PTC 124

Diane · Jun 21, 2009

I am glad to see that parents of children with cf dont dislike hearing from us adult cf'ers. I couldnt imagine why that statement would be true, but its good to know it isnt.
I love sharing my experiences and helping someone in the process. I also know that being a parent to a young child with cf has to be hard, especially at first. I know my mom went thru a bad tme when i was diagnosed at 3 years old, but that was 1968 and hardly anyone knew anything about cf then and the life expectancy was very young at the time. I think early teens or something like that.
I hate that she had to go thru what she did ( and my Dad too)thinking they would only have me for such a short time. I know for sure she would have loved to talk to anyone with cf that was an adult and could have offered anything in the way of advice or hope.

Diane · Jun 21, 2009

I am glad to see that parents of children with cf dont dislike hearing from us adult cf'ers. I couldnt imagine why that statement would be true, but its good to know it isnt.
I love sharing my experiences and helping someone in the process. I also know that being a parent to a young child with cf has to be hard, especially at first. I know my mom went thru a bad tme when i was diagnosed at 3 years old, but that was 1968 and hardly anyone knew anything about cf then and the life expectancy was very young at the time. I think early teens or something like that.
I hate that she had to go thru what she did ( and my Dad too)thinking they would only have me for such a short time. I know for sure she would have loved to talk to anyone with cf that was an adult and could have offered anything in the way of advice or hope.

Diane · Jun 21, 2009

I am glad to see that parents of children with cf dont dislike hearing from us adult cf'ers. I couldnt imagine why that statement would be true, but its good to know it isnt.
I love sharing my experiences and helping someone in the process. I also know that being a parent to a young child with cf has to be hard, especially at first. I know my mom went thru a bad tme when i was diagnosed at 3 years old, but that was 1968 and hardly anyone knew anything about cf then and the life expectancy was very young at the time. I think early teens or something like that.
I hate that she had to go thru what she did ( and my Dad too)thinking they would only have me for such a short time. I know for sure she would have loved to talk to anyone with cf that was an adult and could have offered anything in the way of advice or hope.

Diane · Jun 21, 2009

I am glad to see that parents of children with cf dont dislike hearing from us adult cf'ers. I couldnt imagine why that statement would be true, but its good to know it isnt.
I love sharing my experiences and helping someone in the process. I also know that being a parent to a young child with cf has to be hard, especially at first. I know my mom went thru a bad tme when i was diagnosed at 3 years old, but that was 1968 and hardly anyone knew anything about cf then and the life expectancy was very young at the time. I think early teens or something like that.
I hate that she had to go thru what she did ( and my Dad too)thinking they would only have me for such a short time. I know for sure she would have loved to talk to anyone with cf that was an adult and could have offered anything in the way of advice or hope.

Diane · Jun 21, 2009

I am glad to see that parents of children with cf dont dislike hearing from us adult cf'ers. I couldnt imagine why that statement would be true, but its good to know it isnt.
 I love sharing my experiences and helping someone in the process. I also know that being a parent to a young child with cf has to be hard, especially at first. I know my mom went thru a bad tme when i was diagnosed at 3 years old, but that was 1968 and hardly anyone knew anything about cf then and the life expectancy was very young at the time. I think early teens or something like that.
 I hate that she had to go thru what she did ( and my Dad too)thinking they would only have me for such a short time. I know for sure she would have loved to talk to anyone with cf that was an adult and could have offered anything in the way of advice or hope.

hmw · Jun 22, 2009

Yeah, it's absolutely not true. I have seen many parents post in this forum, and I assume they would not do so if they did not want to hear from the adults. Even the person who started this thread cross-posted here and in the Families forum. I assume she put the thread here with the express purpose of hoping that adults who are known to research might see it.

Anyone that has this idea- you would not want to be judged based on someone else's words or actions. So please do not do it to us parents, based on how someone else may have reacted in the past to the experiences and posts seen here. It's not fair.

