Need help overcoming guilt...

[AbbysMama]

Before I begin my (as my sister calls it) emotional vomit about this, I want you all to know that I want to do everything I can to help make CF a footnote in medical books just like smallpox and polio. But, I have a problem. This may be more rambling that you want to read...

My problem is that my child has no signs or symptoms of CF. She has a genetic diagnosis and isn't sick. As of right now she is healthier than my 3 year old was at this age. I've been made to feel bad that my child has a CF diagnosis and that we go to CF clinic appointments every 2-3 months and that we do the vest treatments and nebs twice a day when she isn't "sick."

I dread the day that she presents any signs or symptoms of CF. I dread the day when I have to look at her and say, "I'm so sorry, Daddy and I did everything we could to keep you healthy for as long as possible. I'm sorry we couldn't do more." But then I'm made to feel guilty that I may be banking on a future where she eventually gets sick instead of looking toward a future where she isn't.

I know that people won't understand why I want to stand tall for CF research when my child "isn't sick." How do you cope? Have any of you been through this? I'm so tired of explaining why we do what we do for her. I don't want to be made to feel that I am lying about her CF diagnosis (which I have been before...apparently I was seeking attention for myself). This has been so very hard for me as I search for CF awareness bracelets to wear and think of ways to support a Great Strides walk from over 1.5 hours away. I'm floundering emotionally about this.

I keep telling myself that I need to get over myself about it and just do it, but YOU ALL KNOW how perceptions are in families and with friends and with co-workers and with acquaintances. When I returned back to work, some of my co-workers were unable to grasp that Abby still has CF, but that we did not get hit with the symptoms yet. They were all glad that she "doesn't have it anymore."

I guess I just need some validation from folks who have children in worse shape than mine that I would be doing the RIGHT thing to get involved and that CF is CF regardless of how it is presenting itself in my child. I know it is silly to ask you to tell me what I really already know in my heart, but I just need to hear it from those in the trenches.

I would graciously accept any sage advice about handling those who find it "strange, odd, weird" that I am supporting a cause when my daughter "isn't sick." I truly think that is my biggest hang-up.

My DH and I support CF research already through donations to CFF and to our local clinic, but I want to do more on a larger scale and I'm rather paralyzed as to what to do and what direction to head in.

Thanks. Sorry for the uber long post.

Em

 

[AbbysMama]

Before I begin my (as my sister calls it) emotional vomit about this, I want you all to know that I want to do everything I can to help make CF a footnote in medical books just like smallpox and polio. But, I have a problem. This may be more rambling that you want to read...

My problem is that my child has no signs or symptoms of CF. She has a genetic diagnosis and isn't sick. As of right now she is healthier than my 3 year old was at this age. I've been made to feel bad that my child has a CF diagnosis and that we go to CF clinic appointments every 2-3 months and that we do the vest treatments and nebs twice a day when she isn't "sick."

I dread the day that she presents any signs or symptoms of CF. I dread the day when I have to look at her and say, "I'm so sorry, Daddy and I did everything we could to keep you healthy for as long as possible. I'm sorry we couldn't do more." But then I'm made to feel guilty that I may be banking on a future where she eventually gets sick instead of looking toward a future where she isn't.

I know that people won't understand why I want to stand tall for CF research when my child "isn't sick." How do you cope? Have any of you been through this? I'm so tired of explaining why we do what we do for her. I don't want to be made to feel that I am lying about her CF diagnosis (which I have been before...apparently I was seeking attention for myself). This has been so very hard for me as I search for CF awareness bracelets to wear and think of ways to support a Great Strides walk from over 1.5 hours away. I'm floundering emotionally about this.

I keep telling myself that I need to get over myself about it and just do it, but YOU ALL KNOW how perceptions are in families and with friends and with co-workers and with acquaintances. When I returned back to work, some of my co-workers were unable to grasp that Abby still has CF, but that we did not get hit with the symptoms yet. They were all glad that she "doesn't have it anymore."

I guess I just need some validation from folks who have children in worse shape than mine that I would be doing the RIGHT thing to get involved and that CF is CF regardless of how it is presenting itself in my child. I know it is silly to ask you to tell me what I really already know in my heart, but I just need to hear it from those in the trenches.

I would graciously accept any sage advice about handling those who find it "strange, odd, weird" that I am supporting a cause when my daughter "isn't sick." I truly think that is my biggest hang-up.

