why ??

Necron99 · Jul 23, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: Aspiemom

Don't let Necron start a fight where there wasn't one to begin with.

I think everyone agrees that everyone on here learns from each other. Period. Whether young or old, parent or patient, new dx or long ago dx, this bacteria or that...we all are different and we all can learn from each other, sift through what each other share.

The best thing to do, IMO - my old age opinion! lol - is ignore this thread and let it go. I don't mean delete the thread. I just don't want some taking offense just because Necron seemed to be trying to stir up something.</end quote></div>

Nice way to judge me , when i was told not to. i wasnt starting a fight i was stating a concern of how the two groups fighting. If you think im a trouble maker so be it , ignore me or turn me in .

As for the parents out there dealing with CF before there kids let me ask you this , have you ever had to deal with not breathing , or taking boat loads of meds . DO you have to deal with pic lines ..no you dont so the statment that the parents have been dealing with it longre is a farse. Besides when we move out you parents are no longer dealing with it are you ??

All i did was ask a question and now im attacked like i have seen so many others before me , in short i dont want to share my experiences with a bunch of people who think they all ready know everything . Just keep on thinking the days will be all bright and shiney , cover your head in the dirt and think every thing is fine

Necron99 · Jul 23, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: Aspiemom

Don't let Necron start a fight where there wasn't one to begin with.

I think everyone agrees that everyone on here learns from each other. Period. Whether young or old, parent or patient, new dx or long ago dx, this bacteria or that...we all are different and we all can learn from each other, sift through what each other share.

The best thing to do, IMO - my old age opinion! lol - is ignore this thread and let it go. I don't mean delete the thread. I just don't want some taking offense just because Necron seemed to be trying to stir up something.</end quote></div>

Nice way to judge me , when i was told not to. i wasnt starting a fight i was stating a concern of how the two groups fighting. If you think im a trouble maker so be it , ignore me or turn me in .

As for the parents out there dealing with CF before there kids let me ask you this , have you ever had to deal with not breathing , or taking boat loads of meds . DO you have to deal with pic lines ..no you dont so the statment that the parents have been dealing with it longre is a farse. Besides when we move out you parents are no longer dealing with it are you ??

All i did was ask a question and now im attacked like i have seen so many others before me , in short i dont want to share my experiences with a bunch of people who think they all ready know everything . Just keep on thinking the days will be all bright and shiney , cover your head in the dirt and think every thing is fine

Necron99 · Jul 23, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: Aspiemom

Don't let Necron start a fight where there wasn't one to begin with.

I think everyone agrees that everyone on here learns from each other. Period. Whether young or old, parent or patient, new dx or long ago dx, this bacteria or that...we all are different and we all can learn from each other, sift through what each other share.

The best thing to do, IMO - my old age opinion! lol - is ignore this thread and let it go. I don't mean delete the thread. I just don't want some taking offense just because Necron seemed to be trying to stir up something.</end quote></div>

Nice way to judge me , when i was told not to. i wasnt starting a fight i was stating a concern of how the two groups fighting. If you think im a trouble maker so be it , ignore me or turn me in .

As for the parents out there dealing with CF before there kids let me ask you this , have you ever had to deal with not breathing , or taking boat loads of meds . DO you have to deal with pic lines ..no you dont so the statment that the parents have been dealing with it longre is a farse. Besides when we move out you parents are no longer dealing with it are you ??

All i did was ask a question and now im attacked like i have seen so many others before me , in short i dont want to share my experiences with a bunch of people who think they all ready know everything . Just keep on thinking the days will be all bright and shiney , cover your head in the dirt and think every thing is fine

Necron99 · Jul 23, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: Aspiemom

Don't let Necron start a fight where there wasn't one to begin with.

I think everyone agrees that everyone on here learns from each other. Period. Whether young or old, parent or patient, new dx or long ago dx, this bacteria or that...we all are different and we all can learn from each other, sift through what each other share.

