How do I tell her

[redneckmom]

<img src="i/expressions/face-icon-small-blush.gif" border="0">
My daughter has just turned 9 and we haven't told her that CF is terminal. We are going to tell after her party and when she is out of school. I know that I should have told her by now but, I can't seem to find the words, moment, and the guts to tell her. She is a striaght A student and very smart(no common sense) but I have shielded her from too much now its kickin my own ass for not telling her sooner. I am waiting until school is through so if she has problems we can deal with them over the summer. I need to know how--how can I tell the love of my life that this disease can kill her if she is not and does not take care of herself. She is very healthy compared to some she just knows she gets sick easier and she has to take alot of medicine to stay well. Please help without too much harping on me about what I should have done. I've done it enough to myself without any help from anyone else

 

[redneckmom]

<img src="i/expressions/face-icon-small-blush.gif" border="0">
My daughter has just turned 9 and we haven't told her that CF is terminal. We are going to tell after her party and when she is out of school. I know that I should have told her by now but, I can't seem to find the words, moment, and the guts to tell her. She is a striaght A student and very smart(no common sense) but I have shielded her from too much now its kickin my own ass for not telling her sooner. I am waiting until school is through so if she has problems we can deal with them over the summer. I need to know how--how can I tell the love of my life that this disease can kill her if she is not and does not take care of herself. She is very healthy compared to some she just knows she gets sick easier and she has to take alot of medicine to stay well. Please help without too much harping on me about what I should have done. I've done it enough to myself without any help from anyone else

 

[redneckmom]

<img src="i/expressions/face-icon-small-blush.gif" border="0">
My daughter has just turned 9 and we haven't told her that CF is terminal. We are going to tell after her party and when she is out of school. I know that I should have told her by now but, I can't seem to find the words, moment, and the guts to tell her. She is a striaght A student and very smart(no common sense) but I have shielded her from too much now its kickin my own ass for not telling her sooner. I am waiting until school is through so if she has problems we can deal with them over the summer. I need to know how--how can I tell the love of my life that this disease can kill her if she is not and does not take care of herself. She is very healthy compared to some she just knows she gets sick easier and she has to take alot of medicine to stay well. Please help without too much harping on me about what I should have done. I've done it enough to myself without any help from anyone else

 

[lightNlife]

My parents filled me in on the details about CF gradually, rather than dropping a big "by the way, it's terminal" bomb on my head.

It's interesting that you ask this today, because this is something I was thinking about last night...I was remembering how my folks filled me in on the details in stages. Here are some thoughts I can share that may help you. I've broken them down by age group.
<i>
Kindergarten - Third grade:</i>

They explained that my body didn't work the same way as other people's. We didn't use the word "fatal" or "disease." Mom said that if anyone ever asked why I had to take enzymes or stuff, I should just say "they help my body work better." We talked about tummy aches and why it was important for me to take my pills so that I wouldn't have so many tummy aches.

<i>Fourth grade - Sixth Grade:</i>

This was the age when I started reading more. Discussions about CF were, in some ways, similar to being given "the sex talk." I didn't know enough to ask a lot of questions, and Mom wasn't going to go into detail that I couldn't handle about CF. Mostly I was told that if I wanted to be able to participate in all the things I loved (school, sleepovers at friends, etc.) then I had to be sure to obey the rules about taking my medications.

It was during this time that I also learned to play the french horn. Mom and Dad encouraged me to play a large wind instrument. They said that someday cystic fibrosis would make it very hard for me to breath well, but the more exercise I gave my lungs, the easier things would be. (And they are!)

<i>Junior High: </i>

This age was awful. I think that's when I was beginning to know that CF was a VERY serious thing. I had read "A Time to Die" and "Toothpick" which were books about teen girls with CF. I had a lot of questions for my mom and dad about CF after reading those. They always answered me honestly. But they also made sure that I understood that I had a responsibility to live in the here and now and not worry about all the "What ifs." They said "there will be time for that, and when that day comes, we'll handle it together."

