When and how do I tell her?

J

Jane

Digital opinion leader
We have never discussed "the number" with our kids. I don't think its necessary to assign an expectancy. Instead we have always made a point of saying "you will stay healthier longer if you do your treatments/pt/nebs etc". When they were very sick last year, there were lots of opportunities to discuss longevity and consequences. They know it is serious, complicated and life threatening.

It would be heartbreaking for a parent to have to deliver news like this. It doesn't need to be done with a big announcement, but if you are honest and answer questions when they arise, the kids will do fine.

hugs to you
 
J

Jane

Digital opinion leader
We have never discussed "the number" with our kids. I don't think its necessary to assign an expectancy. Instead we have always made a point of saying "you will stay healthier longer if you do your treatments/pt/nebs etc". When they were very sick last year, there were lots of opportunities to discuss longevity and consequences. They know it is serious, complicated and life threatening.

It would be heartbreaking for a parent to have to deliver news like this. It doesn't need to be done with a big announcement, but if you are honest and answer questions when they arise, the kids will do fine.

hugs to you
 
J

Jane

Digital opinion leader
We have never discussed "the number" with our kids. I don't think its necessary to assign an expectancy. Instead we have always made a point of saying "you will stay healthier longer if you do your treatments/pt/nebs etc". When they were very sick last year, there were lots of opportunities to discuss longevity and consequences. They know it is serious, complicated and life threatening.

It would be heartbreaking for a parent to have to deliver news like this. It doesn't need to be done with a big announcement, but if you are honest and answer questions when they arise, the kids will do fine.

hugs to you
 
J

Jane

Digital opinion leader
We have never discussed "the number" with our kids. I don't think its necessary to assign an expectancy. Instead we have always made a point of saying "you will stay healthier longer if you do your treatments/pt/nebs etc". When they were very sick last year, there were lots of opportunities to discuss longevity and consequences. They know it is serious, complicated and life threatening.

It would be heartbreaking for a parent to have to deliver news like this. It doesn't need to be done with a big announcement, but if you are honest and answer questions when they arise, the kids will do fine.

hugs to you
 
J

Jane

Digital opinion leader
We have never discussed "the number" with our kids. I don't think its necessary to assign an expectancy. Instead we have always made a point of saying "you will stay healthier longer if you do your treatments/pt/nebs etc". When they were very sick last year, there were lots of opportunities to discuss longevity and consequences. They know it is serious, complicated and life threatening.

It would be heartbreaking for a parent to have to deliver news like this. It doesn't need to be done with a big announcement, but if you are honest and answer questions when they arise, the kids will do fine.

hugs to you
 
K

karismom

New member
<img src="i/expressions/heart.gif" border="0"> I agree w/ ALL of ya. I was trying to remember when my girls realized the whole truth.......cuz we never just sat them down and told them they would die earlier than alot of people. But I sympathize with you and your heartache that their "childhood innocence" so to speak (ah sweet bliss!) will never be the same after they find out the WHOLE story of having CF. BUT just keep the positive going such as there are some folks that have lived to be even as old as late 50's or so and that there are new treatments for it all the time. NONE of us know when we will die or how "old" we will be. Take care.

peace.

lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
<img src="i/expressions/heart.gif" border="0"> I agree w/ ALL of ya. I was trying to remember when my girls realized the whole truth.......cuz we never just sat them down and told them they would die earlier than alot of people. But I sympathize with you and your heartache that their "childhood innocence" so to speak (ah sweet bliss!) will never be the same after they find out the WHOLE story of having CF. BUT just keep the positive going such as there are some folks that have lived to be even as old as late 50's or so and that there are new treatments for it all the time. NONE of us know when we will die or how "old" we will be. Take care.

peace.

lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
<img src="i/expressions/heart.gif" border="0"> I agree w/ ALL of ya. I was trying to remember when my girls realized the whole truth.......cuz we never just sat them down and told them they would die earlier than alot of people. But I sympathize with you and your heartache that their "childhood innocence" so to speak (ah sweet bliss!) will never be the same after they find out the WHOLE story of having CF. BUT just keep the positive going such as there are some folks that have lived to be even as old as late 50's or so and that there are new treatments for it all the time. NONE of us know when we will die or how "old" we will be. Take care.

peace.

lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
<img src="i/expressions/heart.gif" border="0"> I agree w/ ALL of ya. I was trying to remember when my girls realized the whole truth.......cuz we never just sat them down and told them they would die earlier than alot of people. But I sympathize with you and your heartache that their "childhood innocence" so to speak (ah sweet bliss!) will never be the same after they find out the WHOLE story of having CF. BUT just keep the positive going such as there are some folks that have lived to be even as old as late 50's or so and that there are new treatments for it all the time. NONE of us know when we will die or how "old" we will be. Take care.

peace.

lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
<img src="i/expressions/heart.gif" border="0"> I agree w/ ALL of ya. I was trying to remember when my girls realized the whole truth.......cuz we never just sat them down and told them they would die earlier than alot of people. But I sympathize with you and your heartache that their "childhood innocence" so to speak (ah sweet bliss!) will never be the same after they find out the WHOLE story of having CF. BUT just keep the positive going such as there are some folks that have lived to be even as old as late 50's or so and that there are new treatments for it all the time. NONE of us know when we will die or how "old" we will be. Take care.

peace.

lisa <img src="i/expressions/rose.gif" border="0">
 
S

Seana30

New member
Courtney's situation is a little different because she was not diagnosed till she was 10 years old. She remembers the doctors coming into the room and giving us the news.

I think the biggest thing is HONESTY! Courtney knows all there is to know about CF. I encourage her to look things up when she has a question about her CF. She knows the "numbers" and all of the facts.

I think the most important thing we can do as parents is to show them they can still live a full life. I tell Courtney numbers mean nothing. You can live to be 100 and not live a full, happy, wonderful life.

I tell her not to let this disease stop her from doing ANYTHING she sets her mind to. Her plan right now is to become a pediatrician and she knows that although medical school might be more draining on her physically than a "normal" student she can still do it!

Hope this helps!

Seana
 
S

Seana30

New member
Courtney's situation is a little different because she was not diagnosed till she was 10 years old. She remembers the doctors coming into the room and giving us the news.

I think the biggest thing is HONESTY! Courtney knows all there is to know about CF. I encourage her to look things up when she has a question about her CF. She knows the "numbers" and all of the facts.

I think the most important thing we can do as parents is to show them they can still live a full life. I tell Courtney numbers mean nothing. You can live to be 100 and not live a full, happy, wonderful life.

I tell her not to let this disease stop her from doing ANYTHING she sets her mind to. Her plan right now is to become a pediatrician and she knows that although medical school might be more draining on her physically than a "normal" student she can still do it!

Hope this helps!

Seana
 
S

Seana30

New member
Courtney's situation is a little different because she was not diagnosed till she was 10 years old. She remembers the doctors coming into the room and giving us the news.

I think the biggest thing is HONESTY! Courtney knows all there is to know about CF. I encourage her to look things up when she has a question about her CF. She knows the "numbers" and all of the facts.

I think the most important thing we can do as parents is to show them they can still live a full life. I tell Courtney numbers mean nothing. You can live to be 100 and not live a full, happy, wonderful life.

I tell her not to let this disease stop her from doing ANYTHING she sets her mind to. Her plan right now is to become a pediatrician and she knows that although medical school might be more draining on her physically than a "normal" student she can still do it!

Hope this helps!

Seana
 
S

Seana30

New member
Courtney's situation is a little different because she was not diagnosed till she was 10 years old. She remembers the doctors coming into the room and giving us the news.

I think the biggest thing is HONESTY! Courtney knows all there is to know about CF. I encourage her to look things up when she has a question about her CF. She knows the "numbers" and all of the facts.

I think the most important thing we can do as parents is to show them they can still live a full life. I tell Courtney numbers mean nothing. You can live to be 100 and not live a full, happy, wonderful life.

I tell her not to let this disease stop her from doing ANYTHING she sets her mind to. Her plan right now is to become a pediatrician and she knows that although medical school might be more draining on her physically than a "normal" student she can still do it!

Hope this helps!

Seana
 
S

Seana30

New member
Courtney's situation is a little different because she was not diagnosed till she was 10 years old. She remembers the doctors coming into the room and giving us the news.

I think the biggest thing is HONESTY! Courtney knows all there is to know about CF. I encourage her to look things up when she has a question about her CF. She knows the "numbers" and all of the facts.

I think the most important thing we can do as parents is to show them they can still live a full life. I tell Courtney numbers mean nothing. You can live to be 100 and not live a full, happy, wonderful life.

I tell her not to let this disease stop her from doing ANYTHING she sets her mind to. Her plan right now is to become a pediatrician and she knows that although medical school might be more draining on her physically than a "normal" student she can still do it!

