How do you........

Seana30 · Sep 19, 2008

Courtney came home from her friends house the other day in tears.

Her two best friends, Justin and Jacob knew she had CF but they never really had a big discussion about it.

For whatever reason the boys along with their dad researched CF on the internet. The next day when she went to their house Justin was acting real weird and left the room. Come to find out he left the room because he was crying and didn't want Courtney to see him crying. All three of them, including dad, cried after reading about CF.

Once they all talked about it she explained to them that 36 is the average survival age of CF patients, but that does not mean she may not possible live longer.

She doesn't want to make a big deal out of it, but I also don't want the boys to freak out if she ends up in the hospital for any reason.

She wants the boys to understand, yes, she has a serious life threatening disease, but she is going to fight hard, and hopefully live a long, fullfilling life.

Any suggestion on the best way to explain this to someone who has not dealt with CF before?

Thanks

Seana

Seana30 · Sep 19, 2008

Courtney came home from her friends house the other day in tears.

Her two best friends, Justin and Jacob knew she had CF but they never really had a big discussion about it.

For whatever reason the boys along with their dad researched CF on the internet. The next day when she went to their house Justin was acting real weird and left the room. Come to find out he left the room because he was crying and didn't want Courtney to see him crying. All three of them, including dad, cried after reading about CF.

Once they all talked about it she explained to them that 36 is the average survival age of CF patients, but that does not mean she may not possible live longer.

She doesn't want to make a big deal out of it, but I also don't want the boys to freak out if she ends up in the hospital for any reason.

She wants the boys to understand, yes, she has a serious life threatening disease, but she is going to fight hard, and hopefully live a long, fullfilling life.

Any suggestion on the best way to explain this to someone who has not dealt with CF before?

Thanks

Seana

Seana30 · Sep 19, 2008

Courtney came home from her friends house the other day in tears.

Her two best friends, Justin and Jacob knew she had CF but they never really had a big discussion about it.

For whatever reason the boys along with their dad researched CF on the internet. The next day when she went to their house Justin was acting real weird and left the room. Come to find out he left the room because he was crying and didn't want Courtney to see him crying. All three of them, including dad, cried after reading about CF.

Once they all talked about it she explained to them that 36 is the average survival age of CF patients, but that does not mean she may not possible live longer.

She doesn't want to make a big deal out of it, but I also don't want the boys to freak out if she ends up in the hospital for any reason.

She wants the boys to understand, yes, she has a serious life threatening disease, but she is going to fight hard, and hopefully live a long, fullfilling life.

Any suggestion on the best way to explain this to someone who has not dealt with CF before?

Thanks

Seana

Seana30 · Sep 19, 2008

Courtney came home from her friends house the other day in tears.

Her two best friends, Justin and Jacob knew she had CF but they never really had a big discussion about it.

For whatever reason the boys along with their dad researched CF on the internet. The next day when she went to their house Justin was acting real weird and left the room. Come to find out he left the room because he was crying and didn't want Courtney to see him crying. All three of them, including dad, cried after reading about CF.

Once they all talked about it she explained to them that 36 is the average survival age of CF patients, but that does not mean she may not possible live longer.

She doesn't want to make a big deal out of it, but I also don't want the boys to freak out if she ends up in the hospital for any reason.

She wants the boys to understand, yes, she has a serious life threatening disease, but she is going to fight hard, and hopefully live a long, fullfilling life.

Any suggestion on the best way to explain this to someone who has not dealt with CF before?

Thanks

Seana

Seana30 · Sep 19, 2008

Courtney came home from her friends house the other day in tears.
 
 Her two best friends, Justin and Jacob knew she had CF but they never really had a big discussion about it.
 
 For whatever reason the boys along with their dad researched CF on the internet. The next day when she went to their house Justin was acting real weird and left the room. Come to find out he left the room because he was crying and didn't want Courtney to see him crying. All three of them, including dad, cried after reading about CF.
 
 Once they all talked about it she explained to them that 36 is the average survival age of CF patients, but that does not mean she may not possible live longer.
 
 She doesn't want to make a big deal out of it, but I also don't want the boys to freak out if she ends up in the hospital for any reason.
 
 She wants the boys to understand, yes, she has a serious life threatening disease, but she is going to fight hard, and hopefully live a long, fullfilling life.
 
 Any suggestion on the best way to explain this to someone who has not dealt with CF before?
 
 Thanks
 
 Seana

welshwitch · Sep 19, 2008

oh, god. i remember these days. i remember friends confronting me about the CF lifespan. it was so much pressure for a 16 year old (me) to handle at the time!

honestly, i really don't have a good answer for this...except to give you some strategies i've tried over the years. showing them printouts of my PFTs. having friends talk to me parents about it.

honestly, i'm still struggling when it comes to letting people in on this for that very reason. people tend to turn to the internet and get some very grim statistics.

in theory, i'd like to be some sort of CF advocate and educator, but i'm too chicken to do that...but it seems like if YOU take control of the situation to educate people BEFORE they turn to other sources of knowledge, it could diffuse the situation.

best of luck to your daughter...i've DEFINITELY been there before, and it's NO FUN!

welshwitch · Sep 19, 2008

oh, god. i remember these days. i remember friends confronting me about the CF lifespan. it was so much pressure for a 16 year old (me) to handle at the time!

honestly, i really don't have a good answer for this...except to give you some strategies i've tried over the years. showing them printouts of my PFTs. having friends talk to me parents about it.

honestly, i'm still struggling when it comes to letting people in on this for that very reason. people tend to turn to the internet and get some very grim statistics.

in theory, i'd like to be some sort of CF advocate and educator, but i'm too chicken to do that...but it seems like if YOU take control of the situation to educate people BEFORE they turn to other sources of knowledge, it could diffuse the situation.

