why ??

[sue35]

Not to sound mean but I am a little worried about why these doctors are telling you that your children will have a normal life span. That it not true at this time. The life span has greatly improved but it still is only in the 30's. Yes, there is hope that someday there will be a cure but they are not even close to one yet. The fact is, most likely people won't live to a normal life span. Also, there are still children dying from this disease unfortunately.

I just wouldn't like it if my doctors made false promises like these. There is always hope but they should not say that it is definite.

 

[sue35]

Not to sound mean but I am a little worried about why these doctors are telling you that your children will have a normal life span. That it not true at this time. The life span has greatly improved but it still is only in the 30's. Yes, there is hope that someday there will be a cure but they are not even close to one yet. The fact is, most likely people won't live to a normal life span. Also, there are still children dying from this disease unfortunately.

I just wouldn't like it if my doctors made false promises like these. There is always hope but they should not say that it is definite.

 

[sue35]

Not to sound mean but I am a little worried about why these doctors are telling you that your children will have a normal life span. That it not true at this time. The life span has greatly improved but it still is only in the 30's. Yes, there is hope that someday there will be a cure but they are not even close to one yet. The fact is, most likely people won't live to a normal life span. Also, there are still children dying from this disease unfortunately.

I just wouldn't like it if my doctors made false promises like these. There is always hope but they should not say that it is definite.

 

[sue35]

Not to sound mean but I am a little worried about why these doctors are telling you that your children will have a normal life span. That it not true at this time. The life span has greatly improved but it still is only in the 30's. Yes, there is hope that someday there will be a cure but they are not even close to one yet. The fact is, most likely people won't live to a normal life span. Also, there are still children dying from this disease unfortunately.

I just wouldn't like it if my doctors made false promises like these. There is always hope but they should not say that it is definite.

 

[sue35]

Not to sound mean but I am a little worried about why these doctors are telling you that your children will have a normal life span. That it not true at this time. The life span has greatly improved but it still is only in the 30's. Yes, there is hope that someday there will be a cure but they are not even close to one yet. The fact is, most likely people won't live to a normal life span. Also, there are still children dying from this disease unfortunately.
<br />
<br />I just wouldn't like it if my doctors made false promises like these. There is always hope but they should not say that it is definite.

 

[kayleesgrandma]

Sue is right--the "average" lifespan is 30--but STILL HALF of all cfrs dont make it to there...I always ask, "which half is KAYLEE in?"

 

[kayleesgrandma]

Sue is right--the "average" lifespan is 30--but STILL HALF of all cfrs dont make it to there...I always ask, "which half is KAYLEE in?"

 

[kayleesgrandma]

Sue is right--the "average" lifespan is 30--but STILL HALF of all cfrs dont make it to there...I always ask, "which half is KAYLEE in?"

 

[kayleesgrandma]

Sue is right--the "average" lifespan is 30--but STILL HALF of all cfrs dont make it to there...I always ask, "which half is KAYLEE in?"

 

[kayleesgrandma]

Sue is right--the "average" lifespan is 30--but STILL HALF of all cfrs dont make it to there...I always ask, "which half is KAYLEE in?"

 

[coltsfan715]

First just wanted to say that the post you are referring too - at least I think you are referring too - was replied to by a CF mom NOT a CFer.

Secondly in regards to some people's opinions on the board I think that some CFers feel not that parents look at their children with rose colored glasses but that rather from our experience we have seen the good bad and ugly. Most of us grew up when having friends and hanging out with friends with CF wasn't so taboo. We saw our friends get sick and die pretty frequently so it can be frustrating or what have you when though all a parent is looking for is encouragement and for someone to say "it will be okay" all some of us may want to say is it might not be okay - from the sounds of it you have some major $#!t you are going to have to deal with but just do it. It has to be done and yeah it sucks but it is what it is.

You have to understand ALOT (NOT ALL) but alot of the opinions of adult CFers come from years of illness, hospital stays, medication, therapy and so on. We can be a bit jaded and a bit twisted - it is what it is. Parents and newly diagnosed people are not so in most cases. They haven't gotten to a point where they can look at something as say it happens - treat it take care of it or deal with it and mvoe past it. To alot of newly diagnosed people every first is a huge life ending ordeal. Not saying it shouldn't be just that it is and for most of us the "huge life ending ordeals" that "mother of a newly diagnosed patient" deals with are things we dealt with so long ago we can't remember how we felt about it if we wanted too.

There are different perspectives from everyone here but from the people I know and I know from myself that there are things that some people see as huge things (because they are new and somewhat scary situations) that I (we adult CFers) sometimes don't understand what the big deal is. Hope that makes sense.

It is what it is - as time passes most of the parents will cling to hope (as expected) that their child will be one of the "lucky few" and most of the CFers will become somewhat jaded though it may not be obvious they will age well beyond their years and all because of this disease. Not saying it happens to everyone just saying that this disease has a way of altering your perception of things.

