To speak of CF or not...

[lemonstolemonade]

As always, Heather, it seems that you and I are on the same
wavelength. It has been a struggle. We are pitied even in our
pedi's office. Our infant is doing very well and we have high hopes
that she will never show symptoms, but it is amazing to me how
inconsiderate folks can be when they talk about CF related deaths.
I think it has to do with lack of education, experience, and tact
on their part.<br>
<br>
Things that even make me cringe...the respiratory tech at our last
appointment said, "hum...interesting," after listening to
our infant's chest and then she walked out! I was panic-stricken.
The doctor had nothing to say about it, but my husband and I both
agree that next time we'll call her on it right there.<br>
<br>
What do you do? I'm proactive in telling folks that we have a
genetic diagnosis of CF, but, like your daughter, we're doing great
and we are hopeful. There are folks who think we are germaphobes
now because we carry antibac everywhere we go. Until folks want to
be educated and want to see our children as a child, not a horrible
disease, I'm afraid that we'll continue getting those sort of
comments.<br>
<br>
I'm learning I need to grow a thick skin. Maybe we need to start a
thread of oneliners to use to retort to these folks. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Life is
hard enough on us as parents to keep our child's CF diagnosis to
ourselves. I believe the more that know, the better, however, we
have got to make people understand it isn't a death sentence any
longer for the majority. It is just our way of life now. Have you
all noticed the dynamics of your friendships change as well? What
about family ones? Ok, I'm hijacking. SORRY! Don't answer. But
those were the hardest things for us to overcome...<br>
<br>
Thanks you all for posting. This is a great thread.<br>
<br>
A

 

[lemonstolemonade]

As always, Heather, it seems that you and I are on the same
wavelength. It has been a struggle. We are pitied even in our
pedi's office. Our infant is doing very well and we have high hopes
that she will never show symptoms, but it is amazing to me how
inconsiderate folks can be when they talk about CF related deaths.
I think it has to do with lack of education, experience, and tact
on their part.<br>
<br>
Things that even make me cringe...the respiratory tech at our last
appointment said, "hum...interesting," after listening to
our infant's chest and then she walked out! I was panic-stricken.
The doctor had nothing to say about it, but my husband and I both
agree that next time we'll call her on it right there.<br>
<br>
What do you do? I'm proactive in telling folks that we have a
genetic diagnosis of CF, but, like your daughter, we're doing great
and we are hopeful. There are folks who think we are germaphobes
now because we carry antibac everywhere we go. Until folks want to
be educated and want to see our children as a child, not a horrible
disease, I'm afraid that we'll continue getting those sort of
comments.<br>
<br>
I'm learning I need to grow a thick skin. Maybe we need to start a
thread of oneliners to use to retort to these folks. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Life is
hard enough on us as parents to keep our child's CF diagnosis to
ourselves. I believe the more that know, the better, however, we
have got to make people understand it isn't a death sentence any
longer for the majority. It is just our way of life now. Have you
all noticed the dynamics of your friendships change as well? What
about family ones? Ok, I'm hijacking. SORRY! Don't answer. But
those were the hardest things for us to overcome...<br>
<br>
Thanks you all for posting. This is a great thread.<br>
<br>
A

 

[izemmom]

I agree - this is a GREAT topic.

Up until very recently, I could not stop myself from bringing up Emily's cf to anyone who would listen. Innocent comments from the deli lady at the grocery store like, "How old is she? Oh, she's so tiny..." Would get an explanation of cf. I mean, I told everybody!!!!! I think it was my way of processing it. Making the unreal real somehow. Like maybe if I said it out loud enough times I would finally start beleiving it.

But then the pity looks started to get to me. A well-meaning neighbor told me that her 4-year old goes around telling everyone they know that there is a baby next door who is "Really really sick." That pissed me off. Emily is healither than thier kids whose noses run perpetually! But what do I say to that...,"No, she's not very sick?" How do you make people understand?

In the pediatricians office tonight (for the 3rd double ear infection in 2 months - tubes, here we come!!!), our doctor and nurse both made comments and facial expressions that were loaded with "Poor you, to have this on top of eveything else..." And again, I know they meant well. But I said (in kind of a snippy way, I'm afraid) "Well, kids get ear infections, there's not much you can do. And Emily will need to get pretty used to being poked and prodded so we might as well get her used to it now." They looked offended and I felt bad, but shouldn't medical professionals realize that pity does no one any good?

I don't mean to be totally negative. In all fairness I have to say that some amazing things have hapened to me when I have told others about Emily.
For example, I met another cf mom iin a class I was taking because I just had to talk about cf in my into of myself... She has turned out to be a huge support.

So I don't know, either. When is it safe to tell and when is it best left unsaid? I am definately getting over the NEED to make others know. I guess that means that I'm getting more comfortable with this just being part of our lives.

As for the crying - there has not been a day since Emily was born that I did not cry, even if just for a few minutes, about her cf. Sometimes it's fear, usually its grief for the things that will probably not be, sometimes it's anger, and usually it all stems from exhaustion. This is HARD work. I am very glad to read every's post to this thread and realize, as I do almost everytime I come to the site, that I am not alone.

Sorry for the rant. I feel better now, thanks.

 

[izemmom]

I agree - this is a GREAT topic.

Up until very recently, I could not stop myself from bringing up Emily's cf to anyone who would listen. Innocent comments from the deli lady at the grocery store like, "How old is she? Oh, she's so tiny..." Would get an explanation of cf. I mean, I told everybody!!!!! I think it was my way of processing it. Making the unreal real somehow. Like maybe if I said it out loud enough times I would finally start beleiving it.

But then the pity looks started to get to me. A well-meaning neighbor told me that her 4-year old goes around telling everyone they know that there is a baby next door who is "Really really sick." That pissed me off. Emily is healither than thier kids whose noses run perpetually! But what do I say to that...,"No, she's not very sick?" How do you make people understand?

In the pediatricians office tonight (for the 3rd double ear infection in 2 months - tubes, here we come!!!), our doctor and nurse both made comments and facial expressions that were loaded with "Poor you, to have this on top of eveything else..." And again, I know they meant well. But I said (in kind of a snippy way, I'm afraid) "Well, kids get ear infections, there's not much you can do. And Emily will need to get pretty used to being poked and prodded so we might as well get her used to it now." They looked offended and I felt bad, but shouldn't medical professionals realize that pity does no one any good?

I don't mean to be totally negative. In all fairness I have to say that some amazing things have hapened to me when I have told others about Emily.
For example, I met another cf mom iin a class I was taking because I just had to talk about cf in my into of myself... She has turned out to be a huge support.

So I don't know, either. When is it safe to tell and when is it best left unsaid? I am definately getting over the NEED to make others know. I guess that means that I'm getting more comfortable with this just being part of our lives.

As for the crying - there has not been a day since Emily was born that I did not cry, even if just for a few minutes, about her cf. Sometimes it's fear, usually its grief for the things that will probably not be, sometimes it's anger, and usually it all stems from exhaustion. This is HARD work. I am very glad to read every's post to this thread and realize, as I do almost everytime I come to the site, that I am not alone.

Sorry for the rant. I feel better now, thanks.

 

[izemmom]

I agree - this is a GREAT topic.

Up until very recently, I could not stop myself from bringing up Emily's cf to anyone who would listen. Innocent comments from the deli lady at the grocery store like, "How old is she? Oh, she's so tiny..." Would get an explanation of cf. I mean, I told everybody!!!!! I think it was my way of processing it. Making the unreal real somehow. Like maybe if I said it out loud enough times I would finally start beleiving it.

But then the pity looks started to get to me. A well-meaning neighbor told me that her 4-year old goes around telling everyone they know that there is a baby next door who is "Really really sick." That pissed me off. Emily is healither than thier kids whose noses run perpetually! But what do I say to that...,"No, she's not very sick?" How do you make people understand?