<i>High School:</i>

Mom and Dad told me once again that I was responsible for making good decisions. They told me that yes, CF is scary, unfair, and all those other things that make it so awful, but that no matter how bad it got, we were a family and we'd get through it.

--

I don't believe in sugar-coating things, but the stark realities don't need to be dropped on a little kid either. Talk about the meds and the treatments and do your best to describe how they work and why they're important.
Bring it up in family time conversation, rather than a "sit down, we have to talk" discussion. Remind her that you love her and wish that she didn't have to do all these things, but since she does, you'll handle it together.

As far as how to say "it's fatal," I wish I had the right words for you on that. Tell her that CF is a VERY serious disease and <i>people</i> (I stress the word people so that you keep her future focused) can and do die from it. Remind her that there is a lot to live for an a lot of things to experience and enjoy before that happens, and that's what you intend to help her do.

<b>This is something you probably want to emphasize: That she can't participate in fun things if she doesn't follow the rules. That's a good life lesson, CF or not. By phrasing it this way, it makes more sense to a child her age (whose reasoning skills are limited) than to say "take your meds or you're going to die."</b>

I hope that helps. Sorry to ramble so long.

 

[lightNlife]

My parents filled me in on the details about CF gradually, rather than dropping a big "by the way, it's terminal" bomb on my head.

It's interesting that you ask this today, because this is something I was thinking about last night...I was remembering how my folks filled me in on the details in stages. Here are some thoughts I can share that may help you. I've broken them down by age group.
<i>
Kindergarten - Third grade:</i>

They explained that my body didn't work the same way as other people's. We didn't use the word "fatal" or "disease." Mom said that if anyone ever asked why I had to take enzymes or stuff, I should just say "they help my body work better." We talked about tummy aches and why it was important for me to take my pills so that I wouldn't have so many tummy aches.

<i>Fourth grade - Sixth Grade:</i>

This was the age when I started reading more. Discussions about CF were, in some ways, similar to being given "the sex talk." I didn't know enough to ask a lot of questions, and Mom wasn't going to go into detail that I couldn't handle about CF. Mostly I was told that if I wanted to be able to participate in all the things I loved (school, sleepovers at friends, etc.) then I had to be sure to obey the rules about taking my medications.

It was during this time that I also learned to play the french horn. Mom and Dad encouraged me to play a large wind instrument. They said that someday cystic fibrosis would make it very hard for me to breath well, but the more exercise I gave my lungs, the easier things would be. (And they are!)

<i>Junior High: </i>

This age was awful. I think that's when I was beginning to know that CF was a VERY serious thing. I had read "A Time to Die" and "Toothpick" which were books about teen girls with CF. I had a lot of questions for my mom and dad about CF after reading those. They always answered me honestly. But they also made sure that I understood that I had a responsibility to live in the here and now and not worry about all the "What ifs." They said "there will be time for that, and when that day comes, we'll handle it together."

<i>High School:</i>

Mom and Dad told me once again that I was responsible for making good decisions. They told me that yes, CF is scary, unfair, and all those other things that make it so awful, but that no matter how bad it got, we were a family and we'd get through it.

--

I don't believe in sugar-coating things, but the stark realities don't need to be dropped on a little kid either. Talk about the meds and the treatments and do your best to describe how they work and why they're important.
Bring it up in family time conversation, rather than a "sit down, we have to talk" discussion. Remind her that you love her and wish that she didn't have to do all these things, but since she does, you'll handle it together.

As far as how to say "it's fatal," I wish I had the right words for you on that. Tell her that CF is a VERY serious disease and <i>people</i> (I stress the word people so that you keep her future focused) can and do die from it. Remind her that there is a lot to live for an a lot of things to experience and enjoy before that happens, and that's what you intend to help her do.

<b>This is something you probably want to emphasize: That she can't participate in fun things if she doesn't follow the rules. That's a good life lesson, CF or not. By phrasing it this way, it makes more sense to a child her age (whose reasoning skills are limited) than to say "take your meds or you're going to die."</b>

I hope that helps. Sorry to ramble so long.

 

[lightNlife]

My parents filled me in on the details about CF gradually, rather than dropping a big "by the way, it's terminal" bomb on my head.

