How do I tell her

K

Kelli

New member
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
 
S

sdelorenzo

Guest
I didn't want my kids to learn that cf was fatal by reading it in a book or a friend telling them. When my kids don't want to take their medications, etc. I tell them that they have to take their medications to stay healthy and if they don't take their medications, eat well or do their treatments they won't stay healthy. I have on occassion mentioned people that are not healthy often do not live very long. They know that before we had all of the medications recently that kids with cf did not survive a long time and they should be very thankful we have the medications now to keep them healthy. So I bring it up in casual conversations. They do know that some people with cf do die, everyone dies. I really don't see cf as terminal, meaning that is what my kids are going to die from. Anyone can die in a car accident, etc. There are people who do well with cf and they are able live a great, long life. I only think it is going to get better as our kids get older. So, I am not going to tell my kids cf is going to kill them. I don't know that. I make sure they know that life is unpredicable and unfortunately people die. I also don't want to have any fear of dying. I also make sure they have a good understanding about God's view of Heaven, so it is a wonderful place as He describes in the Bible. I think you might be surprised at how much your daughter knows. I also wouldn't sit her down, I would just bring it in casual conversation.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
I didn't want my kids to learn that cf was fatal by reading it in a book or a friend telling them. When my kids don't want to take their medications, etc. I tell them that they have to take their medications to stay healthy and if they don't take their medications, eat well or do their treatments they won't stay healthy. I have on occassion mentioned people that are not healthy often do not live very long. They know that before we had all of the medications recently that kids with cf did not survive a long time and they should be very thankful we have the medications now to keep them healthy. So I bring it up in casual conversations. They do know that some people with cf do die, everyone dies. I really don't see cf as terminal, meaning that is what my kids are going to die from. Anyone can die in a car accident, etc. There are people who do well with cf and they are able live a great, long life. I only think it is going to get better as our kids get older. So, I am not going to tell my kids cf is going to kill them. I don't know that. I make sure they know that life is unpredicable and unfortunately people die. I also don't want to have any fear of dying. I also make sure they have a good understanding about God's view of Heaven, so it is a wonderful place as He describes in the Bible. I think you might be surprised at how much your daughter knows. I also wouldn't sit her down, I would just bring it in casual conversation.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
I didn't want my kids to learn that cf was fatal by reading it in a book or a friend telling them. When my kids don't want to take their medications, etc. I tell them that they have to take their medications to stay healthy and if they don't take their medications, eat well or do their treatments they won't stay healthy. I have on occassion mentioned people that are not healthy often do not live very long. They know that before we had all of the medications recently that kids with cf did not survive a long time and they should be very thankful we have the medications now to keep them healthy. So I bring it up in casual conversations. They do know that some people with cf do die, everyone dies. I really don't see cf as terminal, meaning that is what my kids are going to die from. Anyone can die in a car accident, etc. There are people who do well with cf and they are able live a great, long life. I only think it is going to get better as our kids get older. So, I am not going to tell my kids cf is going to kill them. I don't know that. I make sure they know that life is unpredicable and unfortunately people die. I also don't want to have any fear of dying. I also make sure they have a good understanding about God's view of Heaven, so it is a wonderful place as He describes in the Bible. I think you might be surprised at how much your daughter knows. I also wouldn't sit her down, I would just bring it in casual conversation.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
T

tammykrumrey

Guest
We take it in baby steps as well, with what they can understand at the time. It seems to work. My girls also see and hear us talk about my nephew who has CF, who does not do nearly as well as they do. It gives me opportunities, I think, to discuss the impact CF can have on one as they age, or sometimes when Dalton is not compliant, it gives me the chance to teach my girls the outcome of not doing things.

I don't think you should just 'have a talk and tell her that it's terminal'. My older daughter is 9, and I cannot imagine doing that to her. It would crush her at this age. She already knows people die from CF, but she isn't worried about her or her sister at this age. She just wants to be a kid, play with her friends, play with her dog...

Good luck. I know it's difficult. But be as positive with her as you can, while still being realistic. I do not sugar coat things, but I do tell them what they can do to improve the chances. They see me volunteering for the CFF for months out of the year, have heard me speak in front of 100s of people regarding CF, and I always tell the facts. That is typically when more questions from my girls start popping up. Like last year one asked me about what did it mean when I said the median life expectancy was almost 37 years old. It helped open the door for more discussions.
 
T

tammykrumrey

Guest
We take it in baby steps as well, with what they can understand at the time. It seems to work. My girls also see and hear us talk about my nephew who has CF, who does not do nearly as well as they do. It gives me opportunities, I think, to discuss the impact CF can have on one as they age, or sometimes when Dalton is not compliant, it gives me the chance to teach my girls the outcome of not doing things.

I don't think you should just 'have a talk and tell her that it's terminal'. My older daughter is 9, and I cannot imagine doing that to her. It would crush her at this age. She already knows people die from CF, but she isn't worried about her or her sister at this age. She just wants to be a kid, play with her friends, play with her dog...

Good luck. I know it's difficult. But be as positive with her as you can, while still being realistic. I do not sugar coat things, but I do tell them what they can do to improve the chances. They see me volunteering for the CFF for months out of the year, have heard me speak in front of 100s of people regarding CF, and I always tell the facts. That is typically when more questions from my girls start popping up. Like last year one asked me about what did it mean when I said the median life expectancy was almost 37 years old. It helped open the door for more discussions.
 
