A SENSITIVE ISSUE

[NoExcuses]

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


I have a couple of issues with the comments here. The ones who responded at this point are NOT parents of children with CF so they do not/ can not share in the heartache this parent feels.

.</end quote></div>

who the hell are you to say whether or not i am qualified to repond to a question?

anyone may respond to ANY question. at any time.

and if my mom posted, she would say the same thing that I did.

we all appreciate your efforts at being the posting police but you have failed miserably and you now must give up your badge and siren. nice havin' ya.

 

[anonymous]

Amy - You live a bit too much in the shadow of your mother...maybe time to get your own identity!

Yes, everyone is entitled to their own opionion, but more often than not, you are just plain rude!

 

[anonymous]

Amy - You live a bit too much in the shadow of your mother...maybe time to get your own identity!

Yes, everyone is entitled to their own opionion, but more often than not, you are just plain rude!

 

[anonymous]

Amy - You live a bit too much in the shadow of your mother...maybe time to get your own identity!

Yes, everyone is entitled to their own opionion, but more often than not, you are just plain rude!

 

[NoExcuses]

i am not living in anyone's shadow. but for whatever reason my opinions are invalidated by people who say "oh you don't have kids" or "oh you don't have a kid with CF."

the only reason i bring up my mother is because if my opinion is somehow invalid due to my lack of children, then my mother who does have a child with CF, has the same opinion.

people seem to feel that i have some opinion that no one else happens to have who happens to have a child. and I get private messages from people all the time who feel the same way i do - but just don't have the courage to post it.

maybe it's time for you to post under a user name instead of being a coward!

 

[NoExcuses]

i am not living in anyone's shadow. but for whatever reason my opinions are invalidated by people who say "oh you don't have kids" or "oh you don't have a kid with CF."

the only reason i bring up my mother is because if my opinion is somehow invalid due to my lack of children, then my mother who does have a child with CF, has the same opinion.

people seem to feel that i have some opinion that no one else happens to have who happens to have a child. and I get private messages from people all the time who feel the same way i do - but just don't have the courage to post it.

maybe it's time for you to post under a user name instead of being a coward!

 

[NoExcuses]

i am not living in anyone's shadow. but for whatever reason my opinions are invalidated by people who say "oh you don't have kids" or "oh you don't have a kid with CF."

the only reason i bring up my mother is because if my opinion is somehow invalid due to my lack of children, then my mother who does have a child with CF, has the same opinion.

people seem to feel that i have some opinion that no one else happens to have who happens to have a child. and I get private messages from people all the time who feel the same way i do - but just don't have the courage to post it.

maybe it's time for you to post under a user name instead of being a coward!

 

[JennifersHope]

I think it is rude and very inconsiderate for anyone to get on their soap box to preach about how wrong another parent is that innocently came on here looking for advice...

For the love of Pete.. not everyone can be as perfect as us... so we may need to be a little patient with them as they get up to our expectations....and do everything right darn it.....

I have to say, I think it depends on what end of the spectrum you are on, that is what belief you are going to have.. Allie who has been dealt a bad blow is going to be very matter of fact about what she thinks the facts are because that is what she has had to face in her life so why shouldn't everyone else have to deal with it, she has?

A parent who loves and adores their child isn't going to rush into telling their child the worst possible outcome, why should they?

I will tell you one thing.If my parents would have told me my life expectancy when I was a child... I would have thought they had Bipolar or were tricking me because every year that I got to the life expectancy it went up by a few years. (It reminds me of a toddler learning to walk the mother puts their arms out to get the child to walk to them and by the time they do, the mother backs up a few more steps..it is very confusing) I would have been wrecked as a child if I would have been told I had a terminal disease... I mean wrecked....

I don't have any kids, but I am of the strong belief that you should be open and honest with your kids, but I honestly believe that CF has come a long way and is still coming.. So I don't believe in telling a child any life expectancy what so ever, nor do I think that you should tell your child that they are going to die of CF... It is likely but not a fact.. I would just stick to the facts... and gosh if we make half as much progress as we did in the first half of my life... the age expectancy is going to be in the 60's or higher by the time I am in my late 40's..

I really like Seana's thought process in this whole thing... and think it is very healthy attitude.

 

[JennifersHope]

I think it is rude and very inconsiderate for anyone to get on their soap box to preach about how wrong another parent is that innocently came on here looking for advice...

For the love of Pete.. not everyone can be as perfect as us... so we may need to be a little patient with them as they get up to our expectations....and do everything right darn it.....

I have to say, I think it depends on what end of the spectrum you are on, that is what belief you are going to have.. Allie who has been dealt a bad blow is going to be very matter of fact about what she thinks the facts are because that is what she has had to face in her life so why shouldn't everyone else have to deal with it, she has?

A parent who loves and adores their child isn't going to rush into telling their child the worst possible outcome, why should they?

I will tell you one thing.If my parents would have told me my life expectancy when I was a child... I would have thought they had Bipolar or were tricking me because every year that I got to the life expectancy it went up by a few years. (It reminds me of a toddler learning to walk the mother puts their arms out to get the child to walk to them and by the time they do, the mother backs up a few more steps..it is very confusing) I would have been wrecked as a child if I would have been told I had a terminal disease... I mean wrecked....

I don't have any kids, but I am of the strong belief that you should be open and honest with your kids, but I honestly believe that CF has come a long way and is still coming.. So I don't believe in telling a child any life expectancy what so ever, nor do I think that you should tell your child that they are going to die of CF... It is likely but not a fact.. I would just stick to the facts... and gosh if we make half as much progress as we did in the first half of my life... the age expectancy is going to be in the 60's or higher by the time I am in my late 40's..

I really like Seana's thought process in this whole thing... and think it is very healthy attitude.

 

[JennifersHope]

I think it is rude and very inconsiderate for anyone to get on their soap box to preach about how wrong another parent is that innocently came on here looking for advice...

For the love of Pete.. not everyone can be as perfect as us... so we may need to be a little patient with them as they get up to our expectations....and do everything right darn it.....

I have to say, I think it depends on what end of the spectrum you are on, that is what belief you are going to have.. Allie who has been dealt a bad blow is going to be very matter of fact about what she thinks the facts are because that is what she has had to face in her life so why shouldn't everyone else have to deal with it, she has?

A parent who loves and adores their child isn't going to rush into telling their child the worst possible outcome, why should they?

I will tell you one thing.If my parents would have told me my life expectancy when I was a child... I would have thought they had Bipolar or were tricking me because every year that I got to the life expectancy it went up by a few years. (It reminds me of a toddler learning to walk the mother puts their arms out to get the child to walk to them and by the time they do, the mother backs up a few more steps..it is very confusing) I would have been wrecked as a child if I would have been told I had a terminal disease... I mean wrecked....

I don't have any kids, but I am of the strong belief that you should be open and honest with your kids, but I honestly believe that CF has come a long way and is still coming.. So I don't believe in telling a child any life expectancy what so ever, nor do I think that you should tell your child that they are going to die of CF... It is likely but not a fact.. I would just stick to the facts... and gosh if we make half as much progress as we did in the first half of my life... the age expectancy is going to be in the 60's or higher by the time I am in my late 40's..

I really like Seana's thought process in this whole thing... and think it is very healthy attitude.

 

[dyza]

hi yellowfrog,
our son was dx at 21 days, and our daughter, who is 13 years old, has known all about CF, except for the shortened life expetency bit. We probably thought or maybe hoped that she would pick this up herself, and so we kind of skirted around the issue.

We were still dealing with the dx also, but the time came 2 months ago when we sat her down and told her about the stark reality of CF, and she was really upset, not so much about what could happen, more upset that we had not told her in the first place, in fact she was really angry with us, teenagers eh!

 

[dyza]

hi yellowfrog,
our son was dx at 21 days, and our daughter, who is 13 years old, has known all about CF, except for the shortened life expetency bit. We probably thought or maybe hoped that she would pick this up herself, and so we kind of skirted around the issue.

We were still dealing with the dx also, but the time came 2 months ago when we sat her down and told her about the stark reality of CF, and she was really upset, not so much about what could happen, more upset that we had not told her in the first place, in fact she was really angry with us, teenagers eh!

 

[dyza]

hi yellowfrog,
our son was dx at 21 days, and our daughter, who is 13 years old, has known all about CF, except for the shortened life expetency bit. We probably thought or maybe hoped that she would pick this up herself, and so we kind of skirted around the issue.

We were still dealing with the dx also, but the time came 2 months ago when we sat her down and told her about the stark reality of CF, and she was really upset, not so much about what could happen, more upset that we had not told her in the first place, in fact she was really angry with us, teenagers eh!

 

[JazzysMom]

It was never really discussed as I was growing up yet I always knew. The worst thing that happened is when someone outside of the family said something to me & confirmed what was assumed. Even then I didnt live like I was dying. I lived like I had CF which was annoying as hell at times & no big deal others. I do think about it more now that I am a Mom, but not for my sake. I think of it for my daughters. I dont want her to have someone come up to her & say SO I HEAR YOUR MOM IS DYING. Yet I havent had the balls to address that part of CF with her. Contrary to the encouragement of Allie I havent gotten there yet! In retrospect I wish my parents would have been more open with ME about things. Actually discussed things etc instead of pretending & allowing me to do as I wished so I could live "normally" with the time I had.

 

[JazzysMom]

It was never really discussed as I was growing up yet I always knew. The worst thing that happened is when someone outside of the family said something to me & confirmed what was assumed. Even then I didnt live like I was dying. I lived like I had CF which was annoying as hell at times & no big deal others. I do think about it more now that I am a Mom, but not for my sake. I think of it for my daughters. I dont want her to have someone come up to her & say SO I HEAR YOUR MOM IS DYING. Yet I havent had the balls to address that part of CF with her. Contrary to the encouragement of Allie I havent gotten there yet! In retrospect I wish my parents would have been more open with ME about things. Actually discussed things etc instead of pretending & allowing me to do as I wished so I could live "normally" with the time I had.

 

[JazzysMom]

It was never really discussed as I was growing up yet I always knew. The worst thing that happened is when someone outside of the family said something to me & confirmed what was assumed. Even then I didnt live like I was dying. I lived like I had CF which was annoying as hell at times & no big deal others. I do think about it more now that I am a Mom, but not for my sake. I think of it for my daughters. I dont want her to have someone come up to her & say SO I HEAR YOUR MOM IS DYING. Yet I havent had the balls to address that part of CF with her. Contrary to the encouragement of Allie I havent gotten there yet! In retrospect I wish my parents would have been more open with ME about things. Actually discussed things etc instead of pretending & allowing me to do as I wished so I could live "normally" with the time I had.

 

[Jane]

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

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





I have a couple of issues with the comments here. The ones who responded at this point are NOT parents of children with CF so they do not/ can not share in the heartache this parent feels.



.</end quote></div>



who the hell are you to say whether or not i am qualified to repond to a question?



anyone may respond to ANY question. at any time.



and if my mom posted, she would say the same thing that I did.



we all appreciate your efforts at being the posting police but you have failed miserably and you now must give up your badge and siren. nice havin' ya.</end quote></div>


Amy, I did not say you are not qualified to respond. I was only pointing out that you are coming from a different perspective. People who don't have experience in a particular area, can't understand the situation to the same extent.

We are all welcome to respond to posts, if we weren't, it wouldn't be a forum.

I always try to respond with respect even when I disagree. I feel like I did that here as well. Your sarcasm is unnecessary and hurtful.

 

[Jane]

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

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





I have a couple of issues with the comments here. The ones who responded at this point are NOT parents of children with CF so they do not/ can not share in the heartache this parent feels.



.</end quote></div>



who the hell are you to say whether or not i am qualified to repond to a question?



anyone may respond to ANY question. at any time.



and if my mom posted, she would say the same thing that I did.



we all appreciate your efforts at being the posting police but you have failed miserably and you now must give up your badge and siren. nice havin' ya.</end quote></div>


Amy, I did not say you are not qualified to respond. I was only pointing out that you are coming from a different perspective. People who don't have experience in a particular area, can't understand the situation to the same extent.

We are all welcome to respond to posts, if we weren't, it wouldn't be a forum.

I always try to respond with respect even when I disagree. I feel like I did that here as well. Your sarcasm is unnecessary and hurtful.

 

[Jane]

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

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





I have a couple of issues with the comments here. The ones who responded at this point are NOT parents of children with CF so they do not/ can not share in the heartache this parent feels.



.</end quote></div>



who the hell are you to say whether or not i am qualified to repond to a question?



anyone may respond to ANY question. at any time.



and if my mom posted, she would say the same thing that I did.



we all appreciate your efforts at being the posting police but you have failed miserably and you now must give up your badge and siren. nice havin' ya.</end quote></div>


Amy, I did not say you are not qualified to respond. I was only pointing out that you are coming from a different perspective. People who don't have experience in a particular area, can't understand the situation to the same extent.

We are all welcome to respond to posts, if we weren't, it wouldn't be a forum.

I always try to respond with respect even when I disagree. I feel like I did that here as well. Your sarcasm is unnecessary and hurtful.

 

[NoExcuses]

Jane you misquoted me by stating I was scolding someone when i was expressing my reaction; told me its not up to me to give my input; and basically tried to marginalize my comments.

And no, you didn't say I was coming from a different perspective. you said "it wasn't up to [me] to scold anyone about their child-rearing choices."

Allie had the same reaction and you didn't say anything to her. Which makes me think that you simply wanted to single me out.

Children with CF have a great perspective on what it's like to have this disease. And we have insight into how our parents raised us. A parent would be WISE to not dismiss or try to marginalize a person with CF's perspective because we undersatnd what you're children are going through more than you ever will.