don,t want to be insensative but.....

Emily65Roses · Feb 12, 2006

<blockquote>Quote <hr>yes he should be very aware that he is different in a sense that he has to do all his meds to help him stay and be healthly<hr></blockquote>

News flash on this one... this may be more true with the babies born today. But I know of many many many CFers who did all their meds and all the therapies, and were incredibly responsible and still died at a young age. I particularly hate when people say stuff like this because it makes it out to be that the CFers that died young did so because of something they did wrong. For anyone who might possibly think this, it is WRONG WRONG WRONG. Therapies do generally give you a better shot, and allow most people to live a hell of a lot longer. But not in all cases. No one with CF should ever be blamed for dying young, unless they do something ridiculous liks smoke a pack a day. Not saying that's what you meant, Jenn, but it was capable of coming off that way, and I wanted to clear it up.

Now as for your newest response. I am not mad at anyone except people who spread misinformation, like the quote I copied above. I have something to say about a lot of the comments anyone makes, so don't feel too "picked on." I'm just in general a very opinionated person, and I'm not afraid to say what I think. You're right, maybe one day when I have a child of my own I'll understand more, but that doesn't mean I'm an imbecile now. I know nothing about being a mother firsthand, but that doesn't mean I have no idea how I would raise a child if I ever find a way to have one. Allie and I have talked about that a lot, and we share a lot of the same views on it.

<blockquote>Quote <hr>not everyone is as sick as others , so i dont believe that your life is cut short i believe its what you make of it while you are here...<hr></blockquote>
I am fully aware that not everyone is as sick as others. BUT that doesn't mean you hope for the best and keep your kid in the dark in the meantime. That's garbage. You should allow your child to have all the information at hand. You tell them what goes on, what it all really means, and then tell them all the optimistic stuff. I'm not saying "depress your kid, tell him he's going to die by the time he's 10 no matter what he does." I'm saying don't lie to him. Give him all the information at your disposal, and then tell him "but there are new therapies every day, and life expectancies are growing" and blah blah etc. Optimism is lovely, and I would absolutely recommend it when speaking to a child about their CF, but that doesn't mean you have to be unreaslistic about it. You can be optimistic while still keeping your feet on the ground. And how could you not believe our lives are cut short? Do you not pay attention to statistics? Yes there was a 75 year old woman with CF, but people seem to forget that that IS NOT the norm. It's fantastic, but does it happen often? NO NO NO!!! Our life expectancy is currently 35. I'm not saying everyone will die before or by that age, but it's the average for a reason. It's not like these numbers are pulled out of the air by a "negative nancy" like myself. They are FACT. Yes your life is what you make of it, but don't go around telling people CF doesn't cut your life short. There's enough misinformation (or complete lack of information altogether) out there about CF as it is.

Emily65Roses · Feb 12, 2006

<blockquote>Quote <hr>yes he should be very aware that he is different in a sense that he has to do all his meds to help him stay and be healthly<hr></blockquote>

News flash on this one... this may be more true with the babies born today. But I know of many many many CFers who did all their meds and all the therapies, and were incredibly responsible and still died at a young age. I particularly hate when people say stuff like this because it makes it out to be that the CFers that died young did so because of something they did wrong. For anyone who might possibly think this, it is WRONG WRONG WRONG. Therapies do generally give you a better shot, and allow most people to live a hell of a lot longer. But not in all cases. No one with CF should ever be blamed for dying young, unless they do something ridiculous liks smoke a pack a day. Not saying that's what you meant, Jenn, but it was capable of coming off that way, and I wanted to clear it up.

Now as for your newest response. I am not mad at anyone except people who spread misinformation, like the quote I copied above. I have something to say about a lot of the comments anyone makes, so don't feel too "picked on." I'm just in general a very opinionated person, and I'm not afraid to say what I think. You're right, maybe one day when I have a child of my own I'll understand more, but that doesn't mean I'm an imbecile now. I know nothing about being a mother firsthand, but that doesn't mean I have no idea how I would raise a child if I ever find a way to have one. Allie and I have talked about that a lot, and we share a lot of the same views on it.

