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

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skh

Guest
It's amazing the things that she has already worked out in her mind. The one thing that she has wanted from very little on has been to be a mom. But she has shared with me that if her husband to be (she hasn't even started dating yet - thank you God!) is a carrier then she may not be willing to have children and pass this disease on to them. I do pray and hope that things change before she actually has to make that decision - she will be an awesome mom and I would hate for her to miss out on that.

Sue
 
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skh

Guest
It's amazing the things that she has already worked out in her mind. The one thing that she has wanted from very little on has been to be a mom. But she has shared with me that if her husband to be (she hasn't even started dating yet - thank you God!) is a carrier then she may not be willing to have children and pass this disease on to them. I do pray and hope that things change before she actually has to make that decision - she will be an awesome mom and I would hate for her to miss out on that.

Sue
 
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thelizardqueen

New member
Tell her that if she doesn't do the meds she will get very sick. That's how my mom brought the subject to my attention. It started with telling me that I will get very sick if I don't take care of myself, or possibly worse. Its not easy to tell a child that they may die sooner then later - but you can't avoid it or sugar coat it because it makes you feel uncomfortable. Kids are a lot more resilient and understanding then we give them credit for.
 
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thelizardqueen

New member
Tell her that if she doesn't do the meds she will get very sick. That's how my mom brought the subject to my attention. It started with telling me that I will get very sick if I don't take care of myself, or possibly worse. Its not easy to tell a child that they may die sooner then later - but you can't avoid it or sugar coat it because it makes you feel uncomfortable. Kids are a lot more resilient and understanding then we give them credit for.
 
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thelizardqueen

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>skh</b></i><br>But she has shared with me that if her husband to be (she hasn't even started dating yet - thank you God!) is a carrier then she may not be willing to have children and pass this disease on to them.



Sue<hr></blockquote>

Its good to know now, that there are ways around the fact that her future husband may be a carrier. She can still have children wheither its through a procedure, or adoption. I'm thankful that we do have those options available to us.
 
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thelizardqueen

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>skh</b></i><br>But she has shared with me that if her husband to be (she hasn't even started dating yet - thank you God!) is a carrier then she may not be willing to have children and pass this disease on to them.



Sue<hr></blockquote>

Its good to know now, that there are ways around the fact that her future husband may be a carrier. She can still have children wheither its through a procedure, or adoption. I'm thankful that we do have those options available to us.
 
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anonymous

New member
This is off on a tangent but I did not want to start another thread on this subject

Here goes

I get many emails from people with CF from all over the world. For some reason college students tend to ask for help on their school projects. One lady last year who I was helping very often asked me how does it feel that your life is short or something like that. It struck me as a very insensitive question. Telling this lady that I had a transplant and all I felt she was going for the throat so to speak. I simply answered her I do not know how long I have to live, my poor donor was only sixteen and he was healthy and I am 46. She wrote back apologizing. I feel people focus on so much about how long someone will live when in fact more healthy and innocent people die each day.

Yes any disease can shorten a person's life and definitely make it difficult but remember there are more people who are very healthy who cannot accomplish have the things that people with CF could do.

I believe that is why many healthy people are attracted to people with CF because of our strength. When discussing the future with a loved one who has CF (who appears healthy) it is not healthy to put limits on the person. The future is always the unknown and many good can come from that. I had a friend years ago say to me, we all start dying from the day we are born. That was kind of morbid to hear but that is how some people think. People think too much of the negative.

Focus on living. it is not fair for anyone even a doctor to pull out someone's time table. I feel sorry for those that do
Risa
 
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anonymous

New member
This is off on a tangent but I did not want to start another thread on this subject

Here goes

I get many emails from people with CF from all over the world. For some reason college students tend to ask for help on their school projects. One lady last year who I was helping very often asked me how does it feel that your life is short or something like that. It struck me as a very insensitive question. Telling this lady that I had a transplant and all I felt she was going for the throat so to speak. I simply answered her I do not know how long I have to live, my poor donor was only sixteen and he was healthy and I am 46. She wrote back apologizing. I feel people focus on so much about how long someone will live when in fact more healthy and innocent people die each day.

Yes any disease can shorten a person's life and definitely make it difficult but remember there are more people who are very healthy who cannot accomplish have the things that people with CF could do.

