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

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anonymous

New member
Jenn
I totally agree with you on this topic.. I do not want my child to think that just because she has CF she has to give up on living and concentrate on dying.. There are many more ways to die than a disease and i want her to be positive and live to be old and beat the odds, not walk around thinking that she is going to die from CF so there is no reason to try to accomplish the things that she wants in life....kids..marriage..career , etc.
but she does know that people with CF die and she knows that people die in other ways as well. She is always praying for a cure and she knows that God knows what is best for her and if it not be his will to cure her than she knows her faith in the Lord will be greatly rewarded.

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

New member
Jenn
I totally agree with you on this topic.. I do not want my child to think that just because she has CF she has to give up on living and concentrate on dying.. There are many more ways to die than a disease and i want her to be positive and live to be old and beat the odds, not walk around thinking that she is going to die from CF so there is no reason to try to accomplish the things that she wants in life....kids..marriage..career , etc.
but she does know that people with CF die and she knows that people die in other ways as well. She is always praying for a cure and she knows that God knows what is best for her and if it not be his will to cure her than she knows her faith in the Lord will be greatly rewarded.

Kaitsmom<img src="i/expressions/rose.gif" border="0">
 
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Emily65Roses

New member
You know part of the reason I want to make sure kids know what really gives... is not to make them think they can never get anything done in life. "You won't move out, you won't get a job, you won't get married, you won't have kids." No no no. Letting a kid know what really gives with CF, what it means is important. No, no one ever <b><u>knows</u></b> when they'll die, or from what, or what it'll be like. But you want the kid to have all the facts that you have. How would you feel if you were a teenager and found out your parents had all this information and had been lying to you about it? You're the one with the disease, and they're keeping the information from you... that would piss me off, quite frankly.

Allie and I talked about this. The point of telling a kid what really gives is not to depress him and tell him "Hey you're going to die, don't have hopes or dreams, and don't bother ever thinking you're going to get a job, or move out, or get married, or have kids." It's kind of a way to let him know he might need to prioritize a bit. That he may have less time than most, and if he wants to, for example... move out, get married, have kids... <i>and</i> go to medical school, he needs to decide which is more important. Not to say both won't get done, but to do the more important one first in case time runs low. The point is not to strip a child of his dreams, but to be realistic about the situation, so that he CAN fulfill them. Like many others have said (including myself), it's quality, not quantity. If a kid is stuck and has really crappy CF and gets cepacia and dies at 31, like Ry did, he's going to want to be able to know the situation so that he can get married and have kids before that time comes --- again, like Ry did. He died at 31, yes, but he got married to his soul mate, and was able to have a baby girl before he died. It was good for him to know all the facts so that he was able to do that stuff in the time he had. If he hadn't have known everything, he may have dicked around doing other stuff that didn't mean as much.

I feel like people aren't quite paying attention. Yes, I want a kid to know everything, and yes that means all the negative garbage, the death blah blah, etc. But that doesn't mean I'm this big horrible person that gets off on telling kids they're going to die. Like I watch their faces fall, and then laugh about it. Nooooo. The point is to make sure they have all the information at their disposal so they can make the most informed decisions possible. So that they can get all the things they want to do done before they die. So that they have a life they're happy with, a meaningful one. The point is to make sure a CFer is thoroughly informed so that they can make intelligent decisions about their life, and have the kind of life they want. Not to steal candy from babies and watch them cry.
 
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Emily65Roses

New member
You know part of the reason I want to make sure kids know what really gives... is not to make them think they can never get anything done in life. "You won't move out, you won't get a job, you won't get married, you won't have kids." No no no. Letting a kid know what really gives with CF, what it means is important. No, no one ever <b><u>knows</u></b> when they'll die, or from what, or what it'll be like. But you want the kid to have all the facts that you have. How would you feel if you were a teenager and found out your parents had all this information and had been lying to you about it? You're the one with the disease, and they're keeping the information from you... that would piss me off, quite frankly.

