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I agree with Suzie and Seana....
Luke DEMANDS tolerance of others with his ridiculous accusations and constantly spews non-sense yet HE is so intolerant of others. He makes CFers look like whinny / complainers...and if people keep dumping him in his life I say...who can blame them...
Luke DEMANDS tolerance of others with his ridiculous accusations and constantly spews non-sense yet HE is so intolerant of others. He makes CFers look like whinny / complainers...and if people keep dumping him in his life I say...who can blame them...
Purplelungs
New member
You know what I just got through reading all these posts going back and forth. I think its a bunch of bull sh*t. Each side has the right to express themselves...but telling each other you have no right to feel this and that...How some of you are saying us cfers think nothing but ourselves, how cfers are telling parents they have no right to feel the way they do. I KNOW I KNOW that not everyone is saying that...but this is what is getting everyone so po'ed. I say this is bull because we are supposed to be adults. It looks like everyone has said their peice but you keep going and going. This whole thing has made me mad and I tried to stay out of it, but I just cant right now. Yes I was one of the ones that posted on one of the locked threads...but why are we still going back and forth? There comes a point where you just have to shake your head and walk away.
Seana,
You have got to get a life. I mean seriously, you spent the day with a stomach ache because your kids went off the Jr. High and High School? For crying out loud, their 12 and 14! I think this really speaks to your negative attitude. When my son went off to junior high I was excited for him and he for himself. Think positive and positive things will happen!
Also, at this point, if you disagree with Luke or anyone else for that matter about this particular topic, that's fine but it seems that you keep throwing fuel on the fire.
And lastly, Luke was using a metaphor when he referred to a blind person. You obviously missed his point!
You have got to get a life. I mean seriously, you spent the day with a stomach ache because your kids went off the Jr. High and High School? For crying out loud, their 12 and 14! I think this really speaks to your negative attitude. When my son went off to junior high I was excited for him and he for himself. Think positive and positive things will happen!
Also, at this point, if you disagree with Luke or anyone else for that matter about this particular topic, that's fine but it seems that you keep throwing fuel on the fire.
And lastly, Luke was using a metaphor when he referred to a blind person. You obviously missed his point!
"I will not tolerate the thought that people who know CF are equal or worse off than those that have CF is preposterous"
As a mother about to give birth to a baby with CF I have to say, I couldn't DISAGREE with you more.
I know that having a serious disease is very difficult for the person who has it, however, I can say without hesitation that if I were diagnosed with cancer, heart disease or any number of the other top 10 killers, tomorrow that my first thought would be; who will take care of my AJ if something happens to me? Its selflessness in its purest form. Somehow when a child is born to you, your life suddenly becomes of less value than theirs, and your own future wellbeing depends on their happiness.
I do not believe that you would trade places with the parent of a child who suffers from this disease, or would you? If you could be you %100 with your dedicated wife, great career and everything else and instead of having CF you could have a child with it would you take that offer?
I am by no means attacking you, but I don't believe that even you believe some of the stuff you wrote. I also believe that <b>you are underestimating the impact of this disease on the people who love the victim's of it.</b>
I wanted to post this poem, just because I thinks it's beautiful, it doesn't really apply to you, but here it is anyway. BTW You sound like a great person and your very lucky to have what you have, a lot of people would trade their soul to find love alone.
<i>We are sitting at lunch when my daughter casually mentions that she and her husband are thinking of "starting a family." "We're taking a survey," she says, half-joking. "Do you think I should have a baby?" "It will change your life," I say, carefully keeping my tone neutral. "I know," she says, "no more sleeping in on weekends, no more spontaneous vacations...." But that is not what I meant at all.
I look at my daughter, trying to decide what to tell her. I want her to know what she will never learn in childbirth classes. I want to tell her that the physical wounds of child bearing will heal, but that becoming a mother will leave her with an emotional wound so raw that she will forever be vulnerable. I consider warning her that she will never again read a newspaper without asking "What if that had been MY child?" That every plane crash, every house fire will haunt her. That when she sees pictures of starving children, she will wonder if anything could be worse than watching your child die.
