Re: feeling helplessJILL/Rosemary

[Guest guest]

Rosemary,

You are right, mornings around here are hell. She says that I'm

mean, she does not like to do the vest with tobi, so it takes her

longer. Luckily, her school is around the corner, and they are

always late. I just can not fathom your mornings, sometimes I feel

so guilty that I just cry, that is another side effect of this thing

call CF, guilt!

I hope that they are smart enough to realize one day how important

all this is. That they are smart enough to continue all the

necessary things to take care of themselves, because as you say they

believe they are indestructible. But, on the other hand that goes

with any teenager, my next door neighbor was in a horrible car

accident, January of this year. Doctors told his parents that they

truly did not know what the outcome was going to be, one doc said 40%

brain activity. Luckily, doctors are just as smart as the books they

right, and he is walking and talking again, milestone by milestone

but he is coming around. His mom said the trauma center were he was,

was full of kids that have been in car wrecks, very depressing. So,

may be our kids will be a little more careful in that regard.

Another thing that bothers me, is when she starts going to clubs,

they are usually so smoky, I hope she has enough sense to stay away

from these places.

Well, as usual I'm rambling,

mom to a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf

> Jill:

>

> I remember feeling so miserable (one of many times) and my husband

said " once

> they (family, friends,etc.) leave and the door shuts they forget

it - we live

> it " . The treatments might not be horrific but to get a child to

sit for

> that length of time - and waking them up to sit is awful. Its like

the feeling

> you get when you have to go to Motor Vehicles. I try, TRY, to keep

telling

> myself how I am helping them - even though they fight me tooth and

nail. I

> leave the room machines go off, sometimes nebulizer cups poured

out, pills in the

> garbage. They are CHILDREN and THEY don't understand they

importance. I

> remember being 16 and in the car with someone drinking. I thought

I was

> indestructible.

>

> If you spend 3 hours a day doing treatment - which must be

monitored - think

> about ALL the other things that accumulate. I guess for me its

harder cause

> half the time I have all 3 in different rooms.

>

> I know you are trying to help. Buy her some books on CF; have her

read

> Stevie's world and other " kid " CF books. Sometimes we have to

think about it

> throught their eyes. They don't feel sick so why are we making

them do this. Do

> you really think a 7 year grasp the fact that what he does/doesn't

do now will

> affect him later in life?

>

> Your sister is frustrated - rightly so - acknowledge that and let

her feel.

> Rather than say you SHOULD.......say I heard of this woman

who....i.e. read

> the paper in the morning while her daughter did the vest; cut

coupons, sewing,

> colored with - did any activity with her child during treatment

time. It

> doesn't have to be horrible.

>

> Rosemary in NY with 3 children (13, 11 and 7)

> with CF. I have a dog named TOBI and have

> coined the phrase " BREATHE DAMMIT "

>

>

>