In the pediatricians office tonight (for the 3rd double ear infection in 2 months - tubes, here we come!!!), our doctor and nurse both made comments and facial expressions that were loaded with "Poor you, to have this on top of eveything else..." And again, I know they meant well. But I said (in kind of a snippy way, I'm afraid) "Well, kids get ear infections, there's not much you can do. And Emily will need to get pretty used to being poked and prodded so we might as well get her used to it now." They looked offended and I felt bad, but shouldn't medical professionals realize that pity does no one any good?

I don't mean to be totally negative. In all fairness I have to say that some amazing things have hapened to me when I have told others about Emily.
For example, I met another cf mom iin a class I was taking because I just had to talk about cf in my into of myself... She has turned out to be a huge support.

So I don't know, either. When is it safe to tell and when is it best left unsaid? I am definately getting over the NEED to make others know. I guess that means that I'm getting more comfortable with this just being part of our lives.

As for the crying - there has not been a day since Emily was born that I did not cry, even if just for a few minutes, about her cf. Sometimes it's fear, usually its grief for the things that will probably not be, sometimes it's anger, and usually it all stems from exhaustion. This is HARD work. I am very glad to read every's post to this thread and realize, as I do almost everytime I come to the site, that I am not alone.

Sorry for the rant. I feel better now, thanks.

 

[JRPandTJP]

I think when I bring it up it is like I'm just wishing I had a real, in the flesh friend who could understand that somedays I really don't want to do his treatments (though I'm thankful for them) and that I am tired of awaiting the day he will look at me and say "why doesn't Dooolia (Julia, his sister) have to do ducky and giggle vest?" His innocence is melting away before my very eyes and I know as he gets older he will be aware he is different...perhaps that is what is sneaking up on me now.

I am going to be at a party tomorrow and this is a group of people who have watched him from his very first halloween with an NG tube fresh from the hospital, to tenatious 2 year old he is today. The past few parties I seem to get cornered by everyone at some point with "how is Ben?" question. Not what is Ben up to these days...what is his favorite toy or activity...but how is he (with a hint of apprehension because they really don't want to know). I just want to go to the *bleepin* party and have fun. I don't want to educate people, I don't want to report his status, and I don't want to feel bad when I leave. I want to be the freakin' good witch from wizard of oz and eat candy with the kids. I always try to surround myself with the kids because they don't ask, they just play and laugh.

I just want to BE and it is very hard some times. People, good hearted or not, just wish they could make it go away for us. I would not numb these often challenging emotions though, for sometimes, just sometimes, I feel it enhances the depth of my love toward others. Weird, huh? I do often feel I need a safe place to be heard and find it helpful to talk to someone about it all from time to time (like you guys).

I know you are all here and without this place, I would be lost. I just wish I could really know each of you...the internet is great but it is hard not to have the personal connection at times like this.

Thank you all for sharing, it has helped more than you know. Guess what Ben is this halloween? The LION from Oz....badge of courage and all ;-)

Jody

 

[JRPandTJP]

I think when I bring it up it is like I'm just wishing I had a real, in the flesh friend who could understand that somedays I really don't want to do his treatments (though I'm thankful for them) and that I am tired of awaiting the day he will look at me and say "why doesn't Dooolia (Julia, his sister) have to do ducky and giggle vest?" His innocence is melting away before my very eyes and I know as he gets older he will be aware he is different...perhaps that is what is sneaking up on me now.

I am going to be at a party tomorrow and this is a group of people who have watched him from his very first halloween with an NG tube fresh from the hospital, to tenatious 2 year old he is today. The past few parties I seem to get cornered by everyone at some point with "how is Ben?" question. Not what is Ben up to these days...what is his favorite toy or activity...but how is he (with a hint of apprehension because they really don't want to know). I just want to go to the *bleepin* party and have fun. I don't want to educate people, I don't want to report his status, and I don't want to feel bad when I leave. I want to be the freakin' good witch from wizard of oz and eat candy with the kids. I always try to surround myself with the kids because they don't ask, they just play and laugh.

I just want to BE and it is very hard some times. People, good hearted or not, just wish they could make it go away for us. I would not numb these often challenging emotions though, for sometimes, just sometimes, I feel it enhances the depth of my love toward others. Weird, huh? I do often feel I need a safe place to be heard and find it helpful to talk to someone about it all from time to time (like you guys).