I believe that is why many healthy people are attracted to people with CF because of our strength. When discussing the future with a loved one who has CF (who appears healthy) it is not healthy to put limits on the person. The future is always the unknown and many good can come from that. I had a friend years ago say to me, we all start dying from the day we are born. That was kind of morbid to hear but that is how some people think. People think too much of the negative.

Focus on living. it is not fair for anyone even a doctor to pull out someone's time table. I feel sorry for those that do
Risa
 
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anonymous

New member
Well, dying young is romantic by nature. Look at all the poetry. Byron, Shelley, Keats. Chatterton. Young Werther. But it sucks if it's you, especially if you're too sick to manage a line of doggerel.
 
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anonymous

New member
Well, dying young is romantic by nature. Look at all the poetry. Byron, Shelley, Keats. Chatterton. Young Werther. But it sucks if it's you, especially if you're too sick to manage a line of doggerel.
 
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Landy

New member
Original poster,
There probably is no right or wrong answer here. I do agree that you want to be the one to tell him, not for him to read it online or see it on a tv show or something.
I don't know where you stand on belief in God but if you do indeed believe in God, you could say that CF can be a very serious disease but that you could also die in a car accident tomorrow and try to get the child to just trust in God to dictate his or her future and for them to try not to worry too much about it until they need to.
Another thing you could mention is that lung transplant could be an option if things get real bad. Having some certain 'bugs' can limit transplant options but maybe by the time your child gets to that point, those bugs won't be such an issue with transplant anymore.
You could also mention that there are some people w/CF living fairly normal lives well into their 30's and 40's and of course the fact that researchers are working all the time to develop new meds to improve quality (and hopefully quantity) of life with CF.
By doing it this way you're not just dumping something on him with no positive outlook whatsoever.
 
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Landy

New member
Original poster,
There probably is no right or wrong answer here. I do agree that you want to be the one to tell him, not for him to read it online or see it on a tv show or something.
I don't know where you stand on belief in God but if you do indeed believe in God, you could say that CF can be a very serious disease but that you could also die in a car accident tomorrow and try to get the child to just trust in God to dictate his or her future and for them to try not to worry too much about it until they need to.
Another thing you could mention is that lung transplant could be an option if things get real bad. Having some certain 'bugs' can limit transplant options but maybe by the time your child gets to that point, those bugs won't be such an issue with transplant anymore.
You could also mention that there are some people w/CF living fairly normal lives well into their 30's and 40's and of course the fact that researchers are working all the time to develop new meds to improve quality (and hopefully quantity) of life with CF.
By doing it this way you're not just dumping something on him with no positive outlook whatsoever.
 
2

2005CFmom

Super Moderator
I have been wondering how to do this ever since my daughter was diagnosed about 6 months ago. I know if she ever asks about it we will answer the question honestly, and I am hoping that she will ask soon. When we talk with the doctors she is always there and words like terminal, life span... were being used so we are definately not trying to hide anything from her. We just don't want to slap her across the face with facts that she can't handle yet. I figured when she was ready to know she would ask. But, as time is going on and she is not asking, I'm starting to wonder how & when to tell her.
 
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2005CFmom

Super Moderator
I have been wondering how to do this ever since my daughter was diagnosed about 6 months ago. I know if she ever asks about it we will answer the question honestly, and I am hoping that she will ask soon. When we talk with the doctors she is always there and words like terminal, life span... were being used so we are definately not trying to hide anything from her. We just don't want to slap her across the face with facts that she can't handle yet. I figured when she was ready to know she would ask. But, as time is going on and she is not asking, I'm starting to wonder how & when to tell her.
 
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littledebbie

New member
My Mom said then when I was about 4 we got home frm a Dr.'s appt. and I said "well it looks like I'll at least live to be as old as Erin" (my older sister by 2 years) my Mom was floored becuase she didn't realise i understood that aspect of my health yet. we never discussed the "death part" much more until I got older it was just discussed enough to let me know if I had questions or wanted to talk it was something I could feel free to talk to my parents about. I was like "cool, I'm gonna go play with my friends now" Kids are way smarter then they get credit for. My guess is your 8 year old knows way more than you think but just isn't getting mired down in it and maybe doesn't know how to talk to you about it.

