Discussion w/children

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folione

New member
Here's my foaming rant about life expectancy discussions: statistics are only a measure of the people who have already died and have very little predictive value for anyone still living, especially if they are very young. Treatments and drugs change fast and individual variation in outcome is all over the map. Talking about life expectancy statistics for persons with CF has to be very strongly qualified by also pointing out that nobody gets a guarantee of perfect health of long life and you have to take responsibility for getting the most out of today. In the past few months I've seen an otherwise healthy friend retire then get a brain tumor and die; another friend (without CF) die of a heart attack at 54; and another friend go in for a checkup and come out with a quad-bypass at the age of 47.

I'm not saying to disregard or hide the statistics but to not make persons with CF feel doomed by comparison with so-called "healthy" persons.
 
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LisaV

New member
My rant/sopabox, folione, is similar to yours.
What makes me crazy is people assuming that folks that don't have CF (particularly sibs of CFers) are "guaranteed" a long life and, consequently, putting their desires, needs, triumphs way after the CFers.

This idea that some have that everyone in the family that does not have CF somehow or other shouldn't ask for anything or shouldn't expect consideration, but instead should always put the CFers first. Like anyone of us might not drop dead or get hit by a truck any day? Like we're not all mortal?

One of the really nice thing about my late husband and probably the main thing that kep our marriage healthy was that he was committed to having us have a relationship where <i>both</i> of our needs were met.
 
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anonymous

New member
My parents really never did tell me the "truth" that most people, if not all, die when they are young or won't live to see their children live and I am glad for it. Even now, if i mention death my mom says that you never know anything and they might come up with a cure.

what is the problem with thinking optimistically? i think that every child needs someone to be optimistic for them, because they might not be able to be that for themselves. He will find out soon enough that it is a fatal disease but i don't think you ever have to say that he will die from it early.

kids deserve to be kids and he should be able to have as normal a childhood as possible. this is too young to bring up death.
when he has questions about it tell him the truth but never say that he will die from it because you never know.

I see too many of my second graders(they are 7 also) taking on serious subjects they are not ready to handle and he shouldn't be one of them

Sue 24w/CF
 
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Emily65Roses

New member
My parents were always upfront, much like Ry's parents were. I will forever be grateful for them treating me like I had a brain, and not like I was an idiot child that needed to be sheltered from fact.

There is a big difference between being pessismistic and realistic. A lot of you seem to lump them together. You can be realistic, and still optimistic. Being optimistic without any real basis, any real ground to stand on, makes no sense. Not to say good things never happen, but are 70-year-old CFers common? Not yet, no. Sorry, it's truth. Maybe your kid will be a lucky one, maybe not. They should know that, just as I said it. Everyone is different.

And please don't feed me the bus argument, I've heard it more times than I care to, and as much as it's true, it makes me angry. Yes, anyone could be hit by a bus at anytime. But being hit by a bus suddenly and dying is much different than suffering and fighting to live, your <b>entire</b> life. I don't care that everyone dies, having CF is different. Just like having cancer would be, or anything else of that nature. It does make a difference whether or not you like to think so.

Let me put it a way I've heard it before:
"Anyone can be hit by a train. But having CF is like being tied to the tracks, watching the train coming at you."
Not to say we need to just sit in despair and watch the train coming our whole lives. But we should do what we want to do, like Allie said, the important stuff. Be sure to do that first, to make sure it gets done. Otherwise a CFer might d*ck around, doing unimportant things, thinking they have all the time in the world... and then one day, oh sh*t, they're dying. And because you hid the truth, they never got a chance to get married or have kids (or do whatever happens to be important to them). Does that make sense? Not to me.
 
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Ryleigh

New member
The biggest thing that helped me was that 'I Wanted to
Live'!!!!!!!!! And to live as long as we can, and to live so we
don't stand out too much from our friends (coughing etc..) we have
to do all our treatments and meds! So that's what motivated me,
although my brothers had a hard time accepting their CF and all the
treatments.
 
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anonymous

New member
But Emily, there are a whole lot of things that "anyone" can get - cancer - hit by bus and end up quadrapalegic - MS - you name it. It is different for CFers because they aren't allowed to pretend that they are immortal or that they are permenently able bodied. ALL of us are just temporarily able bodied and all of us are mortal.

If we were honest we'd realize that we don't really know if ANY of our kids will live long enough to grow up and get married and have kids. That any ONE of our kids could die before they grow up. It's just that as parents we find it easier to pretend that our "healthy" kids will. We find it easier to pretend that they are immunized against illnesses and accidents.

If we want to look at death at as a train coming toward us then all of us are "tied to the tracks". CFers may know the train is coming at them at a fast pace, but it might be coming at just a fast a pace at others in the family. Don't think anyone should postpone for tomorrow what they really want to do today.
 
