Re: feeling helplessJILL

[Guest guest]

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 "