best of luck to your daughter...i've DEFINITELY been there before, and it's NO FUN!

welshwitch · Sep 19, 2008

oh, god. i remember these days. i remember friends confronting me about the CF lifespan. it was so much pressure for a 16 year old (me) to handle at the time!

honestly, i really don't have a good answer for this...except to give you some strategies i've tried over the years. showing them printouts of my PFTs. having friends talk to me parents about it.

honestly, i'm still struggling when it comes to letting people in on this for that very reason. people tend to turn to the internet and get some very grim statistics.

in theory, i'd like to be some sort of CF advocate and educator, but i'm too chicken to do that...but it seems like if YOU take control of the situation to educate people BEFORE they turn to other sources of knowledge, it could diffuse the situation.

best of luck to your daughter...i've DEFINITELY been there before, and it's NO FUN!

welshwitch · Sep 19, 2008

oh, god. i remember these days. i remember friends confronting me about the CF lifespan. it was so much pressure for a 16 year old (me) to handle at the time!

honestly, i really don't have a good answer for this...except to give you some strategies i've tried over the years. showing them printouts of my PFTs. having friends talk to me parents about it.

honestly, i'm still struggling when it comes to letting people in on this for that very reason. people tend to turn to the internet and get some very grim statistics.

in theory, i'd like to be some sort of CF advocate and educator, but i'm too chicken to do that...but it seems like if YOU take control of the situation to educate people BEFORE they turn to other sources of knowledge, it could diffuse the situation.

best of luck to your daughter...i've DEFINITELY been there before, and it's NO FUN!

welshwitch · Sep 19, 2008

oh, god. i remember these days. i remember friends confronting me about the CF lifespan. it was so much pressure for a 16 year old (me) to handle at the time!
 
 honestly, i really don't have a good answer for this...except to give you some strategies i've tried over the years. showing them printouts of my PFTs. having friends talk to me parents about it.
 
 honestly, i'm still struggling when it comes to letting people in on this for that very reason. people tend to turn to the internet and get some very grim statistics.
 
 in theory, i'd like to be some sort of CF advocate and educator, but i'm too chicken to do that...but it seems like if YOU take control of the situation to educate people BEFORE they turn to other sources of knowledge, it could diffuse the situation.
 
 best of luck to your daughter...i've DEFINITELY been there before, and it's NO FUN!

JazzysMom · Sep 19, 2008

Probably the best way is to explain how every CFer is different. The info they read are statistics & that can have so many variables that influence it.

I remember sitting in home room in my Senior year & another CFer from my area who I didnt know had passed away. One of my classmates looked at me with tears & said "I am sorry, Missy". I was like wtf? Dont be sorry, it wasnt me LOL!

She was shocked that I said that, but it was just a fact of CF to me.

I guess that doesnt help you much.....maybe she could get a book for them to read. There are so many good books out there that would be better then them reading the internet!

How about them coming here? I am not saying hide the horrible side of CF, but that life has to be lived!!!!

HUGS

JazzysMom · Sep 19, 2008

Probably the best way is to explain how every CFer is different. The info they read are statistics & that can have so many variables that influence it.

I remember sitting in home room in my Senior year & another CFer from my area who I didnt know had passed away. One of my classmates looked at me with tears & said "I am sorry, Missy". I was like wtf? Dont be sorry, it wasnt me LOL!

She was shocked that I said that, but it was just a fact of CF to me.

I guess that doesnt help you much.....maybe she could get a book for them to read. There are so many good books out there that would be better then them reading the internet!

How about them coming here? I am not saying hide the horrible side of CF, but that life has to be lived!!!!

HUGS

JazzysMom · Sep 19, 2008

Probably the best way is to explain how every CFer is different. The info they read are statistics & that can have so many variables that influence it.

I remember sitting in home room in my Senior year & another CFer from my area who I didnt know had passed away. One of my classmates looked at me with tears & said "I am sorry, Missy". I was like wtf? Dont be sorry, it wasnt me LOL!

She was shocked that I said that, but it was just a fact of CF to me.

I guess that doesnt help you much.....maybe she could get a book for them to read. There are so many good books out there that would be better then them reading the internet!

How about them coming here? I am not saying hide the horrible side of CF, but that life has to be lived!!!!

HUGS

JazzysMom · Sep 19, 2008

Probably the best way is to explain how every CFer is different. The info they read are statistics & that can have so many variables that influence it.

I remember sitting in home room in my Senior year & another CFer from my area who I didnt know had passed away. One of my classmates looked at me with tears & said "I am sorry, Missy". I was like wtf? Dont be sorry, it wasnt me LOL!

She was shocked that I said that, but it was just a fact of CF to me.

I guess that doesnt help you much.....maybe she could get a book for them to read. There are so many good books out there that would be better then them reading the internet!

How about them coming here? I am not saying hide the horrible side of CF, but that life has to be lived!!!!

HUGS

JazzysMom · Sep 19, 2008

Probably the best way is to explain how every CFer is different. The info they read are statistics & that can have so many variables that influence it.
 
 I remember sitting in home room in my Senior year & another CFer from my area who I didnt know had passed away. One of my classmates looked at me with tears & said "I am sorry, Missy". I was like wtf? Dont be sorry, it wasnt me LOL!
 
 She was shocked that I said that, but it was just a fact of CF to me.
 
 I guess that doesnt help you much.....maybe she could get a book for them to read. There are so many good books out there that would be better then them reading the internet!
 
 How about them coming here? I am not saying hide the horrible side of CF, but that life has to be lived!!!!
 
 HUGS

Ricky123 · Sep 19, 2008