I know you are all here and without this place, I would be lost. I just wish I could really know each of you...the internet is great but it is hard not to have the personal connection at times like this.

Thank you all for sharing, it has helped more than you know. Guess what Ben is this halloween? The LION from Oz....badge of courage and all ;-)

Jody

 

[JRPandTJP]

I think when I bring it up it is like I'm just wishing I had a real, in the flesh friend who could understand that somedays I really don't want to do his treatments (though I'm thankful for them) and that I am tired of awaiting the day he will look at me and say "why doesn't Dooolia (Julia, his sister) have to do ducky and giggle vest?" His innocence is melting away before my very eyes and I know as he gets older he will be aware he is different...perhaps that is what is sneaking up on me now.

I am going to be at a party tomorrow and this is a group of people who have watched him from his very first halloween with an NG tube fresh from the hospital, to tenatious 2 year old he is today. The past few parties I seem to get cornered by everyone at some point with "how is Ben?" question. Not what is Ben up to these days...what is his favorite toy or activity...but how is he (with a hint of apprehension because they really don't want to know). I just want to go to the *bleepin* party and have fun. I don't want to educate people, I don't want to report his status, and I don't want to feel bad when I leave. I want to be the freakin' good witch from wizard of oz and eat candy with the kids. I always try to surround myself with the kids because they don't ask, they just play and laugh.

I just want to BE and it is very hard some times. People, good hearted or not, just wish they could make it go away for us. I would not numb these often challenging emotions though, for sometimes, just sometimes, I feel it enhances the depth of my love toward others. Weird, huh? I do often feel I need a safe place to be heard and find it helpful to talk to someone about it all from time to time (like you guys).

I know you are all here and without this place, I would be lost. I just wish I could really know each of you...the internet is great but it is hard not to have the personal connection at times like this.

Thank you all for sharing, it has helped more than you know. Guess what Ben is this halloween? The LION from Oz....badge of courage and all ;-)

Jody

 

[DEES4]

Jody,
I wish also that I had an "in the flesh" friend who really understands. I do believe my best friend tries to understand but until you have actually lived it you cannot truly understand. She cries with me in the bad times and rejoices with me in the good times but really understanding it...I don't think so. I guess my mom is the closest person I know personally who understands. I know she loves Sawyer as much as I do. The thing about her is I don't want to unload on her when I am down...it's too close to her heart and what's the point of getting her down with me?
I really hope you can just have fun at the party today. We are also going to a party today at my brother's house. They are just more people who really love us but just don't get it. My brother and his wife have a son just two weeks younger than Sawyer. It is tough sometimes to be around them....I love them so much but they just dont get it either. What really gets on my nerves alot is hearing people whine about their kid having an ear infection or a stomach virus....I don't mean to sound like I don't care about other peoples problems. I guess it's just that I wish that is all I had to worry about! Anyway I think I am just rambling now so I will stop!!!! Try to have fun at your party.....and I bet Ben looks adorable in his Lion costume!!
Carrie

 

[DEES4]

Jody,
I wish also that I had an "in the flesh" friend who really understands. I do believe my best friend tries to understand but until you have actually lived it you cannot truly understand. She cries with me in the bad times and rejoices with me in the good times but really understanding it...I don't think so. I guess my mom is the closest person I know personally who understands. I know she loves Sawyer as much as I do. The thing about her is I don't want to unload on her when I am down...it's too close to her heart and what's the point of getting her down with me?
I really hope you can just have fun at the party today. We are also going to a party today at my brother's house. They are just more people who really love us but just don't get it. My brother and his wife have a son just two weeks younger than Sawyer. It is tough sometimes to be around them....I love them so much but they just dont get it either. What really gets on my nerves alot is hearing people whine about their kid having an ear infection or a stomach virus....I don't mean to sound like I don't care about other peoples problems. I guess it's just that I wish that is all I had to worry about! Anyway I think I am just rambling now so I will stop!!!! Try to have fun at your party.....and I bet Ben looks adorable in his Lion costume!!
Carrie

 