I look at her carefully manicured nails and stylish suit and think that no matter how sophisticated she is, becoming a mother will reduce her to the primitive level of a bear protecting her cub. That an urgent call of "Mom!" will cause her to drop a souffle or her best crystal without a moment's hesitation.
I feel I should warn her that no matter how many years she has invested in her career, she will be professionally derailed by motherhood. She might arrange for childcare, but one day she will be going into an important business meeting and she will think of her baby's sweet smell. She will have to use every ounce of her discipline to keep from running home, just to make sure her baby is all right.
I want my daughter to know that everyday decisions will no longer be routine. That a five year old boy's desire to go to the men's room rather than the women's at McDonald's will become a major dilemma. That right there, in the midst of clattering trays and screaming children, issues of independence and gender identity will be weighed against the prospect that a child molester may be lurking in that restroom.
However decisive she may be at the office, she will second-guess herself constantly as a mother. Looking at my attractive daughter, I want to assure her that eventually she will shed the pounds of pregnancy, but she will never feel the same about herself. That her life, now so important, will be of less value to her once she has a child. That she would give it up in a moment to save her offspring, but will also begin to hope for more years-not to accomplish her own dreams, but to watch her child accomplish theirs.
I want her to know that a cesarean scar or shiny stretch marks will become badges of honor. My daughter's relationship with her husband will change, but not in the way she thinks. I wish she could understand how much more you can love a man who is careful to powder the baby or who never hesitates to play with his child. I think she should know that she will fall in love with him again for reasons she would now find very unromantic.
I wish my daughter could sense the bond she will feel with women throughout history who have tried to stop war, prejudice and drunk driving. I hope she will understand why I can think rationally about most issues, but become temporarily insane when I discuss the threat of nuclear war to my children's future. I want to describe to my daughter the exhilaration of seeing your child learn to ride a bike. I want to capture for her the belly laugh of a baby who is touching the soft fur of a dog or a cat for the first time. I want her to taste the joy that is so real, it actually hurts. My daughter's quizzical look makes me realize that tears have formed in my eyes.
"You'll never regret it," I finally say. Then I reach across the table, squeeze my daughter's hand and offer a silent prayer for her, and for me, and for all of the mere mortal women who stumble their way into this most wonderful of callings. This blessed gift from God... .....that of being a Mother.
~~Author Unknown </i>
Jen
As a mother about to give birth to a baby with CF I have to say, I couldn't DISAGREE with you more.
I know that having a serious disease is very difficult for the person who has it, however, I can say without hesitation that if I were diagnosed with cancer, heart disease or any number of the other top 10 killers, tomorrow that my first thought would be; who will take care of my AJ if something happens to me? Its selflessness in its purest form. Somehow when a child is born to you, your life suddenly becomes of less value than theirs, and your own future wellbeing depends on their happiness.
I do not believe that you would trade places with the parent of a child who suffers from this disease, or would you? If you could be you %100 with your dedicated wife, great career and everything else and instead of having CF you could have a child with it would you take that offer?
I am by no means attacking you, but I don't believe that even you believe some of the stuff you wrote. I also believe that <b>you are underestimating the impact of this disease on the people who love the victim's of it.</b>
I wanted to post this poem, just because I thinks it's beautiful, it doesn't really apply to you, but here it is anyway. BTW You sound like a great person and your very lucky to have what you have, a lot of people would trade their soul to find love alone.
<i>We are sitting at lunch when my daughter casually mentions that she and her husband are thinking of "starting a family." "We're taking a survey," she says, half-joking. "Do you think I should have a baby?" "It will change your life," I say, carefully keeping my tone neutral. "I know," she says, "no more sleeping in on weekends, no more spontaneous vacations...." But that is not what I meant at all.
