When did you talk CF w/your kids?

ehtansky21 · Nov 7, 2008

I really try to have Ethan Sky do some of his stuff in front of his cousins and friends. he gets to explain how his vest works, what his healthy juice is and how cool he is because he can swallow pills. we talk about how God made his tummy and lungs a little different and how he needs to do some extra things to make them work right. we talk about how things like salt are real good for him but not for everybody.
i have learned that all he really wants is a short simple answer to some of is questions. so i don't stress out too much when he asks stuff.
blessings,
missa

ehtansky21 · Nov 7, 2008

I really try to have Ethan Sky do some of his stuff in front of his cousins and friends. he gets to explain how his vest works, what his healthy juice is and how cool he is because he can swallow pills. we talk about how God made his tummy and lungs a little different and how he needs to do some extra things to make them work right. we talk about how things like salt are real good for him but not for everybody.
i have learned that all he really wants is a short simple answer to some of is questions. so i don't stress out too much when he asks stuff.
blessings,
missa

ehtansky21 · Nov 7, 2008

I really try to have Ethan Sky do some of his stuff in front of his cousins and friends. he gets to explain how his vest works, what his healthy juice is and how cool he is because he can swallow pills. we talk about how God made his tummy and lungs a little different and how he needs to do some extra things to make them work right. we talk about how things like salt are real good for him but not for everybody.
i have learned that all he really wants is a short simple answer to some of is questions. so i don't stress out too much when he asks stuff.
blessings,
missa

ehtansky21 · Nov 7, 2008

I really try to have Ethan Sky do some of his stuff in front of his cousins and friends. he gets to explain how his vest works, what his healthy juice is and how cool he is because he can swallow pills. we talk about how God made his tummy and lungs a little different and how he needs to do some extra things to make them work right. we talk about how things like salt are real good for him but not for everybody.
i have learned that all he really wants is a short simple answer to some of is questions. so i don't stress out too much when he asks stuff.
blessings,
missa

ehtansky21 · Nov 7, 2008

I really try to have Ethan Sky do some of his stuff in front of his cousins and friends. he gets to explain how his vest works, what his healthy juice is and how cool he is because he can swallow pills. we talk about how God made his tummy and lungs a little different and how he needs to do some extra things to make them work right. we talk about how things like salt are real good for him but not for everybody.
 i have learned that all he really wants is a short simple answer to some of is questions. so i don't stress out too much when he asks stuff.
 blessings,
 missa

sdelorenzo · Nov 7, 2008

I try to let my kids know about cf casually in conversation. On occasion, I speak at cf events about how cf has impacted our family. I make sure my kids are with me and they listen. . I don't want them to be scared one day when they hear something. I think they will learn soon enough from a friend or in a book that the life expectancy isn't good. I don't want that to be the first time that hear something like that. So I have mentioned that people with cf who do not do their treatments like they should or take their medicine do not live as long and often get a lot sicker than they would if they did their treatments. My kids ask questions and I just throw small things out there. I try to stay positive in the discussion and I always bring it back to how God's plan for all of us is perfect and none of us know when we will die. I want them to always to have kind of understood the seriousness of the disease. So far, they have no concerns or anxiety about cf and I hope that continues.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Nov 7, 2008

I try to let my kids know about cf casually in conversation. On occasion, I speak at cf events about how cf has impacted our family. I make sure my kids are with me and they listen. . I don't want them to be scared one day when they hear something. I think they will learn soon enough from a friend or in a book that the life expectancy isn't good. I don't want that to be the first time that hear something like that. So I have mentioned that people with cf who do not do their treatments like they should or take their medicine do not live as long and often get a lot sicker than they would if they did their treatments. My kids ask questions and I just throw small things out there. I try to stay positive in the discussion and I always bring it back to how God's plan for all of us is perfect and none of us know when we will die. I want them to always to have kind of understood the seriousness of the disease. So far, they have no concerns or anxiety about cf and I hope that continues.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Nov 7, 2008

I try to let my kids know about cf casually in conversation. On occasion, I speak at cf events about how cf has impacted our family. I make sure my kids are with me and they listen. . I don't want them to be scared one day when they hear something. I think they will learn soon enough from a friend or in a book that the life expectancy isn't good. I don't want that to be the first time that hear something like that. So I have mentioned that people with cf who do not do their treatments like they should or take their medicine do not live as long and often get a lot sicker than they would if they did their treatments. My kids ask questions and I just throw small things out there. I try to stay positive in the discussion and I always bring it back to how God's plan for all of us is perfect and none of us know when we will die. I want them to always to have kind of understood the seriousness of the disease. So far, they have no concerns or anxiety about cf and I hope that continues.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Nov 7, 2008