Take Care,
Lindsey

 

[coltsfan715]

First just wanted to say that the post you are referring too - at least I think you are referring too - was replied to by a CF mom NOT a CFer.

Secondly in regards to some people's opinions on the board I think that some CFers feel not that parents look at their children with rose colored glasses but that rather from our experience we have seen the good bad and ugly. Most of us grew up when having friends and hanging out with friends with CF wasn't so taboo. We saw our friends get sick and die pretty frequently so it can be frustrating or what have you when though all a parent is looking for is encouragement and for someone to say "it will be okay" all some of us may want to say is it might not be okay - from the sounds of it you have some major $#!t you are going to have to deal with but just do it. It has to be done and yeah it sucks but it is what it is.

You have to understand ALOT (NOT ALL) but alot of the opinions of adult CFers come from years of illness, hospital stays, medication, therapy and so on. We can be a bit jaded and a bit twisted - it is what it is. Parents and newly diagnosed people are not so in most cases. They haven't gotten to a point where they can look at something as say it happens - treat it take care of it or deal with it and mvoe past it. To alot of newly diagnosed people every first is a huge life ending ordeal. Not saying it shouldn't be just that it is and for most of us the "huge life ending ordeals" that "mother of a newly diagnosed patient" deals with are things we dealt with so long ago we can't remember how we felt about it if we wanted too.

There are different perspectives from everyone here but from the people I know and I know from myself that there are things that some people see as huge things (because they are new and somewhat scary situations) that I (we adult CFers) sometimes don't understand what the big deal is. Hope that makes sense.

It is what it is - as time passes most of the parents will cling to hope (as expected) that their child will be one of the "lucky few" and most of the CFers will become somewhat jaded though it may not be obvious they will age well beyond their years and all because of this disease. Not saying it happens to everyone just saying that this disease has a way of altering your perception of things.

Take Care,
Lindsey

 

[coltsfan715]

First just wanted to say that the post you are referring too - at least I think you are referring too - was replied to by a CF mom NOT a CFer.

Secondly in regards to some people's opinions on the board I think that some CFers feel not that parents look at their children with rose colored glasses but that rather from our experience we have seen the good bad and ugly. Most of us grew up when having friends and hanging out with friends with CF wasn't so taboo. We saw our friends get sick and die pretty frequently so it can be frustrating or what have you when though all a parent is looking for is encouragement and for someone to say "it will be okay" all some of us may want to say is it might not be okay - from the sounds of it you have some major $#!t you are going to have to deal with but just do it. It has to be done and yeah it sucks but it is what it is.

You have to understand ALOT (NOT ALL) but alot of the opinions of adult CFers come from years of illness, hospital stays, medication, therapy and so on. We can be a bit jaded and a bit twisted - it is what it is. Parents and newly diagnosed people are not so in most cases. They haven't gotten to a point where they can look at something as say it happens - treat it take care of it or deal with it and mvoe past it. To alot of newly diagnosed people every first is a huge life ending ordeal. Not saying it shouldn't be just that it is and for most of us the "huge life ending ordeals" that "mother of a newly diagnosed patient" deals with are things we dealt with so long ago we can't remember how we felt about it if we wanted too.

There are different perspectives from everyone here but from the people I know and I know from myself that there are things that some people see as huge things (because they are new and somewhat scary situations) that I (we adult CFers) sometimes don't understand what the big deal is. Hope that makes sense.

It is what it is - as time passes most of the parents will cling to hope (as expected) that their child will be one of the "lucky few" and most of the CFers will become somewhat jaded though it may not be obvious they will age well beyond their years and all because of this disease. Not saying it happens to everyone just saying that this disease has a way of altering your perception of things.

Take Care,
Lindsey

 

[coltsfan715]

First just wanted to say that the post you are referring too - at least I think you are referring too - was replied to by a CF mom NOT a CFer.

Secondly in regards to some people's opinions on the board I think that some CFers feel not that parents look at their children with rose colored glasses but that rather from our experience we have seen the good bad and ugly. Most of us grew up when having friends and hanging out with friends with CF wasn't so taboo. We saw our friends get sick and die pretty frequently so it can be frustrating or what have you when though all a parent is looking for is encouragement and for someone to say "it will be okay" all some of us may want to say is it might not be okay - from the sounds of it you have some major $#!t you are going to have to deal with but just do it. It has to be done and yeah it sucks but it is what it is.

You have to understand ALOT (NOT ALL) but alot of the opinions of adult CFers come from years of illness, hospital stays, medication, therapy and so on. We can be a bit jaded and a bit twisted - it is what it is. Parents and newly diagnosed people are not so in most cases. They haven't gotten to a point where they can look at something as say it happens - treat it take care of it or deal with it and mvoe past it. To alot of newly diagnosed people every first is a huge life ending ordeal. Not saying it shouldn't be just that it is and for most of us the "huge life ending ordeals" that "mother of a newly diagnosed patient" deals with are things we dealt with so long ago we can't remember how we felt about it if we wanted too.