Diane, I can only imagine what your mom went through. It's hard enough for me to deal with Emily's dx and prognosis, and it's so much better than what your mom had to cope with. If she only could have been given a glimpse into the future to give her some hope when you were little to see how you'd beat those odds; that would have given her so much strength I am sure.

hmw · Jun 22, 2009

Yeah, it's absolutely not true. I have seen many parents post in this forum, and I assume they would not do so if they did not want to hear from the adults. Even the person who started this thread cross-posted here and in the Families forum. I assume she put the thread here with the express purpose of hoping that adults who are known to research might see it.

Anyone that has this idea- you would not want to be judged based on someone else's words or actions. So please do not do it to us parents, based on how someone else may have reacted in the past to the experiences and posts seen here. It's not fair.

Diane, I can only imagine what your mom went through. It's hard enough for me to deal with Emily's dx and prognosis, and it's so much better than what your mom had to cope with. If she only could have been given a glimpse into the future to give her some hope when you were little to see how you'd beat those odds; that would have given her so much strength I am sure.

hmw · Jun 22, 2009

Yeah, it's absolutely not true. I have seen many parents post in this forum, and I assume they would not do so if they did not want to hear from the adults. Even the person who started this thread cross-posted here and in the Families forum. I assume she put the thread here with the express purpose of hoping that adults who are known to research might see it.

Anyone that has this idea- you would not want to be judged based on someone else's words or actions. So please do not do it to us parents, based on how someone else may have reacted in the past to the experiences and posts seen here. It's not fair.

Diane, I can only imagine what your mom went through. It's hard enough for me to deal with Emily's dx and prognosis, and it's so much better than what your mom had to cope with. If she only could have been given a glimpse into the future to give her some hope when you were little to see how you'd beat those odds; that would have given her so much strength I am sure.

hmw · Jun 22, 2009

Yeah, it's absolutely not true. I have seen many parents post in this forum, and I assume they would not do so if they did not want to hear from the adults. Even the person who started this thread cross-posted here and in the Families forum. I assume she put the thread here with the express purpose of hoping that adults who are known to research might see it.

Anyone that has this idea- you would not want to be judged based on someone else's words or actions. So please do not do it to us parents, based on how someone else may have reacted in the past to the experiences and posts seen here. It's not fair.

Diane, I can only imagine what your mom went through. It's hard enough for me to deal with Emily's dx and prognosis, and it's so much better than what your mom had to cope with. If she only could have been given a glimpse into the future to give her some hope when you were little to see how you'd beat those odds; that would have given her so much strength I am sure.

hmw · Jun 22, 2009

Yeah, it's absolutely not true. I have seen many parents post in this forum, and I assume they would not do so if they did not want to hear from the adults. Even the person who started this thread cross-posted here and in the Families forum. I assume she put the thread here with the express purpose of hoping that adults who are known to research might see it.
 
 Anyone that has this idea- you would not want to be judged based on someone else's words or actions. So please do not do it to us parents, based on how someone else may have reacted in the past to the experiences and posts seen here. It's not fair.
 
 Diane, I can only imagine what your mom went through. It's hard enough for me to deal with Emily's dx and prognosis, and it's so much better than what your mom had to cope with. If she only could have been given a glimpse into the future to give her some hope when you were little to see how you'd beat those odds; that would have given her so much strength I am sure.

jdprecious · Jun 23, 2009

As a mother of a young cf'er, I have to tell you my most valuable resource are adult cf'ers, here and at our cf camp. What better resource than those that have lived it???? These connections are worth more to me and have educated our entire family more than anything along the way. I want the truth raw and gritty especially after having sunshine blown up my butt for so long, not to mention the bonds we have formed w/ other CF families that are unbreakable. Nothing beats the support system you have in other CF'ers. So, those of you that feel that way, don't be so quick to count yourselves out, this mama values your responses!

