don,t want to be insensative but.....

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Allie

New member
This is directed to Deb, about telling Cheyenne, I had no idea how to answer, so I called Ry's mother and asked her how she did it. He was 4 or 5 and she talked to him about how Cf made him cough, and how Cf hurts your lungs, and you need your lungs to live which is why you have to do all your treatments, to keep Cf from hurting your lungs as much as possible, even though you can't stop it all the way. Cf eventually makes it hard for your lungs to work, and then you die, which nobody knows how long that will take, but not tomorrow or a month from now, just in the future. She said as he got older, more details were added as he asked questions, most of which were'nt the concerns she expected him to have. But he had a full picture of his shortened life expectancy by 8 or 9, she figured. Kids are smart.

I hope this helped Deb, it was the only person I could think of to ask.
 
A

Allie

New member
This is directed to Deb, about telling Cheyenne, I had no idea how to answer, so I called Ry's mother and asked her how she did it. He was 4 or 5 and she talked to him about how Cf made him cough, and how Cf hurts your lungs, and you need your lungs to live which is why you have to do all your treatments, to keep Cf from hurting your lungs as much as possible, even though you can't stop it all the way. Cf eventually makes it hard for your lungs to work, and then you die, which nobody knows how long that will take, but not tomorrow or a month from now, just in the future. She said as he got older, more details were added as he asked questions, most of which were'nt the concerns she expected him to have. But he had a full picture of his shortened life expectancy by 8 or 9, she figured. Kids are smart.

I hope this helped Deb, it was the only person I could think of to ask.
 
6

65rosessamurai

Guest
Smart Idea, Allie!!
I'd ask my mom how she broke the news (to get more details), but It'd be long distance!
 
6

65rosessamurai

Guest
Smart Idea, Allie!!
I'd ask my mom how she broke the news (to get more details), but It'd be long distance!
 
J

JBUCCA

New member
i just want to clear something up, when i said doing treatments will make you live longer and stay healthy, i meant it will HELP. I was never sugarcoated anything but i was told to never give up and have faith. and i believe in that... yes cf can take my life but then again i can get hit by a bus tomorrow. so there is both sides to everything...all i meant to say is let the dam boy have hope and faith and believe in the battle to win and fight cf and prove everyone is wrong ...instead of saying sorry honey you have cf and it will take your life one day.. yes death freaks me out and i try to stay positive. but i also thoght i couldnt have kids and if i did i would die or get sicker , but so far my pregnacy was great and my son is healthy and so i believe that it not what is written in the cf books the facts... cause every year the facts change..... and every year there is more hope , so no i wouldnt tell him cf will one day take his life... could it yes, will it, maybe. and as far as the mutatations go i believe thats bull sh... because i have the worst two mututaions and shocked the dr.s that i was diagn. till age 6 with no meds.. and now they said i could never have a baby, surprise... baby boy... i believe when god says its time its time... hey some people have 9 lives! what can i say... not saying me cause i know everyday is a strugle and i know in my heart what cf will do..
 
J

JBUCCA

New member
i just want to clear something up, when i said doing treatments will make you live longer and stay healthy, i meant it will HELP. I was never sugarcoated anything but i was told to never give up and have faith. and i believe in that... yes cf can take my life but then again i can get hit by a bus tomorrow. so there is both sides to everything...all i meant to say is let the dam boy have hope and faith and believe in the battle to win and fight cf and prove everyone is wrong ...instead of saying sorry honey you have cf and it will take your life one day.. yes death freaks me out and i try to stay positive. but i also thoght i couldnt have kids and if i did i would die or get sicker , but so far my pregnacy was great and my son is healthy and so i believe that it not what is written in the cf books the facts... cause every year the facts change..... and every year there is more hope , so no i wouldnt tell him cf will one day take his life... could it yes, will it, maybe. and as far as the mutatations go i believe thats bull sh... because i have the worst two mututaions and shocked the dr.s that i was diagn. till age 6 with no meds.. and now they said i could never have a baby, surprise... baby boy... i believe when god says its time its time... hey some people have 9 lives! what can i say... not saying me cause i know everyday is a strugle and i know in my heart what cf will do..
 
A

anonymous

New member
Good for you Jenn. Great attitude. A great long and quality life. Life is what we make from it.
<img src="i/expressions/heart.gif" border="0">

Risa
 
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anonymous

New member
Good for you Jenn. Great attitude. A great long and quality life. Life is what we make from it.
<img src="i/expressions/heart.gif" border="0">

Risa
 
M

melleemac

Guest
I have 11 year old twin boys. I have never hid any aspects of the c f from them, they are pretty well informed, they have had to be. At the age of 6 they had less than half of their lung function. They have always asked questions and Ive always told them the truth in a way not to freak them out. They have asked if they will die and at what age of cf. My reply is that some people die very young, others live to a grand old age. They know that even for someone with c f they have been really sick and they know that if they do not do their treatment that they will die. They know that they may need lung transplants and they may have trouble having kids. They do not dwell on the fact they they may die young, they go out and have fun like any other 11 year olds, they dont let anything hold them back. When they are worried, which is mainly when they are in hospital, we talk about it. I would never hide it from them, but I dont throw it in their faces either. When they want to talk about it we do.
Mel
 
