Re: Re: Everyone is so helpful

July 13, 2003

Thank you for your outlook. I am awed and amazed that you can handle 7 kids

no less cf. I am also pretty lucky at work. I run a small office and my boss

allows me to bring my son as often as needed. He has a permanent corner set up

in the office. I am also lucky that his daycare teachers are extremely

wonderful and quite concerned. When we learned his diagnosis his teacher went

out and

started reading up on cf as much as me. She is a blessing. After a doc visit

I will tell her what they are doing next and she is already up to speed. It is

great.

Marie

Mom to 5mo wcf

July 14, 2003

Hi,

I have found quite the opposite thing. My friends, most of whom I have known

since I was a child myself, are still right there for me. One of my hubby's

friends and his wife did pull back a bit but they have a child (#3) with health

issues to and then they found out that they were having another child (#4) right

away. Then they moved so......well, they have a very busy life. I am very

thankful to have my friends and reading these posts about the disappearing

friends has made me appreciate them just that much more. My family and friends

also tried to educate themselves a bit about CF after we got the dx. Do they

really get it like you all do? well no but they try.

Re: Everyone is so helpful

Jen,

Thanks for telling your story. It has only been a few months since

my son's cf diagnosis and our friends are starting to disappear. We

rarely get a phone call or an e-mail to see how things are going. I

have heard from someone who has stayed in touch, that people just

find it hard to be around us. They can't talk about trivial silly

kids stuff because we are dealing with " life and death " with our kid

everyday. We have tried to really reach out to everyone to let them

know that Zach is doing really well and is very much a normal kid.

We just did a letter writing campaign for the CFF and have gotten

many donations but very little personal contact. I thought maybe

our friends were waiting for us to come to them and now that we

have, they send a check, but do not speak to us. I love that they

are being very generous but I wish we could find a way for them to

feel more comfortable around us. It also breaks our hearts a little

to realize that some " friends " we had are really quite shallow.

Thanks - I need to vent!

Sara - mommy to Zach 17 months wcf

> > As a new parent to this group I would like to thank you all

already I

> > have learned and began to understand many things to come. My 5mo

wcf

> > is currently in the Hospital for a " tune-up " now. I feel like i

have

> > someone to talk to if i need it and that is a vast improvemnet

from a

> > week ago. No one in the family understands and when i talk about

what

> > we have to do every day they freak out or get sympathetic. I do

not

> > need sympathy. I am very concerned with his condition at this

time.

> > He is not gaining weight and then we checked in here because he

was

> > dehydrated and down 5 precious ounces. The doc has ordered us to

> > concentrate the formula to 27 cals and hopefully this will help.

> > I have been following all the info on the g-tubes and such and

am

> > grateful to have some knowledge for if this comes up and i fear

that

> > it prob will. Again thanks for all the info.

July 14, 2003

It sounds like a wonderful family & it is great for you . life is so much

better & easier with those around you who either understand or KNOW about

what you are having to do & why. My special wishes & thank yous to your

grand family for that support!

LOVE & HUGS, grandmomBEV

Re: Re: Everyone is so helpful

Hi,

I have found quite the opposite thing. My friends, most of whom I have

known since I was a child myself, are still right there for me. One of my

hubby's friends and his wife did pull back a bit but they have a child (#3)

with health issues to and then they found out that they were having another

child (#4) right away. Then they moved so......well, they have a very busy

life. I am very thankful to have my friends and reading these posts about

the disappearing friends has made me appreciate them just that much more.

My family and friends also tried to educate themselves a bit about CF after

we got the dx. Do they really get it like you all do? well no but they

try.