W
welshwitch
Guest
yikes. please, realize we're all on the same team. moms are devastated when their kids have CF; forgive them if they can't fully understand.
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- Thread starter Necron99
- Start date
W
welshwitch
Guest
yikes. please, realize we're all on the same team. moms are devastated when their kids have CF; forgive them if they can't fully understand.
W
welshwitch
Guest
yikes. please, realize we're all on the same team. moms are devastated when their kids have CF; forgive them if they can't fully understand.
W
welshwitch
Guest
yikes. please, realize we're all on the same team. moms are devastated when their kids have CF; forgive them if they can't fully understand.
W
welshwitch
Guest
yikes. please, realize we're all on the same team. moms are devastated when their kids have CF; forgive them if they can't fully understand.
I think being a mom with a child with CF is very different than being the CFer. My mom has a completely different perspective than I do and we both value the time when we can share our perspectives with each other.
I think it is highly possible for both parties (Adult CFers and Mom's of CFers) to learn a lot from each other. That is the reason for this forum/blogs. My opinion-- we just need to stop labeling ourselves to the point that we alienate ourselves from other groups. (I hate labels). The reality is we are all stuck in the icky world of CF. We need to be working towards the same goals-- education and support and a cure.
I think it is highly possible for both parties (Adult CFers and Mom's of CFers) to learn a lot from each other. That is the reason for this forum/blogs. My opinion-- we just need to stop labeling ourselves to the point that we alienate ourselves from other groups. (I hate labels). The reality is we are all stuck in the icky world of CF. We need to be working towards the same goals-- education and support and a cure.
I think being a mom with a child with CF is very different than being the CFer. My mom has a completely different perspective than I do and we both value the time when we can share our perspectives with each other.
I think it is highly possible for both parties (Adult CFers and Mom's of CFers) to learn a lot from each other. That is the reason for this forum/blogs. My opinion-- we just need to stop labeling ourselves to the point that we alienate ourselves from other groups. (I hate labels). The reality is we are all stuck in the icky world of CF. We need to be working towards the same goals-- education and support and a cure.
I think it is highly possible for both parties (Adult CFers and Mom's of CFers) to learn a lot from each other. That is the reason for this forum/blogs. My opinion-- we just need to stop labeling ourselves to the point that we alienate ourselves from other groups. (I hate labels). The reality is we are all stuck in the icky world of CF. We need to be working towards the same goals-- education and support and a cure.
I think being a mom with a child with CF is very different than being the CFer. My mom has a completely different perspective than I do and we both value the time when we can share our perspectives with each other.
I think it is highly possible for both parties (Adult CFers and Mom's of CFers) to learn a lot from each other. That is the reason for this forum/blogs. My opinion-- we just need to stop labeling ourselves to the point that we alienate ourselves from other groups. (I hate labels). The reality is we are all stuck in the icky world of CF. We need to be working towards the same goals-- education and support and a cure.
I think it is highly possible for both parties (Adult CFers and Mom's of CFers) to learn a lot from each other. That is the reason for this forum/blogs. My opinion-- we just need to stop labeling ourselves to the point that we alienate ourselves from other groups. (I hate labels). The reality is we are all stuck in the icky world of CF. We need to be working towards the same goals-- education and support and a cure.
I think being a mom with a child with CF is very different than being the CFer. My mom has a completely different perspective than I do and we both value the time when we can share our perspectives with each other.
I think it is highly possible for both parties (Adult CFers and Mom's of CFers) to learn a lot from each other. That is the reason for this forum/blogs. My opinion-- we just need to stop labeling ourselves to the point that we alienate ourselves from other groups. (I hate labels). The reality is we are all stuck in the icky world of CF. We need to be working towards the same goals-- education and support and a cure.
I think it is highly possible for both parties (Adult CFers and Mom's of CFers) to learn a lot from each other. That is the reason for this forum/blogs. My opinion-- we just need to stop labeling ourselves to the point that we alienate ourselves from other groups. (I hate labels). The reality is we are all stuck in the icky world of CF. We need to be working towards the same goals-- education and support and a cure.