<blockquote>Quote <hr>not everyone is as sick as others , so i dont believe that your life is cut short i believe its what you make of it while you are here...<hr></blockquote>
I am fully aware that not everyone is as sick as others. BUT that doesn't mean you hope for the best and keep your kid in the dark in the meantime. That's garbage. You should allow your child to have all the information at hand. You tell them what goes on, what it all really means, and then tell them all the optimistic stuff. I'm not saying "depress your kid, tell him he's going to die by the time he's 10 no matter what he does." I'm saying don't lie to him. Give him all the information at your disposal, and then tell him "but there are new therapies every day, and life expectancies are growing" and blah blah etc. Optimism is lovely, and I would absolutely recommend it when speaking to a child about their CF, but that doesn't mean you have to be unreaslistic about it. You can be optimistic while still keeping your feet on the ground. And how could you not believe our lives are cut short? Do you not pay attention to statistics? Yes there was a 75 year old woman with CF, but people seem to forget that that IS NOT the norm. It's fantastic, but does it happen often? NO NO NO!!! Our life expectancy is currently 35. I'm not saying everyone will die before or by that age, but it's the average for a reason. It's not like these numbers are pulled out of the air by a "negative nancy" like myself. They are FACT. Yes your life is what you make of it, but don't go around telling people CF doesn't cut your life short. There's enough misinformation (or complete lack of information altogether) out there about CF as it is.

thelizardqueen · Feb 12, 2006

Like people have said on here - you may have mild CF now, but eventually it will get worse. A child may be fine and have no problems whatsoever at 10, but maybe at 15 he will culture Cepacia and spiral downhill. Now I'm not saying this is the case, and this will happen to your child, but it does happen. A parent has to be realistic, and take the good and the bad. I may not be a parent now, and know what its like to tell a child that they have CF and will die of it eventually, but I am that child that was told I would die, and I'm thankful everyday that my mother didn't sugar coat it for me. She gave me the facts - all of them - good and bad, and she also gave me hope. Living old with CF isn't ALL based on how well your treatments are, or how new the treatment is, its also based on the gene you have. You can take the best of care possible, but because of the gene you have, you will live less then others may. I'm 24, and am nowhere near as bad as the people I grew up with who died young. They took very good care of themselfs, and still I managed to outlive them. Part of that is due to genetics, and not all on how well you take care of yourselfs. The one's who died young, didn't die because they didn't take good care of themselves.

thelizardqueen · Feb 12, 2006

Like people have said on here - you may have mild CF now, but eventually it will get worse. A child may be fine and have no problems whatsoever at 10, but maybe at 15 he will culture Cepacia and spiral downhill. Now I'm not saying this is the case, and this will happen to your child, but it does happen. A parent has to be realistic, and take the good and the bad. I may not be a parent now, and know what its like to tell a child that they have CF and will die of it eventually, but I am that child that was told I would die, and I'm thankful everyday that my mother didn't sugar coat it for me. She gave me the facts - all of them - good and bad, and she also gave me hope. Living old with CF isn't ALL based on how well your treatments are, or how new the treatment is, its also based on the gene you have. You can take the best of care possible, but because of the gene you have, you will live less then others may. I'm 24, and am nowhere near as bad as the people I grew up with who died young. They took very good care of themselfs, and still I managed to outlive them. Part of that is due to genetics, and not all on how well you take care of yourselfs. The one's who died young, didn't die because they didn't take good care of themselves.

Emily65Roses · Feb 12, 2006

<blockquote>Quote <hr>Originally posted by: thelizardqueen Like people have said on here - you may have mild CF now, but eventually it will get worse. A child may be fine and have no problems whatsoever at 10, but maybe at 15 he will culture Cepacia and spiral downhill. Now I'm not saying this is the case, and this will happen to your child, but it does happen. A parent has to be realistic, and take the good and the bad. I may not be a parent now, and know what its like to tell a child that they have CF and will die of it eventually, but I am that child that was told I would die, and I'm thankful everyday that my mother didn't sugar coat it for me. She gave me the facts - all of them - good and bad, and she also gave me hope. Living old with CF isn't ALL based on how well your treatments are, or how new the treatment is, its also based on the gene you have. You can take the best of care possible, but because of the gene you have, you will live less then others may. I'm 24, and am nowhere near as bad as the people I grew up with who died young. They took very good care of themselfs, and still I managed to outlive them. Part of that is due to genetics, and not all on how well you take care of yourselfs. The one's who died young, didn't die because they didn't take good care of themselves.<hr></blockquote>