My DH and I support CF research already through donations to CFF and to our local clinic, but I want to do more on a larger scale and I'm rather paralyzed as to what to do and what direction to head in.

Thanks. Sorry for the uber long post.

Em

 

[AbbysMama]

Before I begin my (as my sister calls it) emotional vomit about this, I want you all to know that I want to do everything I can to help make CF a footnote in medical books just like smallpox and polio. But, I have a problem. This may be more rambling that you want to read...

My problem is that my child has no signs or symptoms of CF. She has a genetic diagnosis and isn't sick. As of right now she is healthier than my 3 year old was at this age. I've been made to feel bad that my child has a CF diagnosis and that we go to CF clinic appointments every 2-3 months and that we do the vest treatments and nebs twice a day when she isn't "sick."

I dread the day that she presents any signs or symptoms of CF. I dread the day when I have to look at her and say, "I'm so sorry, Daddy and I did everything we could to keep you healthy for as long as possible. I'm sorry we couldn't do more." But then I'm made to feel guilty that I may be banking on a future where she eventually gets sick instead of looking toward a future where she isn't.

I know that people won't understand why I want to stand tall for CF research when my child "isn't sick." How do you cope? Have any of you been through this? I'm so tired of explaining why we do what we do for her. I don't want to be made to feel that I am lying about her CF diagnosis (which I have been before...apparently I was seeking attention for myself). This has been so very hard for me as I search for CF awareness bracelets to wear and think of ways to support a Great Strides walk from over 1.5 hours away. I'm floundering emotionally about this.

I keep telling myself that I need to get over myself about it and just do it, but YOU ALL KNOW how perceptions are in families and with friends and with co-workers and with acquaintances. When I returned back to work, some of my co-workers were unable to grasp that Abby still has CF, but that we did not get hit with the symptoms yet. They were all glad that she "doesn't have it anymore."

I guess I just need some validation from folks who have children in worse shape than mine that I would be doing the RIGHT thing to get involved and that CF is CF regardless of how it is presenting itself in my child. I know it is silly to ask you to tell me what I really already know in my heart, but I just need to hear it from those in the trenches.

I would graciously accept any sage advice about handling those who find it "strange, odd, weird" that I am supporting a cause when my daughter "isn't sick." I truly think that is my biggest hang-up.

My DH and I support CF research already through donations to CFF and to our local clinic, but I want to do more on a larger scale and I'm rather paralyzed as to what to do and what direction to head in.

Thanks. Sorry for the uber long post.

Em

 

[AbbysMama]

Before I begin my (as my sister calls it) emotional vomit about this, I want you all to know that I want to do everything I can to help make CF a footnote in medical books just like smallpox and polio. But, I have a problem. This may be more rambling that you want to read...

My problem is that my child has no signs or symptoms of CF. She has a genetic diagnosis and isn't sick. As of right now she is healthier than my 3 year old was at this age. I've been made to feel bad that my child has a CF diagnosis and that we go to CF clinic appointments every 2-3 months and that we do the vest treatments and nebs twice a day when she isn't "sick."

I dread the day that she presents any signs or symptoms of CF. I dread the day when I have to look at her and say, "I'm so sorry, Daddy and I did everything we could to keep you healthy for as long as possible. I'm sorry we couldn't do more." But then I'm made to feel guilty that I may be banking on a future where she eventually gets sick instead of looking toward a future where she isn't.

I know that people won't understand why I want to stand tall for CF research when my child "isn't sick." How do you cope? Have any of you been through this? I'm so tired of explaining why we do what we do for her. I don't want to be made to feel that I am lying about her CF diagnosis (which I have been before...apparently I was seeking attention for myself). This has been so very hard for me as I search for CF awareness bracelets to wear and think of ways to support a Great Strides walk from over 1.5 hours away. I'm floundering emotionally about this.

I keep telling myself that I need to get over myself about it and just do it, but YOU ALL KNOW how perceptions are in families and with friends and with co-workers and with acquaintances. When I returned back to work, some of my co-workers were unable to grasp that Abby still has CF, but that we did not get hit with the symptoms yet. They were all glad that she "doesn't have it anymore."

I guess I just need some validation from folks who have children in worse shape than mine that I would be doing the RIGHT thing to get involved and that CF is CF regardless of how it is presenting itself in my child. I know it is silly to ask you to tell me what I really already know in my heart, but I just need to hear it from those in the trenches.

