mother driving me nuts!

mommy2diego · Mar 8, 2009

I don't know if anybody else has this problem, but it drives me crazy! my mother, despite being a source of support since dianosis, is always understating the boys cf. They are pancreatic sufficient... so she is always referring to them as a "mild case". I am constantly hearing...things like:

"oh, aren't you so lucky you will never have to deal with that"

"aren't you glad the boys just have a mild case"

"you don't have to worry about them getting really sick, they will live perfectly normal lives and live until they are 70 years old, and have as many kids as they want naturely"

This drives me crazy, i know i already said that, but it does. My 7 month old is on his second 2 week hosptialization already, i don't see anything "mild" about that. Yes we are lucky as of now that they don't have weight gain issues, and yes, that is an advantage. But from what I understand, that is no guarantee that that will stay that way.

It drives me nuts the whole labeling of "mild" cases based on pancreatic function. It's not that she's not educated on the subject. She reads tons of books and goes to clinic visits with me sometimes...

but she will read the books or see certain statistics and she's is 100% convinced that my boys are exempt from all of it. In her eyes, CF can't touch them. They are invincible.

The reality of it is, nobody with CF is safe or immune to it...until they find a cure. sure there are preventative measures we can all take, and i know i do...

but i just feel angered when it's not taken seriously. It is very real in my eyes.

Just wondering if anybody has dealt with family members like this, if so, how do you deal with it?

In my eyes, CF is CF. period. why do people try to down play the reality of it all and make me feel like ther is nothing to worry about?

so this is just as much venting as it is a question. any input appreciated.

mommy2diego · Mar 8, 2009

I don't know if anybody else has this problem, but it drives me crazy! my mother, despite being a source of support since dianosis, is always understating the boys cf. They are pancreatic sufficient... so she is always referring to them as a "mild case". I am constantly hearing...things like:

"oh, aren't you so lucky you will never have to deal with that"

"aren't you glad the boys just have a mild case"

"you don't have to worry about them getting really sick, they will live perfectly normal lives and live until they are 70 years old, and have as many kids as they want naturely"

This drives me crazy, i know i already said that, but it does. My 7 month old is on his second 2 week hosptialization already, i don't see anything "mild" about that. Yes we are lucky as of now that they don't have weight gain issues, and yes, that is an advantage. But from what I understand, that is no guarantee that that will stay that way.

It drives me nuts the whole labeling of "mild" cases based on pancreatic function. It's not that she's not educated on the subject. She reads tons of books and goes to clinic visits with me sometimes...

but she will read the books or see certain statistics and she's is 100% convinced that my boys are exempt from all of it. In her eyes, CF can't touch them. They are invincible.

The reality of it is, nobody with CF is safe or immune to it...until they find a cure. sure there are preventative measures we can all take, and i know i do...

but i just feel angered when it's not taken seriously. It is very real in my eyes.

Just wondering if anybody has dealt with family members like this, if so, how do you deal with it?

In my eyes, CF is CF. period. why do people try to down play the reality of it all and make me feel like ther is nothing to worry about?

so this is just as much venting as it is a question. any input appreciated.

mommy2diego · Mar 8, 2009

I don't know if anybody else has this problem, but it drives me crazy! my mother, despite being a source of support since dianosis, is always understating the boys cf. They are pancreatic sufficient... so she is always referring to them as a "mild case". I am constantly hearing...things like:

"oh, aren't you so lucky you will never have to deal with that"

"aren't you glad the boys just have a mild case"

"you don't have to worry about them getting really sick, they will live perfectly normal lives and live until they are 70 years old, and have as many kids as they want naturely"

This drives me crazy, i know i already said that, but it does. My 7 month old is on his second 2 week hosptialization already, i don't see anything "mild" about that. Yes we are lucky as of now that they don't have weight gain issues, and yes, that is an advantage. But from what I understand, that is no guarantee that that will stay that way.

It drives me nuts the whole labeling of "mild" cases based on pancreatic function. It's not that she's not educated on the subject. She reads tons of books and goes to clinic visits with me sometimes...

but she will read the books or see certain statistics and she's is 100% convinced that my boys are exempt from all of it. In her eyes, CF can't touch them. They are invincible.