The best thing to do, IMO - my old age opinion! lol - is ignore this thread and let it go. I don't mean delete the thread. I just don't want some taking offense just because Necron seemed to be trying to stir up something.</end quote>

Nice way to judge me , when i was told not to. i wasnt starting a fight i was stating a concern of how the two groups fighting. If you think im a trouble maker so be it , ignore me or turn me in .

As for the parents out there dealing with CF before there kids let me ask you this , have you ever had to deal with not breathing , or taking boat loads of meds . DO you have to deal with pic lines ..no you dont so the statment that the parents have been dealing with it longre is a farse. Besides when we move out you parents are no longer dealing with it are you ??

All i did was ask a question and now im attacked like i have seen so many others before me , in short i dont want to share my experiences with a bunch of people who think they all ready know everything . Just keep on thinking the days will be all bright and shiney , cover your head in the dirt and think every thing is fine

Necron99 · Jul 23, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: Aspiemom
 
 Don't let Necron start a fight where there wasn't one to begin with.
 
 
 
 I think everyone agrees that everyone on here learns from each other. Period. Whether young or old, parent or patient, new dx or long ago dx, this bacteria or that...we all are different and we all can learn from each other, sift through what each other share.
 
 
 
 The best thing to do, IMO - my old age opinion! lol - is ignore this thread and let it go. I don't mean delete the thread. I just don't want some taking offense just because Necron seemed to be trying to stir up something.</end quote>
 
 
 Nice way to judge me , when i was told not to. i wasnt starting a fight i was stating a concern of how the two groups fighting. If you think im a trouble maker so be it , ignore me or turn me in .
 
 As for the parents out there dealing with CF before there kids let me ask you this , have you ever had to deal with not breathing , or taking boat loads of meds . DO you have to deal with pic lines ..no you dont so the statment that the parents have been dealing with it longre is a farse. Besides when we move out you parents are no longer dealing with it are you ??
 
 All i did was ask a question and now im attacked like i have seen so many others before me , in short i dont want to share my experiences with a bunch of people who think they all ready know everything . Just keep on thinking the days will be all bright and shiney , cover your head in the dirt and think every thing is fine

TestifyToLove · Jul 23, 2008

I honestly never know what to say to these threads. I'm a CF mom, so somehow its automatically assumed that I need it sugar coated and that I'm not living in reality. And, I feel guilty even contributed because just1more and I are in the very rare minority that we intentionally signed up for this world. We accepted it was terminal before we decided to go through with adopting the child. And, we looked at his case, we listened to the doctors tell us his life is even shorter than the normal CFer and we still walked through that door.

I know the reality here. I fought 8 long and hard months to get my son out of fostercare and away from a team of doctors who had the nerve to tell me he likely wouldn't get the liver tranplant he is going to need...because he's too dumb to deserve one! I fought hard against a social worker who kept telling me that he didn't have lung issues from his CF and he's not going to die of lung failure because he *only* has GI issues. Fought so hard I ticked the idiot off and had to get a judge to make her give me my son! I lay in bed every night and I pray my son sees his 20th birthday. I'm not selfish. I don't need 30 years with him. I just want to see him hit 20. And, I'm not sure he's going to make it there.

And, while we have the additional advantage that our CFer lacks the mental capacity to understand his future, we have 6 (soon to be 7) siblings who are all darn well going to know their brother is dying someday. And, we'll have to answer to them why we intentionally choose this path for them and not just for us.

I really don't see that Cfers and CFmoms hate each other. I see them handling this disease from different perspectives. As mothers, its our job to advocate for our children and to remain positive. Its understandable that as a CFer reaches adulthood and faces their mortality, they aren't going to view CF, their life nor anything else in the same light as their mother. I cannot understand what it is like to know that I am dying and my days are numbered. But, by the same token, an adult CFer cannot understand what it is like to face the fact that you will outlive and bury your child.

I would wager we all have something we can learn from the other, even when we don't think we do.

