Mommy, why do I have CF?

Abby · Jul 29, 2008

Hello,

I should probably re-introduce myself. My name is Sherri and my soon to be 6-year old daughter, Abby has CF. I used to post on this board but it's been a few years. I've managed to lurk every once in a while and see how everybody is doing. Sad to see some people have passed on and glad to see MOST are doing well.

Anyway, the reason I decided to post tonight is that Abby finally hit me with one of the tough questions. She knows she has CF, it's never been a secret, but something we talk about openly. Usually she complains and we tell her it's something that can't be changed, lets do you meds/breathers and get on with life type things. She's asked some reasonably tough questions before like "how did I get cf", but never this. I wasn't sure how to answer it in a way she could understand. Here are the string of questions, the first I'm having a hard time answering. "Mommy, why do I have cf?" "Why don't my cousins have cf?" "When will I not have cf?"

I can explain the genetics to her, the simple part anyway, but the WHY is stumping me. I've come to my own understanding in the 5+ years we've been dealing with this but what do I tell her. My feelings are that she has it because she's meant to touch somebody. Maybe it's the person that will find the ultimate "Cure", maybe it's to teach my husband and I to appreciate each other, her and life more. Maybe take a little more time to smell the roses. It's made her a very strong person, would she be the person she is today without it? I think about all these things and know in my heart that we have been given this test for a reason. How do you explain this to a 6-year old?

Sorry it's so long.

Abby · Jul 29, 2008

Hello,

I should probably re-introduce myself. My name is Sherri and my soon to be 6-year old daughter, Abby has CF. I used to post on this board but it's been a few years. I've managed to lurk every once in a while and see how everybody is doing. Sad to see some people have passed on and glad to see MOST are doing well.

Anyway, the reason I decided to post tonight is that Abby finally hit me with one of the tough questions. She knows she has CF, it's never been a secret, but something we talk about openly. Usually she complains and we tell her it's something that can't be changed, lets do you meds/breathers and get on with life type things. She's asked some reasonably tough questions before like "how did I get cf", but never this. I wasn't sure how to answer it in a way she could understand. Here are the string of questions, the first I'm having a hard time answering. "Mommy, why do I have cf?" "Why don't my cousins have cf?" "When will I not have cf?"

I can explain the genetics to her, the simple part anyway, but the WHY is stumping me. I've come to my own understanding in the 5+ years we've been dealing with this but what do I tell her. My feelings are that she has it because she's meant to touch somebody. Maybe it's the person that will find the ultimate "Cure", maybe it's to teach my husband and I to appreciate each other, her and life more. Maybe take a little more time to smell the roses. It's made her a very strong person, would she be the person she is today without it? I think about all these things and know in my heart that we have been given this test for a reason. How do you explain this to a 6-year old?

Sorry it's so long.

Abby · Jul 29, 2008

Hello,

I should probably re-introduce myself. My name is Sherri and my soon to be 6-year old daughter, Abby has CF. I used to post on this board but it's been a few years. I've managed to lurk every once in a while and see how everybody is doing. Sad to see some people have passed on and glad to see MOST are doing well.

Anyway, the reason I decided to post tonight is that Abby finally hit me with one of the tough questions. She knows she has CF, it's never been a secret, but something we talk about openly. Usually she complains and we tell her it's something that can't be changed, lets do you meds/breathers and get on with life type things. She's asked some reasonably tough questions before like "how did I get cf", but never this. I wasn't sure how to answer it in a way she could understand. Here are the string of questions, the first I'm having a hard time answering. "Mommy, why do I have cf?" "Why don't my cousins have cf?" "When will I not have cf?"

I can explain the genetics to her, the simple part anyway, but the WHY is stumping me. I've come to my own understanding in the 5+ years we've been dealing with this but what do I tell her. My feelings are that she has it because she's meant to touch somebody. Maybe it's the person that will find the ultimate "Cure", maybe it's to teach my husband and I to appreciate each other, her and life more. Maybe take a little more time to smell the roses. It's made her a very strong person, would she be the person she is today without it? I think about all these things and know in my heart that we have been given this test for a reason. How do you explain this to a 6-year old?

Sorry it's so long.

Abby · Jul 29, 2008

Hello,

I should probably re-introduce myself. My name is Sherri and my soon to be 6-year old daughter, Abby has CF. I used to post on this board but it's been a few years. I've managed to lurk every once in a while and see how everybody is doing. Sad to see some people have passed on and glad to see MOST are doing well.

