This makes me feel very sad

C

cdale613

New member
Touchy subject, so everyone be cool... ok?

<a target=_blank class=ftalternatingbarlinklarge href="http://www.news-medical.net/?id=35700
">http://www.news-medical.net/?id=35700
</a>
How does this make you feel?

Part of me is incredibly saddened by this.

I am sad because if this is what passes for a "cure" our society should be ashamed of itself. We as a society lose something when this is how we confront life's challenges, instead of valuing the different and making helping those in need a priority.

I am sad because it makes me feel "undesireable", which goes against the high sense of self-worth and over-developed ego I've been working on for the past 27 years.

I am not surprised, nor am I judging the decisions of those who had an incredibly hard decision to make, but it saddens me. I try to put myself in the place of would-be CF parents. What if we don't have health coverage? What if I'm a single mom works full time? What if the only stories I find of life with CF are horribly painful... how could I bring that child into the world? It is so easy to defend the choices that obviously many people have made...

But I am that child....

I am ALL for prenatal testing, but it seems that we have forgotten to provide the genetic counseling and support systems for dealing with the results.

I am "mostly" pro-choice - due to the abhorrent idea of an unwanted pregnancy forced on a victim of incest or rape, and the identification of how short our social system falls in providing the social services required to carry a pregnancy to term and raise a healthy child.

Nonetheless, I am very sad about this.

Chris

27 m w/CF
 
C

cdale613

New member
Touchy subject, so everyone be cool... ok?

<a target=_blank class=ftalternatingbarlinklarge href="http://www.news-medical.net/?id=35700
">http://www.news-medical.net/?id=35700
</a>
How does this make you feel?

Part of me is incredibly saddened by this.

I am sad because if this is what passes for a "cure" our society should be ashamed of itself. We as a society lose something when this is how we confront life's challenges, instead of valuing the different and making helping those in need a priority.

I am sad because it makes me feel "undesireable", which goes against the high sense of self-worth and over-developed ego I've been working on for the past 27 years.

I am not surprised, nor am I judging the decisions of those who had an incredibly hard decision to make, but it saddens me. I try to put myself in the place of would-be CF parents. What if we don't have health coverage? What if I'm a single mom works full time? What if the only stories I find of life with CF are horribly painful... how could I bring that child into the world? It is so easy to defend the choices that obviously many people have made...

But I am that child....

I am ALL for prenatal testing, but it seems that we have forgotten to provide the genetic counseling and support systems for dealing with the results.

I am "mostly" pro-choice - due to the abhorrent idea of an unwanted pregnancy forced on a victim of incest or rape, and the identification of how short our social system falls in providing the social services required to carry a pregnancy to term and raise a healthy child.

Nonetheless, I am very sad about this.

Chris

27 m w/CF
 
C

cdale613

New member
Touchy subject, so everyone be cool... ok?

<a target=_blank class=ftalternatingbarlinklarge href="http://www.news-medical.net/?id=35700
">http://www.news-medical.net/?id=35700
</a>
How does this make you feel?

Part of me is incredibly saddened by this.

I am sad because if this is what passes for a "cure" our society should be ashamed of itself. We as a society lose something when this is how we confront life's challenges, instead of valuing the different and making helping those in need a priority.

I am sad because it makes me feel "undesireable", which goes against the high sense of self-worth and over-developed ego I've been working on for the past 27 years.

I am not surprised, nor am I judging the decisions of those who had an incredibly hard decision to make, but it saddens me. I try to put myself in the place of would-be CF parents. What if we don't have health coverage? What if I'm a single mom works full time? What if the only stories I find of life with CF are horribly painful... how could I bring that child into the world? It is so easy to defend the choices that obviously many people have made...

But I am that child....

I am ALL for prenatal testing, but it seems that we have forgotten to provide the genetic counseling and support systems for dealing with the results.