*applause* Thank you. You can all pay attention to this information now that it's not coming from my negative nancy self. This is from someone else, and it still rings true. So pay attention. I don't just say this stuff to be a huge pain in the butt, or a downer or any such trash. I say this stuff because hope is lovely, but false hope (not saying all hope is, just some of the things said here irk me) will only make the situation worse than if there was no hope at all. Be optimistic, be hopeful, but be REALISTIC. Do not sugarcoat over the facts, or lie to your children. The majority of the ones who are lied to will only resent you for it later. Those of us who were told the truth are generally very grateful to our parents for that.

Emily65Roses · Feb 12, 2006

<blockquote>Quote <hr>Originally posted by: thelizardqueen Like people have said on here - you may have mild CF now, but eventually it will get worse. A child may be fine and have no problems whatsoever at 10, but maybe at 15 he will culture Cepacia and spiral downhill. Now I'm not saying this is the case, and this will happen to your child, but it does happen. A parent has to be realistic, and take the good and the bad. I may not be a parent now, and know what its like to tell a child that they have CF and will die of it eventually, but I am that child that was told I would die, and I'm thankful everyday that my mother didn't sugar coat it for me. She gave me the facts - all of them - good and bad, and she also gave me hope. Living old with CF isn't ALL based on how well your treatments are, or how new the treatment is, its also based on the gene you have. You can take the best of care possible, but because of the gene you have, you will live less then others may. I'm 24, and am nowhere near as bad as the people I grew up with who died young. They took very good care of themselfs, and still I managed to outlive them. Part of that is due to genetics, and not all on how well you take care of yourselfs. The one's who died young, didn't die because they didn't take good care of themselves.<hr></blockquote>

*applause* Thank you. You can all pay attention to this information now that it's not coming from my negative nancy self. This is from someone else, and it still rings true. So pay attention. I don't just say this stuff to be a huge pain in the butt, or a downer or any such trash. I say this stuff because hope is lovely, but false hope (not saying all hope is, just some of the things said here irk me) will only make the situation worse than if there was no hope at all. Be optimistic, be hopeful, but be REALISTIC. Do not sugarcoat over the facts, or lie to your children. The majority of the ones who are lied to will only resent you for it later. Those of us who were told the truth are generally very grateful to our parents for that.

Diana · Feb 12, 2006

Hi there, I too am in a similar situation where a decision needs to be made on when to tell Mikayla who is 4 & 1/2 the full truth of her disease. Right now it is a little premature but I have started to tell her certain things so I can prepare her mind. She is a little obsessed with the concept of death and seems to be ok about it but gets really upset when she thinks about anyone she knows dying. She is certain that only some people die and I haven't had the heart to tell her otherwise just yet. Honestly she wouldn't deal with it very well if I told her any different at the moment....I know my child and she is sensitive. I am thinking in another year will be more appropriate.

As far as your 8 year old is concerned he probably is old enough to learn of the uglier side of CF. The upside is it will highlight to him the importance of him keeping up his treatments. One suggestion I have which may soften the blow a bit is create a thread on here for everyone to say hello to him and get some of the "older end of young" CFers to join in so he can see that CFers can live a long life. Isn't there someone on here who is 49? If there's one thing I know it's thats kids like hard evidence! It may just help him to see that yes it's not a nice disease but it shouldn't rule his life either.

Good Luck

Diana · Feb 12, 2006

Hi there, I too am in a similar situation where a decision needs to be made on when to tell Mikayla who is 4 & 1/2 the full truth of her disease. Right now it is a little premature but I have started to tell her certain things so I can prepare her mind. She is a little obsessed with the concept of death and seems to be ok about it but gets really upset when she thinks about anyone she knows dying. She is certain that only some people die and I haven't had the heart to tell her otherwise just yet. Honestly she wouldn't deal with it very well if I told her any different at the moment....I know my child and she is sensitive. I am thinking in another year will be more appropriate.

