This makes me feel very sad

chrissyd

New member
<div class="FTQUOTE"><begin quote>At the same time though what if a cure never arrives ... What if the only way to lessen the blow on some families or people is to just avoid the situation completely? For some that may be a huge NO NO but for others they see it as a completely reasonable thing to do. </end quote></div>

I think about that to. But my thoughts were that I can't have kids and I'd love to...sick or healthy. But I don't have that option really. But I think we all have different life expiriences that factor into thinking the way we do. I just think the important thing is to understand is that we are not all the same...thank goodness for that cause if we were...the world would be pretty darn dull in my book!

I can totally understand what your bringing up. While I hadn't really thought of it this way, I can see the parallels. I guess in my mind they are two different situations...but its interesting food for thought.

<div class="FTQUOTE"><begin quote>I don't know call me heartless or without a soul </end quote></div>

Hopefully no one. We all see the world differently. It may not be the choice for me; but I have no right, nor does anyone else; IMHO, to tell you or anyone else how to make such a personal decision.
And all though the thought scares me...those tests also can help parents prepare and like Amy had mentioned possibly start some sort of treatments.

<img src="i/expressions/rose.gif" border="0">
 

chrissyd

New member
<div class="FTQUOTE"><begin quote>At the same time though what if a cure never arrives ... What if the only way to lessen the blow on some families or people is to just avoid the situation completely? For some that may be a huge NO NO but for others they see it as a completely reasonable thing to do. </end quote></div>

I think about that to. But my thoughts were that I can't have kids and I'd love to...sick or healthy. But I don't have that option really. But I think we all have different life expiriences that factor into thinking the way we do. I just think the important thing is to understand is that we are not all the same...thank goodness for that cause if we were...the world would be pretty darn dull in my book!

I can totally understand what your bringing up. While I hadn't really thought of it this way, I can see the parallels. I guess in my mind they are two different situations...but its interesting food for thought.

<div class="FTQUOTE"><begin quote>I don't know call me heartless or without a soul </end quote></div>

Hopefully no one. We all see the world differently. It may not be the choice for me; but I have no right, nor does anyone else; IMHO, to tell you or anyone else how to make such a personal decision.
And all though the thought scares me...those tests also can help parents prepare and like Amy had mentioned possibly start some sort of treatments.

<img src="i/expressions/rose.gif" border="0">
 

chrissyd

New member
<div class="FTQUOTE"><begin quote>At the same time though what if a cure never arrives ... What if the only way to lessen the blow on some families or people is to just avoid the situation completely? For some that may be a huge NO NO but for others they see it as a completely reasonable thing to do. </end quote></div>

I think about that to. But my thoughts were that I can't have kids and I'd love to...sick or healthy. But I don't have that option really. But I think we all have different life expiriences that factor into thinking the way we do. I just think the important thing is to understand is that we are not all the same...thank goodness for that cause if we were...the world would be pretty darn dull in my book!

I can totally understand what your bringing up. While I hadn't really thought of it this way, I can see the parallels. I guess in my mind they are two different situations...but its interesting food for thought.

<div class="FTQUOTE"><begin quote>I don't know call me heartless or without a soul </end quote></div>

Hopefully no one. We all see the world differently. It may not be the choice for me; but I have no right, nor does anyone else; IMHO, to tell you or anyone else how to make such a personal decision.
And all though the thought scares me...those tests also can help parents prepare and like Amy had mentioned possibly start some sort of treatments.

<img src="i/expressions/rose.gif" border="0">
 

chrissyd

New member
<div class="FTQUOTE"><begin quote>At the same time though what if a cure never arrives ... What if the only way to lessen the blow on some families or people is to just avoid the situation completely? For some that may be a huge NO NO but for others they see it as a completely reasonable thing to do. </end quote>

I think about that to. But my thoughts were that I can't have kids and I'd love to...sick or healthy. But I don't have that option really. But I think we all have different life expiriences that factor into thinking the way we do. I just think the important thing is to understand is that we are not all the same...thank goodness for that cause if we were...the world would be pretty darn dull in my book!

I can totally understand what your bringing up. While I hadn't really thought of it this way, I can see the parallels. I guess in my mind they are two different situations...but its interesting food for thought.

<div class="FTQUOTE"><begin quote>I don't know call me heartless or without a soul </end quote>

Hopefully no one. We all see the world differently. It may not be the choice for me; but I have no right, nor does anyone else; IMHO, to tell you or anyone else how to make such a personal decision.
And all though the thought scares me...those tests also can help parents prepare and like Amy had mentioned possibly start some sort of treatments.