T

tammykrumrey

Guest
We take it in baby steps as well, with what they can understand at the time. It seems to work. My girls also see and hear us talk about my nephew who has CF, who does not do nearly as well as they do. It gives me opportunities, I think, to discuss the impact CF can have on one as they age, or sometimes when Dalton is not compliant, it gives me the chance to teach my girls the outcome of not doing things.

I don't think you should just 'have a talk and tell her that it's terminal'. My older daughter is 9, and I cannot imagine doing that to her. It would crush her at this age. She already knows people die from CF, but she isn't worried about her or her sister at this age. She just wants to be a kid, play with her friends, play with her dog...

Good luck. I know it's difficult. But be as positive with her as you can, while still being realistic. I do not sugar coat things, but I do tell them what they can do to improve the chances. They see me volunteering for the CFF for months out of the year, have heard me speak in front of 100s of people regarding CF, and I always tell the facts. That is typically when more questions from my girls start popping up. Like last year one asked me about what did it mean when I said the median life expectancy was almost 37 years old. It helped open the door for more discussions.
 
B

Breezy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kelli</b></i>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.</end quote></div>


I don't think that's silly again! That way your neice will learn that the bunney is sick and she needs to take care of it so it doesn't get sick, and through that she'll learn she needs to care for herself in the same way. I think it's brilliant!
 
B

Breezy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kelli</b></i>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.</end quote></div>


I don't think that's silly again! That way your neice will learn that the bunney is sick and she needs to take care of it so it doesn't get sick, and through that she'll learn she needs to care for herself in the same way. I think it's brilliant!
 
B

Breezy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kelli</b></i>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.</end quote></div>


I don't think that's silly again! That way your neice will learn that the bunney is sick and she needs to take care of it so it doesn't get sick, and through that she'll learn she needs to care for herself in the same way. I think it's brilliant!
 
M

MYBOY

New member
I have a 10 yr old boy w/CF. We have never really sat down and had "the talk" either. Once he asked me if he was going to die young. I told him that it is possible with CF to die younger, but everyone is different and he needed to always do his treatments and exercise to stay as healthy as possible.

I think that is all he needs to know at this point and I don't think he needs to be scared or have to worry about it all the time. I know he would dwell on it (but everyone knows their kid best and what they can handle). I've told him before that I was sorry he had CF and had to do treatments etc. He looked at me and said "It's OK Mom at least I can walk, run, play sports and look normal". I was so proud of him! I think having a boy in his class in a wheelchair with MD makes him appreciate things. At this stage he is happy and active and just thinks of CF as doing treatments (with some polyp surgeries). I know someday it will be a lot worse - but why dwell on it!
 
M

MYBOY

New member
I have a 10 yr old boy w/CF. We have never really sat down and had "the talk" either. Once he asked me if he was going to die young. I told him that it is possible with CF to die younger, but everyone is different and he needed to always do his treatments and exercise to stay as healthy as possible.

I think that is all he needs to know at this point and I don't think he needs to be scared or have to worry about it all the time. I know he would dwell on it (but everyone knows their kid best and what they can handle). I've told him before that I was sorry he had CF and had to do treatments etc. He looked at me and said "It's OK Mom at least I can walk, run, play sports and look normal". I was so proud of him! I think having a boy in his class in a wheelchair with MD makes him appreciate things. At this stage he is happy and active and just thinks of CF as doing treatments (with some polyp surgeries). I know someday it will be a lot worse - but why dwell on it!
 
M

MYBOY

New member
I have a 10 yr old boy w/CF. We have never really sat down and had "the talk" either. Once he asked me if he was going to die young. I told him that it is possible with CF to die younger, but everyone is different and he needed to always do his treatments and exercise to stay as healthy as possible.

I think that is all he needs to know at this point and I don't think he needs to be scared or have to worry about it all the time. I know he would dwell on it (but everyone knows their kid best and what they can handle). I've told him before that I was sorry he had CF and had to do treatments etc. He looked at me and said "It's OK Mom at least I can walk, run, play sports and look normal". I was so proud of him! I think having a boy in his class in a wheelchair with MD makes him appreciate things. At this stage he is happy and active and just thinks of CF as doing treatments (with some polyp surgeries). I know someday it will be a lot worse - but why dwell on it!
 
C

chipie12

New member
I have a 12 year old son, and we have always taken things day by day. He has mostly GI problems, and he knows he will probably need a liver transplant someday. He recently saw something on TV and asked if cf kills people. We told him there are some people who have and that's why we try to keep him so healthy. He hasn't mentioned it again, but I often think about when he will research on his own. When I started reading this post, I felt guilty for not saying something more to my son, but the truth is no one knows our children like ourselves, and I feel I am handling things with his best interest in mind. I think "lightNlife" described things best.
 
C

chipie12

New member
I have a 12 year old son, and we have always taken things day by day. He has mostly GI problems, and he knows he will probably need a liver transplant someday. He recently saw something on TV and asked if cf kills people. We told him there are some people who have and that's why we try to keep him so healthy. He hasn't mentioned it again, but I often think about when he will research on his own. When I started reading this post, I felt guilty for not saying something more to my son, but the truth is no one knows our children like ourselves, and I feel I am handling things with his best interest in mind. I think "lightNlife" described things best.
 
C

chipie12

New member
I have a 12 year old son, and we have always taken things day by day. He has mostly GI problems, and he knows he will probably need a liver transplant someday. He recently saw something on TV and asked if cf kills people. We told him there are some people who have and that's why we try to keep him so healthy. He hasn't mentioned it again, but I often think about when he will research on his own. When I started reading this post, I felt guilty for not saying something more to my son, but the truth is no one knows our children like ourselves, and I feel I am handling things with his best interest in mind. I think "lightNlife" described things best.
 
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