I think being a mom with a child with CF is very different than being the CFer. My mom has a completely different perspective than I do and we both value the time when we can share our perspectives with each other.
<br />
<br />I think it is highly possible for both parties (Adult CFers and Mom's of CFers) to learn a lot from each other. That is the reason for this forum/blogs. My opinion-- we just need to stop labeling ourselves to the point that we alienate ourselves from other groups. (I hate labels). The reality is we are all stuck in the icky world of CF. We need to be working towards the same goals-- education and support and a cure.
<br />
<br />
<br />
<br />I think it is highly possible for both parties (Adult CFers and Mom's of CFers) to learn a lot from each other. That is the reason for this forum/blogs. My opinion-- we just need to stop labeling ourselves to the point that we alienate ourselves from other groups. (I hate labels). The reality is we are all stuck in the icky world of CF. We need to be working towards the same goals-- education and support and a cure.
<br />
<br />
The fact of the matter is that we are all living with CF. The adult CFers had mother's didn't they? Their mothers have been dealing with this disease longer than the adult CFers themselves have. I bet they were just as afraid as the new mothers here today. I bet they would have loved to read about adult CFers having careers and families. That is the hope that I found here when I first came to this site. Hope that my child will be able to accomplish all of those things too.
This recent turmoil is not doing anyone any good. Nobody can completely understand another person's situation. It just isn't possible. Those without children can't know the anguish a mother feels when she can't make her baby okay. Those who do not have a terminal illness themselves cannot know how a CFer feels. It really is that simple.
I am just very disappointed with this whole situation.
Stacey
This recent turmoil is not doing anyone any good. Nobody can completely understand another person's situation. It just isn't possible. Those without children can't know the anguish a mother feels when she can't make her baby okay. Those who do not have a terminal illness themselves cannot know how a CFer feels. It really is that simple.
I am just very disappointed with this whole situation.
Stacey
The fact of the matter is that we are all living with CF. The adult CFers had mother's didn't they? Their mothers have been dealing with this disease longer than the adult CFers themselves have. I bet they were just as afraid as the new mothers here today. I bet they would have loved to read about adult CFers having careers and families. That is the hope that I found here when I first came to this site. Hope that my child will be able to accomplish all of those things too.
This recent turmoil is not doing anyone any good. Nobody can completely understand another person's situation. It just isn't possible. Those without children can't know the anguish a mother feels when she can't make her baby okay. Those who do not have a terminal illness themselves cannot know how a CFer feels. It really is that simple.
I am just very disappointed with this whole situation.
Stacey
This recent turmoil is not doing anyone any good. Nobody can completely understand another person's situation. It just isn't possible. Those without children can't know the anguish a mother feels when she can't make her baby okay. Those who do not have a terminal illness themselves cannot know how a CFer feels. It really is that simple.
I am just very disappointed with this whole situation.
Stacey
The fact of the matter is that we are all living with CF. The adult CFers had mother's didn't they? Their mothers have been dealing with this disease longer than the adult CFers themselves have. I bet they were just as afraid as the new mothers here today. I bet they would have loved to read about adult CFers having careers and families. That is the hope that I found here when I first came to this site. Hope that my child will be able to accomplish all of those things too.
This recent turmoil is not doing anyone any good. Nobody can completely understand another person's situation. It just isn't possible. Those without children can't know the anguish a mother feels when she can't make her baby okay. Those who do not have a terminal illness themselves cannot know how a CFer feels. It really is that simple.
I am just very disappointed with this whole situation.
Stacey
This recent turmoil is not doing anyone any good. Nobody can completely understand another person's situation. It just isn't possible. Those without children can't know the anguish a mother feels when she can't make her baby okay. Those who do not have a terminal illness themselves cannot know how a CFer feels. It really is that simple.
I am just very disappointed with this whole situation.