I am "mostly" pro-choice - due to the abhorrent idea of an unwanted pregnancy forced on a victim of incest or rape, and the identification of how short our social system falls in providing the social services required to carry a pregnancy to term and raise a healthy child.

Nonetheless, I am very sad about this.

Chris

27 m w/CF
 
C

cdale613

New member
Touchy subject, so everyone be cool... ok?

<a target=_blank class=ftalternatingbarlinklarge href="http://www.news-medical.net/?id=35700
">http://www.news-medical.net/?id=35700
</a>
How does this make you feel?

Part of me is incredibly saddened by this.

I am sad because if this is what passes for a "cure" our society should be ashamed of itself. We as a society lose something when this is how we confront life's challenges, instead of valuing the different and making helping those in need a priority.

I am sad because it makes me feel "undesireable", which goes against the high sense of self-worth and over-developed ego I've been working on for the past 27 years.

I am not surprised, nor am I judging the decisions of those who had an incredibly hard decision to make, but it saddens me. I try to put myself in the place of would-be CF parents. What if we don't have health coverage? What if I'm a single mom works full time? What if the only stories I find of life with CF are horribly painful... how could I bring that child into the world? It is so easy to defend the choices that obviously many people have made...

But I am that child....

I am ALL for prenatal testing, but it seems that we have forgotten to provide the genetic counseling and support systems for dealing with the results.

I am "mostly" pro-choice - due to the abhorrent idea of an unwanted pregnancy forced on a victim of incest or rape, and the identification of how short our social system falls in providing the social services required to carry a pregnancy to term and raise a healthy child.

Nonetheless, I am very sad about this.

Chris

27 m w/CF
 
C

cdale613

New member
Touchy subject, so everyone be cool... ok?
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.news-medical.net/?id=35700
">http://www.news-medical.net/?id=35700
</a><br />
<br />How does this make you feel?
<br />
<br />Part of me is incredibly saddened by this.
<br />
<br />I am sad because if this is what passes for a "cure" our society should be ashamed of itself. We as a society lose something when this is how we confront life's challenges, instead of valuing the different and making helping those in need a priority.
<br />
<br />I am sad because it makes me feel "undesireable", which goes against the high sense of self-worth and over-developed ego I've been working on for the past 27 years.
<br />
<br />I am not surprised, nor am I judging the decisions of those who had an incredibly hard decision to make, but it saddens me. I try to put myself in the place of would-be CF parents. What if we don't have health coverage? What if I'm a single mom works full time? What if the only stories I find of life with CF are horribly painful... how could I bring that child into the world? It is so easy to defend the choices that obviously many people have made...
<br />
<br />But I am that child....
<br />
<br />I am ALL for prenatal testing, but it seems that we have forgotten to provide the genetic counseling and support systems for dealing with the results.
<br />
<br />I am "mostly" pro-choice - due to the abhorrent idea of an unwanted pregnancy forced on a victim of incest or rape, and the identification of how short our social system falls in providing the social services required to carry a pregnancy to term and raise a healthy child.
<br />
<br />Nonetheless, I am very sad about this.
<br />
<br />Chris
<br />
<br />27 m w/CF
 
H

hbollotte

New member
crazy. when i was pregnant i didn't even want to have dustin carrier tested because were keeping the baby no matter what. i think i have lived a wonderful life so far and wouldn't trade it for anything.

i know it may be a fact the DDF508 is the worst? or so i've read. well i'm DDF508 and i consider my self lucky to be as healthy as i am compared to others with different mutations.

oh well, to each is own. i just know i could never abort, unless you say its something like rape.
 
H

hbollotte

New member
crazy. when i was pregnant i didn't even want to have dustin carrier tested because were keeping the baby no matter what. i think i have lived a wonderful life so far and wouldn't trade it for anything.

i know it may be a fact the DDF508 is the worst? or so i've read. well i'm DDF508 and i consider my self lucky to be as healthy as i am compared to others with different mutations.

oh well, to each is own. i just know i could never abort, unless you say its something like rape.
 