The reality of it is, nobody with CF is safe or immune to it...until they find a cure. sure there are preventative measures we can all take, and i know i do...

but i just feel angered when it's not taken seriously. It is very real in my eyes.

Just wondering if anybody has dealt with family members like this, if so, how do you deal with it?

In my eyes, CF is CF. period. why do people try to down play the reality of it all and make me feel like ther is nothing to worry about?

so this is just as much venting as it is a question. any input appreciated.

mommy2diego · Mar 8, 2009

I don't know if anybody else has this problem, but it drives me crazy! my mother, despite being a source of support since dianosis, is always understating the boys cf. They are pancreatic sufficient... so she is always referring to them as a "mild case". I am constantly hearing...things like:

"oh, aren't you so lucky you will never have to deal with that"

"aren't you glad the boys just have a mild case"

"you don't have to worry about them getting really sick, they will live perfectly normal lives and live until they are 70 years old, and have as many kids as they want naturely"

This drives me crazy, i know i already said that, but it does. My 7 month old is on his second 2 week hosptialization already, i don't see anything "mild" about that. Yes we are lucky as of now that they don't have weight gain issues, and yes, that is an advantage. But from what I understand, that is no guarantee that that will stay that way.

It drives me nuts the whole labeling of "mild" cases based on pancreatic function. It's not that she's not educated on the subject. She reads tons of books and goes to clinic visits with me sometimes...

but she will read the books or see certain statistics and she's is 100% convinced that my boys are exempt from all of it. In her eyes, CF can't touch them. They are invincible.

The reality of it is, nobody with CF is safe or immune to it...until they find a cure. sure there are preventative measures we can all take, and i know i do...

but i just feel angered when it's not taken seriously. It is very real in my eyes.

Just wondering if anybody has dealt with family members like this, if so, how do you deal with it?

In my eyes, CF is CF. period. why do people try to down play the reality of it all and make me feel like ther is nothing to worry about?

so this is just as much venting as it is a question. any input appreciated.

mommy2diego · Mar 8, 2009

I don't know if anybody else has this problem, but it drives me crazy! my mother, despite being a source of support since dianosis, is always understating the boys cf. They are pancreatic sufficient... so she is always referring to them as a "mild case". I am constantly hearing...things like:
 
 "oh, aren't you so lucky you will never have to deal with that"
 
 "aren't you glad the boys just have a mild case"
 
 "you don't have to worry about them getting really sick, they will live perfectly normal lives and live until they are 70 years old, and have as many kids as they want naturely"
 
 This drives me crazy, i know i already said that, but it does. My 7 month old is on his second 2 week hosptialization already, i don't see anything "mild" about that. Yes we are lucky as of now that they don't have weight gain issues, and yes, that is an advantage. But from what I understand, that is no guarantee that that will stay that way.
 
 It drives me nuts the whole labeling of "mild" cases based on pancreatic function. It's not that she's not educated on the subject. She reads tons of books and goes to clinic visits with me sometimes...
 
 but she will read the books or see certain statistics and she's is 100% convinced that my boys are exempt from all of it. In her eyes, CF can't touch them. They are invincible.
 
 The reality of it is, nobody with CF is safe or immune to it...until they find a cure. sure there are preventative measures we can all take, and i know i do...
 
 but i just feel angered when it's not taken seriously. It is very real in my eyes.
 
 Just wondering if anybody has dealt with family members like this, if so, how do you deal with it?
 
 In my eyes, CF is CF. period. why do people try to down play the reality of it all and make me feel like ther is nothing to worry about?
 
 so this is just as much venting as it is a question. any input appreciated.

saveferris2009 · Mar 8, 2009

Sorry to hear about your frustration.

I'm sure you know this instinctively, but I'll just re-iterate. Denial can be a very strong coping mechanism. Hopefully your mom will come to grips with CF better over time, but for right now, she is coping by really minimizing what's going on .

Has she had a history of coddling you? Maybe she feels the need to soften the blow for you - even if it's by stretching the truth?

I can definitely see how frustrating this must be or you. But gosh it seems like you have a solid head on your shoulders. Taking this head on will only benefit your children both mentally and physically.

saveferris2009 · Mar 8, 2009

Sorry to hear about your frustration.

