RE: Re: frustratedRESPONSE-Rosemary

[Guest guest]

Rosemary,

My 'favourite' beatitude is ; God gives special children to special

people. I feel like yelling I don't want to be a special person.

But I don't as I know they are only trying to be nice but it grates on

my nerves.

(Australia)

Re: Re: frustratedRESPONSE

e - we all feel like you do at times. Its so hard to pick

yourself up

but you will! Sometimes we need to feel awful - if that makes sense.

Concentrate on the positive - 1. we learned all those stupid

beautitudes are

BS (i.e. we all have our cross to bear, God only gives us what we can

handle,

etc.) 2. at least with a diagnosis your child is getting proper

treatment(s). Our CF Dr. - who retired - said once when we questioned

all the meds -

years ago kids died now they live longer - due to meds!

3. we are so much smarter than your average bear.

I know exactly what you mean about your husband. Men want to FIX

things.

They can't fix this so they hide! We need to talk - no one wants to

hear it so

everyone says " don't worry she'll be fine " ...its them who doesn't want

to hear

about our fears of our child dying. I try to only think about the here

and

now. If I go further it freaks me out.

I want my children to be happy and enjoy life.

We show them strength by getting up day in and day out and doing all

these

damn treatments. My husband doesn't. I do it with a smile because they

don't

want to do it but I must make them. Its hard being the MEAN one, but

its a

role I am mastering.

Don't beat yourself up for being down. You're right. I know that there

is

no one to talk to thats why we are all here. Husbands hide,

family/friends

don't really want to hear our concerns about death - they say " THEY

WILL FIND A

CURE " ...there is a sale at.....

We are here for you--we do understand and respect you for talking about

it.

That is strength - not avoiding it!

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

Me too.... Why the hell are we so damn special!!!!!!!

Remember the meek will inherit the earth - after all we can take it back from

them.....lol

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "