A SENSITIVE ISSUE

[skh]

As a mother to a daughter with CF I have to say that kids are a lot smarter than you think. Every person is different and as a parent I believe I know how much my child can handle and when. I have a very open relationship with my daughter but I have let her set the pace as far as discussing her cf. This works for us, it may not work for everyone. I most definitely do not want her main focus to be on death and dying. I don't think that is healthy for anyone. We all know that we are going to die - none of us know when.

My advice to the parent who started this thread is to go with your gut instinct. You know your child better than we do. It's always good to be honest and it is up to you if you present it to her as the glass is half empty or half full. I believe my discussions on cf with my daughter are some of the hardest I will ever have. You can PM me anytime if that would help.

 

[skh]

As a mother to a daughter with CF I have to say that kids are a lot smarter than you think. Every person is different and as a parent I believe I know how much my child can handle and when. I have a very open relationship with my daughter but I have let her set the pace as far as discussing her cf. This works for us, it may not work for everyone. I most definitely do not want her main focus to be on death and dying. I don't think that is healthy for anyone. We all know that we are going to die - none of us know when.

My advice to the parent who started this thread is to go with your gut instinct. You know your child better than we do. It's always good to be honest and it is up to you if you present it to her as the glass is half empty or half full. I believe my discussions on cf with my daughter are some of the hardest I will ever have. You can PM me anytime if that would help.

 

[skh]

As a mother to a daughter with CF I have to say that kids are a lot smarter than you think. Every person is different and as a parent I believe I know how much my child can handle and when. I have a very open relationship with my daughter but I have let her set the pace as far as discussing her cf. This works for us, it may not work for everyone. I most definitely do not want her main focus to be on death and dying. I don't think that is healthy for anyone. We all know that we are going to die - none of us know when.

My advice to the parent who started this thread is to go with your gut instinct. You know your child better than we do. It's always good to be honest and it is up to you if you present it to her as the glass is half empty or half full. I believe my discussions on cf with my daughter are some of the hardest I will ever have. You can PM me anytime if that would help.

 

[yellowfrog]

thankyou for your replies i found them very useful, except the 2nd
one which i just found upsetting. i did stress it was a delicate
and sensitive issue, i do everything i can to make sure my daughter
enjoys a fun life (while being responsible) however the positive
replies were brilliant and like any good advice i will take a
little bit of each and create my own strategy  it gives me
great hope to see older cfers the average age in ireland is not
quite so high so obviously this, as a mother, is something that
lurks in the back of my mind. this is a great resource and i thank
you all  <img src="i/expressions/heart.gif" border="0">

 

[yellowfrog]

thankyou for your replies i found them very useful, except the 2nd
one which i just found upsetting. i did stress it was a delicate
and sensitive issue, i do everything i can to make sure my daughter
enjoys a fun life (while being responsible) however the positive
replies were brilliant and like any good advice i will take a
little bit of each and create my own strategy  it gives me
great hope to see older cfers the average age in ireland is not
quite so high so obviously this, as a mother, is something that
lurks in the back of my mind. this is a great resource and i thank
you all  <img src="i/expressions/heart.gif" border="0">

 

[yellowfrog]

thankyou for your replies i found them very useful, except the 2nd
one which i just found upsetting. i did stress it was a delicate
and sensitive issue, i do everything i can to make sure my daughter
enjoys a fun life (while being responsible) however the positive
replies were brilliant and like any good advice i will take a
little bit of each and create my own strategy  it gives me
great hope to see older cfers the average age in ireland is not
quite so high so obviously this, as a mother, is something that
lurks in the back of my mind. this is a great resource and i thank
you all  <img src="i/expressions/heart.gif" border="0">

 

[yellowfrog]

thankyou for your replies i found them very useful, except the 2nd
one which i just found upsetting. i did stress it was a delicate
and sensitive issue, i do everything i can to make sure my daughter
enjoys a fun life (while being responsible) however the positive
replies were brilliant and like any good advice i will take a
little bit of each and create my own strategy  it gives me
great hope to see older cfers the average age in ireland is not
quite so high so obviously this, as a mother, is something that
lurks in the back of my mind. this is a great resource and i thank
you all  <img src="i/expressions/heart.gif" border="0">

 

[yellowfrog]

thankyou for your replies i found them very useful, except the 2nd
one which i just found upsetting. i did stress it was a delicate
and sensitive issue, i do everything i can to make sure my daughter
enjoys a fun life (while being responsible) however the positive
replies were brilliant and like any good advice i will take a
little bit of each and create my own strategy  it gives me
great hope to see older cfers the average age in ireland is not
quite so high so obviously this, as a mother, is something that
lurks in the back of my mind. this is a great resource and i thank
you all  <img src="i/expressions/heart.gif" border="0">

 