I'm sure you know this instinctively, but I'll just re-iterate. Denial can be a very strong coping mechanism. Hopefully your mom will come to grips with CF better over time, but for right now, she is coping by really minimizing what's going on .

Has she had a history of coddling you? Maybe she feels the need to soften the blow for you - even if it's by stretching the truth?

I can definitely see how frustrating this must be or you. But gosh it seems like you have a solid head on your shoulders. Taking this head on will only benefit your children both mentally and physically.

saveferris2009 · Mar 8, 2009

Sorry to hear about your frustration.

I'm sure you know this instinctively, but I'll just re-iterate. Denial can be a very strong coping mechanism. Hopefully your mom will come to grips with CF better over time, but for right now, she is coping by really minimizing what's going on .

Has she had a history of coddling you? Maybe she feels the need to soften the blow for you - even if it's by stretching the truth?

I can definitely see how frustrating this must be or you. But gosh it seems like you have a solid head on your shoulders. Taking this head on will only benefit your children both mentally and physically.

saveferris2009 · Mar 8, 2009

Sorry to hear about your frustration.

I'm sure you know this instinctively, but I'll just re-iterate. Denial can be a very strong coping mechanism. Hopefully your mom will come to grips with CF better over time, but for right now, she is coping by really minimizing what's going on .

Has she had a history of coddling you? Maybe she feels the need to soften the blow for you - even if it's by stretching the truth?

I can definitely see how frustrating this must be or you. But gosh it seems like you have a solid head on your shoulders. Taking this head on will only benefit your children both mentally and physically.

saveferris2009 · Mar 8, 2009

Sorry to hear about your frustration.
 
 I'm sure you know this instinctively, but I'll just re-iterate. Denial can be a very strong coping mechanism. Hopefully your mom will come to grips with CF better over time, but for right now, she is coping by really minimizing what's going on .
 
 Has she had a history of coddling you? Maybe she feels the need to soften the blow for you - even if it's by stretching the truth?
 
 I can definitely see how frustrating this must be or you. But gosh it seems like you have a solid head on your shoulders. Taking this head on will only benefit your children both mentally and physically.

letefk · Mar 8, 2009

Andrea,

I don't have any advice, but I can identify. I went through something similar with my mother. Both of my girls have an atypical form of CF; both are pancreatic sufficient. In time, I came to realize that everyone who loved my children was grieving in different ways. For me, I needed to confront the start reality. I needed to face the worst so I could move past it and find a way to live with the fear of losing my children. My mother, however, coped by clinging to the idea that they had "mild" CF. It was a long process for that to change; I suppose one of things that helped was leaving her in care of the girls for a while. When she saw what the routine of our lives was, that made her recognize the ways CF had totally reordered our reality.

When the girls were younger, I heard a lot about how they were going to "grow out" of it; not that they would outgrow CF, but that somehow they would get stronger and more able to fight the disease. This year, my oldest had her first big decline in lung function, and I think that was what really made it real to many in my family, although I still have a sister-in-law that does not get it (when I am less charitable, I think it is just that she is too self-absorbed to care).

What I came to realize about my own mother, though, was that she was dealing with two different layers of grief, and that was a big part of how she responded. First, there was the news about her grandchildren. But there was also her feelings about what this was doing to me. My mother is not really good at dealing with her emotions. She lost her brother when she was about 20, and her whole family responded by just repressing the pain of his death. Her comments to me were from the same impulse. She was downplaying it, not because she did not care, but because she did not know how to confront the reality.

I think this is the loneliest part of parenting for me. Although I have supportive and loving friends and family, they often don't understand my need to confront what I fear most. They want to cheer me up or help me look on the bright side, when what I most need is a safe place to explore how deeply it hurts to live with the fear that I will outlive my child. I can't explore those feelings with my daughters, at least not yet, but I need some place where I can face them. When the people I love try to "look on the bright side," it feels like it is dismissing that fear, and although they mean the best, it can hurt and it can make me angry.

letefk · Mar 8, 2009

Andrea,

I don't have any advice, but I can identify. I went through something similar with my mother. Both of my girls have an atypical form of CF; both are pancreatic sufficient. In time, I came to realize that everyone who loved my children was grieving in different ways. For me, I needed to confront the start reality. I needed to face the worst so I could move past it and find a way to live with the fear of losing my children. My mother, however, coped by clinging to the idea that they had "mild" CF. It was a long process for that to change; I suppose one of things that helped was leaving her in care of the girls for a while. When she saw what the routine of our lives was, that made her recognize the ways CF had totally reordered our reality.