I try to let my kids know about cf casually in conversation. On occasion, I speak at cf events about how cf has impacted our family. I make sure my kids are with me and they listen. . I don't want them to be scared one day when they hear something. I think they will learn soon enough from a friend or in a book that the life expectancy isn't good. I don't want that to be the first time that hear something like that. So I have mentioned that people with cf who do not do their treatments like they should or take their medicine do not live as long and often get a lot sicker than they would if they did their treatments. My kids ask questions and I just throw small things out there. I try to stay positive in the discussion and I always bring it back to how God's plan for all of us is perfect and none of us know when we will die. I want them to always to have kind of understood the seriousness of the disease. So far, they have no concerns or anxiety about cf and I hope that continues.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Nov 7, 2008

I try to let my kids know about cf casually in conversation. On occasion, I speak at cf events about how cf has impacted our family. I make sure my kids are with me and they listen. . I don't want them to be scared one day when they hear something. I think they will learn soon enough from a friend or in a book that the life expectancy isn't good. I don't want that to be the first time that hear something like that. So I have mentioned that people with cf who do not do their treatments like they should or take their medicine do not live as long and often get a lot sicker than they would if they did their treatments. My kids ask questions and I just throw small things out there. I try to stay positive in the discussion and I always bring it back to how God's plan for all of us is perfect and none of us know when we will die. I want them to always to have kind of understood the seriousness of the disease. So far, they have no concerns or anxiety about cf and I hope that continues.
 Sharon, mom of Sophia, 7 and Jack, 5 both with cf

Transplantmommy · Nov 7, 2008

I don't remember if my Mom really had that "talk" with me. I was diagnosed when I was 6 months old and I think that right from the beginning, I knew that I was different. I was taking meds and my friends weren't, I would go into the hospital for a stay and my friends didn't. I don't remember exactly when I understood CF but I remember understanding it when I was 6 (turning 7) and was in the hospital on my b-day because of a bowel obstruction.

I would say to just make sure that he understands at least the basics like why he's taking the medications and his friends aren't. That's a good place to start.

Transplantmommy · Nov 7, 2008

I don't remember if my Mom really had that "talk" with me. I was diagnosed when I was 6 months old and I think that right from the beginning, I knew that I was different. I was taking meds and my friends weren't, I would go into the hospital for a stay and my friends didn't. I don't remember exactly when I understood CF but I remember understanding it when I was 6 (turning 7) and was in the hospital on my b-day because of a bowel obstruction.

I would say to just make sure that he understands at least the basics like why he's taking the medications and his friends aren't. That's a good place to start.

Transplantmommy · Nov 7, 2008

I don't remember if my Mom really had that "talk" with me. I was diagnosed when I was 6 months old and I think that right from the beginning, I knew that I was different. I was taking meds and my friends weren't, I would go into the hospital for a stay and my friends didn't. I don't remember exactly when I understood CF but I remember understanding it when I was 6 (turning 7) and was in the hospital on my b-day because of a bowel obstruction.

I would say to just make sure that he understands at least the basics like why he's taking the medications and his friends aren't. That's a good place to start.

Transplantmommy · Nov 7, 2008

I don't remember if my Mom really had that "talk" with me. I was diagnosed when I was 6 months old and I think that right from the beginning, I knew that I was different. I was taking meds and my friends weren't, I would go into the hospital for a stay and my friends didn't. I don't remember exactly when I understood CF but I remember understanding it when I was 6 (turning 7) and was in the hospital on my b-day because of a bowel obstruction.

I would say to just make sure that he understands at least the basics like why he's taking the medications and his friends aren't. That's a good place to start.

Transplantmommy · Nov 7, 2008

I don't remember if my Mom really had that "talk" with me. I was diagnosed when I was 6 months old and I think that right from the beginning, I knew that I was different. I was taking meds and my friends weren't, I would go into the hospital for a stay and my friends didn't. I don't remember exactly when I understood CF but I remember understanding it when I was 6 (turning 7) and was in the hospital on my b-day because of a bowel obstruction.
 
 I would say to just make sure that he understands at least the basics like why he's taking the medications and his friends aren't. That's a good place to start.

tammykrumrey · Nov 7, 2008

Ditto what has already been said. We have always discussed CF in front of our girls, the good (if any!) the bad and the ugly!

My nephew also has CF and he has had a lot more problems than my girls have ever had and they hear us talk about things that he is going through. For example, right now Dalton is in the hospital b/c he was couging up blood...my girls have never had that happen to them but they understand it is b/c of his CF. They understand that he was much more sick even as a child than what they are.

And like others have said, I am very active in raising money for the CFF and my girls have heard me give more speeches about CF than what I can count! The last time was just in September. They hear me give facts...and then I get asked questions when I get in the car<img src="i/expressions/face-icon-small-smile.gif" border="0"> When they ask me questions about the facts I give, like life expectancy, I use that time to explain why it is so important to be compliant with all the treatments so that they can surpass those numbers.