It's interesting that you ask this today, because this is something I was thinking about last night...I was remembering how my folks filled me in on the details in stages. Here are some thoughts I can share that may help you. I've broken them down by age group.
<i>
Kindergarten - Third grade:</i>

They explained that my body didn't work the same way as other people's. We didn't use the word "fatal" or "disease." Mom said that if anyone ever asked why I had to take enzymes or stuff, I should just say "they help my body work better." We talked about tummy aches and why it was important for me to take my pills so that I wouldn't have so many tummy aches.

<i>Fourth grade - Sixth Grade:</i>

This was the age when I started reading more. Discussions about CF were, in some ways, similar to being given "the sex talk." I didn't know enough to ask a lot of questions, and Mom wasn't going to go into detail that I couldn't handle about CF. Mostly I was told that if I wanted to be able to participate in all the things I loved (school, sleepovers at friends, etc.) then I had to be sure to obey the rules about taking my medications.

It was during this time that I also learned to play the french horn. Mom and Dad encouraged me to play a large wind instrument. They said that someday cystic fibrosis would make it very hard for me to breath well, but the more exercise I gave my lungs, the easier things would be. (And they are!)

<i>Junior High: </i>

This age was awful. I think that's when I was beginning to know that CF was a VERY serious thing. I had read "A Time to Die" and "Toothpick" which were books about teen girls with CF. I had a lot of questions for my mom and dad about CF after reading those. They always answered me honestly. But they also made sure that I understood that I had a responsibility to live in the here and now and not worry about all the "What ifs." They said "there will be time for that, and when that day comes, we'll handle it together."

<i>High School:</i>

Mom and Dad told me once again that I was responsible for making good decisions. They told me that yes, CF is scary, unfair, and all those other things that make it so awful, but that no matter how bad it got, we were a family and we'd get through it.

--

I don't believe in sugar-coating things, but the stark realities don't need to be dropped on a little kid either. Talk about the meds and the treatments and do your best to describe how they work and why they're important.
Bring it up in family time conversation, rather than a "sit down, we have to talk" discussion. Remind her that you love her and wish that she didn't have to do all these things, but since she does, you'll handle it together.

As far as how to say "it's fatal," I wish I had the right words for you on that. Tell her that CF is a VERY serious disease and <i>people</i> (I stress the word people so that you keep her future focused) can and do die from it. Remind her that there is a lot to live for an a lot of things to experience and enjoy before that happens, and that's what you intend to help her do.

<b>This is something you probably want to emphasize: That she can't participate in fun things if she doesn't follow the rules. That's a good life lesson, CF or not. By phrasing it this way, it makes more sense to a child her age (whose reasoning skills are limited) than to say "take your meds or you're going to die."</b>

I hope that helps. Sorry to ramble so long.

 

[Alyssa]

Well said lightNlife.

I agree, discussed in stages and as the questions or curiosity arises -- there is no need for one big scary talk. Instead of planning a one time event, maybe it would be better to look for opportunities to make smaller points/comments over the next year or so.

Best wishes.

 

[Alyssa]

Well said lightNlife.

I agree, discussed in stages and as the questions or curiosity arises -- there is no need for one big scary talk. Instead of planning a one time event, maybe it would be better to look for opportunities to make smaller points/comments over the next year or so.

Best wishes.

 

[Alyssa]

Well said lightNlife.

I agree, discussed in stages and as the questions or curiosity arises -- there is no need for one big scary talk. Instead of planning a one time event, maybe it would be better to look for opportunities to make smaller points/comments over the next year or so.

Best wishes.

