Do you feel this way about caring for your child with CF?

[MargaritaChic]

Recently someone posted somthing on their child's CaringBridge site. It is a statement in a book Alex....The life of a Child, by Frank Deford.


Deford has a statement in his book. He is talking about all of the medications and treatments and so on it takes to take care of people with CF.

He says, "In a sense, it isn't accurate to say that we have kept Alex alive-we merely postponed her dying".

I am wondering if this is how you feel as people with CF. Do you feel like life is a constant struggle just to keep them alive?

 

[MargaritaChic]

Recently someone posted somthing on their child's CaringBridge site. It is a statement in a book Alex....The life of a Child, by Frank Deford.


Deford has a statement in his book. He is talking about all of the medications and treatments and so on it takes to take care of people with CF.

He says, "In a sense, it isn't accurate to say that we have kept Alex alive-we merely postponed her dying".

I am wondering if this is how you feel as people with CF. Do you feel like life is a constant struggle just to keep them alive?

 

[MargaritaChic]

Recently someone posted somthing on their child's CaringBridge site. It is a statement in a book Alex....The life of a Child, by Frank Deford.


Deford has a statement in his book. He is talking about all of the medications and treatments and so on it takes to take care of people with CF.

He says, "In a sense, it isn't accurate to say that we have kept Alex alive-we merely postponed her dying".

I am wondering if this is how you feel as people with CF. Do you feel like life is a constant struggle just to keep them alive?

 

[MargaritaChic]

Recently someone posted somthing on their child's CaringBridge site. It is a statement in a book Alex....The life of a Child, by Frank Deford.


Deford has a statement in his book. He is talking about all of the medications and treatments and so on it takes to take care of people with CF.

He says, "In a sense, it isn't accurate to say that we have kept Alex alive-we merely postponed her dying".

I am wondering if this is how you feel as people with CF. Do you feel like life is a constant struggle just to keep them alive?

 

[MargaritaChic]

Recently someone posted somthing on their child's CaringBridge site. It is a statement in a book Alex....The life of a Child, by Frank Deford.
<br />
<br />
<br />Deford has a statement in his book. He is talking about all of the medications and treatments and so on it takes to take care of people with CF.
<br />
<br />He says, "In a sense, it isn't accurate to say that we have kept Alex alive-we merely postponed her dying".
<br />
<br />I am wondering if this is how you feel as people with CF. Do you feel like life is a constant struggle just to keep them alive?
<br />
<br />

 

[ktsmom]

No, it is definitely not how I feel. We are truly LIVING right now! Probably to our financial detriment, but that's another story. <img src="i/expressions/face-icon-small-wink.gif" border="0">

I've read that book and I think that Deford was possibly referring more to when Alex was in "end-stage" CF, if you could call it that. Her health was in a very tenuous state for some time before her passing. I'm going to go back and look for that passage again to get the correct context. Interesting, I read that on the same CaringBridge site as well.

 

[ktsmom]

No, it is definitely not how I feel. We are truly LIVING right now! Probably to our financial detriment, but that's another story. <img src="i/expressions/face-icon-small-wink.gif" border="0">

I've read that book and I think that Deford was possibly referring more to when Alex was in "end-stage" CF, if you could call it that. Her health was in a very tenuous state for some time before her passing. I'm going to go back and look for that passage again to get the correct context. Interesting, I read that on the same CaringBridge site as well.

 

[ktsmom]

No, it is definitely not how I feel. We are truly LIVING right now! Probably to our financial detriment, but that's another story. <img src="i/expressions/face-icon-small-wink.gif" border="0">

I've read that book and I think that Deford was possibly referring more to when Alex was in "end-stage" CF, if you could call it that. Her health was in a very tenuous state for some time before her passing. I'm going to go back and look for that passage again to get the correct context. Interesting, I read that on the same CaringBridge site as well.

 

[ktsmom]

No, it is definitely not how I feel. We are truly LIVING right now! Probably to our financial detriment, but that's another story. <img src="i/expressions/face-icon-small-wink.gif" border="0">

I've read that book and I think that Deford was possibly referring more to when Alex was in "end-stage" CF, if you could call it that. Her health was in a very tenuous state for some time before her passing. I'm going to go back and look for that passage again to get the correct context. Interesting, I read that on the same CaringBridge site as well.

 

[ktsmom]

No, it is definitely not how I feel. We are truly LIVING right now! Probably to our financial detriment, but that's another story. <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
<br />I've read that book and I think that Deford was possibly referring more to when Alex was in "end-stage" CF, if you could call it that. Her health was in a very tenuous state for some time before her passing. I'm going to go back and look for that passage again to get the correct context. Interesting, I read that on the same CaringBridge site as well.

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ktsmom</b></i> Interesting, I read that on the same CaringBridge site as well.</end quote></div>

I talked to my husband about it. He thinks that the mom who wrote about it on her CaringBridge and Deford have a different perspective than we do right now, because they have/are dealing with the death of a child to CF.