Anyway, the reason I decided to post tonight is that Abby finally hit me with one of the tough questions. She knows she has CF, it's never been a secret, but something we talk about openly. Usually she complains and we tell her it's something that can't be changed, lets do you meds/breathers and get on with life type things. She's asked some reasonably tough questions before like "how did I get cf", but never this. I wasn't sure how to answer it in a way she could understand. Here are the string of questions, the first I'm having a hard time answering. "Mommy, why do I have cf?" "Why don't my cousins have cf?" "When will I not have cf?"

I can explain the genetics to her, the simple part anyway, but the WHY is stumping me. I've come to my own understanding in the 5+ years we've been dealing with this but what do I tell her. My feelings are that she has it because she's meant to touch somebody. Maybe it's the person that will find the ultimate "Cure", maybe it's to teach my husband and I to appreciate each other, her and life more. Maybe take a little more time to smell the roses. It's made her a very strong person, would she be the person she is today without it? I think about all these things and know in my heart that we have been given this test for a reason. How do you explain this to a 6-year old?

Sorry it's so long.

Abby · Jul 29, 2008

Hello,
 
 I should probably re-introduce myself. My name is Sherri and my soon to be 6-year old daughter, Abby has CF. I used to post on this board but it's been a few years. I've managed to lurk every once in a while and see how everybody is doing. Sad to see some people have passed on and glad to see MOST are doing well.
 
 Anyway, the reason I decided to post tonight is that Abby finally hit me with one of the tough questions. She knows she has CF, it's never been a secret, but something we talk about openly. Usually she complains and we tell her it's something that can't be changed, lets do you meds/breathers and get on with life type things. She's asked some reasonably tough questions before like "how did I get cf", but never this. I wasn't sure how to answer it in a way she could understand. Here are the string of questions, the first I'm having a hard time answering. "Mommy, why do I have cf?" "Why don't my cousins have cf?" "When will I not have cf?"
 
 I can explain the genetics to her, the simple part anyway, but the WHY is stumping me. I've come to my own understanding in the 5+ years we've been dealing with this but what do I tell her. My feelings are that she has it because she's meant to touch somebody. Maybe it's the person that will find the ultimate "Cure", maybe it's to teach my husband and I to appreciate each other, her and life more. Maybe take a little more time to smell the roses. It's made her a very strong person, would she be the person she is today without it? I think about all these things and know in my heart that we have been given this test for a reason. How do you explain this to a 6-year old?
 
 Sorry it's so long.

welshwitch · Jul 29, 2008

eek. That's a tough one. I'm terrible with kids, but perhaps the perspective of a CF adult could shed some light on this so you could adjust this to her.

The way I think about it is, everyone has something. Like everyone has something in life that they don't like but that they have to deal with. CF is hers. Whereas the majority of my life has been pretty easy, this is my big challenge.

Here are some things NOT to say, things that my parents said to me, 'cause they only made me feel worse:

"I know it's not your favorite thing"

"Just think, this will make you more empathetic"

"Well, you have it, deal with it."

I'm sure you will handle this one better than my parents did....if only the internet was around 20+ years ago so they could've logged into a site like this <img src="i/expressions/face-icon-small-smile.gif" border="0">

welshwitch · Jul 29, 2008

eek. That's a tough one. I'm terrible with kids, but perhaps the perspective of a CF adult could shed some light on this so you could adjust this to her.

The way I think about it is, everyone has something. Like everyone has something in life that they don't like but that they have to deal with. CF is hers. Whereas the majority of my life has been pretty easy, this is my big challenge.

Here are some things NOT to say, things that my parents said to me, 'cause they only made me feel worse:

"I know it's not your favorite thing"

"Just think, this will make you more empathetic"

"Well, you have it, deal with it."

I'm sure you will handle this one better than my parents did....if only the internet was around 20+ years ago so they could've logged into a site like this <img src="i/expressions/face-icon-small-smile.gif" border="0">

welshwitch · Jul 29, 2008

eek. That's a tough one. I'm terrible with kids, but perhaps the perspective of a CF adult could shed some light on this so you could adjust this to her.

The way I think about it is, everyone has something. Like everyone has something in life that they don't like but that they have to deal with. CF is hers. Whereas the majority of my life has been pretty easy, this is my big challenge.

Here are some things NOT to say, things that my parents said to me, 'cause they only made me feel worse:

"I know it's not your favorite thing"

"Just think, this will make you more empathetic"

"Well, you have it, deal with it."