I look at my daughter, trying to decide what to tell her. I want her to know what she will never learn in childbirth classes. I want to tell her that the physical wounds of child bearing will heal, but that becoming a mother will leave her with an emotional wound so raw that she will forever be vulnerable. I consider warning her that she will never again read a newspaper without asking "What if that had been MY child?" That every plane crash, every house fire will haunt her. That when she sees pictures of starving children, she will wonder if anything could be worse than watching your child die.
I look at her carefully manicured nails and stylish suit and think that no matter how sophisticated she is, becoming a mother will reduce her to the primitive level of a bear protecting her cub. That an urgent call of "Mom!" will cause her to drop a souffle or her best crystal without a moment's hesitation.
I feel I should warn her that no matter how many years she has invested in her career, she will be professionally derailed by motherhood. She might arrange for childcare, but one day she will be going into an important business meeting and she will think of her baby's sweet smell. She will have to use every ounce of her discipline to keep from running home, just to make sure her baby is all right.
I want my daughter to know that everyday decisions will no longer be routine. That a five year old boy's desire to go to the men's room rather than the women's at McDonald's will become a major dilemma. That right there, in the midst of clattering trays and screaming children, issues of independence and gender identity will be weighed against the prospect that a child molester may be lurking in that restroom.
However decisive she may be at the office, she will second-guess herself constantly as a mother. Looking at my attractive daughter, I want to assure her that eventually she will shed the pounds of pregnancy, but she will never feel the same about herself. That her life, now so important, will be of less value to her once she has a child. That she would give it up in a moment to save her offspring, but will also begin to hope for more years-not to accomplish her own dreams, but to watch her child accomplish theirs.
I want her to know that a cesarean scar or shiny stretch marks will become badges of honor. My daughter's relationship with her husband will change, but not in the way she thinks. I wish she could understand how much more you can love a man who is careful to powder the baby or who never hesitates to play with his child. I think she should know that she will fall in love with him again for reasons she would now find very unromantic.
I wish my daughter could sense the bond she will feel with women throughout history who have tried to stop war, prejudice and drunk driving. I hope she will understand why I can think rationally about most issues, but become temporarily insane when I discuss the threat of nuclear war to my children's future. I want to describe to my daughter the exhilaration of seeing your child learn to ride a bike. I want to capture for her the belly laugh of a baby who is touching the soft fur of a dog or a cat for the first time. I want her to taste the joy that is so real, it actually hurts. My daughter's quizzical look makes me realize that tears have formed in my eyes.
"You'll never regret it," I finally say. Then I reach across the table, squeeze my daughter's hand and offer a silent prayer for her, and for me, and for all of the mere mortal women who stumble their way into this most wonderful of callings. This blessed gift from God... .....that of being a Mother.
~~Author Unknown </i>
Jen
CFHockeyMom
New member
No one is underestimating the impact that a serious illness (CF or otherwise) has on the loved ones of the person actually dealing with the disease. Luke is not saying that CF doesn't affect loved ones, he's simply saying that it isn't the same and for you to presume that it is or even that it's worse in some way is wrong.
I will never know what it's like to have CF and I hope my children never know what it's like to have a child with CF. Sure, my heart breaks for my son when he has to go to the office and take his meds before lunch. He's being singled out and I hate that! However, as much as I hate it and as bad as it makes me feel, he's the one doing it. He's the one that actually has to live the CF life, not me. Like I said, my heart breaks but no matter how I try, I'll never know what it's like to actually walk in his (or Luke's) shoes. Empathy/sympathy isn't the same as reality.
Why can't you people leave Luke alone? Some of you mom's are acting like CF is the end of the world for you. You need to get some perspective and be positive. Regardless of some popular opinion, motherhood is not sainthood and a lot of you are getting the two confused.