Allie and I talked about this. The point of telling a kid what really gives is not to depress him and tell him "Hey you're going to die, don't have hopes or dreams, and don't bother ever thinking you're going to get a job, or move out, or get married, or have kids." It's kind of a way to let him know he might need to prioritize a bit. That he may have less time than most, and if he wants to, for example... move out, get married, have kids... <i>and</i> go to medical school, he needs to decide which is more important. Not to say both won't get done, but to do the more important one first in case time runs low. The point is not to strip a child of his dreams, but to be realistic about the situation, so that he CAN fulfill them. Like many others have said (including myself), it's quality, not quantity. If a kid is stuck and has really crappy CF and gets cepacia and dies at 31, like Ry did, he's going to want to be able to know the situation so that he can get married and have kids before that time comes --- again, like Ry did. He died at 31, yes, but he got married to his soul mate, and was able to have a baby girl before he died. It was good for him to know all the facts so that he was able to do that stuff in the time he had. If he hadn't have known everything, he may have dicked around doing other stuff that didn't mean as much.

I feel like people aren't quite paying attention. Yes, I want a kid to know everything, and yes that means all the negative garbage, the death blah blah, etc. But that doesn't mean I'm this big horrible person that gets off on telling kids they're going to die. Like I watch their faces fall, and then laugh about it. Nooooo. The point is to make sure they have all the information at their disposal so they can make the most informed decisions possible. So that they can get all the things they want to do done before they die. So that they have a life they're happy with, a meaningful one. The point is to make sure a CFer is thoroughly informed so that they can make intelligent decisions about their life, and have the kind of life they want. Not to steal candy from babies and watch them cry.
 
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Allie

New member
I don't really have anything to add besides "Exactly". You hit the nail on the head.

Edited to add : To the poster that said dying young was romantic, Ry used to say CF was the new TB. Skinny, coughing up blood, dying young, pretending it makes you wiser and deeper. lol. Just reminded me of that.
 
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Allie

New member
I don't really have anything to add besides "Exactly". You hit the nail on the head.

Edited to add : To the poster that said dying young was romantic, Ry used to say CF was the new TB. Skinny, coughing up blood, dying young, pretending it makes you wiser and deeper. lol. Just reminded me of that.
 
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JennifersHope

New member
Well I might as well chime in.... I agree with all aspects of this post pretty much.. I think some people are taking what Emily says in a different light then she may mean it.. but she does a real good job stating excatly what she feels...

My thoughts are this...

I didn't know I had CF till I was 29 but

I agree with telling a child age appropiate things about their disease. I think it depends on the child. When I was a child, I think the life expectancy for someone with CF was in the low teens.. and it has crept up, always managing to stay a few years ahead of me....anyway, as a child, I had excessive fears, I worried all the time that something bad was going to happen to me, or my parents.. I had nightmares about it.. I am not sure why other then I probably had seperation anxiety as a child or some other form of anxiety.. Telling me that I had a good chance of dying young would have for sure put me over the edge.. I would have become fixated on dying.. I know me.... I wouldn't have been as much of a risk taker as I am... I would have expected to die... and probably would have done nothing with my life.. because I would have thought it is pointless..

THAT IS JUST ME.. Not all kids are like that, but most children feel most secure with honesty, but honesty to their level of understanding... I wouldn't tell a young child that their life was going to be cut short.. I would never do that, unless I knew they were dying in the next few months... IF it were me and it was my child, I would say, CF is very serious disease, I would tell them that they have medicines that they can take to help the symptoms, explain the importance etc.. I would for me focus on the positive.. like each year or so the age of life expectancy goes up.... I want to be clear,, I would focus on the positve.... not only say the positve.. I would go by my childs lead, not by anyone elses advice, but on how I as the parent assessed my childs ability to understand things.. I would ask myself if they tended to be anxious, or if they were worried a lot... and if they did.. I would certainly not say.. HMM sorry baby you probably are going to die young.....and you probably can't do half of what you want to.....Not that anyone was saying to say that because I didn't read that at all....