"so what does that mean for the very small # of cfDADS on the board? Does everyone hate us"

Nope, I just hate you have that ticker like somehow YOU are pregnant! <img src="i/expressions/face-icon-small-happy.gif" border="0">

TestifyToLove · Jul 23, 2008

I honestly never know what to say to these threads. I'm a CF mom, so somehow its automatically assumed that I need it sugar coated and that I'm not living in reality. And, I feel guilty even contributed because just1more and I are in the very rare minority that we intentionally signed up for this world. We accepted it was terminal before we decided to go through with adopting the child. And, we looked at his case, we listened to the doctors tell us his life is even shorter than the normal CFer and we still walked through that door.

I know the reality here. I fought 8 long and hard months to get my son out of fostercare and away from a team of doctors who had the nerve to tell me he likely wouldn't get the liver tranplant he is going to need...because he's too dumb to deserve one! I fought hard against a social worker who kept telling me that he didn't have lung issues from his CF and he's not going to die of lung failure because he *only* has GI issues. Fought so hard I ticked the idiot off and had to get a judge to make her give me my son! I lay in bed every night and I pray my son sees his 20th birthday. I'm not selfish. I don't need 30 years with him. I just want to see him hit 20. And, I'm not sure he's going to make it there.

And, while we have the additional advantage that our CFer lacks the mental capacity to understand his future, we have 6 (soon to be 7) siblings who are all darn well going to know their brother is dying someday. And, we'll have to answer to them why we intentionally choose this path for them and not just for us.

I really don't see that Cfers and CFmoms hate each other. I see them handling this disease from different perspectives. As mothers, its our job to advocate for our children and to remain positive. Its understandable that as a CFer reaches adulthood and faces their mortality, they aren't going to view CF, their life nor anything else in the same light as their mother. I cannot understand what it is like to know that I am dying and my days are numbered. But, by the same token, an adult CFer cannot understand what it is like to face the fact that you will outlive and bury your child.

I would wager we all have something we can learn from the other, even when we don't think we do.

"so what does that mean for the very small # of cfDADS on the board? Does everyone hate us"

Nope, I just hate you have that ticker like somehow YOU are pregnant! <img src="i/expressions/face-icon-small-happy.gif" border="0">

TestifyToLove · Jul 23, 2008

I honestly never know what to say to these threads. I'm a CF mom, so somehow its automatically assumed that I need it sugar coated and that I'm not living in reality. And, I feel guilty even contributed because just1more and I are in the very rare minority that we intentionally signed up for this world. We accepted it was terminal before we decided to go through with adopting the child. And, we looked at his case, we listened to the doctors tell us his life is even shorter than the normal CFer and we still walked through that door.

I know the reality here. I fought 8 long and hard months to get my son out of fostercare and away from a team of doctors who had the nerve to tell me he likely wouldn't get the liver tranplant he is going to need...because he's too dumb to deserve one! I fought hard against a social worker who kept telling me that he didn't have lung issues from his CF and he's not going to die of lung failure because he *only* has GI issues. Fought so hard I ticked the idiot off and had to get a judge to make her give me my son! I lay in bed every night and I pray my son sees his 20th birthday. I'm not selfish. I don't need 30 years with him. I just want to see him hit 20. And, I'm not sure he's going to make it there.

And, while we have the additional advantage that our CFer lacks the mental capacity to understand his future, we have 6 (soon to be 7) siblings who are all darn well going to know their brother is dying someday. And, we'll have to answer to them why we intentionally choose this path for them and not just for us.

I really don't see that Cfers and CFmoms hate each other. I see them handling this disease from different perspectives. As mothers, its our job to advocate for our children and to remain positive. Its understandable that as a CFer reaches adulthood and faces their mortality, they aren't going to view CF, their life nor anything else in the same light as their mother. I cannot understand what it is like to know that I am dying and my days are numbered. But, by the same token, an adult CFer cannot understand what it is like to face the fact that you will outlive and bury your child.

I would wager we all have something we can learn from the other, even when we don't think we do.

