RE: I just want to scream

July 14, 2003

In a message dated 7/14/2003 6:52:48 PM Central Daylight Time,

tczcowl@... writes:

> Cheryl

>

Your right it is not fair!! and I hate this disease just as much as you but

we can't let this disease get the best of us!! We are strong and we need to

continue to be strong because someday there is going to be a cure and we will

then have to call this web site the cfparents that survived CF!! Hang in there!!

Deb A

July 14, 2003

I have already screamed and cried and then discovered that there are people

out there who will care almost as much for my son as i do. I got very lucky in

that the two caregivers who have my son during daycare have been reading up on

it and they are totally in love with my son. When cf was diagnosed my son had

only just been signed up at the day care and when i discussed the diagnosis

with them they were very cool with it. They asked the questions and now they

are a big part of my support group. They let me know under no uncertain terms

that they care what is going on. They call me if he doesnt go to school and they

tell me that we are gonna fatten him up together. This being a major concern

right now because at 5 months he is only 5 lbs 5 ozs. The docs are being

agressive and i am positive that it will work out. So long story short keep your

chin up and dont be afraid to ask alot of questions. A small home based child

care or small groups divided by age will probably make you feel alot better. I

hope you find what i have found.

Marie mom of 3 youngest wcf

July 14, 2003

Cheryl,

I can certainly understand your frustration. When Piper was born I was working

as a Paralegal for a local attorney. My pay there was excellent, but I wasn't

able to go back to work because Piper was always sick (before her dx) Once she

was diagnosed, we were in the hospital for a month and she was still so small

that I couldn't and wouldn't put her in daycare. My husband and I sat down with

all our finances and were able to cut out a lot of extra things that we didn't

need and I now stay home. It isn't easy and we live paycheck to paycheck

(barely) but we do it because we know that is what's best for Piper and Austin.

I know it is so frustrating at times, but you are not alone in this battle.

I know that religion isn't supposed to be discussed on this list, but as long as

you have faith, the lord will provide. I'll keep you in my thoughts.

Katy

mom to Austin 4 no CF & Piper 1 yr w/CF

T & C Cowl wrote:

Hey all,

I am heading into the fall, having to have to put my son with CF into

day care. He has been with either myself or my husband since his birth

but it looks like now we have to find other arrangements come the fall.

My middle son is part of this mix too, which makes the cost even more.

I think it will probably be around $1500/month for the two of them. I

am just sick over this for many reasons. Financially of course that

freaks me out, can we afford this, we will only have one income for

Sept. to Dec. since my husband is finishing his teaching placement by

doing his practice teaching. NO PAY there. And then there is the

question..who can I find to look after my Matty. I just don't know what

to do..it is making me crazy...I am feeling so angry, I hate feeling

this way but I am Mad at the world right now!! Why did this happen to

us...I am so angry. No one but you people on this site can understand

my feelings. I can't talk to any of my friends, they always ask me when

I am crying or upset, Have you taken your medication?

UUUUUUUUGHHHHHHH!!!!

Thanks for listening.

Cheryl

July 14, 2003

What a beautiful & truthful answer. We can call it whatever .----but it

means don't give up . good things will come around the corner. there are

reasons for every thing. Some of us call it faith.....Call it what ever YOU

want to, But hand it out & let " us " supporters help you . You have lots of

shoulders to lend on. Your needs for your family will

come......................

With much love, lots of hugs ,

a & special wishes all over you !!

~~~~~~

GrandmomBEV

Re: I just want to scream

Cheryl,

I can certainly understand your frustration. When Piper was born I was

working as a Paralegal for a local attorney. My pay there was excellent,

but I wasn't able to go back to work because Piper was always sick (before

her dx) Once she was diagnosed, we were in the hospital for a month and she

was still so small that I couldn't and wouldn't put her in daycare. My

husband and I sat down with all our finances and were able to cut out a lot

of extra things that we didn't need and I now stay home. It isn't easy and

we live paycheck to paycheck (barely) but we do it because we know that is

what's best for Piper and Austin. I know it is so frustrating at times, but

you are not alone in this battle.

I know that religion isn't supposed to be discussed on this list, but as

long as you have faith, the lord will provide. I'll keep you in my

thoughts.