H

hbollotte

New member
crazy. when i was pregnant i didn't even want to have dustin carrier tested because were keeping the baby no matter what. i think i have lived a wonderful life so far and wouldn't trade it for anything.

i know it may be a fact the DDF508 is the worst? or so i've read. well i'm DDF508 and i consider my self lucky to be as healthy as i am compared to others with different mutations.

oh well, to each is own. i just know i could never abort, unless you say its something like rape.
 
H

hbollotte

New member
crazy. when i was pregnant i didn't even want to have dustin carrier tested because were keeping the baby no matter what. i think i have lived a wonderful life so far and wouldn't trade it for anything.

i know it may be a fact the DDF508 is the worst? or so i've read. well i'm DDF508 and i consider my self lucky to be as healthy as i am compared to others with different mutations.

oh well, to each is own. i just know i could never abort, unless you say its something like rape.
 
H

hbollotte

New member
crazy. when i was pregnant i didn't even want to have dustin carrier tested because were keeping the baby no matter what. i think i have lived a wonderful life so far and wouldn't trade it for anything.
<br />
<br />i know it may be a fact the DDF508 is the worst? or so i've read. well i'm DDF508 and i consider my self lucky to be as healthy as i am compared to others with different mutations.
<br />
<br />oh well, to each is own. i just know i could never abort, unless you say its something like rape.
 
R

Rebjane

Super Moderator
Chris,

Just wanted to say I have read your blogs about your training for bike rides and races; I am totally inspired by you; just as a human being; whether or not you had CF. The fact that you do have CF inspires me even more to get out there and exercise .

As a parent of a CF'er , I have first hand experience what it feels like to go through all the genetic testing; from the we don't know what's wrong to your baby, to the it could be down's syndrome, trisomy 13, or CF. You are right in that we have the techniques to do this prenatal testing but not much help in the way of the moral/ethical content of what this really means and how to help parents deal with this information. My husband and I are so fortunate in that we have a good understanding of the science; no one prepared us for the emotional upheaval that genetic testing brings on. We are not religious. We just knew that we were to do our best for our child; it was not our choice to make in regards to termination. Life would be so boring if we were are "perfect" I am pro-choice as well. Life is like a rollercoaster; we're just going along for the ride and trying to enjoy the ups and downs.
 
R

Rebjane

Super Moderator
Chris,

Just wanted to say I have read your blogs about your training for bike rides and races; I am totally inspired by you; just as a human being; whether or not you had CF. The fact that you do have CF inspires me even more to get out there and exercise .

As a parent of a CF'er , I have first hand experience what it feels like to go through all the genetic testing; from the we don't know what's wrong to your baby, to the it could be down's syndrome, trisomy 13, or CF. You are right in that we have the techniques to do this prenatal testing but not much help in the way of the moral/ethical content of what this really means and how to help parents deal with this information. My husband and I are so fortunate in that we have a good understanding of the science; no one prepared us for the emotional upheaval that genetic testing brings on. We are not religious. We just knew that we were to do our best for our child; it was not our choice to make in regards to termination. Life would be so boring if we were are "perfect" I am pro-choice as well. Life is like a rollercoaster; we're just going along for the ride and trying to enjoy the ups and downs.
 
R

Rebjane

Super Moderator
Chris,

Just wanted to say I have read your blogs about your training for bike rides and races; I am totally inspired by you; just as a human being; whether or not you had CF. The fact that you do have CF inspires me even more to get out there and exercise .

As a parent of a CF'er , I have first hand experience what it feels like to go through all the genetic testing; from the we don't know what's wrong to your baby, to the it could be down's syndrome, trisomy 13, or CF. You are right in that we have the techniques to do this prenatal testing but not much help in the way of the moral/ethical content of what this really means and how to help parents deal with this information. My husband and I are so fortunate in that we have a good understanding of the science; no one prepared us for the emotional upheaval that genetic testing brings on. We are not religious. We just knew that we were to do our best for our child; it was not our choice to make in regards to termination. Life would be so boring if we were are "perfect" I am pro-choice as well. Life is like a rollercoaster; we're just going along for the ride and trying to enjoy the ups and downs.
 