[DEES4]

Jody,
I wish also that I had an "in the flesh" friend who really understands. I do believe my best friend tries to understand but until you have actually lived it you cannot truly understand. She cries with me in the bad times and rejoices with me in the good times but really understanding it...I don't think so. I guess my mom is the closest person I know personally who understands. I know she loves Sawyer as much as I do. The thing about her is I don't want to unload on her when I am down...it's too close to her heart and what's the point of getting her down with me?
I really hope you can just have fun at the party today. We are also going to a party today at my brother's house. They are just more people who really love us but just don't get it. My brother and his wife have a son just two weeks younger than Sawyer. It is tough sometimes to be around them....I love them so much but they just dont get it either. What really gets on my nerves alot is hearing people whine about their kid having an ear infection or a stomach virus....I don't mean to sound like I don't care about other peoples problems. I guess it's just that I wish that is all I had to worry about! Anyway I think I am just rambling now so I will stop!!!! Try to have fun at your party.....and I bet Ben looks adorable in his Lion costume!!
Carrie

 

[mneville]

Since Aidan's diagnosis at 8 days old, I have found that each day is easier for the most part. Our family and friends are amazing- no, they will never understand but they are as supportive as I can expect.

I have never been depressed over his condition. Right now he is not sick and I do not expect that he will die early. Yes, there are bad days but I just need to look at his smile and I get over it. I choose life. And even on my worst day, Aidan is here and alive. And for that I am grateful. His treatments can be a pain but so can alot of things in life. I just stay positive and I believe Aidan and all CFers will live great lives!

Megan

 

[mneville]

Since Aidan's diagnosis at 8 days old, I have found that each day is easier for the most part. Our family and friends are amazing- no, they will never understand but they are as supportive as I can expect.

I have never been depressed over his condition. Right now he is not sick and I do not expect that he will die early. Yes, there are bad days but I just need to look at his smile and I get over it. I choose life. And even on my worst day, Aidan is here and alive. And for that I am grateful. His treatments can be a pain but so can alot of things in life. I just stay positive and I believe Aidan and all CFers will live great lives!

Megan

 

[mneville]

Since Aidan's diagnosis at 8 days old, I have found that each day is easier for the most part. Our family and friends are amazing- no, they will never understand but they are as supportive as I can expect.

I have never been depressed over his condition. Right now he is not sick and I do not expect that he will die early. Yes, there are bad days but I just need to look at his smile and I get over it. I choose life. And even on my worst day, Aidan is here and alive. And for that I am grateful. His treatments can be a pain but so can alot of things in life. I just stay positive and I believe Aidan and all CFers will live great lives!

Megan

 

[DEES4]

Megan,
I love your positive post.....while I cannot say I have never been depressed over the cf diagnosis I do try to stay positive. I do believe my son will live a long life. I choose to believe this or I would not be able to function. I do try to enjoy everyday with all four of my kids though because you just never know about tomorrow. Anyway I really like your positive spin on this topic and thanks for posting it.
Carrie
I also wanted to say that my family is supportive....it's just that they don't really understand what it is really all about. (Which I am thankful they dont have to know.) They have all always been there when we needed them.....everytime Sawyer has been in the hospital they were right there offering all the support they could. I just didn't want to sound like I didn't appreciate them ( in my last post). Thanks!!!!

 

[DEES4]

Megan,
I love your positive post.....while I cannot say I have never been depressed over the cf diagnosis I do try to stay positive. I do believe my son will live a long life. I choose to believe this or I would not be able to function. I do try to enjoy everyday with all four of my kids though because you just never know about tomorrow. Anyway I really like your positive spin on this topic and thanks for posting it.
Carrie
I also wanted to say that my family is supportive....it's just that they don't really understand what it is really all about. (Which I am thankful they dont have to know.) They have all always been there when we needed them.....everytime Sawyer has been in the hospital they were right there offering all the support they could. I just didn't want to sound like I didn't appreciate them ( in my last post). Thanks!!!!