When the girls were younger, I heard a lot about how they were going to "grow out" of it; not that they would outgrow CF, but that somehow they would get stronger and more able to fight the disease. This year, my oldest had her first big decline in lung function, and I think that was what really made it real to many in my family, although I still have a sister-in-law that does not get it (when I am less charitable, I think it is just that she is too self-absorbed to care).

What I came to realize about my own mother, though, was that she was dealing with two different layers of grief, and that was a big part of how she responded. First, there was the news about her grandchildren. But there was also her feelings about what this was doing to me. My mother is not really good at dealing with her emotions. She lost her brother when she was about 20, and her whole family responded by just repressing the pain of his death. Her comments to me were from the same impulse. She was downplaying it, not because she did not care, but because she did not know how to confront the reality.

I think this is the loneliest part of parenting for me. Although I have supportive and loving friends and family, they often don't understand my need to confront what I fear most. They want to cheer me up or help me look on the bright side, when what I most need is a safe place to explore how deeply it hurts to live with the fear that I will outlive my child. I can't explore those feelings with my daughters, at least not yet, but I need some place where I can face them. When the people I love try to "look on the bright side," it feels like it is dismissing that fear, and although they mean the best, it can hurt and it can make me angry.

letefk · Mar 8, 2009

Andrea,

I don't have any advice, but I can identify. I went through something similar with my mother. Both of my girls have an atypical form of CF; both are pancreatic sufficient. In time, I came to realize that everyone who loved my children was grieving in different ways. For me, I needed to confront the start reality. I needed to face the worst so I could move past it and find a way to live with the fear of losing my children. My mother, however, coped by clinging to the idea that they had "mild" CF. It was a long process for that to change; I suppose one of things that helped was leaving her in care of the girls for a while. When she saw what the routine of our lives was, that made her recognize the ways CF had totally reordered our reality.

When the girls were younger, I heard a lot about how they were going to "grow out" of it; not that they would outgrow CF, but that somehow they would get stronger and more able to fight the disease. This year, my oldest had her first big decline in lung function, and I think that was what really made it real to many in my family, although I still have a sister-in-law that does not get it (when I am less charitable, I think it is just that she is too self-absorbed to care).

What I came to realize about my own mother, though, was that she was dealing with two different layers of grief, and that was a big part of how she responded. First, there was the news about her grandchildren. But there was also her feelings about what this was doing to me. My mother is not really good at dealing with her emotions. She lost her brother when she was about 20, and her whole family responded by just repressing the pain of his death. Her comments to me were from the same impulse. She was downplaying it, not because she did not care, but because she did not know how to confront the reality.

I think this is the loneliest part of parenting for me. Although I have supportive and loving friends and family, they often don't understand my need to confront what I fear most. They want to cheer me up or help me look on the bright side, when what I most need is a safe place to explore how deeply it hurts to live with the fear that I will outlive my child. I can't explore those feelings with my daughters, at least not yet, but I need some place where I can face them. When the people I love try to "look on the bright side," it feels like it is dismissing that fear, and although they mean the best, it can hurt and it can make me angry.

letefk · Mar 8, 2009

Andrea,

I don't have any advice, but I can identify. I went through something similar with my mother. Both of my girls have an atypical form of CF; both are pancreatic sufficient. In time, I came to realize that everyone who loved my children was grieving in different ways. For me, I needed to confront the start reality. I needed to face the worst so I could move past it and find a way to live with the fear of losing my children. My mother, however, coped by clinging to the idea that they had "mild" CF. It was a long process for that to change; I suppose one of things that helped was leaving her in care of the girls for a while. When she saw what the routine of our lives was, that made her recognize the ways CF had totally reordered our reality.

When the girls were younger, I heard a lot about how they were going to "grow out" of it; not that they would outgrow CF, but that somehow they would get stronger and more able to fight the disease. This year, my oldest had her first big decline in lung function, and I think that was what really made it real to many in my family, although I still have a sister-in-law that does not get it (when I am less charitable, I think it is just that she is too self-absorbed to care).