Stacey
The fact of the matter is that we are all living with CF. The adult CFers had mother's didn't they? Their mothers have been dealing with this disease longer than the adult CFers themselves have. I bet they were just as afraid as the new mothers here today. I bet they would have loved to read about adult CFers having careers and families. That is the hope that I found here when I first came to this site. Hope that my child will be able to accomplish all of those things too.
This recent turmoil is not doing anyone any good. Nobody can completely understand another person's situation. It just isn't possible. Those without children can't know the anguish a mother feels when she can't make her baby okay. Those who do not have a terminal illness themselves cannot know how a CFer feels. It really is that simple.
I am just very disappointed with this whole situation.
Stacey
This recent turmoil is not doing anyone any good. Nobody can completely understand another person's situation. It just isn't possible. Those without children can't know the anguish a mother feels when she can't make her baby okay. Those who do not have a terminal illness themselves cannot know how a CFer feels. It really is that simple.
I am just very disappointed with this whole situation.
Stacey
The fact of the matter is that we are all living with CF. The adult CFers had mother's didn't they? Their mothers have been dealing with this disease longer than the adult CFers themselves have. I bet they were just as afraid as the new mothers here today. I bet they would have loved to read about adult CFers having careers and families. That is the hope that I found here when I first came to this site. Hope that my child will be able to accomplish all of those things too.
<br />
<br />This recent turmoil is not doing anyone any good. Nobody can completely understand another person's situation. It just isn't possible. Those without children can't know the anguish a mother feels when she can't make her baby okay. Those who do not have a terminal illness themselves cannot know how a CFer feels. It really is that simple.
<br />
<br />I am just very disappointed with this whole situation.
<br />
<br />Stacey
<br />
<br />
<br />
<br />This recent turmoil is not doing anyone any good. Nobody can completely understand another person's situation. It just isn't possible. Those without children can't know the anguish a mother feels when she can't make her baby okay. Those who do not have a terminal illness themselves cannot know how a CFer feels. It really is that simple.
<br />
<br />I am just very disappointed with this whole situation.
<br />
<br />Stacey
<br />
<br />
Transplantmommy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JORDYSMOM</b></i>
Their mothers have been dealing with this disease longer than the adult CFers themselves have.
Stacey</end quote></div>
I find this portion of your statement untrue. The mothers and children have been dealing with it for the same amount of time. A mother cannot deal with the disease until the child is born with it (unless there are other members of the family who have it but in my families case there wasn't). I was the first one ever diagnosed with CF in my family so we have all been dealing with it for the same amount of time.
In any case, I cannot believe that some children's doctors are taking this so lighty!! Have they not seen the children who have still passed at a young age because of it?? I go to a CF clinic in Syracuse, NY and when I found out that I was pregnant one of the reasons I was told to abort the baby was because of the chances of the baby having CF and then I would be a CFer taking care of a baby CFer. It's not that I didn't care, but I figured, what better than a Mom with CF to take care of a baby with CF? I would know what to look for and how to do the medications and CPT. I could not terminate the pregnancy for that reason. For any of you who don't know me (because I am still fairly new here) my son is healthy with no CF.
As for the original topic, I have not been here long enough to notice if this is happening or not but I think that it is definitely best for a Mom of a CFer to learn FROM a CFer. There is one Mom (not on this site) who I am helping right now and she wants to hear all of the good stuff and the bad stuff. Her daughter is having a rough time right now (she's 9) and it helps for her Mom to know that she can pull through it because look at everything that I have been through.
Their mothers have been dealing with this disease longer than the adult CFers themselves have.
Stacey</end quote></div>
I find this portion of your statement untrue. The mothers and children have been dealing with it for the same amount of time. A mother cannot deal with the disease until the child is born with it (unless there are other members of the family who have it but in my families case there wasn't). I was the first one ever diagnosed with CF in my family so we have all been dealing with it for the same amount of time.