I will never know what it's like to have CF and I hope my children never know what it's like to have a child with CF. Sure, my heart breaks for my son when he has to go to the office and take his meds before lunch. He's being singled out and I hate that! However, as much as I hate it and as bad as it makes me feel, he's the one doing it. He's the one that actually has to live the CF life, not me. Like I said, my heart breaks but no matter how I try, I'll never know what it's like to actually walk in his (or Luke's) shoes. Empathy/sympathy isn't the same as reality.
Why can't you people leave Luke alone? Some of you mom's are acting like CF is the end of the world for you. You need to get some perspective and be positive. Regardless of some popular opinion, motherhood is not sainthood and a lot of you are getting the two confused.
For the most part I agree with CF Hockey Mom - those of us who don't have CF don't know what it's like to have CF.
Big freakin' duh there.
However, equally so - you don't know what it's like in our shoes.
Big freakin' duh again.
So, how about we just take it that we all have different perspectives on this disease. When we say we understand, we are understanding from OUR point of view. We will never know what it's like to have CF - since we don't. Likewise, in the majority of cases you will not know what it's like to be the parent or significant other of a CFer.
Our views aren't inferior - they are different. While I'm not going to argue with you about how hard it is to hack up a lung every day, please, for the sake of everyone's sanity - don't tell me I have it easier because I don't have CF. It's not a contest! Last time I checked, we weren't giving out "My life sucks the most" medals around here - we're here to support other people who are affected by this disease - because it sucks for each and every one of us.
Big freakin' duh there.
However, equally so - you don't know what it's like in our shoes.
Big freakin' duh again.
So, how about we just take it that we all have different perspectives on this disease. When we say we understand, we are understanding from OUR point of view. We will never know what it's like to have CF - since we don't. Likewise, in the majority of cases you will not know what it's like to be the parent or significant other of a CFer.
Our views aren't inferior - they are different. While I'm not going to argue with you about how hard it is to hack up a lung every day, please, for the sake of everyone's sanity - don't tell me I have it easier because I don't have CF. It's not a contest! Last time I checked, we weren't giving out "My life sucks the most" medals around here - we're here to support other people who are affected by this disease - because it sucks for each and every one of us.
Seana-
I think you are missing the point of what Luke is trying to get across. Luke correct me if I am wrong here. But the way the original post was worded was a little harsh to CF patients. Do we ever realize what other people go through to take care of us? Do we realize the sacrifice of everyone around us? Of course we do! If we didn't we would be a very selfish group of people. It just sucks when the people who should take care of you because they have UNCONDITIONAL love for you throw that fact back in your face. The last thing that any CF person wants is to feel like a burden. I guess my feeling is that my Mom should take care of me and be there for me because she is my mother. I realize what she has given up for me and of course I'm greatful for that. Whether you did it intentionally or not you kind of threw the fact that we are burdens in our faces.
Margaret
Double Lung Transplant 11-11-04
I think you are missing the point of what Luke is trying to get across. Luke correct me if I am wrong here. But the way the original post was worded was a little harsh to CF patients. Do we ever realize what other people go through to take care of us? Do we realize the sacrifice of everyone around us? Of course we do! If we didn't we would be a very selfish group of people. It just sucks when the people who should take care of you because they have UNCONDITIONAL love for you throw that fact back in your face. The last thing that any CF person wants is to feel like a burden. I guess my feeling is that my Mom should take care of me and be there for me because she is my mother. I realize what she has given up for me and of course I'm greatful for that. Whether you did it intentionally or not you kind of threw the fact that we are burdens in our faces.
Margaret
Double Lung Transplant 11-11-04
Purplelungs
New member
Oh wow Claudette. Thank you.
I had this thing typed out then remembered the post i just wrote and even though it wasnt a one sided thing I decided not to put it up.
I had this thing typed out then remembered the post i just wrote and even though it wasnt a one sided thing I decided not to put it up.