What I came to realize about my own mother, though, was that she was dealing with two different layers of grief, and that was a big part of how she responded. First, there was the news about her grandchildren. But there was also her feelings about what this was doing to me. My mother is not really good at dealing with her emotions. She lost her brother when she was about 20, and her whole family responded by just repressing the pain of his death. Her comments to me were from the same impulse. She was downplaying it, not because she did not care, but because she did not know how to confront the reality.

I think this is the loneliest part of parenting for me. Although I have supportive and loving friends and family, they often don't understand my need to confront what I fear most. They want to cheer me up or help me look on the bright side, when what I most need is a safe place to explore how deeply it hurts to live with the fear that I will outlive my child. I can't explore those feelings with my daughters, at least not yet, but I need some place where I can face them. When the people I love try to "look on the bright side," it feels like it is dismissing that fear, and although they mean the best, it can hurt and it can make me angry.

letefk · Mar 8, 2009

Andrea,
 
 I don't have any advice, but I can identify. I went through something similar with my mother. Both of my girls have an atypical form of CF; both are pancreatic sufficient. In time, I came to realize that everyone who loved my children was grieving in different ways. For me, I needed to confront the start reality. I needed to face the worst so I could move past it and find a way to live with the fear of losing my children. My mother, however, coped by clinging to the idea that they had "mild" CF. It was a long process for that to change; I suppose one of things that helped was leaving her in care of the girls for a while. When she saw what the routine of our lives was, that made her recognize the ways CF had totally reordered our reality.
 
 When the girls were younger, I heard a lot about how they were going to "grow out" of it; not that they would outgrow CF, but that somehow they would get stronger and more able to fight the disease. This year, my oldest had her first big decline in lung function, and I think that was what really made it real to many in my family, although I still have a sister-in-law that does not get it (when I am less charitable, I think it is just that she is too self-absorbed to care).
 
 What I came to realize about my own mother, though, was that she was dealing with two different layers of grief, and that was a big part of how she responded. First, there was the news about her grandchildren. But there was also her feelings about what this was doing to me. My mother is not really good at dealing with her emotions. She lost her brother when she was about 20, and her whole family responded by just repressing the pain of his death. Her comments to me were from the same impulse. She was downplaying it, not because she did not care, but because she did not know how to confront the reality.
 
 I think this is the loneliest part of parenting for me. Although I have supportive and loving friends and family, they often don't understand my need to confront what I fear most. They want to cheer me up or help me look on the bright side, when what I most need is a safe place to explore how deeply it hurts to live with the fear that I will outlive my child. I can't explore those feelings with my daughters, at least not yet, but I need some place where I can face them. When the people I love try to "look on the bright side," it feels like it is dismissing that fear, and although they mean the best, it can hurt and it can make me angry.

hmw · Mar 8, 2009

I am so sorry you are going through this, Andrea. I can understand how frustrating this must be for you. I have faced some lack of understanding (ok, frank denial) from some of the people close to us too... and I think in some cases it's for the same reason you've encountered with your boys: Emily is much more symptomatic in one area than she is in others and thus 'it can't REALLY be the 'bad' kind of CF, can it?' (Yeah, whatever. The only 'good' kind is the kind that will be able to be cured!)

I would certainly agree that your baby could be in the 100% for weight and lung involvement causing so much illness in just 7 months of life blows the concept of 'mild' straight out of the water. <img src="i/expressions/face-icon-small-sad.gif" border="0"> This disease presents in so many ways! I truly hope that as time goes by your boys all STAY ok when it comes to digestive stuff, but no, there are no guarantees and that is so hard to live with when it comes to this.

It's such a hard thing... obviously, we need to have a positive outlook in order to be able to get through our days & raise our kids in a healthy environment. But on the other side, we need to be realistic and to have our fears and feelings minimized is just the worst thing people can do to us. Fear and worry about the future is NORMAL. Every parent on the face of the earth worries about their child. Parents of healthy kids worry about whether they will get involved with drugs, alcohol, the wrong friends, have school problems, etc. Yet if we have concerns over our child's at-present's incurable disease, we are considered to be negative and in need of all manner of intervention. *sigh of disgust & frustration.*