Hope this helps!

Seana
 
L

lightNlife

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

Instead we have always made a point of saying "you will stay healthier longer if you do your treatments/pt/nebs etc". When they were very sick last year, there were lots of opportunities to discuss longevity and consequences. They know it is serious, complicated and life threatening.
</end quote></div>

Quite right. The medications are there for a reason, and I have seen in my own life how wonderful the new treatments and drugs can improve my overall health. I'm somewhat envious of those CFers who have the option of all the preventive meds and therapies so early in life. I'm grateful that things like TOBI, Pulmozyme and the Vest are now standards in the CF world.

<div class="FTQUOTE"><begin quote><i>Originally posted by:<b>Seana30</b>
I tell her not to let this disease stop her from doing ANYTHING she sets her mind to.</i> </end quote></div>

I understand the point of view behind this statement, but I think it's better to teach a child with CF how to plan their life with CF in mind. CF <i>should</i> make a a reasonable person look at the possibilities in front of them and make wise choices. To give a pithy example...CAN a person with CF smoke? Sure. Should they smoke? Absolutely not.

Some choices are simply not healthy. For example, my husband and I volunteer in a variety of ways at church, but the nursery is not one of them. There's just too much potential for my own health to be compromised by being around children and the germs they so easily spread. By the same token, pediatric medicine is something I never would have pursued. No matter how noble the cause, I can't be a person of influence if I'm too sick to do anyone any good.

As to the numbers not meaning anything, well, to a certain point they do. If a person's FEV1 numbers are falling and they refuse to take appropriate action to preserve their health, then that's their own folly.

Encourage your children to explore their natural gifts and abilities. Have them learn to play a musical instrument that can improve their lung function. Tell them that CF presents a unique challenge, but it's one that can be overcome with a little determination and creative problem solving.
 
L

lightNlife

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

Instead we have always made a point of saying "you will stay healthier longer if you do your treatments/pt/nebs etc". When they were very sick last year, there were lots of opportunities to discuss longevity and consequences. They know it is serious, complicated and life threatening.
</end quote></div>

Quite right. The medications are there for a reason, and I have seen in my own life how wonderful the new treatments and drugs can improve my overall health. I'm somewhat envious of those CFers who have the option of all the preventive meds and therapies so early in life. I'm grateful that things like TOBI, Pulmozyme and the Vest are now standards in the CF world.

<div class="FTQUOTE"><begin quote><i>Originally posted by:<b>Seana30</b>
I tell her not to let this disease stop her from doing ANYTHING she sets her mind to.</i> </end quote></div>

I understand the point of view behind this statement, but I think it's better to teach a child with CF how to plan their life with CF in mind. CF <i>should</i> make a a reasonable person look at the possibilities in front of them and make wise choices. To give a pithy example...CAN a person with CF smoke? Sure. Should they smoke? Absolutely not.

Some choices are simply not healthy. For example, my husband and I volunteer in a variety of ways at church, but the nursery is not one of them. There's just too much potential for my own health to be compromised by being around children and the germs they so easily spread. By the same token, pediatric medicine is something I never would have pursued. No matter how noble the cause, I can't be a person of influence if I'm too sick to do anyone any good.

As to the numbers not meaning anything, well, to a certain point they do. If a person's FEV1 numbers are falling and they refuse to take appropriate action to preserve their health, then that's their own folly.

Encourage your children to explore their natural gifts and abilities. Have them learn to play a musical instrument that can improve their lung function. Tell them that CF presents a unique challenge, but it's one that can be overcome with a little determination and creative problem solving.
 
L

lightNlife

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

Instead we have always made a point of saying "you will stay healthier longer if you do your treatments/pt/nebs etc". When they were very sick last year, there were lots of opportunities to discuss longevity and consequences. They know it is serious, complicated and life threatening.
</end quote></div>

Quite right. The medications are there for a reason, and I have seen in my own life how wonderful the new treatments and drugs can improve my overall health. I'm somewhat envious of those CFers who have the option of all the preventive meds and therapies so early in life. I'm grateful that things like TOBI, Pulmozyme and the Vest are now standards in the CF world.

<div class="FTQUOTE"><begin quote><i>Originally posted by:<b>Seana30</b>
I tell her not to let this disease stop her from doing ANYTHING she sets her mind to.</i> </end quote></div>

I understand the point of view behind this statement, but I think it's better to teach a child with CF how to plan their life with CF in mind. CF <i>should</i> make a a reasonable person look at the possibilities in front of them and make wise choices. To give a pithy example...CAN a person with CF smoke? Sure. Should they smoke? Absolutely not.