R

Rebjane

Super Moderator
Chris,

Just wanted to say I have read your blogs about your training for bike rides and races; I am totally inspired by you; just as a human being; whether or not you had CF. The fact that you do have CF inspires me even more to get out there and exercise .

As a parent of a CF'er , I have first hand experience what it feels like to go through all the genetic testing; from the we don't know what's wrong to your baby, to the it could be down's syndrome, trisomy 13, or CF. You are right in that we have the techniques to do this prenatal testing but not much help in the way of the moral/ethical content of what this really means and how to help parents deal with this information. My husband and I are so fortunate in that we have a good understanding of the science; no one prepared us for the emotional upheaval that genetic testing brings on. We are not religious. We just knew that we were to do our best for our child; it was not our choice to make in regards to termination. Life would be so boring if we were are "perfect" I am pro-choice as well. Life is like a rollercoaster; we're just going along for the ride and trying to enjoy the ups and downs.
 
R

Rebjane

Super Moderator
Chris,

Just wanted to say I have read your blogs about your training for bike rides and races; I am totally inspired by you; just as a human being; whether or not you had CF. The fact that you do have CF inspires me even more to get out there and exercise .

As a parent of a CF'er , I have first hand experience what it feels like to go through all the genetic testing; from the we don't know what's wrong to your baby, to the it could be down's syndrome, trisomy 13, or CF. You are right in that we have the techniques to do this prenatal testing but not much help in the way of the moral/ethical content of what this really means and how to help parents deal with this information. My husband and I are so fortunate in that we have a good understanding of the science; no one prepared us for the emotional upheaval that genetic testing brings on. We are not religious. We just knew that we were to do our best for our child; it was not our choice to make in regards to termination. Life would be so boring if we were are "perfect" I am pro-choice as well. Life is like a rollercoaster; we're just going along for the ride and trying to enjoy the ups and downs.
 
R

Rickiesmom

Guest
I just want to say that I totally agree with you and it is soooo sad. I love my son so much and he has cf, I can't imagine life without him.

I have six kids and I opted out of prenatal testing, because I wouldn't get an abortion. Yet, had I gotten tested or screened for cf Rickie would of been treated right away. I wish I would of known. (no one even spoke of cf screening)
 
R

Rickiesmom

Guest
I just want to say that I totally agree with you and it is soooo sad. I love my son so much and he has cf, I can't imagine life without him.

I have six kids and I opted out of prenatal testing, because I wouldn't get an abortion. Yet, had I gotten tested or screened for cf Rickie would of been treated right away. I wish I would of known. (no one even spoke of cf screening)
 
R

Rickiesmom

Guest
I just want to say that I totally agree with you and it is soooo sad. I love my son so much and he has cf, I can't imagine life without him.

I have six kids and I opted out of prenatal testing, because I wouldn't get an abortion. Yet, had I gotten tested or screened for cf Rickie would of been treated right away. I wish I would of known. (no one even spoke of cf screening)
 
R

Rickiesmom

Guest
I just want to say that I totally agree with you and it is soooo sad. I love my son so much and he has cf, I can't imagine life without him.

I have six kids and I opted out of prenatal testing, because I wouldn't get an abortion. Yet, had I gotten tested or screened for cf Rickie would of been treated right away. I wish I would of known. (no one even spoke of cf screening)
 
R

Rickiesmom

Guest
I just want to say that I totally agree with you and it is soooo sad. I love my son so much and he has cf, I can't imagine life without him.
<br />
<br />I have six kids and I opted out of prenatal testing, because I wouldn't get an abortion. Yet, had I gotten tested or screened for cf Rickie would of been treated right away. I wish I would of known. (no one even spoke of cf screening)
 
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