 

[DEES4]

Megan,
I love your positive post.....while I cannot say I have never been depressed over the cf diagnosis I do try to stay positive. I do believe my son will live a long life. I choose to believe this or I would not be able to function. I do try to enjoy everyday with all four of my kids though because you just never know about tomorrow. Anyway I really like your positive spin on this topic and thanks for posting it.
Carrie
I also wanted to say that my family is supportive....it's just that they don't really understand what it is really all about. (Which I am thankful they dont have to know.) They have all always been there when we needed them.....everytime Sawyer has been in the hospital they were right there offering all the support they could. I just didn't want to sound like I didn't appreciate them ( in my last post). Thanks!!!!

 

[cfmomma]

This is a great thread! I don't have a problem discussing CF with others mainly because I grew up with a crohnic disease also. I have Crohn's and was diagnosed when I was 10. I refused to let anyone talk about it, and was furious with mom for telling my teachers. I hated the looks of pity and the whispers. It was obvious something was wrong with me, I went from a sickly 45 pounds(at age 10) to a healthy 70 pounds in a matter of weeks. I developed horrible "moon face" from the prednisone and I still pretended nothing was wrong. After a few years I got over the embarassment and even became the poster child for my region. I became more comfortable and my mission was to educate. When my son was diagnosed with CF I adopted the same attitude and wanted to inform before people were given the chance to take pity on him. I'm sure I was overbearing at times but telling people was my way of coping and spitting CF in the face. I definitly have my moments and get extremely angry when others act like they know more about CF than me. He had a preschool teacher that insisted the oldest living person with CF was 45 and lived here in Dallas. I said that was definitly not the case, yet she wouldn't back down and tried to make me feel like an idiot!!! AAGGHHH! As my son gets older I am going to let him decide who he wants to tell, I think that descision will be empowering for him. For right now I will stand on my soapbox.

 

[cfmomma]

This is a great thread! I don't have a problem discussing CF with others mainly because I grew up with a crohnic disease also. I have Crohn's and was diagnosed when I was 10. I refused to let anyone talk about it, and was furious with mom for telling my teachers. I hated the looks of pity and the whispers. It was obvious something was wrong with me, I went from a sickly 45 pounds(at age 10) to a healthy 70 pounds in a matter of weeks. I developed horrible "moon face" from the prednisone and I still pretended nothing was wrong. After a few years I got over the embarassment and even became the poster child for my region. I became more comfortable and my mission was to educate. When my son was diagnosed with CF I adopted the same attitude and wanted to inform before people were given the chance to take pity on him. I'm sure I was overbearing at times but telling people was my way of coping and spitting CF in the face. I definitly have my moments and get extremely angry when others act like they know more about CF than me. He had a preschool teacher that insisted the oldest living person with CF was 45 and lived here in Dallas. I said that was definitly not the case, yet she wouldn't back down and tried to make me feel like an idiot!!! AAGGHHH! As my son gets older I am going to let him decide who he wants to tell, I think that descision will be empowering for him. For right now I will stand on my soapbox.

 

[cfmomma]

This is a great thread! I don't have a problem discussing CF with others mainly because I grew up with a crohnic disease also. I have Crohn's and was diagnosed when I was 10. I refused to let anyone talk about it, and was furious with mom for telling my teachers. I hated the looks of pity and the whispers. It was obvious something was wrong with me, I went from a sickly 45 pounds(at age 10) to a healthy 70 pounds in a matter of weeks. I developed horrible "moon face" from the prednisone and I still pretended nothing was wrong. After a few years I got over the embarassment and even became the poster child for my region. I became more comfortable and my mission was to educate. When my son was diagnosed with CF I adopted the same attitude and wanted to inform before people were given the chance to take pity on him. I'm sure I was overbearing at times but telling people was my way of coping and spitting CF in the face. I definitly have my moments and get extremely angry when others act like they know more about CF than me. He had a preschool teacher that insisted the oldest living person with CF was 45 and lived here in Dallas. I said that was definitly not the case, yet she wouldn't back down and tried to make me feel like an idiot!!! AAGGHHH! As my son gets older I am going to let him decide who he wants to tell, I think that descision will be empowering for him. For right now I will stand on my soapbox.