 

[welshgirl]

hi shantina,<img src="i/expressions/face-icon-small-happy.gif" border="0"> my little lad is also 9yrs old. he knows that cf is terminal but for his own piece of mind he has , how can i put it , blocked it out . he knows others with cf will die too young <img src="i/expressions/face-icon-small-sad.gif" border="0"> but he believes it won't happen to him. i refuse to tell him that it will (at the moment anyway) i will get bashed for this but i dont care!!!!
if it helps him this is what we do.

i agree with the others , do it slowly bit by bit. this is how the seriousness of it slowly dawned on joe. we were open and asked all the ???? we needed to when we have our clinic appointments right in front of joe and encouraged him to ask???? also. for this reason we never had to sit him down and say "cf is terminal"

don't forget to be optimistic with your child. there really could be a cure in the near future. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[welshgirl]

hi shantina,<img src="i/expressions/face-icon-small-happy.gif" border="0"> my little lad is also 9yrs old. he knows that cf is terminal but for his own piece of mind he has , how can i put it , blocked it out . he knows others with cf will die too young <img src="i/expressions/face-icon-small-sad.gif" border="0"> but he believes it won't happen to him. i refuse to tell him that it will (at the moment anyway) i will get bashed for this but i dont care!!!!
if it helps him this is what we do.

i agree with the others , do it slowly bit by bit. this is how the seriousness of it slowly dawned on joe. we were open and asked all the ???? we needed to when we have our clinic appointments right in front of joe and encouraged him to ask???? also. for this reason we never had to sit him down and say "cf is terminal"

don't forget to be optimistic with your child. there really could be a cure in the near future. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[welshgirl]

hi shantina,<img src="i/expressions/face-icon-small-happy.gif" border="0"> my little lad is also 9yrs old. he knows that cf is terminal but for his own piece of mind he has , how can i put it , blocked it out . he knows others with cf will die too young <img src="i/expressions/face-icon-small-sad.gif" border="0"> but he believes it won't happen to him. i refuse to tell him that it will (at the moment anyway) i will get bashed for this but i dont care!!!!
if it helps him this is what we do.

i agree with the others , do it slowly bit by bit. this is how the seriousness of it slowly dawned on joe. we were open and asked all the ???? we needed to when we have our clinic appointments right in front of joe and encouraged him to ask???? also. for this reason we never had to sit him down and say "cf is terminal"

don't forget to be optimistic with your child. there really could be a cure in the near future. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

My parents filled me in on the details about CF gradually, rather than dropping a big "by the way, it's terminal" bomb on my head.

They told me that yes, CF is scary, unfair, and all those other things that make it so awful, but that no matter how bad it got, we were a family and we'd get through it.

Bring it up in family time conversation, rather than a "sit down, we have to talk" discussion. Remind her that you love her and wish that she didn't have to do all these things, but since she does, you'll handle it together.

<div class="FTQUOTE"><begin quote>



Perfect advice!

We never had "the talk" officially with our kids. We have always been upfront about what cf is and does, but we never outright stated the life expectancy number. On all literature about CF it is described as life threatening. The boys know that they must do certain things to maintain good health and quality of life, but we never saw the need to be so definate about the fatal part.

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

My parents filled me in on the details about CF gradually, rather than dropping a big "by the way, it's terminal" bomb on my head.

They told me that yes, CF is scary, unfair, and all those other things that make it so awful, but that no matter how bad it got, we were a family and we'd get through it.

Bring it up in family time conversation, rather than a "sit down, we have to talk" discussion. Remind her that you love her and wish that she didn't have to do all these things, but since she does, you'll handle it together.

<div class="FTQUOTE"><begin quote>



Perfect advice!

We never had "the talk" officially with our kids. We have always been upfront about what cf is and does, but we never outright stated the life expectancy number. On all literature about CF it is described as life threatening. The boys know that they must do certain things to maintain good health and quality of life, but we never saw the need to be so definate about the fatal part.

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

My parents filled me in on the details about CF gradually, rather than dropping a big "by the way, it's terminal" bomb on my head.

They told me that yes, CF is scary, unfair, and all those other things that make it so awful, but that no matter how bad it got, we were a family and we'd get through it.

Bring it up in family time conversation, rather than a "sit down, we have to talk" discussion. Remind her that you love her and wish that she didn't have to do all these things, but since she does, you'll handle it together.

<div class="FTQUOTE"><begin quote>



Perfect advice!

We never had "the talk" officially with our kids. We have always been upfront about what cf is and does, but we never outright stated the life expectancy number. On all literature about CF it is described as life threatening. The boys know that they must do certain things to maintain good health and quality of life, but we never saw the need to be so definate about the fatal part.