"so what does that mean for the very small # of cfDADS on the board? Does everyone hate us"

Nope, I just hate you have that ticker like somehow YOU are pregnant! <img src="i/expressions/face-icon-small-happy.gif" border="0">

TestifyToLove · Jul 23, 2008

I honestly never know what to say to these threads. I'm a CF mom, so somehow its automatically assumed that I need it sugar coated and that I'm not living in reality. And, I feel guilty even contributed because just1more and I are in the very rare minority that we intentionally signed up for this world. We accepted it was terminal before we decided to go through with adopting the child. And, we looked at his case, we listened to the doctors tell us his life is even shorter than the normal CFer and we still walked through that door.

I know the reality here. I fought 8 long and hard months to get my son out of fostercare and away from a team of doctors who had the nerve to tell me he likely wouldn't get the liver tranplant he is going to need...because he's too dumb to deserve one! I fought hard against a social worker who kept telling me that he didn't have lung issues from his CF and he's not going to die of lung failure because he *only* has GI issues. Fought so hard I ticked the idiot off and had to get a judge to make her give me my son! I lay in bed every night and I pray my son sees his 20th birthday. I'm not selfish. I don't need 30 years with him. I just want to see him hit 20. And, I'm not sure he's going to make it there.

And, while we have the additional advantage that our CFer lacks the mental capacity to understand his future, we have 6 (soon to be 7) siblings who are all darn well going to know their brother is dying someday. And, we'll have to answer to them why we intentionally choose this path for them and not just for us.

I really don't see that Cfers and CFmoms hate each other. I see them handling this disease from different perspectives. As mothers, its our job to advocate for our children and to remain positive. Its understandable that as a CFer reaches adulthood and faces their mortality, they aren't going to view CF, their life nor anything else in the same light as their mother. I cannot understand what it is like to know that I am dying and my days are numbered. But, by the same token, an adult CFer cannot understand what it is like to face the fact that you will outlive and bury your child.

I would wager we all have something we can learn from the other, even when we don't think we do.

"so what does that mean for the very small # of cfDADS on the board? Does everyone hate us"

Nope, I just hate you have that ticker like somehow YOU are pregnant! <img src="i/expressions/face-icon-small-happy.gif" border="0">

TestifyToLove · Jul 23, 2008

I honestly never know what to say to these threads. I'm a CF mom, so somehow its automatically assumed that I need it sugar coated and that I'm not living in reality. And, I feel guilty even contributed because just1more and I are in the very rare minority that we intentionally signed up for this world. We accepted it was terminal before we decided to go through with adopting the child. And, we looked at his case, we listened to the doctors tell us his life is even shorter than the normal CFer and we still walked through that door.
 
 I know the reality here. I fought 8 long and hard months to get my son out of fostercare and away from a team of doctors who had the nerve to tell me he likely wouldn't get the liver tranplant he is going to need...because he's too dumb to deserve one! I fought hard against a social worker who kept telling me that he didn't have lung issues from his CF and he's not going to die of lung failure because he *only* has GI issues. Fought so hard I ticked the idiot off and had to get a judge to make her give me my son! I lay in bed every night and I pray my son sees his 20th birthday. I'm not selfish. I don't need 30 years with him. I just want to see him hit 20. And, I'm not sure he's going to make it there.
 
 And, while we have the additional advantage that our CFer lacks the mental capacity to understand his future, we have 6 (soon to be 7) siblings who are all darn well going to know their brother is dying someday. And, we'll have to answer to them why we intentionally choose this path for them and not just for us.
 
 I really don't see that Cfers and CFmoms hate each other. I see them handling this disease from different perspectives. As mothers, its our job to advocate for our children and to remain positive. Its understandable that as a CFer reaches adulthood and faces their mortality, they aren't going to view CF, their life nor anything else in the same light as their mother. I cannot understand what it is like to know that I am dying and my days are numbered. But, by the same token, an adult CFer cannot understand what it is like to face the fact that you will outlive and bury your child.
 
 I would wager we all have something we can learn from the other, even when we don't think we do.
 
 "so what does that mean for the very small # of cfDADS on the board? Does everyone hate us"
 
 Nope, I just hate you have that ticker like somehow YOU are pregnant! <img src="i/expressions/face-icon-small-happy.gif" border="0">

jdprecious · Jul 23, 2008