I'm sure you will handle this one better than my parents did....if only the internet was around 20+ years ago so they could've logged into a site like this <img src="i/expressions/face-icon-small-smile.gif" border="0">

welshwitch · Jul 29, 2008

eek. That's a tough one. I'm terrible with kids, but perhaps the perspective of a CF adult could shed some light on this so you could adjust this to her.

The way I think about it is, everyone has something. Like everyone has something in life that they don't like but that they have to deal with. CF is hers. Whereas the majority of my life has been pretty easy, this is my big challenge.

Here are some things NOT to say, things that my parents said to me, 'cause they only made me feel worse:

"I know it's not your favorite thing"

"Just think, this will make you more empathetic"

"Well, you have it, deal with it."

I'm sure you will handle this one better than my parents did....if only the internet was around 20+ years ago so they could've logged into a site like this <img src="i/expressions/face-icon-small-smile.gif" border="0">

welshwitch · Jul 29, 2008

eek. That's a tough one. I'm terrible with kids, but perhaps the perspective of a CF adult could shed some light on this so you could adjust this to her.
 
 The way I think about it is, everyone has something. Like everyone has something in life that they don't like but that they have to deal with. CF is hers. Whereas the majority of my life has been pretty easy, this is my big challenge.
 
 Here are some things NOT to say, things that my parents said to me, 'cause they only made me feel worse:
 
 "I know it's not your favorite thing"
 
 "Just think, this will make you more empathetic"
 
 "Well, you have it, deal with it."
 
 I'm sure you will handle this one better than my parents did....if only the internet was around 20+ years ago so they could've logged into a site like this <img src="i/expressions/face-icon-small-smile.gif" border="0">

welshwitch · Jul 29, 2008

Oh yeah, here's another idea: Show her videos of healthy and happy CF adults and give the message that CF doesn't have to define her....this one is great:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.jerrycahill.com/index.php?post_id=337651">http://www.jerrycahill.com/index.php?post_id=337651</a>

welshwitch · Jul 29, 2008

Oh yeah, here's another idea: Show her videos of healthy and happy CF adults and give the message that CF doesn't have to define her....this one is great:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.jerrycahill.com/index.php?post_id=337651">http://www.jerrycahill.com/index.php?post_id=337651</a>

welshwitch · Jul 29, 2008

Oh yeah, here's another idea: Show her videos of healthy and happy CF adults and give the message that CF doesn't have to define her....this one is great:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.jerrycahill.com/index.php?post_id=337651">http://www.jerrycahill.com/index.php?post_id=337651</a>

welshwitch · Jul 29, 2008

Oh yeah, here's another idea: Show her videos of healthy and happy CF adults and give the message that CF doesn't have to define her....this one is great:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.jerrycahill.com/index.php?post_id=337651">http://www.jerrycahill.com/index.php?post_id=337651</a>

welshwitch · Jul 29, 2008

Oh yeah, here's another idea: Show her videos of healthy and happy CF adults and give the message that CF doesn't have to define her....this one is great:
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.jerrycahill.com/index.php?post_id=337651">http://www.jerrycahill.com/index.php?post_id=337651</a>

tammykrumrey · Jul 29, 2008

Welcome back Sherri<img src="i/expressions/face-icon-small-smile.gif" border="0">

I know that this is a tough question to deal with. We, too, have had to answer these questions over the years...
Like Abby, Kayla and Hannah (who also have delF508 and 1898+1G>A by the way)have always known they and their cousin have CF. I just explained to them that they were made that way, just like brown or blond hair, blue or brown eyes, etc. They know of people who have diabetes, and understand that they were made that way, just like they were made with CF. When they were little, they would kind of forget that they asked me the question about why they had CF, and it may come up again a few months later, to which I would explain again to them that they were just made that way.

They went through a time when they would comment that when they grew up they wouldn't have CF anymore b/c mommy and daddy and g'pa and g'ma or any other adults that they knew, had CF. I would explain that they would still have CF and that all of us adults in their lives just weren't made with CF.

My family is very active in fund raising for the CFF, and the girls see me speak at events and they see me going to meetings for fund raisers, and I would explain to them that it was important for me to do these things so that maybe one day the doctors and scientist can find a way to make CF go away. They understand that I do many of the things that I do b/c one day I hope that they won't have to take enzymes or do their vests.

