How do you tell your 11yr old (going on20) about her disease i the future?

[BlessedbymyGirl36]

Hi,
I love these boards and giving advice to new parents in giving them hope. Now myself I have a question. Erin my 11 yr old with CF is starting to ask more questions, i've been on this website with her and showed her how other kids suffer and strive with CF. I'm afriad of her seeing the "average life span" or unfortunate stories. I know i can keep going on with her, but evenutally with the world we live in she will google it, or hear it from somoene else. She does know there isn't a cure, and that people die from it. Is there any advice to be given about her age and how I intorduce the next step?? Thanks for any replies <img src="i/expressions/face-icon-small-smile.gif" border="0">
Nichole

 

[BlessedbymyGirl36]

Hi,
I love these boards and giving advice to new parents in giving them hope. Now myself I have a question. Erin my 11 yr old with CF is starting to ask more questions, i've been on this website with her and showed her how other kids suffer and strive with CF. I'm afriad of her seeing the "average life span" or unfortunate stories. I know i can keep going on with her, but evenutally with the world we live in she will google it, or hear it from somoene else. She does know there isn't a cure, and that people die from it. Is there any advice to be given about her age and how I intorduce the next step?? Thanks for any replies <img src="i/expressions/face-icon-small-smile.gif" border="0">
Nichole

 

[BlessedbymyGirl36]

Hi,
I love these boards and giving advice to new parents in giving them hope. Now myself I have a question. Erin my 11 yr old with CF is starting to ask more questions, i've been on this website with her and showed her how other kids suffer and strive with CF. I'm afriad of her seeing the "average life span" or unfortunate stories. I know i can keep going on with her, but evenutally with the world we live in she will google it, or hear it from somoene else. She does know there isn't a cure, and that people die from it. Is there any advice to be given about her age and how I intorduce the next step?? Thanks for any replies <img src="i/expressions/face-icon-small-smile.gif" border="0">
Nichole

 

[NoExcuses]

My best advice would be to be honest. Be factual.

As you said, if you don't tell her, she's going to find out on her own and wonder why you held the truth from her.

I've known the realities of this disease since I was around 5 - and I know many other adults on this site have known since a very young age as well.

 

[NoExcuses]

My best advice would be to be honest. Be factual.

As you said, if you don't tell her, she's going to find out on her own and wonder why you held the truth from her.

I've known the realities of this disease since I was around 5 - and I know many other adults on this site have known since a very young age as well.

 

[NoExcuses]

My best advice would be to be honest. Be factual.

As you said, if you don't tell her, she's going to find out on her own and wonder why you held the truth from her.

I've known the realities of this disease since I was around 5 - and I know many other adults on this site have known since a very young age as well.

 

[JazzysMom]

There is no way to protect her from the facts of CF. IMHO its better to at least be aware of things from you rather then hear it from someone else. Her seeing the median age doesnt mean she will be dead by then. It does mean that she needs to work hard because statistically CFers die younger then someone without CF. Answer her questions as they come up. For her and others ignorance is one of the worst things especially when it comes to health issues~~~

 

[JazzysMom]

There is no way to protect her from the facts of CF. IMHO its better to at least be aware of things from you rather then hear it from someone else. Her seeing the median age doesnt mean she will be dead by then. It does mean that she needs to work hard because statistically CFers die younger then someone without CF. Answer her questions as they come up. For her and others ignorance is one of the worst things especially when it comes to health issues~~~

 

[JazzysMom]

There is no way to protect her from the facts of CF. IMHO its better to at least be aware of things from you rather then hear it from someone else. Her seeing the median age doesnt mean she will be dead by then. It does mean that she needs to work hard because statistically CFers die younger then someone without CF. Answer her questions as they come up. For her and others ignorance is one of the worst things especially when it comes to health issues~~~

 

[BlessedbymyGirl36]

Thank you so much for your advice, this is definately a talk i have not been looking forward to, Erin is an old soul and I know she'll be fine, it's just so hard as a parent to have to do. x thanks again x Nichole

 

[BlessedbymyGirl36]

Thank you so much for your advice, this is definately a talk i have not been looking forward to, Erin is an old soul and I know she'll be fine, it's just so hard as a parent to have to do. x thanks again x Nichole