Don't ever lie to your child, but I truly believe and have seen from my years of experience with children that children take your lead on how you veiw things...in general that is how most ppl are with anyone who is seen as thier authority figure....

Anyway my two cents.....

Jennifer
 
J

JennifersHope

New member
Well I might as well chime in.... I agree with all aspects of this post pretty much.. I think some people are taking what Emily says in a different light then she may mean it.. but she does a real good job stating excatly what she feels...

My thoughts are this...

I didn't know I had CF till I was 29 but

I agree with telling a child age appropiate things about their disease. I think it depends on the child. When I was a child, I think the life expectancy for someone with CF was in the low teens.. and it has crept up, always managing to stay a few years ahead of me....anyway, as a child, I had excessive fears, I worried all the time that something bad was going to happen to me, or my parents.. I had nightmares about it.. I am not sure why other then I probably had seperation anxiety as a child or some other form of anxiety.. Telling me that I had a good chance of dying young would have for sure put me over the edge.. I would have become fixated on dying.. I know me.... I wouldn't have been as much of a risk taker as I am... I would have expected to die... and probably would have done nothing with my life.. because I would have thought it is pointless..

THAT IS JUST ME.. Not all kids are like that, but most children feel most secure with honesty, but honesty to their level of understanding... I wouldn't tell a young child that their life was going to be cut short.. I would never do that, unless I knew they were dying in the next few months... IF it were me and it was my child, I would say, CF is very serious disease, I would tell them that they have medicines that they can take to help the symptoms, explain the importance etc.. I would for me focus on the positive.. like each year or so the age of life expectancy goes up.... I want to be clear,, I would focus on the positve.... not only say the positve.. I would go by my childs lead, not by anyone elses advice, but on how I as the parent assessed my childs ability to understand things.. I would ask myself if they tended to be anxious, or if they were worried a lot... and if they did.. I would certainly not say.. HMM sorry baby you probably are going to die young.....and you probably can't do half of what you want to.....Not that anyone was saying to say that because I didn't read that at all....

Don't ever lie to your child, but I truly believe and have seen from my years of experience with children that children take your lead on how you veiw things...in general that is how most ppl are with anyone who is seen as thier authority figure....

Anyway my two cents.....

Jennifer
 
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LouLou

New member
I don't remember when I learned about my mortality. My family has always involved me in fundraising which means I hear what they say and always told me things pretty straight. One of the first sentances in any fundraising publications is the life expectancy of a person with CF. They are better about it now but they used to paint a really doom and gloom forcast to pump up the donor dollars. "Example: "50% of CF children won't live past their XXth birthday." On an interesting note, the finding of the CF gene really encouraged my doctors. This happened in '85 I believe. I was ~ age 7. I remember them saying that they would bet on a cure in the next 10-15 years which sadly has come and gone. This statement by them may have been the inspiration for something my parents said to me often between age 8-16. "Honey the reason I'm being adament about you doing your treatment is because your lungs are beautiful and healthy. Every time your health slips we run the risk of it becoming permanent damage. When a cure comes it's not going to be able to fix damage done only stop the CF in its tracks. So take care of those lungs and do your treatments." To this day this is one of the things that motivates my 100% compliancy to my CF care.
 
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LouLou

New member
I don't remember when I learned about my mortality. My family has always involved me in fundraising which means I hear what they say and always told me things pretty straight. One of the first sentances in any fundraising publications is the life expectancy of a person with CF. They are better about it now but they used to paint a really doom and gloom forcast to pump up the donor dollars. "Example: "50% of CF children won't live past their XXth birthday." On an interesting note, the finding of the CF gene really encouraged my doctors. This happened in '85 I believe. I was ~ age 7. I remember them saying that they would bet on a cure in the next 10-15 years which sadly has come and gone. This statement by them may have been the inspiration for something my parents said to me often between age 8-16. "Honey the reason I'm being adament about you doing your treatment is because your lungs are beautiful and healthy. Every time your health slips we run the risk of it becoming permanent damage. When a cure comes it's not going to be able to fix damage done only stop the CF in its tracks. So take care of those lungs and do your treatments." To this day this is one of the things that motivates my 100% compliancy to my CF care.
 