M

melleemac

Guest
I have 11 year old twin boys. I have never hid any aspects of the c f from them, they are pretty well informed, they have had to be. At the age of 6 they had less than half of their lung function. They have always asked questions and Ive always told them the truth in a way not to freak them out. They have asked if they will die and at what age of cf. My reply is that some people die very young, others live to a grand old age. They know that even for someone with c f they have been really sick and they know that if they do not do their treatment that they will die. They know that they may need lung transplants and they may have trouble having kids. They do not dwell on the fact they they may die young, they go out and have fun like any other 11 year olds, they dont let anything hold them back. When they are worried, which is mainly when they are in hospital, we talk about it. I would never hide it from them, but I dont throw it in their faces either. When they want to talk about it we do.
Mel
 
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mousesmom

New member
You need to be very careful how you explain CF to a yough child. You need to stress the importance of not skipping medication and treatments and explain that the consequences of this. At the same time you don't want to scare them. Alway be very positive (even if you don't feel that way). There was a family in SA that explained to both thier kids (one with and one without cf) that the brother will die young. These kids cried every night about this. I think that everyone has a right to a future and needs to live according to goals set such as what to become when you're older etc. Who says a person/child with CF will live longer than one without? Illness is not the only way to die.

The only time I was very firm with Monique was when she got to school and I warned her that drugs and smoking are not an option as this would mean a death sentence.

Allways be the most you can be.
 
M

mousesmom

New member
You need to be very careful how you explain CF to a yough child. You need to stress the importance of not skipping medication and treatments and explain that the consequences of this. At the same time you don't want to scare them. Alway be very positive (even if you don't feel that way). There was a family in SA that explained to both thier kids (one with and one without cf) that the brother will die young. These kids cried every night about this. I think that everyone has a right to a future and needs to live according to goals set such as what to become when you're older etc. Who says a person/child with CF will live longer than one without? Illness is not the only way to die.

The only time I was very firm with Monique was when she got to school and I warned her that drugs and smoking are not an option as this would mean a death sentence.

Allways be the most you can be.
 
L

lovingBenandCambree

New member
First off I would sit down and ask your son just what he believes CF to be. Get a general idea of how his little mind is working. He may just surprise you. Then ask him if he has any questions for you about it. Make sure that he knows that the lines of communication are always open. I agree with others that you don't want to sugar coat it but you also don't want to give him too much information too fast. This needs to be a conversation that goes on always so that he knows he has someone to talk to about it with any questions that might come up.

Its interesting because my older brother also has CF. I cannot remember a time that I didn't know what it meant to have CF. I dont remember being specifically told what it all entailed it was just sort of instinct or something. Im sure someone told me at some point. Doctors werent the most positive but anyway, when my brother was 13 he read an article in the paper about it and then he went into my mom and said, " Im going to die from this?" Depression later sent in quite severly. Luckily he has come past that point. He is very healthy. I do believe that he has quite a bit of denial over his illness even though he has seen the problems that I have gone through. My point of this story is don't let this happen. My mom didnt feel like she had ever kept anything from him and I couldn't believe it when I heard it because I had known for so long what the end entails. Good luck!

Emilee
 
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lovingBenandCambree

New member
First off I would sit down and ask your son just what he believes CF to be. Get a general idea of how his little mind is working. He may just surprise you. Then ask him if he has any questions for you about it. Make sure that he knows that the lines of communication are always open. I agree with others that you don't want to sugar coat it but you also don't want to give him too much information too fast. This needs to be a conversation that goes on always so that he knows he has someone to talk to about it with any questions that might come up.

Its interesting because my older brother also has CF. I cannot remember a time that I didn't know what it meant to have CF. I dont remember being specifically told what it all entailed it was just sort of instinct or something. Im sure someone told me at some point. Doctors werent the most positive but anyway, when my brother was 13 he read an article in the paper about it and then he went into my mom and said, " Im going to die from this?" Depression later sent in quite severly. Luckily he has come past that point. He is very healthy. I do believe that he has quite a bit of denial over his illness even though he has seen the problems that I have gone through. My point of this story is don't let this happen. My mom didnt feel like she had ever kept anything from him and I couldn't believe it when I heard it because I had known for so long what the end entails. Good luck!

Emilee
 
A

anonymous

New member
hi janet here . thank you to everyone who replied . i will think long and hard about when we decide to to tell joe everything about cf. thanks a lot it, means so much to be able to talk to someone who is going through or already been through all this stuff!
 
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anonymous

New member
hi janet here . thank you to everyone who replied . i will think long and hard about when we decide to to tell joe everything about cf. thanks a lot it, means so much to be able to talk to someone who is going through or already been through all this stuff!
 
A

anonymous

New member
There was just an article in the local paper about an actor who was just diagnosed wcf at the age of 30 and how sad and depressed he was cuz "his life was pretty much over", cuz life expectancy is only 35 and he didn't have much longer to live. Some friends who read the article called me and said, hey, you should contact that guy and see if he wants to take part in the great strides walk this spring. But I was totally turned off by his pathetic poor me attituded, just wanted to hunt this guy down, slap him upside the head and say, suck it up princess. Geez! Some of us have had to deal with this disease and treatments since we were very very young.
 
A

anonymous

New member
There was just an article in the local paper about an actor who was just diagnosed wcf at the age of 30 and how sad and depressed he was cuz "his life was pretty much over", cuz life expectancy is only 35 and he didn't have much longer to live. Some friends who read the article called me and said, hey, you should contact that guy and see if he wants to take part in the great strides walk this spring. But I was totally turned off by his pathetic poor me attituded, just wanted to hunt this guy down, slap him upside the head and say, suck it up princess. Geez! Some of us have had to deal with this disease and treatments since we were very very young.
 
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