CFHockeyMom
New member
Miesl said,
<blockquote>Quote<br><hr>we're here to support other people who are affected by this disease - because it sucks for each and every one of us. <hr></blockquote>
I don't think anyone can argue with that. Now let's move on.
<blockquote>Quote<br><hr>we're here to support other people who are affected by this disease - because it sucks for each and every one of us. <hr></blockquote>
I don't think anyone can argue with that. Now let's move on.
I
IG
Guest
You know what, I agree with Purplelungs... THIS TOPIC HAS BEEN DONE TO DEATH.
Everybody knows each others opinions.
Why do you feel the need to defend yourself for what you believe.
I, like her, am extremely upset at most of you. I thought that you were well informed and knowledgeable people willing to share ideas and expressions instead of just picking a topic to death and criticizing somebody else's views. I am saddened that the forums have become like this. I understand that conflict cannot be avoided and that it's good, that way we can get ideas out there, but this... this just goes beyond anything I've ever seen before. This is basically a little kids squabble. It's like going down to a kindergarten classroom and watching the children fight over who is right and who is wrong. ::sigh:: In a topic like this nobody is right and nobody is wrong.
Until a CFer becomes a parent of a CF child nobody can truly say 'this is what it's like' I know that these parents have a different view of things, I myself have a different view of things since I've become involved with a man with CF... I can honestly say that I'm looking at this disease in a way that I never have before. But that's just my own view.... I have no clue what it'd be like to have a child with CF... and most CFers don't know that either. So I kindly suggest that this topic be dropped.
We can't argue it anymore.
Each of you are right.
A CFer cannot compare what they've been through with what a mother of a CFer has been through.
They are both different and both go through challenges that the other one probably won't have to go through.
Everybody knows each others opinions.
Why do you feel the need to defend yourself for what you believe.
I, like her, am extremely upset at most of you. I thought that you were well informed and knowledgeable people willing to share ideas and expressions instead of just picking a topic to death and criticizing somebody else's views. I am saddened that the forums have become like this. I understand that conflict cannot be avoided and that it's good, that way we can get ideas out there, but this... this just goes beyond anything I've ever seen before. This is basically a little kids squabble. It's like going down to a kindergarten classroom and watching the children fight over who is right and who is wrong. ::sigh:: In a topic like this nobody is right and nobody is wrong.
Until a CFer becomes a parent of a CF child nobody can truly say 'this is what it's like' I know that these parents have a different view of things, I myself have a different view of things since I've become involved with a man with CF... I can honestly say that I'm looking at this disease in a way that I never have before. But that's just my own view.... I have no clue what it'd be like to have a child with CF... and most CFers don't know that either. So I kindly suggest that this topic be dropped.
We can't argue it anymore.
Each of you are right.
A CFer cannot compare what they've been through with what a mother of a CFer has been through.
They are both different and both go through challenges that the other one probably won't have to go through.
Had anyone ever heard of the saying Ideal hands are the devils workshop. Well guess what? You all are letting the devil win. All the arguing and bickering,name calling and all in the name of CF guess what CF is an illness of the body not the mind and everyone has an opinion quit with all the flack and insults toward each other. CF is hard enough on both sides please please don't make it harder on the rest of us.
Life is to be enjoyed while we still have it and all this stress that is building from all this is not healthy for anyone. I am new here and thought that I might be able to find someone to talk with that is going through somewhat the same thing, but all I have found all over is people who say they care about someone with CF be it the CFer of the care taker bitting each others heads off.Why can't we all just learn to get along and let things be. God forgives us of our sins why can't we forgive each other for what ever made us upset.
Life is to be enjoyed while we still have it and all this stress that is building from all this is not healthy for anyone. I am new here and thought that I might be able to find someone to talk with that is going through somewhat the same thing, but all I have found all over is people who say they care about someone with CF be it the CFer of the care taker bitting each others heads off.Why can't we all just learn to get along and let things be. God forgives us of our sins why can't we forgive each other for what ever made us upset.