In any case, I cannot believe that some children's doctors are taking this so lighty!! Have they not seen the children who have still passed at a young age because of it?? I go to a CF clinic in Syracuse, NY and when I found out that I was pregnant one of the reasons I was told to abort the baby was because of the chances of the baby having CF and then I would be a CFer taking care of a baby CFer. It's not that I didn't care, but I figured, what better than a Mom with CF to take care of a baby with CF? I would know what to look for and how to do the medications and CPT. I could not terminate the pregnancy for that reason. For any of you who don't know me (because I am still fairly new here) my son is healthy with no CF.
As for the original topic, I have not been here long enough to notice if this is happening or not but I think that it is definitely best for a Mom of a CFer to learn FROM a CFer. There is one Mom (not on this site) who I am helping right now and she wants to hear all of the good stuff and the bad stuff. Her daughter is having a rough time right now (she's 9) and it helps for her Mom to know that she can pull through it because look at everything that I have been through.
Transplantmommy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JORDYSMOM</b></i>
Their mothers have been dealing with this disease longer than the adult CFers themselves have.
Stacey</end quote></div>
I find this portion of your statement untrue. The mothers and children have been dealing with it for the same amount of time. A mother cannot deal with the disease until the child is born with it (unless there are other members of the family who have it but in my families case there wasn't). I was the first one ever diagnosed with CF in my family so we have all been dealing with it for the same amount of time.
In any case, I cannot believe that some children's doctors are taking this so lighty!! Have they not seen the children who have still passed at a young age because of it?? I go to a CF clinic in Syracuse, NY and when I found out that I was pregnant one of the reasons I was told to abort the baby was because of the chances of the baby having CF and then I would be a CFer taking care of a baby CFer. It's not that I didn't care, but I figured, what better than a Mom with CF to take care of a baby with CF? I would know what to look for and how to do the medications and CPT. I could not terminate the pregnancy for that reason. For any of you who don't know me (because I am still fairly new here) my son is healthy with no CF.
As for the original topic, I have not been here long enough to notice if this is happening or not but I think that it is definitely best for a Mom of a CFer to learn FROM a CFer. There is one Mom (not on this site) who I am helping right now and she wants to hear all of the good stuff and the bad stuff. Her daughter is having a rough time right now (she's 9) and it helps for her Mom to know that she can pull through it because look at everything that I have been through.
Their mothers have been dealing with this disease longer than the adult CFers themselves have.
Stacey</end quote></div>
I find this portion of your statement untrue. The mothers and children have been dealing with it for the same amount of time. A mother cannot deal with the disease until the child is born with it (unless there are other members of the family who have it but in my families case there wasn't). I was the first one ever diagnosed with CF in my family so we have all been dealing with it for the same amount of time.
In any case, I cannot believe that some children's doctors are taking this so lighty!! Have they not seen the children who have still passed at a young age because of it?? I go to a CF clinic in Syracuse, NY and when I found out that I was pregnant one of the reasons I was told to abort the baby was because of the chances of the baby having CF and then I would be a CFer taking care of a baby CFer. It's not that I didn't care, but I figured, what better than a Mom with CF to take care of a baby with CF? I would know what to look for and how to do the medications and CPT. I could not terminate the pregnancy for that reason. For any of you who don't know me (because I am still fairly new here) my son is healthy with no CF.
As for the original topic, I have not been here long enough to notice if this is happening or not but I think that it is definitely best for a Mom of a CFer to learn FROM a CFer. There is one Mom (not on this site) who I am helping right now and she wants to hear all of the good stuff and the bad stuff. Her daughter is having a rough time right now (she's 9) and it helps for her Mom to know that she can pull through it because look at everything that I have been through.
Transplantmommy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JORDYSMOM</b></i>
Their mothers have been dealing with this disease longer than the adult CFers themselves have.
Stacey</end quote></div>
I find this portion of your statement untrue. The mothers and children have been dealing with it for the same amount of time. A mother cannot deal with the disease until the child is born with it (unless there are other members of the family who have it but in my families case there wasn't). I was the first one ever diagnosed with CF in my family so we have all been dealing with it for the same amount of time.
