HI Cloyce,

Sorry for the delay in the response. Thank you so much for the words of
advice and kindness.

My fear for Karen's kids is that if sometihng happens to her and they are
still in the dark that they will grow up resenting her and the lack of
knowledge. Or, that they think they did something to make her sick. I know
it's not my business but I can't help but be concerned.

As for my own rugrats, we are taking it one step, one day at a time. Mt
daughter still sings her little "65 Roses" song that she made up, and she knows
that daddy has a cold that will never go away, and that his cold makes other
parts of his body not work so well. But, she also knows how much she and her
brother are loved. That's the most important part. The biggest thing that I
have learned from my husband is to live life everyday and enjoy every moment.
So that's what we are doing!

Patti

Cloyce Jones <cj1000193@...> wrote:
Welcome Patti,

Wow, this is a tough one. As for your children, answer truthfully but age
appropriate to any questions your children may have about their father's
illness, medications, etc. The main thing to remember is keeping the line of
communication open to them....when they have a question/ or even may possibly
just want to talk about what they think and feel about their father's illness
they will feel comfortable in knowing they can discuss it with you openly. Not
have to hold it in or discuss it elsewhere, to where they may get the wrong
information. Yes, at 4 and 5 1/2 the answers you give will probably be short,
plain and simple...but this is preparing you as they get older in giving them a
little more detail depending on their questions. Plus, you will be surprised in
just how much they do pay attention to what is going on around them, even when
you don't think so....

But I'm surprised that your sister-in-law hasn't mentioned cf to her children,
and that they don't know her true reason for her illness. It really wouldn't
surprise me if her oldest daughter doesn't have questions running around in her
mind as to "what is really wrong with mom?" If she doesn't yet, it may be coming
very soon....unless she's already over heard talk of it but hasn't approached
her mother with her questions.

This is hard, either way....

here I go again, but, I was once faced with a question I knew would come one
day. As I thought about it, I honestly didn't know at the time how I was going
to answer it when the day came except to the best of my ability. Your probably
wondering what I am referring to. My daughter w/cf was born after her brother
had died. He had cf. She has cf.....My question to myself was......do I tell her
about the brother she had but never had a chance to meet? If I do, then I know
as well that I am opening up myself for the questions that one day I knew would
come. And they did. Why did he die? How did he die? Will I die like he
did?........yes, my daughter grew up knowing she had a brother. I couldn't keep
that from her. It wouldn't have been right to him or to her. No, I never knew
what my answers would be when they were asked. I just answered them to the best
of my ability at the time. Tara was 9 years old when the questions came. I told
her he had been born a very sick baby with cystic
fibrosis. He died because his heart got tired and just stopped...I told her I
didn't know how she would die, but yes, that we would all die sometime, I just
didn't know what her reason would be or what my reason would be, but yes, we all
will die sometime. Her reply was " I hope I don't die for a long long time." And
the hardest part was over and we were able to move on.

Yes, there are times it may be hard on them when something isn't going right
with their father's illness, but having a little bit of understanding as to what
is going on I think would be better than them imagining all sorts of
things...which could possibly be a worse case scenerio than what it really is at
the time. You just kind of have to feel your way through it.. But you will do
great. Your already thinking ahead and preparing yourself for the big questions
to come :-)

Love & Hugs
Cloyce
mom of Tara 23 w/cf, tx'd 5-27-99, diabetes
author of:Inner Strength, One Family's Experience with Cystic Fibrosis
www.trafford.com/robots/04-0971.html
----- Original Message -----
From: Patti McDonnell
To: cysticfibrosissupport@yahoogroups.com
Sent: Monday, March 27, 2006 10:20 AM
Subject: [Cystic Fibrosis Support] Talking to children about CF


Hi-

I am new to this group and I am so glad that I found it!!!!

My husband has CF. He is almost 37 and really doing remarkably well. His
sister is 38 and also has CF and is not doing as well.

My question is this... We have a 5 1/2 and 4 year old. While we do not
hide any of my husbands treatments, meds, or difficulties from them, how do you
teach them about CF without scaring them? I have told them the 65 roses story
(my daughter has actually made up a song about it) but are there any programs
that anyone is aware of to help teach them?

I want them to be aware of it - even if they do not understand it fully. My
sister in law has 4 kids - the oldest is 8 1/2 - and she has not told them
anything about her having CF, in spite of the fact that she has been
hospitalized on many occastions for everything from diabetes to lung infections.
I do not agree with that way of thinking and do not want to keep my kids in the
dark.

Any suggestions would be appreciated.

Thanks!

Patti


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