jdprecious · Jun 23, 2009

As a mother of a young cf'er, I have to tell you my most valuable resource are adult cf'ers, here and at our cf camp. What better resource than those that have lived it???? These connections are worth more to me and have educated our entire family more than anything along the way. I want the truth raw and gritty especially after having sunshine blown up my butt for so long, not to mention the bonds we have formed w/ other CF families that are unbreakable. Nothing beats the support system you have in other CF'ers. So, those of you that feel that way, don't be so quick to count yourselves out, this mama values your responses!

jdprecious · Jun 23, 2009

As a mother of a young cf'er, I have to tell you my most valuable resource are adult cf'ers, here and at our cf camp. What better resource than those that have lived it???? These connections are worth more to me and have educated our entire family more than anything along the way. I want the truth raw and gritty especially after having sunshine blown up my butt for so long, not to mention the bonds we have formed w/ other CF families that are unbreakable. Nothing beats the support system you have in other CF'ers. So, those of you that feel that way, don't be so quick to count yourselves out, this mama values your responses!

jdprecious · Jun 23, 2009

As a mother of a young cf'er, I have to tell you my most valuable resource are adult cf'ers, here and at our cf camp. What better resource than those that have lived it???? These connections are worth more to me and have educated our entire family more than anything along the way. I want the truth raw and gritty especially after having sunshine blown up my butt for so long, not to mention the bonds we have formed w/ other CF families that are unbreakable. Nothing beats the support system you have in other CF'ers. So, those of you that feel that way, don't be so quick to count yourselves out, this mama values your responses!

jdprecious · Jun 23, 2009

As a mother of a young cf'er, I have to tell you my most valuable resource are adult cf'ers, here and at our cf camp. What better resource than those that have lived it???? These connections are worth more to me and have educated our entire family more than anything along the way. I want the truth raw and gritty especially after having sunshine blown up my butt for so long, not to mention the bonds we have formed w/ other CF families that are unbreakable. Nothing beats the support system you have in other CF'ers. So, those of you that feel that way, don't be so quick to count yourselves out, this mama values your responses!

SarahProcter · Jun 23, 2009

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

I am glad to see that parents of children with cf dont dislike hearing from us adult cf'ers. I couldnt imagine why that statement would be true, but its good to know it isnt. </end quote></div>

Chiming in as another parent to say that I come here specifically to hear from adults with CF, and I particularly appreciate the way that so many of you with CF go over things for what has the be the thousandth time with frightened parents. Thank you.

SarahProcter · Jun 23, 2009

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

I am glad to see that parents of children with cf dont dislike hearing from us adult cf'ers. I couldnt imagine why that statement would be true, but its good to know it isnt. </end quote></div>

Chiming in as another parent to say that I come here specifically to hear from adults with CF, and I particularly appreciate the way that so many of you with CF go over things for what has the be the thousandth time with frightened parents. Thank you.

SarahProcter · Jun 23, 2009

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

I am glad to see that parents of children with cf dont dislike hearing from us adult cf'ers. I couldnt imagine why that statement would be true, but its good to know it isnt. </end quote></div>

Chiming in as another parent to say that I come here specifically to hear from adults with CF, and I particularly appreciate the way that so many of you with CF go over things for what has the be the thousandth time with frightened parents. Thank you.

SarahProcter · Jun 23, 2009

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

I am glad to see that parents of children with cf dont dislike hearing from us adult cf'ers. I couldnt imagine why that statement would be true, but its good to know it isnt. </end quote>

Chiming in as another parent to say that I come here specifically to hear from adults with CF, and I particularly appreciate the way that so many of you with CF go over things for what has the be the thousandth time with frightened parents. Thank you.

SarahProcter · Jun 23, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Diane
 
 I am glad to see that parents of children with cf dont dislike hearing from us adult cf'ers. I couldnt imagine why that statement would be true, but its good to know it isnt. </end quote>
 
 Chiming in as another parent to say that I come here specifically to hear from adults with CF, and I particularly appreciate the way that so many of you with CF go over things for what has the be the thousandth time with frightened parents. Thank you.

PTC 124

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