I have always just taken the questions as they come. And when they are young, simple answers do the trick! As my girls have gotten older, the questions become more specific. For example, Kayla (10 years old) asked me recently how I found out she had CF. She wanted to know all about it. And how long we have been seeing her CF dr. Stuff like that.

Good luck with your little one! I am sure he will quiz you time and time again over the years<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Nov 7, 2008

Ditto what has already been said. We have always discussed CF in front of our girls, the good (if any!) the bad and the ugly!

My nephew also has CF and he has had a lot more problems than my girls have ever had and they hear us talk about things that he is going through. For example, right now Dalton is in the hospital b/c he was couging up blood...my girls have never had that happen to them but they understand it is b/c of his CF. They understand that he was much more sick even as a child than what they are.

And like others have said, I am very active in raising money for the CFF and my girls have heard me give more speeches about CF than what I can count! The last time was just in September. They hear me give facts...and then I get asked questions when I get in the car<img src="i/expressions/face-icon-small-smile.gif" border="0"> When they ask me questions about the facts I give, like life expectancy, I use that time to explain why it is so important to be compliant with all the treatments so that they can surpass those numbers.

I have always just taken the questions as they come. And when they are young, simple answers do the trick! As my girls have gotten older, the questions become more specific. For example, Kayla (10 years old) asked me recently how I found out she had CF. She wanted to know all about it. And how long we have been seeing her CF dr. Stuff like that.

Good luck with your little one! I am sure he will quiz you time and time again over the years<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Nov 7, 2008

Ditto what has already been said. We have always discussed CF in front of our girls, the good (if any!) the bad and the ugly!

My nephew also has CF and he has had a lot more problems than my girls have ever had and they hear us talk about things that he is going through. For example, right now Dalton is in the hospital b/c he was couging up blood...my girls have never had that happen to them but they understand it is b/c of his CF. They understand that he was much more sick even as a child than what they are.

And like others have said, I am very active in raising money for the CFF and my girls have heard me give more speeches about CF than what I can count! The last time was just in September. They hear me give facts...and then I get asked questions when I get in the car<img src="i/expressions/face-icon-small-smile.gif" border="0"> When they ask me questions about the facts I give, like life expectancy, I use that time to explain why it is so important to be compliant with all the treatments so that they can surpass those numbers.

I have always just taken the questions as they come. And when they are young, simple answers do the trick! As my girls have gotten older, the questions become more specific. For example, Kayla (10 years old) asked me recently how I found out she had CF. She wanted to know all about it. And how long we have been seeing her CF dr. Stuff like that.

Good luck with your little one! I am sure he will quiz you time and time again over the years<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Nov 7, 2008

Ditto what has already been said. We have always discussed CF in front of our girls, the good (if any!) the bad and the ugly!

My nephew also has CF and he has had a lot more problems than my girls have ever had and they hear us talk about things that he is going through. For example, right now Dalton is in the hospital b/c he was couging up blood...my girls have never had that happen to them but they understand it is b/c of his CF. They understand that he was much more sick even as a child than what they are.

And like others have said, I am very active in raising money for the CFF and my girls have heard me give more speeches about CF than what I can count! The last time was just in September. They hear me give facts...and then I get asked questions when I get in the car<img src="i/expressions/face-icon-small-smile.gif" border="0"> When they ask me questions about the facts I give, like life expectancy, I use that time to explain why it is so important to be compliant with all the treatments so that they can surpass those numbers.

I have always just taken the questions as they come. And when they are young, simple answers do the trick! As my girls have gotten older, the questions become more specific. For example, Kayla (10 years old) asked me recently how I found out she had CF. She wanted to know all about it. And how long we have been seeing her CF dr. Stuff like that.

Good luck with your little one! I am sure he will quiz you time and time again over the years<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Nov 7, 2008

Ditto what has already been said. We have always discussed CF in front of our girls, the good (if any!) the bad and the ugly!
 
 My nephew also has CF and he has had a lot more problems than my girls have ever had and they hear us talk about things that he is going through. For example, right now Dalton is in the hospital b/c he was couging up blood...my girls have never had that happen to them but they understand it is b/c of his CF. They understand that he was much more sick even as a child than what they are.
 
 And like others have said, I am very active in raising money for the CFF and my girls have heard me give more speeches about CF than what I can count! The last time was just in September. They hear me give facts...and then I get asked questions when I get in the car<img src="i/expressions/face-icon-small-smile.gif" border="0"> When they ask me questions about the facts I give, like life expectancy, I use that time to explain why it is so important to be compliant with all the treatments so that they can surpass those numbers.
 
 I have always just taken the questions as they come. And when they are young, simple answers do the trick! As my girls have gotten older, the questions become more specific. For example, Kayla (10 years old) asked me recently how I found out she had CF. She wanted to know all about it. And how long we have been seeing her CF dr. Stuff like that.
 
 Good luck with your little one! I am sure he will quiz you time and time again over the years<img src="i/expressions/face-icon-small-smile.gif" border="0">

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