As far as your 8 year old is concerned he probably is old enough to learn of the uglier side of CF. The upside is it will highlight to him the importance of him keeping up his treatments. One suggestion I have which may soften the blow a bit is create a thread on here for everyone to say hello to him and get some of the "older end of young" CFers to join in so he can see that CFers can live a long life. Isn't there someone on here who is 49? If there's one thing I know it's thats kids like hard evidence! It may just help him to see that yes it's not a nice disease but it shouldn't rule his life either.

Good Luck

JazzysMom · Feb 12, 2006

I definitely dont agree with telling a child that doing their treatments will make them live longer. My daughter asked me last year how come I still went to the hospital so much when I was doing my treatments. I totally understood the confusion, frustration & worry that came with that question. It took everything I had to hold myself together & say because that is how CF works. All I can do is try my best. Sometimes my best isnt good enough & I need to go into the hospital or be on home IV's. It sucks doesnt it & she laughed then agreed!

JazzysMom · Feb 12, 2006

I definitely dont agree with telling a child that doing their treatments will make them live longer. My daughter asked me last year how come I still went to the hospital so much when I was doing my treatments. I totally understood the confusion, frustration & worry that came with that question. It took everything I had to hold myself together & say because that is how CF works. All I can do is try my best. Sometimes my best isnt good enough & I need to go into the hospital or be on home IV's. It sucks doesnt it & she laughed then agreed!

Allie · Feb 12, 2006

Cheers to Emily and Liz. People often hate to hear the truth, because it's painful. What is more important is your quality of life. I would say many people who are young...Liz, Emily, Emilee, Ry.....Have and had very fulfilling, great lives. Short doesn't mean bad. So yes, it's good, at eight, for your child to know the truth in my opinion. Their life will, more than likely, be shortened by Cf. It doesn't mean he won't be able to marry, have kids, etc.. Ry did all that too. His life mattered just as much as anyone else's. Let your son know that, when you tell him. That his life can be as much or more fulfilling than people who live to 100.

Allie · Feb 12, 2006

Cheers to Emily and Liz. People often hate to hear the truth, because it's painful. What is more important is your quality of life. I would say many people who are young...Liz, Emily, Emilee, Ry.....Have and had very fulfilling, great lives. Short doesn't mean bad. So yes, it's good, at eight, for your child to know the truth in my opinion. Their life will, more than likely, be shortened by Cf. It doesn't mean he won't be able to marry, have kids, etc.. Ry did all that too. His life mattered just as much as anyone else's. Let your son know that, when you tell him. That his life can be as much or more fulfilling than people who live to 100.

anonymous · Feb 13, 2006

I have been very open with Kait about her CF. Now i have never and will never tell her that CF is going to take her life because i do not want her to ever think that CF will win. She does know that people with CF die, some younger than others. She also knows how important it is to do her treatments and take her meds and by doing these things it could keep her healthier for a longer period of time. She has been hospitalized 4 times in her 9 years and she is very faithful in doing her treatments, never has she asked me why she is in the hospital because she always does her treatments, she knows that CF is different for everyone. She has a friend in school, same age and grade, unfortunatly her friend is REAL SICK and Kait is aware of this and prays for her friend. I am very open with my daughter and at times i have wondered if maybe i am too open with her. She does not seem depressed but i do notice that she sometimes worries about things that most 9 year olds do not worry about. I do not think she worries about dying because she knows that one day everyone is going to die, and she tells me that she can't wait to see Jesus. It is tough at times when Kaits friend is sick and Kait knows that her friend is sicker than she is, she comes home from school telling me what her friend is going through and i know that my daughter really cares for this other child.

I do share websites about people with CF with Kait. She read and watched Cody's website and video, she has her site on her favorites. She has also been to Greg's website, and she thinks that it is great that he is a pastor, and she is really inspired by Lisa Bentley.

I think that if you are going to tell your child about CF you should also tell the child about other people that have lived their lives to the fullest with CF.