A few years ago, when Kayla was about 6 or 7, she and Hannah heard me speaking at an event. I figure she wasn't really paying much attention to me, but a that evening in the car, she started with a lot of questions about the things she heard me say. Like 'what did it mean when you said the life something was about 37 years old'. That pretty much stopped me in my tracks. But, I explained it as well as I could, letting them know that some people with CF are VERY sick, while others don't tend to have as many problems.

Last year Hannah asked me 'what does it mean that there is no cure'. To which I explained that it meant that CF cannot go away. I just happened to be driving the car and I could see her face in the rear view mirror just stare at her sister like 'did you know this?!'. She said, 'you mean I will have CF forever?' to which I said yes, unless the scientist find something to help, and that is why we do the fund raisers.'

Sorry this is so long, but I do understand how hard it is, but just take them as they come along.
Don't worry, you'll do great!

tammykrumrey · Jul 29, 2008

Welcome back Sherri<img src="i/expressions/face-icon-small-smile.gif" border="0">

I know that this is a tough question to deal with. We, too, have had to answer these questions over the years...
Like Abby, Kayla and Hannah (who also have delF508 and 1898+1G>A by the way)have always known they and their cousin have CF. I just explained to them that they were made that way, just like brown or blond hair, blue or brown eyes, etc. They know of people who have diabetes, and understand that they were made that way, just like they were made with CF. When they were little, they would kind of forget that they asked me the question about why they had CF, and it may come up again a few months later, to which I would explain again to them that they were just made that way.

They went through a time when they would comment that when they grew up they wouldn't have CF anymore b/c mommy and daddy and g'pa and g'ma or any other adults that they knew, had CF. I would explain that they would still have CF and that all of us adults in their lives just weren't made with CF.

My family is very active in fund raising for the CFF, and the girls see me speak at events and they see me going to meetings for fund raisers, and I would explain to them that it was important for me to do these things so that maybe one day the doctors and scientist can find a way to make CF go away. They understand that I do many of the things that I do b/c one day I hope that they won't have to take enzymes or do their vests.

A few years ago, when Kayla was about 6 or 7, she and Hannah heard me speaking at an event. I figure she wasn't really paying much attention to me, but a that evening in the car, she started with a lot of questions about the things she heard me say. Like 'what did it mean when you said the life something was about 37 years old'. That pretty much stopped me in my tracks. But, I explained it as well as I could, letting them know that some people with CF are VERY sick, while others don't tend to have as many problems.

Last year Hannah asked me 'what does it mean that there is no cure'. To which I explained that it meant that CF cannot go away. I just happened to be driving the car and I could see her face in the rear view mirror just stare at her sister like 'did you know this?!'. She said, 'you mean I will have CF forever?' to which I said yes, unless the scientist find something to help, and that is why we do the fund raisers.'

Sorry this is so long, but I do understand how hard it is, but just take them as they come along.
Don't worry, you'll do great!

tammykrumrey · Jul 29, 2008

Welcome back Sherri<img src="i/expressions/face-icon-small-smile.gif" border="0">

I know that this is a tough question to deal with. We, too, have had to answer these questions over the years...
Like Abby, Kayla and Hannah (who also have delF508 and 1898+1G>A by the way)have always known they and their cousin have CF. I just explained to them that they were made that way, just like brown or blond hair, blue or brown eyes, etc. They know of people who have diabetes, and understand that they were made that way, just like they were made with CF. When they were little, they would kind of forget that they asked me the question about why they had CF, and it may come up again a few months later, to which I would explain again to them that they were just made that way.

They went through a time when they would comment that when they grew up they wouldn't have CF anymore b/c mommy and daddy and g'pa and g'ma or any other adults that they knew, had CF. I would explain that they would still have CF and that all of us adults in their lives just weren't made with CF.

My family is very active in fund raising for the CFF, and the girls see me speak at events and they see me going to meetings for fund raisers, and I would explain to them that it was important for me to do these things so that maybe one day the doctors and scientist can find a way to make CF go away. They understand that I do many of the things that I do b/c one day I hope that they won't have to take enzymes or do their vests.

A few years ago, when Kayla was about 6 or 7, she and Hannah heard me speaking at an event. I figure she wasn't really paying much attention to me, but a that evening in the car, she started with a lot of questions about the things she heard me say. Like 'what did it mean when you said the life something was about 37 years old'. That pretty much stopped me in my tracks. But, I explained it as well as I could, letting them know that some people with CF are VERY sick, while others don't tend to have as many problems.