 

[JazzysMom]

I believe Lightnlifes "phases" are good. I just want to also interject regarding using the term "if you dont take your meds, do your treatments etc you are going to die." Sadly with CF sometimes no matter how compliant we are things still take a course that we dont like. I had to explain that to my doctor in 2005 when I was admitted into the hospital twice. She was confused/frustrated as to WHY I had to be in so much when I was doing everything the doctor told me to do. With every ounce of strength I had.....I looked her straight in the eye and said "that is how CF is at times. Just like life is not always predictable and not always fair. We just do the best that we can!' I bring this up because to give all your faith in thinking treatments & meds is a sure fire way to not die or not get sick isnt accurate. Its obvious THE most likely way to prolong such things, but I wouldnt want her to take it literally!!!!!!!!!! Good Luck!

 

[JazzysMom]

I believe Lightnlifes "phases" are good. I just want to also interject regarding using the term "if you dont take your meds, do your treatments etc you are going to die." Sadly with CF sometimes no matter how compliant we are things still take a course that we dont like. I had to explain that to my doctor in 2005 when I was admitted into the hospital twice. She was confused/frustrated as to WHY I had to be in so much when I was doing everything the doctor told me to do. With every ounce of strength I had.....I looked her straight in the eye and said "that is how CF is at times. Just like life is not always predictable and not always fair. We just do the best that we can!' I bring this up because to give all your faith in thinking treatments & meds is a sure fire way to not die or not get sick isnt accurate. Its obvious THE most likely way to prolong such things, but I wouldnt want her to take it literally!!!!!!!!!! Good Luck!

 

[JazzysMom]

I believe Lightnlifes "phases" are good. I just want to also interject regarding using the term "if you dont take your meds, do your treatments etc you are going to die." Sadly with CF sometimes no matter how compliant we are things still take a course that we dont like. I had to explain that to my doctor in 2005 when I was admitted into the hospital twice. She was confused/frustrated as to WHY I had to be in so much when I was doing everything the doctor told me to do. With every ounce of strength I had.....I looked her straight in the eye and said "that is how CF is at times. Just like life is not always predictable and not always fair. We just do the best that we can!' I bring this up because to give all your faith in thinking treatments & meds is a sure fire way to not die or not get sick isnt accurate. Its obvious THE most likely way to prolong such things, but I wouldnt want her to take it literally!!!!!!!!!! Good Luck!

 

[Kelli]

I don't think that 'dropping that bomb' might be the best way to do things. I like the fact, that it may not be CF that kills me. I could very well die of 'old age'. And you might have more peace if you tell her this way. When I was a kid it was important for me to do everything that other kids did. I did know the gory deatails of CF (and wished I hadn't known them at the time) but that's life.

Maybe take a softer approach and it might go easier.

When we were telling my niece about CF (we both have CF). I had a bunny that had respritory problems so we associated the 2 of us with the bunny who coughed. Silly, I know, but it worked really well.

Good luck with things. I think that you're smart to do this while she is not in school so she can adjust and not have to worry about keeping her straight A's.

There are some good websites out there for kids with CF. Maybe look at those and take one of their approaches.

My heart breaks for the conversation you will have to have.

~Kelli
29 Female CF

 

[Kelli]

I don't think that 'dropping that bomb' might be the best way to do things. I like the fact, that it may not be CF that kills me. I could very well die of 'old age'. And you might have more peace if you tell her this way. When I was a kid it was important for me to do everything that other kids did. I did know the gory deatails of CF (and wished I hadn't known them at the time) but that's life.

Maybe take a softer approach and it might go easier.

When we were telling my niece about CF (we both have CF). I had a bunny that had respritory problems so we associated the 2 of us with the bunny who coughed. Silly, I know, but it worked really well.

Good luck with things. I think that you're smart to do this while she is not in school so she can adjust and not have to worry about keeping her straight A's.

There are some good websites out there for kids with CF. Maybe look at those and take one of their approaches.

My heart breaks for the conversation you will have to have.

~Kelli
29 Female CF