Kaitsmom<img src="i/expressions/rose.gif" border="0">

anonymous · Feb 13, 2006

I have been very open with Kait about her CF. Now i have never and will never tell her that CF is going to take her life because i do not want her to ever think that CF will win. She does know that people with CF die, some younger than others. She also knows how important it is to do her treatments and take her meds and by doing these things it could keep her healthier for a longer period of time. She has been hospitalized 4 times in her 9 years and she is very faithful in doing her treatments, never has she asked me why she is in the hospital because she always does her treatments, she knows that CF is different for everyone. She has a friend in school, same age and grade, unfortunatly her friend is REAL SICK and Kait is aware of this and prays for her friend. I am very open with my daughter and at times i have wondered if maybe i am too open with her. She does not seem depressed but i do notice that she sometimes worries about things that most 9 year olds do not worry about. I do not think she worries about dying because she knows that one day everyone is going to die, and she tells me that she can't wait to see Jesus. It is tough at times when Kaits friend is sick and Kait knows that her friend is sicker than she is, she comes home from school telling me what her friend is going through and i know that my daughter really cares for this other child.

I do share websites about people with CF with Kait. She read and watched Cody's website and video, she has her site on her favorites. She has also been to Greg's website, and she thinks that it is great that he is a pastor, and she is really inspired by Lisa Bentley.

I think that if you are going to tell your child about CF you should also tell the child about other people that have lived their lives to the fullest with CF.

Kaitsmom<img src="i/expressions/rose.gif" border="0">

Emily65Roses · Feb 13, 2006

It seems like you've been fairly open with her, but this is contradictory:
<blockquote>Quote <hr>I have been very open with Kait about her CF. Now i have never and will never tell her that CF is going to take her life because i do not want her to ever think that CF will win.<hr></blockquote>

Unless she gets hit by a bus or gets cancer or something, CF will take her life, it will win. It's just a matter of when.

Emily65Roses · Feb 13, 2006

It seems like you've been fairly open with her, but this is contradictory:
<blockquote>Quote <hr>I have been very open with Kait about her CF. Now i have never and will never tell her that CF is going to take her life because i do not want her to ever think that CF will win.<hr></blockquote>

Unless she gets hit by a bus or gets cancer or something, CF will take her life, it will win. It's just a matter of when.

anonymous · Feb 13, 2006

I am not trying to start anything but just want others to know that my daughter knows that when her life is over here on this earth that she will spend eternity in heaven with her Lord and Savior, so to be honest CF will not win. The Lord will have another beautiful child and Kaitlyn will have won because she will then get to meet Jesus and walk on the heavenly streets of gold.

Kaitsmom<img src="i/expressions/rose.gif" border="0">

anonymous · Feb 13, 2006

I am not trying to start anything but just want others to know that my daughter knows that when her life is over here on this earth that she will spend eternity in heaven with her Lord and Savior, so to be honest CF will not win. The Lord will have another beautiful child and Kaitlyn will have won because she will then get to meet Jesus and walk on the heavenly streets of gold.

Kaitsmom<img src="i/expressions/rose.gif" border="0">

thelizardqueen · Feb 13, 2006

<blockquote>Quote <hr>Originally posted by: Anonymous I have been very open with Kait about her CF. Now i have never and will never tell her that CF is going to take her life because i do not want her to ever think that CF will win.

Kaitsmom<img src="i/expressions/rose.gif" border="0"><hr></blockquote>

CF will win eventually - its only a matter of time. CF is a TERMINAL genetic disease. Its good that she knows that CF does take lives, but don't let her find out from an outside source that CF will eventually take her. Unless they find a cure for CF in her lifetime (and I hope they do), CF will win - its simply a matter of when. Tell her to be digilent in her treatments, so that it will help her maintain a somewhat healthy life, but don't let her think that CF will never effect her in the long run.

thelizardqueen · Feb 13, 2006

<blockquote>Quote <hr>Originally posted by: Anonymous I have been very open with Kait about her CF. Now i have never and will never tell her that CF is going to take her life because i do not want her to ever think that CF will win.

Kaitsmom<img src="i/expressions/rose.gif" border="0"><hr></blockquote>

CF will win eventually - its only a matter of time. CF is a TERMINAL genetic disease. Its good that she knows that CF does take lives, but don't let her find out from an outside source that CF will eventually take her. Unless they find a cure for CF in her lifetime (and I hope they do), CF will win - its simply a matter of when. Tell her to be digilent in her treatments, so that it will help her maintain a somewhat healthy life, but don't let her think that CF will never effect her in the long run.

don,t want to be insensative but.....

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