Because our daughter is very young and has not been ill yet, we don't have the same perspective.

So I want to hear from other moms/dads who have been dealing with this longer, to know if this is how people feel.

My hope for my daughter is that she can grow up and know that CF will be a part of her life but will not definae who she is.

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ktsmom</b></i> Interesting, I read that on the same CaringBridge site as well.</end quote></div>

I talked to my husband about it. He thinks that the mom who wrote about it on her CaringBridge and Deford have a different perspective than we do right now, because they have/are dealing with the death of a child to CF.

Because our daughter is very young and has not been ill yet, we don't have the same perspective.

So I want to hear from other moms/dads who have been dealing with this longer, to know if this is how people feel.

My hope for my daughter is that she can grow up and know that CF will be a part of her life but will not definae who she is.

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ktsmom</b></i> Interesting, I read that on the same CaringBridge site as well.</end quote></div>

I talked to my husband about it. He thinks that the mom who wrote about it on her CaringBridge and Deford have a different perspective than we do right now, because they have/are dealing with the death of a child to CF.

Because our daughter is very young and has not been ill yet, we don't have the same perspective.

So I want to hear from other moms/dads who have been dealing with this longer, to know if this is how people feel.

My hope for my daughter is that she can grow up and know that CF will be a part of her life but will not definae who she is.

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ktsmom</b></i> Interesting, I read that on the same CaringBridge site as well.</end quote>

I talked to my husband about it. He thinks that the mom who wrote about it on her CaringBridge and Deford have a different perspective than we do right now, because they have/are dealing with the death of a child to CF.

Because our daughter is very young and has not been ill yet, we don't have the same perspective.

So I want to hear from other moms/dads who have been dealing with this longer, to know if this is how people feel.

My hope for my daughter is that she can grow up and know that CF will be a part of her life but will not definae who she is.

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ktsmom</b></i> Interesting, I read that on the same CaringBridge site as well.</end quote>
<br />
<br />I talked to my husband about it. He thinks that the mom who wrote about it on her CaringBridge and Deford have a different perspective than we do right now, because they have/are dealing with the death of a child to CF.
<br />
<br />Because our daughter is very young and has not been ill yet, we don't have the same perspective.
<br />
<br />So I want to hear from other moms/dads who have been dealing with this longer, to know if this is how people feel.
<br />
<br />My hope for my daughter is that she can grow up and know that CF will be a part of her life but will not definae who she is.
<br />
<br />
<br />

 

[Chilemom]

my daughter is doing really fine at the moment, so maybe what i think now is because that.
i think that nobody cant fight against death, i mean, you never know when it cames, you never know how, is something huge and i am just a simple human. I fight , and i really do every moment since my daughter born, to give her the best life she can. Ok cf makes it harder, but i don´t think that our fight is diferent from any other mom of any child with Cf or not, ours is more hard.
but maybe if one day she is in a end stage i will fight against death even thou i would know that i am going to lose any way.

 

[Chilemom]

my daughter is doing really fine at the moment, so maybe what i think now is because that.
i think that nobody cant fight against death, i mean, you never know when it cames, you never know how, is something huge and i am just a simple human. I fight , and i really do every moment since my daughter born, to give her the best life she can. Ok cf makes it harder, but i don´t think that our fight is diferent from any other mom of any child with Cf or not, ours is more hard.
but maybe if one day she is in a end stage i will fight against death even thou i would know that i am going to lose any way.

 

[Chilemom]

my daughter is doing really fine at the moment, so maybe what i think now is because that.
i think that nobody cant fight against death, i mean, you never know when it cames, you never know how, is something huge and i am just a simple human. I fight , and i really do every moment since my daughter born, to give her the best life she can. Ok cf makes it harder, but i don´t think that our fight is diferent from any other mom of any child with Cf or not, ours is more hard.
but maybe if one day she is in a end stage i will fight against death even thou i would know that i am going to lose any way.

 

[Chilemom]

my daughter is doing really fine at the moment, so maybe what i think now is because that.
i think that nobody cant fight against death, i mean, you never know when it cames, you never know how, is something huge and i am just a simple human. I fight , and i really do every moment since my daughter born, to give her the best life she can. Ok cf makes it harder, but i don´t think that our fight is diferent from any other mom of any child with Cf or not, ours is more hard.
but maybe if one day she is in a end stage i will fight against death even thou i would know that i am going to lose any way.

 

[Chilemom]

my daughter is doing really fine at the moment, so maybe what i think now is because that.
<br />i think that nobody cant fight against death, i mean, you never know when it cames, you never know how, is something huge and i am just a simple human. I fight , and i really do every moment since my daughter born, to give her the best life she can. Ok cf makes it harder, but i don´t think that our fight is diferent from any other mom of any child with Cf or not, ours is more hard.
<br />but maybe if one day she is in a end stage i will fight against death even thou i would know that i am going to lose any way.
<br />
<br />