SaraRe: Everyone is so helpful

[Guest guest]

Sara

It is sad.....but I think it is true for so many of us. We end up

relying on internet friends for that contact. People are scared of

us, and it is more than just being afraid to act normal around us,

they really are afraid of having to think that something similar or

horrible could happen to their kids, so it is easier to stay away.

You WILL find new friends so do not despair. Iknow it hurts....

People are uncomfortable with anything like this and so they just stay

away. I hear it happens, too, when something like a child dies. You

find out who your true friends are, I suppose. Hang in there and let

us know what we can do for you.

take care,

Jen

> > > 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.

[Guest guest]

I too have had people avoid us because they don't want to hear about or deal

with the fact that our child is " sick " . One parent even went as far as to not

let her child attend my son's 4th birthday party, because she didn't want her 8

month old to catch something from Piper. Like if they breathe the same air that

her kids will catch CF?! People are just stupid and it's worse when they don't

try to make an effort to understand. Our really close friend are still there

for us, some even went out and bought the CF book by Orenstein, for those

friends I am eternally grateful!!

Katy

jenmommyof7 wrote:

Sara

It is sad.....but I think it is true for so many of us. We end up

relying on internet friends for that contact. People are scared of

us, and it is more than just being afraid to act normal around us,

they really are afraid of having to think that something similar or

horrible could happen to their kids, so it is easier to stay away.

You WILL find new friends so do not despair. Iknow it hurts....

People are uncomfortable with anything like this and so they just stay

away. I hear it happens, too, when something like a child dies. You

find out who your true friends are, I suppose. Hang in there and let

us know what we can do for you.

take care,

Jen

> > > 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.

-------------------------------------------

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be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

[Guest guest]

Marie,

The book is called, " Cystic Fibrosis: A Guide for Patient and Family " , by

M. Orenstein. Depending on whether or not you are open minded and optimistic,

the book can be scary or informational. I myself haven't read the whole thing

yet, there are some chapters I haven't been able to bring myself to read. But

as far as basic information, this book is great. It has helped some of my

family to understand that there is more to CF than one might think. Another

book that I think is WONDERFUL is, " The Spirit of Lo " . It is written by the

parents of a girl that has CF (yes HAS, she is still alive) It is very

inspirational.

Hope this helps.

Katy

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

QUEENBMALYNN@... wrote:

Hi,

What is this book? Is it helpful or scary?

Marie mom of Sara 14ncf, 4ncf, 5 mo wcf