<img src="i/expressions/rose.gif" border="0">
 

chrissyd

New member
<div class="FTQUOTE"><begin quote>At the same time though what if a cure never arrives ... What if the only way to lessen the blow on some families or people is to just avoid the situation completely? For some that may be a huge NO NO but for others they see it as a completely reasonable thing to do. </end quote>
<br />
<br />I think about that to. But my thoughts were that I can't have kids and I'd love to...sick or healthy. But I don't have that option really. But I think we all have different life expiriences that factor into thinking the way we do. I just think the important thing is to understand is that we are not all the same...thank goodness for that cause if we were...the world would be pretty darn dull in my book!
<br />
<br />I can totally understand what your bringing up. While I hadn't really thought of it this way, I can see the parallels. I guess in my mind they are two different situations...but its interesting food for thought.
<br />
<br /><div class="FTQUOTE"><begin quote>I don't know call me heartless or without a soul </end quote>
<br />
<br />Hopefully no one. We all see the world differently. It may not be the choice for me; but I have no right, nor does anyone else; IMHO, to tell you or anyone else how to make such a personal decision.
<br />And all though the thought scares me...those tests also can help parents prepare and like Amy had mentioned possibly start some sort of treatments.
<br />
<br /><img src="i/expressions/rose.gif" border="0">
 

sue35

New member
To be honest it doesn't bother me. We have no idea the circumstances of these people. Yes, we are assuming that they wanted a "perfect" baby. But there could be tons of reasons they chose not to have the baby. No health insurance would be a big one. If they truly feel that they cannot handle a CF baby then who are we to judge them? And I agree with the "playing God" thing. If we are playing God by having babies without diseases then we are playing God by curing people without disease in my mind
 

sue35

New member
To be honest it doesn't bother me. We have no idea the circumstances of these people. Yes, we are assuming that they wanted a "perfect" baby. But there could be tons of reasons they chose not to have the baby. No health insurance would be a big one. If they truly feel that they cannot handle a CF baby then who are we to judge them? And I agree with the "playing God" thing. If we are playing God by having babies without diseases then we are playing God by curing people without disease in my mind
 

sue35

New member
To be honest it doesn't bother me. We have no idea the circumstances of these people. Yes, we are assuming that they wanted a "perfect" baby. But there could be tons of reasons they chose not to have the baby. No health insurance would be a big one. If they truly feel that they cannot handle a CF baby then who are we to judge them? And I agree with the "playing God" thing. If we are playing God by having babies without diseases then we are playing God by curing people without disease in my mind
 

sue35

New member
To be honest it doesn't bother me. We have no idea the circumstances of these people. Yes, we are assuming that they wanted a "perfect" baby. But there could be tons of reasons they chose not to have the baby. No health insurance would be a big one. If they truly feel that they cannot handle a CF baby then who are we to judge them? And I agree with the "playing God" thing. If we are playing God by having babies without diseases then we are playing God by curing people without disease in my mind
 

sue35

New member
To be honest it doesn't bother me. We have no idea the circumstances of these people. Yes, we are assuming that they wanted a "perfect" baby. But there could be tons of reasons they chose not to have the baby. No health insurance would be a big one. If they truly feel that they cannot handle a CF baby then who are we to judge them? And I agree with the "playing God" thing. If we are playing God by having babies without diseases then we are playing God by curing people without disease in my mind
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cdale613</b></i>

...but when I read it it seems like more of the effect is coming from newborn screenings. Of course, it may also be happening that once parents know the results of the newborn screening test they may make the decision not to have any more kids, where in the past there would have been a greater likelihood of multiple siblings with CF...</end quote></div>

This is the situation my husband and I find ourselves in. My daughter was diagnosed through Newborn screening. We have decided not to have any more children.

CF is a big factor in that, but not only because of the chance another child would have CF. Having a child with CF is expensive and takes alot of time. We feel that financially and emotionally we will be able to give more to Emma by not having additional children.
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cdale613</b></i>

...but when I read it it seems like more of the effect is coming from newborn screenings. Of course, it may also be happening that once parents know the results of the newborn screening test they may make the decision not to have any more kids, where in the past there would have been a greater likelihood of multiple siblings with CF...</end quote></div>

This is the situation my husband and I find ourselves in. My daughter was diagnosed through Newborn screening. We have decided not to have any more children.

CF is a big factor in that, but not only because of the chance another child would have CF. Having a child with CF is expensive and takes alot of time. We feel that financially and emotionally we will be able to give more to Emma by not having additional children.
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cdale613</b></i>

...but when I read it it seems like more of the effect is coming from newborn screenings. Of course, it may also be happening that once parents know the results of the newborn screening test they may make the decision not to have any more kids, where in the past there would have been a greater likelihood of multiple siblings with CF...</end quote></div>

This is the situation my husband and I find ourselves in. My daughter was diagnosed through Newborn screening. We have decided not to have any more children.

CF is a big factor in that, but not only because of the chance another child would have CF. Having a child with CF is expensive and takes alot of time. We feel that financially and emotionally we will be able to give more to Emma by not having additional children.
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cdale613</b></i>

...but when I read it it seems like more of the effect is coming from newborn screenings. Of course, it may also be happening that once parents know the results of the newborn screening test they may make the decision not to have any more kids, where in the past there would have been a greater likelihood of multiple siblings with CF...</end quote>

This is the situation my husband and I find ourselves in. My daughter was diagnosed through Newborn screening. We have decided not to have any more children.