In any case, I cannot believe that some children's doctors are taking this so lighty!! Have they not seen the children who have still passed at a young age because of it?? I go to a CF clinic in Syracuse, NY and when I found out that I was pregnant one of the reasons I was told to abort the baby was because of the chances of the baby having CF and then I would be a CFer taking care of a baby CFer. It's not that I didn't care, but I figured, what better than a Mom with CF to take care of a baby with CF? I would know what to look for and how to do the medications and CPT. I could not terminate the pregnancy for that reason. For any of you who don't know me (because I am still fairly new here) my son is healthy with no CF.
As for the original topic, I have not been here long enough to notice if this is happening or not but I think that it is definitely best for a Mom of a CFer to learn FROM a CFer. There is one Mom (not on this site) who I am helping right now and she wants to hear all of the good stuff and the bad stuff. Her daughter is having a rough time right now (she's 9) and it helps for her Mom to know that she can pull through it because look at everything that I have been through.
Their mothers have been dealing with this disease longer than the adult CFers themselves have.
Stacey</end quote></div>
I find this portion of your statement untrue. The mothers and children have been dealing with it for the same amount of time. A mother cannot deal with the disease until the child is born with it (unless there are other members of the family who have it but in my families case there wasn't). I was the first one ever diagnosed with CF in my family so we have all been dealing with it for the same amount of time.
In any case, I cannot believe that some children's doctors are taking this so lighty!! Have they not seen the children who have still passed at a young age because of it?? I go to a CF clinic in Syracuse, NY and when I found out that I was pregnant one of the reasons I was told to abort the baby was because of the chances of the baby having CF and then I would be a CFer taking care of a baby CFer. It's not that I didn't care, but I figured, what better than a Mom with CF to take care of a baby with CF? I would know what to look for and how to do the medications and CPT. I could not terminate the pregnancy for that reason. For any of you who don't know me (because I am still fairly new here) my son is healthy with no CF.
As for the original topic, I have not been here long enough to notice if this is happening or not but I think that it is definitely best for a Mom of a CFer to learn FROM a CFer. There is one Mom (not on this site) who I am helping right now and she wants to hear all of the good stuff and the bad stuff. Her daughter is having a rough time right now (she's 9) and it helps for her Mom to know that she can pull through it because look at everything that I have been through.
Transplantmommy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JORDYSMOM</b></i>
Their mothers have been dealing with this disease longer than the adult CFers themselves have.
Stacey</end quote>
I find this portion of your statement untrue. The mothers and children have been dealing with it for the same amount of time. A mother cannot deal with the disease until the child is born with it (unless there are other members of the family who have it but in my families case there wasn't). I was the first one ever diagnosed with CF in my family so we have all been dealing with it for the same amount of time.
In any case, I cannot believe that some children's doctors are taking this so lighty!! Have they not seen the children who have still passed at a young age because of it?? I go to a CF clinic in Syracuse, NY and when I found out that I was pregnant one of the reasons I was told to abort the baby was because of the chances of the baby having CF and then I would be a CFer taking care of a baby CFer. It's not that I didn't care, but I figured, what better than a Mom with CF to take care of a baby with CF? I would know what to look for and how to do the medications and CPT. I could not terminate the pregnancy for that reason. For any of you who don't know me (because I am still fairly new here) my son is healthy with no CF.
As for the original topic, I have not been here long enough to notice if this is happening or not but I think that it is definitely best for a Mom of a CFer to learn FROM a CFer. There is one Mom (not on this site) who I am helping right now and she wants to hear all of the good stuff and the bad stuff. Her daughter is having a rough time right now (she's 9) and it helps for her Mom to know that she can pull through it because look at everything that I have been through.
Their mothers have been dealing with this disease longer than the adult CFers themselves have.
Stacey</end quote>
I find this portion of your statement untrue. The mothers and children have been dealing with it for the same amount of time. A mother cannot deal with the disease until the child is born with it (unless there are other members of the family who have it but in my families case there wasn't). I was the first one ever diagnosed with CF in my family so we have all been dealing with it for the same amount of time.