 

[BlessedbymyGirl36]

Thank you so much for your advice, this is definately a talk i have not been looking forward to, Erin is an old soul and I know she'll be fine, it's just so hard as a parent to have to do. x thanks again x Nichole

 

[amysmom]

I definitely wouldn't have a serious 'let's sit down and talk' talk with her. I think that will make it sound inevitable and very scary for her. I don't think you need to have a talk at all about life span. She already knows CF is fatal. We really don't know how long she'll live. You don't want to start any 'self fulfilling prophecy' in her mind. If your daughter brings it up at some point, I would tell her the facts about the life expectancy and immediately remind her that no one really knows and it's not something that's even relevant to think about.

 

[amysmom]

I definitely wouldn't have a serious 'let's sit down and talk' talk with her. I think that will make it sound inevitable and very scary for her. I don't think you need to have a talk at all about life span. She already knows CF is fatal. We really don't know how long she'll live. You don't want to start any 'self fulfilling prophecy' in her mind. If your daughter brings it up at some point, I would tell her the facts about the life expectancy and immediately remind her that no one really knows and it's not something that's even relevant to think about.

 

[amysmom]

I definitely wouldn't have a serious 'let's sit down and talk' talk with her. I think that will make it sound inevitable and very scary for her. I don't think you need to have a talk at all about life span. She already knows CF is fatal. We really don't know how long she'll live. You don't want to start any 'self fulfilling prophecy' in her mind. If your daughter brings it up at some point, I would tell her the facts about the life expectancy and immediately remind her that no one really knows and it's not something that's even relevant to think about.

 

[BlessedbymyGirl36]

amysmom,
that is how i have been thinking up to this point. Erin tends to be a tad dramatic (nothing like her mother) haha and I know she would take this to a point far past what it could be. I think everyone is different and putting an 'average age' on the disease is a number. Like i told my mother in law when we decided to have Jake (she was against taking the chance of another child with CF) that we all have a life to live whether it's a day or 100 years. Thanks you again for your opinions <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[BlessedbymyGirl36]

amysmom,
that is how i have been thinking up to this point. Erin tends to be a tad dramatic (nothing like her mother) haha and I know she would take this to a point far past what it could be. I think everyone is different and putting an 'average age' on the disease is a number. Like i told my mother in law when we decided to have Jake (she was against taking the chance of another child with CF) that we all have a life to live whether it's a day or 100 years. Thanks you again for your opinions <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[BlessedbymyGirl36]

amysmom,
that is how i have been thinking up to this point. Erin tends to be a tad dramatic (nothing like her mother) haha and I know she would take this to a point far past what it could be. I think everyone is different and putting an 'average age' on the disease is a number. Like i told my mother in law when we decided to have Jake (she was against taking the chance of another child with CF) that we all have a life to live whether it's a day or 100 years. Thanks you again for your opinions <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[LouLou]

If you are not involved with CFF fundraising this is a great way to show her how she can make a difference and also exposing her to the "facts" of cf. Also, share with her in the joys of break throughs in cf...including increases in life expectancies. Just realize the 36.8 is a mean not an average... this could be a good math lesson and proves out how some die very young and some very, very old. The best she can do is to take the absolute best care of herself and in particular her lungs so that she'll have them working for her for a very long time. My parents always reminded me if there was a cure it would stop my disease in it's tracks but not fix any damage I'd already done. To this day this (among LOOOOTS of other things) helps motivate me in my 3 hrs. of care.

 

[LouLou]

If you are not involved with CFF fundraising this is a great way to show her how she can make a difference and also exposing her to the "facts" of cf. Also, share with her in the joys of break throughs in cf...including increases in life expectancies. Just realize the 36.8 is a mean not an average... this could be a good math lesson and proves out how some die very young and some very, very old. The best she can do is to take the absolute best care of herself and in particular her lungs so that she'll have them working for her for a very long time. My parents always reminded me if there was a cure it would stop my disease in it's tracks but not fix any damage I'd already done. To this day this (among LOOOOTS of other things) helps motivate me in my 3 hrs. of care.