I would graciously accept any sage advice about handling those who find it "strange, odd, weird" that I am supporting a cause when my daughter "isn't sick." I truly think that is my biggest hang-up.

My DH and I support CF research already through donations to CFF and to our local clinic, but I want to do more on a larger scale and I'm rather paralyzed as to what to do and what direction to head in.

Thanks. Sorry for the uber long post.

Em

 

[AbbysMama]

Before I begin my (as my sister calls it) emotional vomit about this, I want you all to know that I want to do everything I can to help make CF a footnote in medical books just like smallpox and polio. But, I have a problem. This may be more rambling that you want to read...

My problem is that my child has no signs or symptoms of CF. She has a genetic diagnosis and isn't sick. As of right now she is healthier than my 3 year old was at this age. I've been made to feel bad that my child has a CF diagnosis and that we go to CF clinic appointments every 2-3 months and that we do the vest treatments and nebs twice a day when she isn't "sick."

I dread the day that she presents any signs or symptoms of CF. I dread the day when I have to look at her and say, "I'm so sorry, Daddy and I did everything we could to keep you healthy for as long as possible. I'm sorry we couldn't do more." But then I'm made to feel guilty that I may be banking on a future where she eventually gets sick instead of looking toward a future where she isn't.

I know that people won't understand why I want to stand tall for CF research when my child "isn't sick." How do you cope? Have any of you been through this? I'm so tired of explaining why we do what we do for her. I don't want to be made to feel that I am lying about her CF diagnosis (which I have been before...apparently I was seeking attention for myself). This has been so very hard for me as I search for CF awareness bracelets to wear and think of ways to support a Great Strides walk from over 1.5 hours away. I'm floundering emotionally about this.

I keep telling myself that I need to get over myself about it and just do it, but YOU ALL KNOW how perceptions are in families and with friends and with co-workers and with acquaintances. When I returned back to work, some of my co-workers were unable to grasp that Abby still has CF, but that we did not get hit with the symptoms yet. They were all glad that she "doesn't have it anymore."

I guess I just need some validation from folks who have children in worse shape than mine that I would be doing the RIGHT thing to get involved and that CF is CF regardless of how it is presenting itself in my child. I know it is silly to ask you to tell me what I really already know in my heart, but I just need to hear it from those in the trenches.

I would graciously accept any sage advice about handling those who find it "strange, odd, weird" that I am supporting a cause when my daughter "isn't sick." I truly think that is my biggest hang-up.

My DH and I support CF research already through donations to CFF and to our local clinic, but I want to do more on a larger scale and I'm rather paralyzed as to what to do and what direction to head in.

Thanks. Sorry for the uber long post.

Em

 

[Rebjane]

First of all; I think it's fabulous that your daughter is having good health. This is what we(parents of CF'ers and non-CF'ers) strive for. Do not feel guilty. CF is a chronic and progressive disease. Perhaps your daughter is able to maintain some of her CFTR function, perhaps it's her other genes ,non CF related, keeping her healthy. Use this opportunity to educate. CF does not "go away". If your Great Strides walk is 1 1/2 hours away, you could always organize a "mini-walk" for your daughters school.

CF affects the whole family in so many ways; worry, financial, stress, getting hit with a bad bacteria, could throw everything out of wack for a CF'er and fast.

My daughter has been on both side of the spectrum; her mutations are severe. She has had some really scary moments when I wasn't sure if she was going to make it. One surgeon told me my daugher is very resiliant. Right now we're "coasting along". Haven't been in for a hospital admission in 2 1/2 years. Some of is luck, most of it is vigilance in her CF care. It is exhausting but worth it. I can't sing the praises of Hypertonic saline enough. Yet another treatment funded by CF research. So, I need to start my annual fund-raising. Everytime lately, people say but Maggie is doing so well. I remind them of the 1 hour of VEST and 6 nebs a day that keep her well. The enzymes and vitamins. ETC, ETC.

Use our stories if you need to. We are on the cusp of something great in CF research. And yes I have lots of biase. My husband is a scientist; and expanding to start to research CF mutations and modifying genes. Perhaps, their are other genes unrelated to the CF mutation, that cause some CF'ers to do well and some not. Just what you are talking about<img src="i/expressions/face-icon-small-wink.gif" border="0">
Anyway I'm pretty passionate about this, for so many obvious reasons.