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Emily65Roses

New member
I can't tell whether or not I need to respond to you? Haha. I totally agree with "don't postpone." Only main point I had... is that in most cases, CF parents don't worry "if" their child will grow and blah blah etc. They don't worry "if" their child will get cancer and die. They know their child has CF, and will die. Before their time. Don't know when, but earlier than they should. And in a not-fun fashion.

I think of healthy people not so much tied to the tracks... (at least until they hit around 70 or so), but running back and forth over them. A lot of the time they get off safe. The train misses. Sometimes, while tempting fate and the train, they get hit. But more often than not, they get away safely until they hit 70... then they're just too old to run as quickly across the tracks, and <i>that's</i> why they get hit. Haha.
 
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anonymous

New member
I just still don't think that a seven year old should be told that the chances are greater for him to die young. when he gets older then you can talk to him but at this age I think you should just focus on stressing how important it is to do his medicine and that he can get very sick if he doesn't. A seven year old is too young to hear that he most likely will die before he gets to do what he wants. that is too much to put on him.

Also, i don't think that by not telling him about death he will not have a chance to get married or have kids. he will find out the true way before that stage anyway and he should by no means be in a hurry to marry just because of CF. He should marry when he is ready, not because of a disease.
 
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coltsfan715

New member
Just wanted to say ... I agree with whoever (annon) posted above me.

Also to add, as a parent you know your kid better than anyone on here. You will probably know when it is the right time and if they can handle it. Each person handles it differently, some on here heard at an early age and are glad, I personally would be pissed had my parents told me at 5 or 7 about all the details of CF because I wouldn't have been able to handle that info properly at that age.
People with CF in general have to grow up faster because of their disease, that time will come right now I would (my personal opinion) not lie to my child if they asked questions but I would wait to unleash all the facts about CF and let them enjoy a few more years of not knowing all the possibly ugly details. I know to some that may seem ridiculous, but that is just what I would do - that is how my parents handled the situation with me and I turned out fine. I am pretty educated about things CF-wise and very inquisitive and ask questions about everything with my docs. I understand why I have to take care of myself and am driven to do what I need to do to stay healthy.

Whoever mentioned counselling might have been on the right track. Maybe if you did that your child could talk to someone not involved (possibly revealing more to that person than his parents) and you could get advice from them on how to handle the situation.

I will stop talking, but I am sure that no matter how you handle the situation it will be the right way for your child. Many parents tend to know deep down what their children can handle and what they need based on maturity and personality and I am sure you are no exception. Best of Luck with the situation.

Lindsey
 
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Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
should by no means be in a hurry to marry just because of CF. He should marry when he is ready, not because of a disease.</end quote></div>

Not what I meant. Let me use me really quickly to more clearly illustrate what I mean.

Mike told me before that if circumstances were different, he hadn't originally planned to get married until his late 20s / early 30s. Because of our situation, we have (tentatively) settled on a 2010 date, making him only 24. Not that that's too young to get married, but it was younger than he originally estimated. And he has no problem with that, because we will both be graduated by then, and adult enough to handle it. He just previously hadn't planned on going in that soon. BUT, given how precious time (mine / or ours together) is, he's happy to push our marriage up a few years earlier.

I didn't mean people should run around like chickens with their heads cut off going "AHHH I NEED TO GET MARRIED, LET ME FIND SOMEONE AND MARRY THE FIRST LOSER I COME ACROSS!!!"
All I mean is that it's important to prioritize.
 
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anonymous

New member
I agree with Lindsey that you should do it slowly over time in ageappropriate ways.
I think you have to be sensitive to the fact that you might have some sensitivity in sharing the harder truths because they are hard for you though. Seven is too young but don't put things off later because you are actually protecting yourself rather than your son.

I say this because back home after my husband's funeral I was chatting with one of his nieces that has CF and we were joking and laughing about how impossible to slow him down - how I had to jog to keep up with him when he was out and about in his powerchair with his O2 tank hanging off the back. She was laughing, but her dad winced and looked down at the floor when I said "oxygen" and then left the room. (These are the parents who hadn't told their teenage kids they had CF . I think maybe this young woman only found out when she turned 18.) I would imagine open, honest discussions are pretty tough to have in this family -- and that seems too bad.

Take care.
I'm sure with all of theses different suggestions and viewpoints, you'll hear some that seem to "click" for you and will help
 
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thelizardqueen

New member
I don't think there's a magical age, or an "appropriate" age to tell your children the ins and outs of CF. I think you have to base it on the individual. Can they handle it at a younger age? Can they not? You know your child better then anyone on here, and you know what they can handle. I've always known the ins and outs of my CF for as long as I can remember, and I was perfectly fine with that. Base it all on what you know they can handle at the moment.
 
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