daughter is an adult, she'll be in much better shape than CF adults currently are, because of all the meds and therapies she will have had available from day one.

I remembered a part I left out... you can also speak of CF examples around here as a form of hope. There are CF adults all over this place, CF people going to college, grad school, CF people getting married, living on their own, CF people having their own kids. That stuff is all over the place. Show her these examples, and it'll make it seem even more plausible for her.

 

[Emily65Roses]

I hate computers. HATE. I had a nice long response. And my internet browser crapped out. So now you're going to get the abbreviated version, I apologize.

Treat him the same as you treat her. Answer his questions truthfully and age-appropriately.

Kids take their cue from you. If you tell them while you're sobbing, it'll scare the hell out of them. If you present it as "yes, the average is 36 right now, but it's growing every year, and there are newer and better meds every year" etc, it'll lighten the blow.

You want to give them the truth, but still some hope. My one piece of advice on that would be to stick to realistic hope. I wouldn't go ranting about a cure or anything yet. My parents were told a cure was "right around the corner" when I was 5. That was 18 years ago. The cure still isn't here. They're still saying it's "right around the corner." I'm not holding my breath. Instead, concentrate on stuff that IS here. Newer and better meds, better clinics, better therapies, transplants are safer than they were years ago, etc etc. When I was born, there was no Pulmozyme, no Colistin, no hypertonic saline, no Vest, they didn't even know what gene caused CF until I was 5 (that's when the "cure" talk started). Look at all the strides they've made in 23 years. Expect at least that many more in the next 23 years. Chances are, by the time your daughter is an adult, she'll be in much better shape than CF adults currently are, because of all the meds and therapies she will have had available from day one.

I remembered a part I left out... you can also speak of CF examples around here as a form of hope. There are CF adults all over this place, CF people going to college, grad school, CF people getting married, living on their own, CF people having their own kids. That stuff is all over the place. Show her these examples, and it'll make it seem even more plausible for her.