 

[Rebjane]

First of all; I think it's fabulous that your daughter is having good health. This is what we(parents of CF'ers and non-CF'ers) strive for. Do not feel guilty. CF is a chronic and progressive disease. Perhaps your daughter is able to maintain some of her CFTR function, perhaps it's her other genes ,non CF related, keeping her healthy. Use this opportunity to educate. CF does not "go away". If your Great Strides walk is 1 1/2 hours away, you could always organize a "mini-walk" for your daughters school.

CF affects the whole family in so many ways; worry, financial, stress, getting hit with a bad bacteria, could throw everything out of wack for a CF'er and fast.

My daughter has been on both side of the spectrum; her mutations are severe. She has had some really scary moments when I wasn't sure if she was going to make it. One surgeon told me my daugher is very resiliant. Right now we're "coasting along". Haven't been in for a hospital admission in 2 1/2 years. Some of is luck, most of it is vigilance in her CF care. It is exhausting but worth it. I can't sing the praises of Hypertonic saline enough. Yet another treatment funded by CF research. So, I need to start my annual fund-raising. Everytime lately, people say but Maggie is doing so well. I remind them of the 1 hour of VEST and 6 nebs a day that keep her well. The enzymes and vitamins. ETC, ETC.

Use our stories if you need to. We are on the cusp of something great in CF research. And yes I have lots of biase. My husband is a scientist; and expanding to start to research CF mutations and modifying genes. Perhaps, their are other genes unrelated to the CF mutation, that cause some CF'ers to do well and some not. Just what you are talking about<img src="i/expressions/face-icon-small-wink.gif" border="0">
Anyway I'm pretty passionate about this, for so many obvious reasons.

 

[Rebjane]

First of all; I think it's fabulous that your daughter is having good health. This is what we(parents of CF'ers and non-CF'ers) strive for. Do not feel guilty. CF is a chronic and progressive disease. Perhaps your daughter is able to maintain some of her CFTR function, perhaps it's her other genes ,non CF related, keeping her healthy. Use this opportunity to educate. CF does not "go away". If your Great Strides walk is 1 1/2 hours away, you could always organize a "mini-walk" for your daughters school.

CF affects the whole family in so many ways; worry, financial, stress, getting hit with a bad bacteria, could throw everything out of wack for a CF'er and fast.

My daughter has been on both side of the spectrum; her mutations are severe. She has had some really scary moments when I wasn't sure if she was going to make it. One surgeon told me my daugher is very resiliant. Right now we're "coasting along". Haven't been in for a hospital admission in 2 1/2 years. Some of is luck, most of it is vigilance in her CF care. It is exhausting but worth it. I can't sing the praises of Hypertonic saline enough. Yet another treatment funded by CF research. So, I need to start my annual fund-raising. Everytime lately, people say but Maggie is doing so well. I remind them of the 1 hour of VEST and 6 nebs a day that keep her well. The enzymes and vitamins. ETC, ETC.

Use our stories if you need to. We are on the cusp of something great in CF research. And yes I have lots of biase. My husband is a scientist; and expanding to start to research CF mutations and modifying genes. Perhaps, their are other genes unrelated to the CF mutation, that cause some CF'ers to do well and some not. Just what you are talking about<img src="i/expressions/face-icon-small-wink.gif" border="0">
Anyway I'm pretty passionate about this, for so many obvious reasons.

 

[Rebjane]

First of all; I think it's fabulous that your daughter is having good health. This is what we(parents of CF'ers and non-CF'ers) strive for. Do not feel guilty. CF is a chronic and progressive disease. Perhaps your daughter is able to maintain some of her CFTR function, perhaps it's her other genes ,non CF related, keeping her healthy. Use this opportunity to educate. CF does not "go away". If your Great Strides walk is 1 1/2 hours away, you could always organize a "mini-walk" for your daughters school.

CF affects the whole family in so many ways; worry, financial, stress, getting hit with a bad bacteria, could throw everything out of wack for a CF'er and fast.