<div class="FTQUOTE"><begin quote>I think this is the loneliest part of parenting for me. Although I have supportive and loving friends and family, they often don't understand my need to confront what I fear most. They want to cheer me up or help me look on the bright side, when what I most need is a safe place to explore how deeply it hurts to live with the fear that I will outlive my child. I can't explore those feelings with my daughters, at least not yet, but I need some place where I can face them. When the people I love try to "look on the bright side," it feels like it is dismissing that fear, and although they mean the best, it can hurt and it can make me angry.</end quote></div>
Oh goodness, this expresses how I feel so well too...

hmw · Mar 8, 2009

I am so sorry you are going through this, Andrea. I can understand how frustrating this must be for you. I have faced some lack of understanding (ok, frank denial) from some of the people close to us too... and I think in some cases it's for the same reason you've encountered with your boys: Emily is much more symptomatic in one area than she is in others and thus 'it can't REALLY be the 'bad' kind of CF, can it?' (Yeah, whatever. The only 'good' kind is the kind that will be able to be cured!)

I would certainly agree that your baby could be in the 100% for weight and lung involvement causing so much illness in just 7 months of life blows the concept of 'mild' straight out of the water. <img src="i/expressions/face-icon-small-sad.gif" border="0"> This disease presents in so many ways! I truly hope that as time goes by your boys all STAY ok when it comes to digestive stuff, but no, there are no guarantees and that is so hard to live with when it comes to this.

It's such a hard thing... obviously, we need to have a positive outlook in order to be able to get through our days & raise our kids in a healthy environment. But on the other side, we need to be realistic and to have our fears and feelings minimized is just the worst thing people can do to us. Fear and worry about the future is NORMAL. Every parent on the face of the earth worries about their child. Parents of healthy kids worry about whether they will get involved with drugs, alcohol, the wrong friends, have school problems, etc. Yet if we have concerns over our child's at-present's incurable disease, we are considered to be negative and in need of all manner of intervention. *sigh of disgust & frustration.*

<div class="FTQUOTE"><begin quote>I think this is the loneliest part of parenting for me. Although I have supportive and loving friends and family, they often don't understand my need to confront what I fear most. They want to cheer me up or help me look on the bright side, when what I most need is a safe place to explore how deeply it hurts to live with the fear that I will outlive my child. I can't explore those feelings with my daughters, at least not yet, but I need some place where I can face them. When the people I love try to "look on the bright side," it feels like it is dismissing that fear, and although they mean the best, it can hurt and it can make me angry.</end quote></div>
Oh goodness, this expresses how I feel so well too...

hmw · Mar 8, 2009

I am so sorry you are going through this, Andrea. I can understand how frustrating this must be for you. I have faced some lack of understanding (ok, frank denial) from some of the people close to us too... and I think in some cases it's for the same reason you've encountered with your boys: Emily is much more symptomatic in one area than she is in others and thus 'it can't REALLY be the 'bad' kind of CF, can it?' (Yeah, whatever. The only 'good' kind is the kind that will be able to be cured!)

I would certainly agree that your baby could be in the 100% for weight and lung involvement causing so much illness in just 7 months of life blows the concept of 'mild' straight out of the water. <img src="i/expressions/face-icon-small-sad.gif" border="0"> This disease presents in so many ways! I truly hope that as time goes by your boys all STAY ok when it comes to digestive stuff, but no, there are no guarantees and that is so hard to live with when it comes to this.

It's such a hard thing... obviously, we need to have a positive outlook in order to be able to get through our days & raise our kids in a healthy environment. But on the other side, we need to be realistic and to have our fears and feelings minimized is just the worst thing people can do to us. Fear and worry about the future is NORMAL. Every parent on the face of the earth worries about their child. Parents of healthy kids worry about whether they will get involved with drugs, alcohol, the wrong friends, have school problems, etc. Yet if we have concerns over our child's at-present's incurable disease, we are considered to be negative and in need of all manner of intervention. *sigh of disgust & frustration.*

<div class="FTQUOTE"><begin quote>I think this is the loneliest part of parenting for me. Although I have supportive and loving friends and family, they often don't understand my need to confront what I fear most. They want to cheer me up or help me look on the bright side, when what I most need is a safe place to explore how deeply it hurts to live with the fear that I will outlive my child. I can't explore those feelings with my daughters, at least not yet, but I need some place where I can face them. When the people I love try to "look on the bright side," it feels like it is dismissing that fear, and although they mean the best, it can hurt and it can make me angry.</end quote></div>
Oh goodness, this expresses how I feel so well too...