Last year Hannah asked me 'what does it mean that there is no cure'. To which I explained that it meant that CF cannot go away. I just happened to be driving the car and I could see her face in the rear view mirror just stare at her sister like 'did you know this?!'. She said, 'you mean I will have CF forever?' to which I said yes, unless the scientist find something to help, and that is why we do the fund raisers.'

Sorry this is so long, but I do understand how hard it is, but just take them as they come along.
Don't worry, you'll do great!

tammykrumrey · Jul 29, 2008

Welcome back Sherri<img src="i/expressions/face-icon-small-smile.gif" border="0">

I know that this is a tough question to deal with. We, too, have had to answer these questions over the years...
Like Abby, Kayla and Hannah (who also have delF508 and 1898+1G>A by the way)have always known they and their cousin have CF. I just explained to them that they were made that way, just like brown or blond hair, blue or brown eyes, etc. They know of people who have diabetes, and understand that they were made that way, just like they were made with CF. When they were little, they would kind of forget that they asked me the question about why they had CF, and it may come up again a few months later, to which I would explain again to them that they were just made that way.

They went through a time when they would comment that when they grew up they wouldn't have CF anymore b/c mommy and daddy and g'pa and g'ma or any other adults that they knew, had CF. I would explain that they would still have CF and that all of us adults in their lives just weren't made with CF.

My family is very active in fund raising for the CFF, and the girls see me speak at events and they see me going to meetings for fund raisers, and I would explain to them that it was important for me to do these things so that maybe one day the doctors and scientist can find a way to make CF go away. They understand that I do many of the things that I do b/c one day I hope that they won't have to take enzymes or do their vests.

A few years ago, when Kayla was about 6 or 7, she and Hannah heard me speaking at an event. I figure she wasn't really paying much attention to me, but a that evening in the car, she started with a lot of questions about the things she heard me say. Like 'what did it mean when you said the life something was about 37 years old'. That pretty much stopped me in my tracks. But, I explained it as well as I could, letting them know that some people with CF are VERY sick, while others don't tend to have as many problems.

Last year Hannah asked me 'what does it mean that there is no cure'. To which I explained that it meant that CF cannot go away. I just happened to be driving the car and I could see her face in the rear view mirror just stare at her sister like 'did you know this?!'. She said, 'you mean I will have CF forever?' to which I said yes, unless the scientist find something to help, and that is why we do the fund raisers.'

Sorry this is so long, but I do understand how hard it is, but just take them as they come along.
Don't worry, you'll do great!

tammykrumrey · Jul 29, 2008

Welcome back Sherri<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 I know that this is a tough question to deal with. We, too, have had to answer these questions over the years...
 Like Abby, Kayla and Hannah (who also have delF508 and 1898+1G>A by the way)have always known they and their cousin have CF. I just explained to them that they were made that way, just like brown or blond hair, blue or brown eyes, etc. They know of people who have diabetes, and understand that they were made that way, just like they were made with CF. When they were little, they would kind of forget that they asked me the question about why they had CF, and it may come up again a few months later, to which I would explain again to them that they were just made that way.
 
 They went through a time when they would comment that when they grew up they wouldn't have CF anymore b/c mommy and daddy and g'pa and g'ma or any other adults that they knew, had CF. I would explain that they would still have CF and that all of us adults in their lives just weren't made with CF.
 
 My family is very active in fund raising for the CFF, and the girls see me speak at events and they see me going to meetings for fund raisers, and I would explain to them that it was important for me to do these things so that maybe one day the doctors and scientist can find a way to make CF go away. They understand that I do many of the things that I do b/c one day I hope that they won't have to take enzymes or do their vests.
 
 A few years ago, when Kayla was about 6 or 7, she and Hannah heard me speaking at an event. I figure she wasn't really paying much attention to me, but a that evening in the car, she started with a lot of questions about the things she heard me say. Like 'what did it mean when you said the life something was about 37 years old'. That pretty much stopped me in my tracks. But, I explained it as well as I could, letting them know that some people with CF are VERY sick, while others don't tend to have as many problems.
 
 Last year Hannah asked me 'what does it mean that there is no cure'. To which I explained that it meant that CF cannot go away. I just happened to be driving the car and I could see her face in the rear view mirror just stare at her sister like 'did you know this?!'. She said, 'you mean I will have CF forever?' to which I said yes, unless the scientist find something to help, and that is why we do the fund raisers.'
 
 Sorry this is so long, but I do understand how hard it is, but just take them as they come along.
 Don't worry, you'll do great!

Mommy, why do I have CF?

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