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Emily65Roses

New member
<blockquote>Quote<br><hr>On an interesting note, the finding of the CF gene really encouraged my doctors. This happened in '85 I believe.<hr></blockquote>

Just FYI, it was 1989. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Emily65Roses

New member
<blockquote>Quote<br><hr>On an interesting note, the finding of the CF gene really encouraged my doctors. This happened in '85 I believe.<hr></blockquote>

Just FYI, it was 1989. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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littledebbie

New member
I agree totally with Allie, Emily, Jenn a few others who's name I can't remember <img src="i/expressions/face-icon-small-smile.gif" border="0">

Sort of an add on to Emily, I too think it's about not holding information from them. It has been so important to me that I have alawys felt my Mom and I were a TEAM, that someone was in this with me, and had my back. I don't think that dynamic could have existed if she had ever tried to screen information to me or tried to give it to me into doses. it would have made me angry and distrustfull. It would have put her on the side of Dr.'s etc. people who want me to do well but they are not in the trenches with me swinging. I can't fight if I'm not fully armed. I need honesty. My mom and i are a team, while sometimes i feel she still hasn't let go enough and probably never will, i realize she has been fighting this by my side just as hard as i have and I'm her baby, I have to cut her some slack. If it makes her feel better to nag me a little...well it doesn't hurt anything. I think if you want to be treated with respect and be included when we're adults and don't really have to share info with you, then you have to treat us with respect and share with us when we're kids.

Just my thoughts...again <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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littledebbie

New member
I agree totally with Allie, Emily, Jenn a few others who's name I can't remember <img src="i/expressions/face-icon-small-smile.gif" border="0">

Sort of an add on to Emily, I too think it's about not holding information from them. It has been so important to me that I have alawys felt my Mom and I were a TEAM, that someone was in this with me, and had my back. I don't think that dynamic could have existed if she had ever tried to screen information to me or tried to give it to me into doses. it would have made me angry and distrustfull. It would have put her on the side of Dr.'s etc. people who want me to do well but they are not in the trenches with me swinging. I can't fight if I'm not fully armed. I need honesty. My mom and i are a team, while sometimes i feel she still hasn't let go enough and probably never will, i realize she has been fighting this by my side just as hard as i have and I'm her baby, I have to cut her some slack. If it makes her feel better to nag me a little...well it doesn't hurt anything. I think if you want to be treated with respect and be included when we're adults and don't really have to share info with you, then you have to treat us with respect and share with us when we're kids.

Just my thoughts...again <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
littledebbie
WOW.. I really hope that my daughter feels that way about my nagging when she is your age. It is true though, i know that i will be right by my daughter fighting with all that i have for her and with her and you are right ..your mom will probably always be that way ..... i only say that because i know being a mom that i will always be that way. I think that it is awesome how you know that your mom will always be there.

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

New member
littledebbie
WOW.. I really hope that my daughter feels that way about my nagging when she is your age. It is true though, i know that i will be right by my daughter fighting with all that i have for her and with her and you are right ..your mom will probably always be that way ..... i only say that because i know being a mom that i will always be that way. I think that it is awesome how you know that your mom will always be there.

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

New member
I think it's best to give the disease a name. "CF" is fine. And to say something like "Folks with CF get lots of mucus in their lungs and have trouble digesting stuff on their own. So that's why you take these pills and I 'beat' on you" or something short and sweet like that. Don't have to get into the mortality statistics (which change every year anyway).

I say this because CF runs in my husband's family and the parents of the kids with CF treated it like some big family secret. Never told the kids. Never let the adults even say "CF" within hearing range of the kids. Hardly even talked about it at all. Just whisper whisper whisper "She's home getting IVs this week."

Now the girls are in college and unless they are complete idiots (and they certainly are not) they know, but still its whisper whisper whisper. Last year at Thanksgiving when the girls were near me someone asked about my husband and I said something like "well, you know he's got Marfans" and they said "Marfans?" and I said "yup, well it's not just CF that runs in this family" and one of the aunts went "SHHHHH!" and threw a look at one of the girls that said "don't let them hear" and I glanced over at the girls we looked bemused as hell and just shrugged. But I did drop the subject.