There are different perspectives from everyone here but from the people I know and I know from myself that there are things that some people see as huge things (because they are new and somewhat scary situations) that I (we adult CFers) sometimes don't understand what the big deal is. Hope that makes sense.

It is what it is - as time passes most of the parents will cling to hope (as expected) that their child will be one of the "lucky few" and most of the CFers will become somewhat jaded though it may not be obvious they will age well beyond their years and all because of this disease. Not saying it happens to everyone just saying that this disease has a way of altering your perception of things.

Take Care,
Lindsey

 

[coltsfan715]

First just wanted to say that the post you are referring too - at least I think you are referring too - was replied to by a CF mom NOT a CFer.
<br />
<br />Secondly in regards to some people's opinions on the board I think that some CFers feel not that parents look at their children with rose colored glasses but that rather from our experience we have seen the good bad and ugly. Most of us grew up when having friends and hanging out with friends with CF wasn't so taboo. We saw our friends get sick and die pretty frequently so it can be frustrating or what have you when though all a parent is looking for is encouragement and for someone to say "it will be okay" all some of us may want to say is it might not be okay - from the sounds of it you have some major $#!t you are going to have to deal with but just do it. It has to be done and yeah it sucks but it is what it is.
<br />
<br />You have to understand ALOT (NOT ALL) but alot of the opinions of adult CFers come from years of illness, hospital stays, medication, therapy and so on. We can be a bit jaded and a bit twisted - it is what it is. Parents and newly diagnosed people are not so in most cases. They haven't gotten to a point where they can look at something as say it happens - treat it take care of it or deal with it and mvoe past it. To alot of newly diagnosed people every first is a huge life ending ordeal. Not saying it shouldn't be just that it is and for most of us the "huge life ending ordeals" that "mother of a newly diagnosed patient" deals with are things we dealt with so long ago we can't remember how we felt about it if we wanted too.
<br />
<br />There are different perspectives from everyone here but from the people I know and I know from myself that there are things that some people see as huge things (because they are new and somewhat scary situations) that I (we adult CFers) sometimes don't understand what the big deal is. Hope that makes sense.
<br />
<br />It is what it is - as time passes most of the parents will cling to hope (as expected) that their child will be one of the "lucky few" and most of the CFers will become somewhat jaded though it may not be obvious they will age well beyond their years and all because of this disease. Not saying it happens to everyone just saying that this disease has a way of altering your perception of things.
<br />
<br />Take Care,
<br />Lindsey

 

[2005CFmom]

Necron, I don't know what threads you are talking about and hadn't noticed any of those recently.

But I know in the past some moms have basically told adult CFer's to keep their opinions to themselves because they are not parents and don't know how to parent a child with CF. Which I think is a ridiculous stance to take. I come here to learn, and who better to learn from than those who have gone through it!

But I think it is just information that the parent does not want to hear...they need to hear it, but don't like what they hear.

I don't know if that is what you are refering to, but I have noticed that in the past.

 

[2005CFmom]

Necron, I don't know what threads you are talking about and hadn't noticed any of those recently.

But I know in the past some moms have basically told adult CFer's to keep their opinions to themselves because they are not parents and don't know how to parent a child with CF. Which I think is a ridiculous stance to take. I come here to learn, and who better to learn from than those who have gone through it!

But I think it is just information that the parent does not want to hear...they need to hear it, but don't like what they hear.

I don't know if that is what you are refering to, but I have noticed that in the past.

 

[2005CFmom]

Necron, I don't know what threads you are talking about and hadn't noticed any of those recently.

But I know in the past some moms have basically told adult CFer's to keep their opinions to themselves because they are not parents and don't know how to parent a child with CF. Which I think is a ridiculous stance to take. I come here to learn, and who better to learn from than those who have gone through it!

But I think it is just information that the parent does not want to hear...they need to hear it, but don't like what they hear.

I don't know if that is what you are refering to, but I have noticed that in the past.

 

[2005CFmom]

Necron, I don't know what threads you are talking about and hadn't noticed any of those recently.

But I know in the past some moms have basically told adult CFer's to keep their opinions to themselves because they are not parents and don't know how to parent a child with CF. Which I think is a ridiculous stance to take. I come here to learn, and who better to learn from than those who have gone through it!

But I think it is just information that the parent does not want to hear...they need to hear it, but don't like what they hear.

I don't know if that is what you are refering to, but I have noticed that in the past.

 

[2005CFmom]

Necron, I don't know what threads you are talking about and hadn't noticed any of those recently.
<br />
<br />But I know in the past some moms have basically told adult CFer's to keep their opinions to themselves because they are not parents and don't know how to parent a child with CF. Which I think is a ridiculous stance to take. I come here to learn, and who better to learn from than those who have gone through it!
<br />
<br />But I think it is just information that the parent does not want to hear...they need to hear it, but don't like what they hear.
<br />
<br />I don't know if that is what you are refering to, but I have noticed that in the past.