I think the short life thing is very important to talk about as well as the way treatments have progressed and how the life expectancy continues to grow and also that sometimes we get sick even when we've done everything right and that is not anyone's fault. I used to feel like a failure when I got sick it took me a long time to straighten that out for myself.

On a side note I have to say I love this adult forum but I have noticed a tendency from some of the older cfers to really want to "keep hope alive" and while I'm very happy for them that things have worked out the way they have I would like to point out there are a lot on voices missing on this "adult" folder becuase they were not so blessed. And you can talk about taking care of yourself and mutations, but there's some dumb luck involved too and really all we know about CF and life expectancy is this...whenever you die it will most like be from a complication from CF, you might die before your 18 for any number of reasons or you might dodge bullets and make it to 60 with children and grand children, but more likely it will be something in between and it will definitely not be roses and chocolate coated candies--or gobstoppers.

Emily, I always seem to agree with you and appreciate your ability to communicate your thoughts as elequently and reasonably as you do.

editing to say: totally agree with whoever mentiond it's all about quality and not quantity, "it's about living to live not living to die" (my Mom says that).
 
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littledebbie

New member
My Mom said then when I was about 4 we got home frm a Dr.'s appt. and I said "well it looks like I'll at least live to be as old as Erin" (my older sister by 2 years) my Mom was floored becuase she didn't realise i understood that aspect of my health yet. we never discussed the "death part" much more until I got older it was just discussed enough to let me know if I had questions or wanted to talk it was something I could feel free to talk to my parents about. I was like "cool, I'm gonna go play with my friends now" Kids are way smarter then they get credit for. My guess is your 8 year old knows way more than you think but just isn't getting mired down in it and maybe doesn't know how to talk to you about it.

I think the short life thing is very important to talk about as well as the way treatments have progressed and how the life expectancy continues to grow and also that sometimes we get sick even when we've done everything right and that is not anyone's fault. I used to feel like a failure when I got sick it took me a long time to straighten that out for myself.

On a side note I have to say I love this adult forum but I have noticed a tendency from some of the older cfers to really want to "keep hope alive" and while I'm very happy for them that things have worked out the way they have I would like to point out there are a lot on voices missing on this "adult" folder becuase they were not so blessed. And you can talk about taking care of yourself and mutations, but there's some dumb luck involved too and really all we know about CF and life expectancy is this...whenever you die it will most like be from a complication from CF, you might die before your 18 for any number of reasons or you might dodge bullets and make it to 60 with children and grand children, but more likely it will be something in between and it will definitely not be roses and chocolate coated candies--or gobstoppers.

Emily, I always seem to agree with you and appreciate your ability to communicate your thoughts as elequently and reasonably as you do.

editing to say: totally agree with whoever mentiond it's all about quality and not quantity, "it's about living to live not living to die" (my Mom says that).
 
6

65rosessamurai

Guest
(I'm skipping from the topic to this reply)
When I was diagnosed at 7 (I thought it was 8 and a half for a long time), It was put to me in a way that CF is a deadly disease in which most who have it don't see it past a certain age (at the time, the age was about 18 or so). But, with advances in research, etc., etc., that time can extend.
All this way of telling me was to not say "You are gonna die at so and so age", but to say, in general, this is lifespan as we know now. Yet, when my mother was telling me this, it was all in inspiration of beating those odds.
A major difference between saying "you're gonna die, soon", or "it won't happen to you", but to give the facts with the message to try and live your life to the fullest with the thought to beat the odds.
But this may be why my parents make such a big deal about my birthdays! (I'll be 41 this May)
 
6

65rosessamurai

Guest
(I'm skipping from the topic to this reply)
When I was diagnosed at 7 (I thought it was 8 and a half for a long time), It was put to me in a way that CF is a deadly disease in which most who have it don't see it past a certain age (at the time, the age was about 18 or so). But, with advances in research, etc., etc., that time can extend.
All this way of telling me was to not say "You are gonna die at so and so age", but to say, in general, this is lifespan as we know now. Yet, when my mother was telling me this, it was all in inspiration of beating those odds.
A major difference between saying "you're gonna die, soon", or "it won't happen to you", but to give the facts with the message to try and live your life to the fullest with the thought to beat the odds.
But this may be why my parents make such a big deal about my birthdays! (I'll be 41 this May)
 
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