[yellowfrog]

thankyou for your replies i found them very useful, except the 2nd
one which i just found upsetting. i did stress it was a delicate
and sensitive issue, i do everything i can to make sure my daughter
enjoys a fun life (while being responsible) however the positive
replies were brilliant and like any good advice i will take a
little bit of each and create my own strategy  it gives me
great hope to see older cfers the average age in ireland is not
quite so high so obviously this, as a mother, is something that
lurks in the back of my mind. this is a great resource and i thank
you all  <img src="i/expressions/heart.gif" border="0">

 

[littledebbie]

Hi, I haven't read all the responses so if this has already been
said i am sorry to be repetitive. <br>
I can't remember not knowing.  Yet, my parents and I didn't
really "talk" about it until I was maybe 16 or so.
 They knew I knew by small comments here or there etc.
 And yes of course the out of date text books which we always
discussed.  And because we talked about not sitting around and
waiting to die as a lifestyle choice <img src="i/expressions/face-icon-small-wink.gif" border="0">  But other than that I
don't think it was on my mind much before 16 or so.  And then
I only started doing the reality check thing because as other kids
started talking about their futures college, marriage etc.  I
was a  bit frustrated because all of those decisions for
myself had to somewhat revolve around my health (can't I get a
"UNFAIR" from the choir?).<br>
<br>
Anyway, all I'm saying is she just might not feel like talking
about it.  truthfully it may seem like a long way out there to
her and not worth worrying about yet.  She's a kid.  My
guess her brain is busy with, friends, boys and homework.
 When your 13, 17 seems like a long ways away.  <br>
<br>
I would maybe bring up some topics that might get a little
conversation going.  That's not directly about her.
 Maybe some new CF treatments or maybe some people you know on
here, that you could discuss how they're doing.  You could
feel her out to see what she maybe has a grasp of and what she
doesn't.  My guess is she knows.<br>
<br>
If she doesn't.......yah, I have to say I would tell her.
 Maybe you could talk to a professional for advice on how to.
 I myself am a big fan of having talks like that where you
don't actually have to look at each other, like in the car.
 That way if you cry it's not like someone is staring at you
while you do it <img src="i/expressions/face-icon-small-smile.gif" border="0">  Really it's good to talk about though.
 You never know she may think she's protecting you by not
brining it up.<br>
<br>
And I am not shocked you haven't talked about this with her.
 And my guess is she does know.  You guys probably just
need to get some conversation going.  Even if she tells you
she doesn't want to talk about it, at least that gives the
opportunity to tell her that when she's ready if she wants to talk
to you you are there for her.  Oh and if she does say she
doesn't want to talk about it.....leave it alone.  I ALWAYS
HAte it when people want me to talk about my health etc. when I'm
not in the mood.<br>
<br>
Good luck to you both.

 

[littledebbie]

Hi, I haven't read all the responses so if this has already been
said i am sorry to be repetitive. <br>
I can't remember not knowing.  Yet, my parents and I didn't
really "talk" about it until I was maybe 16 or so.
 They knew I knew by small comments here or there etc.
 And yes of course the out of date text books which we always
discussed.  And because we talked about not sitting around and
waiting to die as a lifestyle choice <img src="i/expressions/face-icon-small-wink.gif" border="0">  But other than that I
don't think it was on my mind much before 16 or so.  And then
I only started doing the reality check thing because as other kids
started talking about their futures college, marriage etc.  I
was a  bit frustrated because all of those decisions for
myself had to somewhat revolve around my health (can't I get a
"UNFAIR" from the choir?).<br>
<br>
Anyway, all I'm saying is she just might not feel like talking
about it.  truthfully it may seem like a long way out there to
her and not worth worrying about yet.  She's a kid.  My
guess her brain is busy with, friends, boys and homework.
 When your 13, 17 seems like a long ways away.  <br>
<br>
I would maybe bring up some topics that might get a little
conversation going.  That's not directly about her.
 Maybe some new CF treatments or maybe some people you know on
here, that you could discuss how they're doing.  You could
feel her out to see what she maybe has a grasp of and what she
doesn't.  My guess is she knows.<br>
<br>
If she doesn't.......yah, I have to say I would tell her.
 Maybe you could talk to a professional for advice on how to.
 I myself am a big fan of having talks like that where you
don't actually have to look at each other, like in the car.
 That way if you cry it's not like someone is staring at you
while you do it <img src="i/expressions/face-icon-small-smile.gif" border="0">  Really it's good to talk about though.
 You never know she may think she's protecting you by not
brining it up.<br>
<br>
And I am not shocked you haven't talked about this with her.
 And my guess is she does know.  You guys probably just
need to get some conversation going.  Even if she tells you
she doesn't want to talk about it, at least that gives the
opportunity to tell her that when she's ready if she wants to talk
to you you are there for her.  Oh and if she does say she
doesn't want to talk about it.....leave it alone.  I ALWAYS
HAte it when people want me to talk about my health etc. when I'm
not in the mood.<br>
<br>
Good luck to you both.