hmw · Mar 8, 2009

I am so sorry you are going through this, Andrea. I can understand how frustrating this must be for you. I have faced some lack of understanding (ok, frank denial) from some of the people close to us too... and I think in some cases it's for the same reason you've encountered with your boys: Emily is much more symptomatic in one area than she is in others and thus 'it can't REALLY be the 'bad' kind of CF, can it?' (Yeah, whatever. The only 'good' kind is the kind that will be able to be cured!)

I would certainly agree that your baby could be in the 100% for weight and lung involvement causing so much illness in just 7 months of life blows the concept of 'mild' straight out of the water. <img src="i/expressions/face-icon-small-sad.gif" border="0"> This disease presents in so many ways! I truly hope that as time goes by your boys all STAY ok when it comes to digestive stuff, but no, there are no guarantees and that is so hard to live with when it comes to this.

It's such a hard thing... obviously, we need to have a positive outlook in order to be able to get through our days & raise our kids in a healthy environment. But on the other side, we need to be realistic and to have our fears and feelings minimized is just the worst thing people can do to us. Fear and worry about the future is NORMAL. Every parent on the face of the earth worries about their child. Parents of healthy kids worry about whether they will get involved with drugs, alcohol, the wrong friends, have school problems, etc. Yet if we have concerns over our child's at-present's incurable disease, we are considered to be negative and in need of all manner of intervention. *sigh of disgust & frustration.*

<div class="FTQUOTE"><begin quote>I think this is the loneliest part of parenting for me. Although I have supportive and loving friends and family, they often don't understand my need to confront what I fear most. They want to cheer me up or help me look on the bright side, when what I most need is a safe place to explore how deeply it hurts to live with the fear that I will outlive my child. I can't explore those feelings with my daughters, at least not yet, but I need some place where I can face them. When the people I love try to "look on the bright side," it feels like it is dismissing that fear, and although they mean the best, it can hurt and it can make me angry.</end quote>
Oh goodness, this expresses how I feel so well too...

hmw · Mar 8, 2009

I am so sorry you are going through this, Andrea. I can understand how frustrating this must be for you. I have faced some lack of understanding (ok, frank denial) from some of the people close to us too... and I think in some cases it's for the same reason you've encountered with your boys: Emily is much more symptomatic in one area than she is in others and thus 'it can't REALLY be the 'bad' kind of CF, can it?' (Yeah, whatever. The only 'good' kind is the kind that will be able to be cured!)
 
 I would certainly agree that your baby could be in the 100% for weight and lung involvement causing so much illness in just 7 months of life blows the concept of 'mild' straight out of the water. <img src="i/expressions/face-icon-small-sad.gif" border="0"> This disease presents in so many ways! I truly hope that as time goes by your boys all STAY ok when it comes to digestive stuff, but no, there are no guarantees and that is so hard to live with when it comes to this.
 
 It's such a hard thing... obviously, we need to have a positive outlook in order to be able to get through our days & raise our kids in a healthy environment. But on the other side, we need to be realistic and to have our fears and feelings minimized is just the worst thing people can do to us. Fear and worry about the future is NORMAL. Every parent on the face of the earth worries about their child. Parents of healthy kids worry about whether they will get involved with drugs, alcohol, the wrong friends, have school problems, etc. Yet if we have concerns over our child's at-present's incurable disease, we are considered to be negative and in need of all manner of intervention. *sigh of disgust & frustration.*
 
 
 <div class="FTQUOTE"><begin quote>I think this is the loneliest part of parenting for me. Although I have supportive and loving friends and family, they often don't understand my need to confront what I fear most. They want to cheer me up or help me look on the bright side, when what I most need is a safe place to explore how deeply it hurts to live with the fear that I will outlive my child. I can't explore those feelings with my daughters, at least not yet, but I need some place where I can face them. When the people I love try to "look on the bright side," it feels like it is dismissing that fear, and although they mean the best, it can hurt and it can make me angry.</end quote>
 Oh goodness, this expresses how I feel so well too...

mother driving me nuts!

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