My daughter has been on both side of the spectrum; her mutations are severe. She has had some really scary moments when I wasn't sure if she was going to make it. One surgeon told me my daugher is very resiliant. Right now we're "coasting along". Haven't been in for a hospital admission in 2 1/2 years. Some of is luck, most of it is vigilance in her CF care. It is exhausting but worth it. I can't sing the praises of Hypertonic saline enough. Yet another treatment funded by CF research. So, I need to start my annual fund-raising. Everytime lately, people say but Maggie is doing so well. I remind them of the 1 hour of VEST and 6 nebs a day that keep her well. The enzymes and vitamins. ETC, ETC.

Use our stories if you need to. We are on the cusp of something great in CF research. And yes I have lots of biase. My husband is a scientist; and expanding to start to research CF mutations and modifying genes. Perhaps, their are other genes unrelated to the CF mutation, that cause some CF'ers to do well and some not. Just what you are talking about<img src="i/expressions/face-icon-small-wink.gif" border="0">
Anyway I'm pretty passionate about this, for so many obvious reasons.

 

[Rebjane]

First of all; I think it's fabulous that your daughter is having good health. This is what we(parents of CF'ers and non-CF'ers) strive for. Do not feel guilty. CF is a chronic and progressive disease. Perhaps your daughter is able to maintain some of her CFTR function, perhaps it's her other genes ,non CF related, keeping her healthy. Use this opportunity to educate. CF does not "go away". If your Great Strides walk is 1 1/2 hours away, you could always organize a "mini-walk" for your daughters school.

CF affects the whole family in so many ways; worry, financial, stress, getting hit with a bad bacteria, could throw everything out of wack for a CF'er and fast.

My daughter has been on both side of the spectrum; her mutations are severe. She has had some really scary moments when I wasn't sure if she was going to make it. One surgeon told me my daugher is very resiliant. Right now we're "coasting along". Haven't been in for a hospital admission in 2 1/2 years. Some of is luck, most of it is vigilance in her CF care. It is exhausting but worth it. I can't sing the praises of Hypertonic saline enough. Yet another treatment funded by CF research. So, I need to start my annual fund-raising. Everytime lately, people say but Maggie is doing so well. I remind them of the 1 hour of VEST and 6 nebs a day that keep her well. The enzymes and vitamins. ETC, ETC.

Use our stories if you need to. We are on the cusp of something great in CF research. And yes I have lots of biase. My husband is a scientist; and expanding to start to research CF mutations and modifying genes. Perhaps, their are other genes unrelated to the CF mutation, that cause some CF'ers to do well and some not. Just what you are talking about<img src="i/expressions/face-icon-small-wink.gif" border="0">
Anyway I'm pretty passionate about this, for so many obvious reasons.

 

[NoExcuses]

Sorry to hear you're feeling like this.

I come from the school that CF is CF. It seems that there is a trend to categorizing "a-typical", etc. But I come from the camp that CF is CF.

So from MY point of view, you have every right to "own" CF as something you deal with. Ask some of the adults on this site how symptomless they were for YEARS and YEARS and now they struggle with the disease in a profound way.

But you know what? You still deal with the emotional horror that comes with this disease too - and for goodness sake you do all the treatments to prevent symptoms.

So in my book, you have every right to feel like you're in this fight as anyone else.

In terms of dealing with others who don't understand, I understand that. Education is the key here. I think many get upset that people don't automatically understand what CF is all about. I think the more productive way to go about it is to educate over and over and over again.

"Why are you doing all these treatments when your daughter is so healthy?" A great reply (which you probably do) is: "Oh this disease is all about offense." and try to think of an analogy that they can relate to. If they like football say "Kind of like in football. You can't win the game unless you're scoring points. Every time she does meds we score points in terms of preventing her symptoms." Or maybe they have insurance. "So it's like an insurance policy. We do this a few hours every day as insurance against a bit health disaster."

The problem is that most Americans don't practice preventative care for THEMSELVES, so it's really hard for them to relate to CF preventative care. People would rather be sedatary, eat like sh!t, and then get diabetes and treat their diabetes for the rest of their life instead of exercising and eating better to prevent diabetes.

But education with conviction and udnerstanding that you're doing an AMAZING job (many parents don't do what you do to help their kids....so I'm impressed) will be your key.

FIGHT ON!

 

[NoExcuses]

Sorry to hear you're feeling like this.

I come from the school that CF is CF. It seems that there is a trend to categorizing "a-typical", etc. But I come from the camp that CF is CF.

So from MY point of view, you have every right to "own" CF as something you deal with. Ask some of the adults on this site how symptomless they were for YEARS and YEARS and now they struggle with the disease in a profound way.