Some choices are simply not healthy. For example, my husband and I volunteer in a variety of ways at church, but the nursery is not one of them. There's just too much potential for my own health to be compromised by being around children and the germs they so easily spread. By the same token, pediatric medicine is something I never would have pursued. No matter how noble the cause, I can't be a person of influence if I'm too sick to do anyone any good.

As to the numbers not meaning anything, well, to a certain point they do. If a person's FEV1 numbers are falling and they refuse to take appropriate action to preserve their health, then that's their own folly.

Encourage your children to explore their natural gifts and abilities. Have them learn to play a musical instrument that can improve their lung function. Tell them that CF presents a unique challenge, but it's one that can be overcome with a little determination and creative problem solving.
 
L

lightNlife

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

Instead we have always made a point of saying "you will stay healthier longer if you do your treatments/pt/nebs etc". When they were very sick last year, there were lots of opportunities to discuss longevity and consequences. They know it is serious, complicated and life threatening.
</end quote>

Quite right. The medications are there for a reason, and I have seen in my own life how wonderful the new treatments and drugs can improve my overall health. I'm somewhat envious of those CFers who have the option of all the preventive meds and therapies so early in life. I'm grateful that things like TOBI, Pulmozyme and the Vest are now standards in the CF world.

<div class="FTQUOTE"><begin quote><i>Originally posted by:<b>Seana30</b>
I tell her not to let this disease stop her from doing ANYTHING she sets her mind to.</i> </end quote>

I understand the point of view behind this statement, but I think it's better to teach a child with CF how to plan their life with CF in mind. CF <i>should</i> make a a reasonable person look at the possibilities in front of them and make wise choices. To give a pithy example...CAN a person with CF smoke? Sure. Should they smoke? Absolutely not.

Some choices are simply not healthy. For example, my husband and I volunteer in a variety of ways at church, but the nursery is not one of them. There's just too much potential for my own health to be compromised by being around children and the germs they so easily spread. By the same token, pediatric medicine is something I never would have pursued. No matter how noble the cause, I can't be a person of influence if I'm too sick to do anyone any good.

As to the numbers not meaning anything, well, to a certain point they do. If a person's FEV1 numbers are falling and they refuse to take appropriate action to preserve their health, then that's their own folly.

Encourage your children to explore their natural gifts and abilities. Have them learn to play a musical instrument that can improve their lung function. Tell them that CF presents a unique challenge, but it's one that can be overcome with a little determination and creative problem solving.
 
L

lightNlife

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

Instead we have always made a point of saying "you will stay healthier longer if you do your treatments/pt/nebs etc". When they were very sick last year, there were lots of opportunities to discuss longevity and consequences. They know it is serious, complicated and life threatening.
</end quote>

Quite right. The medications are there for a reason, and I have seen in my own life how wonderful the new treatments and drugs can improve my overall health. I'm somewhat envious of those CFers who have the option of all the preventive meds and therapies so early in life. I'm grateful that things like TOBI, Pulmozyme and the Vest are now standards in the CF world.

<div class="FTQUOTE"><begin quote><i>Originally posted by:<b>Seana30</b>
I tell her not to let this disease stop her from doing ANYTHING she sets her mind to.</i> </end quote>

I understand the point of view behind this statement, but I think it's better to teach a child with CF how to plan their life with CF in mind. CF <i>should</i> make a a reasonable person look at the possibilities in front of them and make wise choices. To give a pithy example...CAN a person with CF smoke? Sure. Should they smoke? Absolutely not.

Some choices are simply not healthy. For example, my husband and I volunteer in a variety of ways at church, but the nursery is not one of them. There's just too much potential for my own health to be compromised by being around children and the germs they so easily spread. By the same token, pediatric medicine is something I never would have pursued. No matter how noble the cause, I can't be a person of influence if I'm too sick to do anyone any good.

As to the numbers not meaning anything, well, to a certain point they do. If a person's FEV1 numbers are falling and they refuse to take appropriate action to preserve their health, then that's their own folly.

Encourage your children to explore their natural gifts and abilities. Have them learn to play a musical instrument that can improve their lung function. Tell them that CF presents a unique challenge, but it's one that can be overcome with a little determination and creative problem solving.
 
You must log in or register to reply here.
Top