In any case, I cannot believe that some children's doctors are taking this so lighty!! Have they not seen the children who have still passed at a young age because of it?? I go to a CF clinic in Syracuse, NY and when I found out that I was pregnant one of the reasons I was told to abort the baby was because of the chances of the baby having CF and then I would be a CFer taking care of a baby CFer. It's not that I didn't care, but I figured, what better than a Mom with CF to take care of a baby with CF? I would know what to look for and how to do the medications and CPT. I could not terminate the pregnancy for that reason. For any of you who don't know me (because I am still fairly new here) my son is healthy with no CF.
As for the original topic, I have not been here long enough to notice if this is happening or not but I think that it is definitely best for a Mom of a CFer to learn FROM a CFer. There is one Mom (not on this site) who I am helping right now and she wants to hear all of the good stuff and the bad stuff. Her daughter is having a rough time right now (she's 9) and it helps for her Mom to know that she can pull through it because look at everything that I have been through.
Transplantmommy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JORDYSMOM</b></i>
<br />
<br />Their mothers have been dealing with this disease longer than the adult CFers themselves have.
<br />Stacey</end quote>
<br />
<br />I find this portion of your statement untrue. The mothers and children have been dealing with it for the same amount of time. A mother cannot deal with the disease until the child is born with it (unless there are other members of the family who have it but in my families case there wasn't). I was the first one ever diagnosed with CF in my family so we have all been dealing with it for the same amount of time.
<br />
<br />In any case, I cannot believe that some children's doctors are taking this so lighty!! Have they not seen the children who have still passed at a young age because of it?? I go to a CF clinic in Syracuse, NY and when I found out that I was pregnant one of the reasons I was told to abort the baby was because of the chances of the baby having CF and then I would be a CFer taking care of a baby CFer. It's not that I didn't care, but I figured, what better than a Mom with CF to take care of a baby with CF? I would know what to look for and how to do the medications and CPT. I could not terminate the pregnancy for that reason. For any of you who don't know me (because I am still fairly new here) my son is healthy with no CF.
<br />
<br />As for the original topic, I have not been here long enough to notice if this is happening or not but I think that it is definitely best for a Mom of a CFer to learn FROM a CFer. There is one Mom (not on this site) who I am helping right now and she wants to hear all of the good stuff and the bad stuff. Her daughter is having a rough time right now (she's 9) and it helps for her Mom to know that she can pull through it because look at everything that I have been through.
<br />
<br />
<br />
<br />Their mothers have been dealing with this disease longer than the adult CFers themselves have.
<br />Stacey</end quote>
<br />
<br />I find this portion of your statement untrue. The mothers and children have been dealing with it for the same amount of time. A mother cannot deal with the disease until the child is born with it (unless there are other members of the family who have it but in my families case there wasn't). I was the first one ever diagnosed with CF in my family so we have all been dealing with it for the same amount of time.
<br />
<br />In any case, I cannot believe that some children's doctors are taking this so lighty!! Have they not seen the children who have still passed at a young age because of it?? I go to a CF clinic in Syracuse, NY and when I found out that I was pregnant one of the reasons I was told to abort the baby was because of the chances of the baby having CF and then I would be a CFer taking care of a baby CFer. It's not that I didn't care, but I figured, what better than a Mom with CF to take care of a baby with CF? I would know what to look for and how to do the medications and CPT. I could not terminate the pregnancy for that reason. For any of you who don't know me (because I am still fairly new here) my son is healthy with no CF.
<br />
<br />As for the original topic, I have not been here long enough to notice if this is happening or not but I think that it is definitely best for a Mom of a CFer to learn FROM a CFer. There is one Mom (not on this site) who I am helping right now and she wants to hear all of the good stuff and the bad stuff. Her daughter is having a rough time right now (she's 9) and it helps for her Mom to know that she can pull through it because look at everything that I have been through.
<br />
<br />