Reply Daelynn

[Guest guest]

Daelynn,

I agree ..with your way of looking at CF. I try to have this positive

attitude towards eventhough she's only two and four months and

doesn't ask specific questions yet. One day it is more easy than the other

.... .

Today she was singing a Dutch song for children 'The bird is ill and has to

die' . She had heard it on a tape and said it so innocently and didn't know

the meaning of the words yet. But I wondered at what age do children realize

they have CF. I suppose it is a process and doesn't happen exactly on a

specific moment. Is it when they start asking 'why' ? just started

this phase.

Any experiences to share ?

Liesbeth

mom to (2 wCF) and Kasper (11 months woCF)

> Re: Heaven's Very Special Child

>

>

> >I think that most of the time, he will just think that is is so unfair HE

> >was picked to have such a bloody illness.. and he will be bloody right

> -( <<

>

>

>

> I think it depends on how you treat the disease. There are so many things

> that kids have to deal with that I think it is how they are made to feel

> about this disease. If they grow up knowing about it, learning as much

> about it as they can understand without it being a totally negative thing,

> they will cope better. It's not to say they will not rebell against

> treatments or taking meds, but they won't think they were picked out to

> have

> this disease, they will understand that it just happened, it's part of

> life.

> Everyone is different, some wear glasses, some have diabetes, some are in

> a

> wheelchair, some have cancer...this is just how our kids are different.

> If

> they can see it in a somewhat positive light, then perhaps they can grow

> up

> into young adults who are ready to conquer the world and not grow into

> adults who are ready to give up. When starts telling me about how

> he

> wants to grow up and be an army guy or policeman or have 10 kids, I always

> encourage him and tell him that he will be a great army guy or a terrific

> policeman and wow that's a lot of kids, he even has started picking out

> names. If he believes he can grow up and be these things, I am going to

> believe it too.

>

> It's not easy to always be positive, believe me I have my days, like the

> day

> we were talking about CF and he asked if he would ever not have CF (it

> took

> me by surprise) but I had to answer honestly. Telling him in a way he

> could

> understand, that right now he will always have CF but that the doctors are

> trying to find a way to change that, so that one day he won't have CF. He

> says, " that will be good " . They understand more than we think sometimes,

> and can pick up on the way we feel about things. If we walk around as if

> a

> dark cloud is hanging over our heads because of this disease, they will

> too.

> If we take this as a challenge with the attitude of winning, they will

> too.

>

> **I silently step down from my footstool and bow graciously to all who

> listen**

>

> Daelynn

> PS. Kathy, I love that poem

>

>

>

>

> ***********************

> This is a secular list.

> ***********************

>

>

> PLEASE do not post religious emails to the list.

>

>

> --------------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

>

> --------------------------------------------------

>

>

> Our webpage is at http://www.eohio.net/malbright/cfparents.htm

>

> _________________________________________________

> Post message: cfparentsegroups

> Subscribe: cfparents-subscribeegroups

> Unsubscribe: cfparents-unsubscribeegroups

> List owner: cfparents-owneregroups

> _________________________________________________

>

> WE HAVE A CHAT PAGE!!!

> /chat/cfparents

> _________________________________________________

>

>