CF is a big factor in that, but not only because of the chance another child would have CF. Having a child with CF is expensive and takes alot of time. We feel that financially and emotionally we will be able to give more to Emma by not having additional children.
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cdale613</b></i>
<br />
<br />...but when I read it it seems like more of the effect is coming from newborn screenings. Of course, it may also be happening that once parents know the results of the newborn screening test they may make the decision not to have any more kids, where in the past there would have been a greater likelihood of multiple siblings with CF...</end quote>
<br />
<br />This is the situation my husband and I find ourselves in. My daughter was diagnosed through Newborn screening. We have decided not to have any more children.
<br />
<br />CF is a big factor in that, but not only because of the chance another child would have CF. Having a child with CF is expensive and takes alot of time. We feel that financially and emotionally we will be able to give more to Emma by not having additional children.
<br />
<br />
<br />
<br />
 

JW212

New member
Emily..LOL....pooping thing!
My daughters doc strongly suggested her own room at college..one huge factor is a potential for a roomate to have colds/coughs and then she gets sick (although she is around people other places better to cut down on it in the 'home' environment)...and you are stuck in the room with that person for at least sleeping time...Also doing treatments..it can get annoying to a person that you share a 2x2 cubicle with! The coughing etc...(and maybe the farting thing!!) She also has to do the sinus irrigations and would perfer to be alone for that ...we watched it on UTube...too funny....So not to be ashamed but just some precautions and some privacy if they can. And lets face it...I went away to college and a private room would have sounded great to me.Although I was extrememly social (social director in sorority)...I also feel if you leave your door open you will get as much socializing as you want.
Mind if I ask what you do for airway clearance? She does the acupella...
 

JW212

New member
Emily..LOL....pooping thing!
My daughters doc strongly suggested her own room at college..one huge factor is a potential for a roomate to have colds/coughs and then she gets sick (although she is around people other places better to cut down on it in the 'home' environment)...and you are stuck in the room with that person for at least sleeping time...Also doing treatments..it can get annoying to a person that you share a 2x2 cubicle with! The coughing etc...(and maybe the farting thing!!) She also has to do the sinus irrigations and would perfer to be alone for that ...we watched it on UTube...too funny....So not to be ashamed but just some precautions and some privacy if they can. And lets face it...I went away to college and a private room would have sounded great to me.Although I was extrememly social (social director in sorority)...I also feel if you leave your door open you will get as much socializing as you want.
Mind if I ask what you do for airway clearance? She does the acupella...
 

JW212

New member
Emily..LOL....pooping thing!
My daughters doc strongly suggested her own room at college..one huge factor is a potential for a roomate to have colds/coughs and then she gets sick (although she is around people other places better to cut down on it in the 'home' environment)...and you are stuck in the room with that person for at least sleeping time...Also doing treatments..it can get annoying to a person that you share a 2x2 cubicle with! The coughing etc...(and maybe the farting thing!!) She also has to do the sinus irrigations and would perfer to be alone for that ...we watched it on UTube...too funny....So not to be ashamed but just some precautions and some privacy if they can. And lets face it...I went away to college and a private room would have sounded great to me.Although I was extrememly social (social director in sorority)...I also feel if you leave your door open you will get as much socializing as you want.
Mind if I ask what you do for airway clearance? She does the acupella...
 

JW212

New member
Emily..LOL....pooping thing!
My daughters doc strongly suggested her own room at college..one huge factor is a potential for a roomate to have colds/coughs and then she gets sick (although she is around people other places better to cut down on it in the 'home' environment)...and you are stuck in the room with that person for at least sleeping time...Also doing treatments..it can get annoying to a person that you share a 2x2 cubicle with! The coughing etc...(and maybe the farting thing!!) She also has to do the sinus irrigations and would perfer to be alone for that ...we watched it on UTube...too funny....So not to be ashamed but just some precautions and some privacy if they can. And lets face it...I went away to college and a private room would have sounded great to me.Although I was extrememly social (social director in sorority)...I also feel if you leave your door open you will get as much socializing as you want.
Mind if I ask what you do for airway clearance? She does the acupella...
 

JW212

New member
Emily..LOL....pooping thing!
<br />My daughters doc strongly suggested her own room at college..one huge factor is a potential for a roomate to have colds/coughs and then she gets sick (although she is around people other places better to cut down on it in the 'home' environment)...and you are stuck in the room with that person for at least sleeping time...Also doing treatments..it can get annoying to a person that you share a 2x2 cubicle with! The coughing etc...(and maybe the farting thing!!) She also has to do the sinus irrigations and would perfer to be alone for that ...we watched it on UTube...too funny....So not to be ashamed but just some precautions and some privacy if they can. And lets face it...I went away to college and a private room would have sounded great to me.Although I was extrememly social (social director in sorority)...I also feel if you leave your door open you will get as much socializing as you want.
<br />Mind if I ask what you do for airway clearance? She does the acupella...
<br />
 
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