RE: Re: feeling helplessJILL/Rosemary

[Guest guest]

To all that have younger children,

I remember when my daughter was little and all this was so overwhelming.

The clinic visits, the meds, the treatments. Every new thing was so

traumatic. You shouldn't feel guilty for giving your child a cf gene. Not

any more guilty than your parents or grandparents or their parents passing

on that gene to you. Be thankful that your child is born in this era and

can have a fulfilling life. That there is medication and treatments for

your children to take. If I had to do over, I would not change one thing

because this disease has made me as a mom, wife, friend a much better person

than I was before. Our children as teenagers are immortal in their eyes.

You will go through the times that they won't want to do treatments or take

their meds. They will want to go to clubs just like all their friends. You

and I know that it is not smart to be around smoke and all the germs, but

they still want to be teenagers. I am so proud of the person that my

daughter has become in her 18years that I can't imagine her not being in our

life. She has for the most part, treated her disease and her treatments

just like an every day normal life style. Like brushing your teeth in the

morning or taking a bath. It is just part of it. We make it bad because we

know that it is not normal for every child to do this. Enjoy your children,

before you know it they are grown up and the days of sprinkling enzymes on

applesauce and waking them up for treatments and sitting there while they do

their vest will just be a memory. Those times together with them are

precious times.

My best wishes and love to all.

Tina W., mother of Steph 18yoa wcf

Re: feeling helplessJILL/Rosemary

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 "

>

>

>

[Guest guest]

In a message dated 11/19/2003 9:32:04 AM Eastern Standard Time,

palazo_a@... writes:

> 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

We are too and I feel guilty as hell. As of the other mothers are there with

" I love you sweetie " while I think about all the battles I did with the

kids...they probably heard dammit more than I love you that morning! LOL I

feel

like a hypocrite saying I love you after yelling for over an hour.

We all get through it and laugh.............I hope

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 "

[Guest guest]

In a message dated 11/19/2003 11:21:12 PM Central Standard Time,

ROSEMARY3FOR3wCF@... writes:

We are too and I feel guilty as hell. As of the other mothers are there with

" I love you sweetie " while I think about all the battles I did with the

kids...they probably heard dammit more than I love you that morning! LOL I

feel

like a hypocrite saying I love you after yelling for over an hour.

We all get through it and laugh.............I hope

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 "

I know what you mean I feel like some mornings that is all I do is yell!!!

And I HATE IT!!!!! But We would never get anywhere if I didn't yell about

getting their vest done, or take your vitamins, do you treatments!! I said to my

husband I am glad we live out in the country because if we had neighbors I am

sure they would have reported us to some social worker as much yelling gets done

around here I HATE IT I HATE IT I HATE IT!!!! Someday I just pray they realize

why I have to be the way I am. Deb A