But you know what? You still deal with the emotional horror that comes with this disease too - and for goodness sake you do all the treatments to prevent symptoms.

So in my book, you have every right to feel like you're in this fight as anyone else.

In terms of dealing with others who don't understand, I understand that. Education is the key here. I think many get upset that people don't automatically understand what CF is all about. I think the more productive way to go about it is to educate over and over and over again.

"Why are you doing all these treatments when your daughter is so healthy?" A great reply (which you probably do) is: "Oh this disease is all about offense." and try to think of an analogy that they can relate to. If they like football say "Kind of like in football. You can't win the game unless you're scoring points. Every time she does meds we score points in terms of preventing her symptoms." Or maybe they have insurance. "So it's like an insurance policy. We do this a few hours every day as insurance against a bit health disaster."

The problem is that most Americans don't practice preventative care for THEMSELVES, so it's really hard for them to relate to CF preventative care. People would rather be sedatary, eat like sh!t, and then get diabetes and treat their diabetes for the rest of their life instead of exercising and eating better to prevent diabetes.

But education with conviction and udnerstanding that you're doing an AMAZING job (many parents don't do what you do to help their kids....so I'm impressed) will be your key.

FIGHT ON!

 

[NoExcuses]

Sorry to hear you're feeling like this.

I come from the school that CF is CF. It seems that there is a trend to categorizing "a-typical", etc. But I come from the camp that CF is CF.

So from MY point of view, you have every right to "own" CF as something you deal with. Ask some of the adults on this site how symptomless they were for YEARS and YEARS and now they struggle with the disease in a profound way.

But you know what? You still deal with the emotional horror that comes with this disease too - and for goodness sake you do all the treatments to prevent symptoms.

So in my book, you have every right to feel like you're in this fight as anyone else.

In terms of dealing with others who don't understand, I understand that. Education is the key here. I think many get upset that people don't automatically understand what CF is all about. I think the more productive way to go about it is to educate over and over and over again.

"Why are you doing all these treatments when your daughter is so healthy?" A great reply (which you probably do) is: "Oh this disease is all about offense." and try to think of an analogy that they can relate to. If they like football say "Kind of like in football. You can't win the game unless you're scoring points. Every time she does meds we score points in terms of preventing her symptoms." Or maybe they have insurance. "So it's like an insurance policy. We do this a few hours every day as insurance against a bit health disaster."

The problem is that most Americans don't practice preventative care for THEMSELVES, so it's really hard for them to relate to CF preventative care. People would rather be sedatary, eat like sh!t, and then get diabetes and treat their diabetes for the rest of their life instead of exercising and eating better to prevent diabetes.

But education with conviction and udnerstanding that you're doing an AMAZING job (many parents don't do what you do to help their kids....so I'm impressed) will be your key.

FIGHT ON!

 

[NoExcuses]

Sorry to hear you're feeling like this.

I come from the school that CF is CF. It seems that there is a trend to categorizing "a-typical", etc. But I come from the camp that CF is CF.

So from MY point of view, you have every right to "own" CF as something you deal with. Ask some of the adults on this site how symptomless they were for YEARS and YEARS and now they struggle with the disease in a profound way.

But you know what? You still deal with the emotional horror that comes with this disease too - and for goodness sake you do all the treatments to prevent symptoms.

So in my book, you have every right to feel like you're in this fight as anyone else.

In terms of dealing with others who don't understand, I understand that. Education is the key here. I think many get upset that people don't automatically understand what CF is all about. I think the more productive way to go about it is to educate over and over and over again.

"Why are you doing all these treatments when your daughter is so healthy?" A great reply (which you probably do) is: "Oh this disease is all about offense." and try to think of an analogy that they can relate to. If they like football say "Kind of like in football. You can't win the game unless you're scoring points. Every time she does meds we score points in terms of preventing her symptoms." Or maybe they have insurance. "So it's like an insurance policy. We do this a few hours every day as insurance against a bit health disaster."

The problem is that most Americans don't practice preventative care for THEMSELVES, so it's really hard for them to relate to CF preventative care. People would rather be sedatary, eat like sh!t, and then get diabetes and treat their diabetes for the rest of their life instead of exercising and eating better to prevent diabetes.