Now how can that kind of secrecy be helpful? Seems to me it leaves them all alone and feeling weird as hell. And as they got older if they wanted it, their Uncle Rip (my late husband) could have been more support to them if the 3 of them could have talked out loud about what it was like to live with an illness that presently had some dumb prognosis of "dead at 35" if he'd been "allowed" to say that that's what he'd been told in 7th grade about Marfan's (that was "forbidden" too. ANY talk of death or terminal illness was/is forbidden.).

Seems better to me to be terribly "matter of fact" about the whole thing. Just deal with the treatments and stuff matter of factly - like brushing your teeth or something. I would think that would help the kids take over the management of their illness as they get older too.

I mean that's what my friends whose kids have diabetes do. I remember years ago spending the night at one family's house and the 7th grader (who was living with diabetes) got the orange juice out of the fridge, poured me a glass, put the juice back, got out her insulin, sat down, gave herself a shot in the tummy, etc. All the time talking a blue streak the way a 7th grade girl can. It was just a fine time. That girl went off to college real comfortable in her own skin and able to care for herself.

I'm thinking that you can be frank without freaking them out and that it's like sex - don't lie but don't need to tell them more than they "need to know" at any given time -- and wait for questions.

But family secrets just create dysfunctional families and distrust. Who needs that?

But everyone's different.
As I desperately try to remind myself every time I run into my outlaws.
 
A

anonymous

New member
I think it's best to give the disease a name. "CF" is fine. And to say something like "Folks with CF get lots of mucus in their lungs and have trouble digesting stuff on their own. So that's why you take these pills and I 'beat' on you" or something short and sweet like that. Don't have to get into the mortality statistics (which change every year anyway).

I say this because CF runs in my husband's family and the parents of the kids with CF treated it like some big family secret. Never told the kids. Never let the adults even say "CF" within hearing range of the kids. Hardly even talked about it at all. Just whisper whisper whisper "She's home getting IVs this week."

Now the girls are in college and unless they are complete idiots (and they certainly are not) they know, but still its whisper whisper whisper. Last year at Thanksgiving when the girls were near me someone asked about my husband and I said something like "well, you know he's got Marfans" and they said "Marfans?" and I said "yup, well it's not just CF that runs in this family" and one of the aunts went "SHHHHH!" and threw a look at one of the girls that said "don't let them hear" and I glanced over at the girls we looked bemused as hell and just shrugged. But I did drop the subject.

Now how can that kind of secrecy be helpful? Seems to me it leaves them all alone and feeling weird as hell. And as they got older if they wanted it, their Uncle Rip (my late husband) could have been more support to them if the 3 of them could have talked out loud about what it was like to live with an illness that presently had some dumb prognosis of "dead at 35" if he'd been "allowed" to say that that's what he'd been told in 7th grade about Marfan's (that was "forbidden" too. ANY talk of death or terminal illness was/is forbidden.).

Seems better to me to be terribly "matter of fact" about the whole thing. Just deal with the treatments and stuff matter of factly - like brushing your teeth or something. I would think that would help the kids take over the management of their illness as they get older too.

I mean that's what my friends whose kids have diabetes do. I remember years ago spending the night at one family's house and the 7th grader (who was living with diabetes) got the orange juice out of the fridge, poured me a glass, put the juice back, got out her insulin, sat down, gave herself a shot in the tummy, etc. All the time talking a blue streak the way a 7th grade girl can. It was just a fine time. That girl went off to college real comfortable in her own skin and able to care for herself.

I'm thinking that you can be frank without freaking them out and that it's like sex - don't lie but don't need to tell them more than they "need to know" at any given time -- and wait for questions.

But family secrets just create dysfunctional families and distrust. Who needs that?

But everyone's different.
As I desperately try to remind myself every time I run into my outlaws.
 
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