 

[littledebbie]

Hi, I haven't read all the responses so if this has already been
said i am sorry to be repetitive. <br>
I can't remember not knowing.  Yet, my parents and I didn't
really "talk" about it until I was maybe 16 or so.
 They knew I knew by small comments here or there etc.
 And yes of course the out of date text books which we always
discussed.  And because we talked about not sitting around and
waiting to die as a lifestyle choice <img src="i/expressions/face-icon-small-wink.gif" border="0">  But other than that I
don't think it was on my mind much before 16 or so.  And then
I only started doing the reality check thing because as other kids
started talking about their futures college, marriage etc.  I
was a  bit frustrated because all of those decisions for
myself had to somewhat revolve around my health (can't I get a
"UNFAIR" from the choir?).<br>
<br>
Anyway, all I'm saying is she just might not feel like talking
about it.  truthfully it may seem like a long way out there to
her and not worth worrying about yet.  She's a kid.  My
guess her brain is busy with, friends, boys and homework.
 When your 13, 17 seems like a long ways away.  <br>
<br>
I would maybe bring up some topics that might get a little
conversation going.  That's not directly about her.
 Maybe some new CF treatments or maybe some people you know on
here, that you could discuss how they're doing.  You could
feel her out to see what she maybe has a grasp of and what she
doesn't.  My guess is she knows.<br>
<br>
If she doesn't.......yah, I have to say I would tell her.
 Maybe you could talk to a professional for advice on how to.
 I myself am a big fan of having talks like that where you
don't actually have to look at each other, like in the car.
 That way if you cry it's not like someone is staring at you
while you do it <img src="i/expressions/face-icon-small-smile.gif" border="0">  Really it's good to talk about though.
 You never know she may think she's protecting you by not
brining it up.<br>
<br>
And I am not shocked you haven't talked about this with her.
 And my guess is she does know.  You guys probably just
need to get some conversation going.  Even if she tells you
she doesn't want to talk about it, at least that gives the
opportunity to tell her that when she's ready if she wants to talk
to you you are there for her.  Oh and if she does say she
doesn't want to talk about it.....leave it alone.  I ALWAYS
HAte it when people want me to talk about my health etc. when I'm
not in the mood.<br>
<br>
Good luck to you both.

 

[anonymous]

My son just turned two and when I ask him "Who has CF?" He replies with a smile, "I do." and then we talk about his Creon and VEST. I always end it by saying "No big deal" When Aidan was diagnosed at 8 days old, we were devastated but relieved to know we could treat it. In my husband's words "Life is a death sentence. CF or not." Aidan will know he has CF, no big deal. There are people who have worse. I obviously am somewhat spoiled b/c the prognosis for our little ones is so good these days. I keep all CFers in my prayers every night.

Megan

 

[anonymous]

My son just turned two and when I ask him "Who has CF?" He replies with a smile, "I do." and then we talk about his Creon and VEST. I always end it by saying "No big deal" When Aidan was diagnosed at 8 days old, we were devastated but relieved to know we could treat it. In my husband's words "Life is a death sentence. CF or not." Aidan will know he has CF, no big deal. There are people who have worse. I obviously am somewhat spoiled b/c the prognosis for our little ones is so good these days. I keep all CFers in my prayers every night.

Megan

 

[anonymous]

My son just turned two and when I ask him "Who has CF?" He replies with a smile, "I do." and then we talk about his Creon and VEST. I always end it by saying "No big deal" When Aidan was diagnosed at 8 days old, we were devastated but relieved to know we could treat it. In my husband's words "Life is a death sentence. CF or not." Aidan will know he has CF, no big deal. There are people who have worse. I obviously am somewhat spoiled b/c the prognosis for our little ones is so good these days. I keep all CFers in my prayers every night.

Megan

 

[NoExcuses]

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


Amy- it is not up to you to scold anyone about their child- raising choices. This parent is asking a question out of desperation and sadness and is trying to do the right thing for their child. They are not ignorant to want to protect their child.


.</end quote></div>


I didn't scold. I said I was horrified. And just like everyone else on this site, I will express my reaction.

 

[NoExcuses]

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


Amy- it is not up to you to scold anyone about their child- raising choices. This parent is asking a question out of desperation and sadness and is trying to do the right thing for their child. They are not ignorant to want to protect their child.


.</end quote></div>


I didn't scold. I said I was horrified. And just like everyone else on this site, I will express my reaction.

 

[NoExcuses]

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


Amy- it is not up to you to scold anyone about their child- raising choices. This parent is asking a question out of desperation and sadness and is trying to do the right thing for their child. They are not ignorant to want to protect their child.


.</end quote></div>


I didn't scold. I said I was horrified. And just like everyone else on this site, I will express my reaction.

 

[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.

 

[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.