But education with conviction and udnerstanding that you're doing an AMAZING job (many parents don't do what you do to help their kids....so I'm impressed) will be your key.

FIGHT ON!

 

[NoExcuses]

Sorry to hear you're feeling like this.

I come from the school that CF is CF. It seems that there is a trend to categorizing "a-typical", etc. But I come from the camp that CF is CF.

So from MY point of view, you have every right to "own" CF as something you deal with. Ask some of the adults on this site how symptomless they were for YEARS and YEARS and now they struggle with the disease in a profound way.

But you know what? You still deal with the emotional horror that comes with this disease too - and for goodness sake you do all the treatments to prevent symptoms.

So in my book, you have every right to feel like you're in this fight as anyone else.

In terms of dealing with others who don't understand, I understand that. Education is the key here. I think many get upset that people don't automatically understand what CF is all about. I think the more productive way to go about it is to educate over and over and over again.

"Why are you doing all these treatments when your daughter is so healthy?" A great reply (which you probably do) is: "Oh this disease is all about offense." and try to think of an analogy that they can relate to. If they like football say "Kind of like in football. You can't win the game unless you're scoring points. Every time she does meds we score points in terms of preventing her symptoms." Or maybe they have insurance. "So it's like an insurance policy. We do this a few hours every day as insurance against a bit health disaster."

The problem is that most Americans don't practice preventative care for THEMSELVES, so it's really hard for them to relate to CF preventative care. People would rather be sedatary, eat like sh!t, and then get diabetes and treat their diabetes for the rest of their life instead of exercising and eating better to prevent diabetes.

But education with conviction and udnerstanding that you're doing an AMAZING job (many parents don't do what you do to help their kids....so I'm impressed) will be your key.

FIGHT ON!

 

[lflatford]

My wife and I looked at Avery having CF as "you play the hand your dealt". Now she is much like your child and has never really had too many issues with CF. For 2 and a half years CF had never really showed it's ugly head. Just three months ago we learned she had psuedo, well this is our first 3rd challenge. First challenge finding out she had CF at 18months, 2nd challenge was living with Avery having CF . We treat Avery like a she is training for later on in life when things may not be so easy for her, that is why we run a strict routine with her as well as let her be a kid. Keep up the good work, as well as get involved as much as possible.

 

[lflatford]

My wife and I looked at Avery having CF as "you play the hand your dealt". Now she is much like your child and has never really had too many issues with CF. For 2 and a half years CF had never really showed it's ugly head. Just three months ago we learned she had psuedo, well this is our first 3rd challenge. First challenge finding out she had CF at 18months, 2nd challenge was living with Avery having CF . We treat Avery like a she is training for later on in life when things may not be so easy for her, that is why we run a strict routine with her as well as let her be a kid. Keep up the good work, as well as get involved as much as possible.

 

[lflatford]

My wife and I looked at Avery having CF as "you play the hand your dealt". Now she is much like your child and has never really had too many issues with CF. For 2 and a half years CF had never really showed it's ugly head. Just three months ago we learned she had psuedo, well this is our first 3rd challenge. First challenge finding out she had CF at 18months, 2nd challenge was living with Avery having CF . We treat Avery like a she is training for later on in life when things may not be so easy for her, that is why we run a strict routine with her as well as let her be a kid. Keep up the good work, as well as get involved as much as possible.

 

[lflatford]

My wife and I looked at Avery having CF as "you play the hand your dealt". Now she is much like your child and has never really had too many issues with CF. For 2 and a half years CF had never really showed it's ugly head. Just three months ago we learned she had psuedo, well this is our first 3rd challenge. First challenge finding out she had CF at 18months, 2nd challenge was living with Avery having CF . We treat Avery like a she is training for later on in life when things may not be so easy for her, that is why we run a strict routine with her as well as let her be a kid. Keep up the good work, as well as get involved as much as possible.

 

[lflatford]

My wife and I looked at Avery having CF as "you play the hand your dealt". Now she is much like your child and has never really had too many issues with CF. For 2 and a half years CF had never really showed it's ugly head. Just three months ago we learned she had psuedo, well this is our first 3rd challenge. First challenge finding out she had CF at 18months, 2nd challenge was living with Avery having CF . We treat Avery like a she is training for later on in life when things may not be so easy for her, that is why we run a strict routine with her as well as let her be a kid. Keep up the good work, as well as get involved as much as possible.