Re: Comment by 15 yr. old boy

[Guest guest]

When my kids were first diagnosed (they were 6, 4 and 7 mons) I was talking

to the mother of a 15 yr. boy with CF. He overheard her talking to me and

when she hung up he asked her if I had 3 kids with CF. She said YES.

He said " WHY? " . She said, " what do you mean why " . He said " its not fair to

the kids....why would she have more? " She told me he was floored that anyone

would continue having kids -- that it was so awful living with CF.

Now I have a 12.7 yr. who I am sure would respond the same way. I KNOW its

the age and it will change, but it breaks my heart just the same to hear " I

would rather be dead than have CF " . Remember, kids don't want to be

different - especially having CF....

I love hearing pregnant woman say " I don't care what it is as long as its

healthy " . Well, for YEARS I have said (giving up healthy since at times

that doesn't seem like a viable option) " AS LONG AS THEY ARE HAPPY " . Guess

what they aren't. Now what? Should I go back to " As long as they have good

hair, height, etc.? "

I know that they will outgrow this phase - at least I hope they do! But

nonetheless it breaks my heart....

my 6 yrs. new line is " Everything happens to me " .....

AT LEAST, my husband has been nice lately.......

Rosemary from New York with 3 children with CF -

they are 12.5, 10, 6......

I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are you ready

for this - TOBI after their medication!!! At least it wasn't albuterol or

Coly...

[Guest guest]

Rosemary,

MY 6 oh wait he's 7 now, anyways, his line right now is..everything

happens to me because not only does he have CF but also psoriasis

that we CAN'T get rid of...arrgh..

Christy Mom of Wyatt 7wcf and Hunter 3wocf

> my 6 yrs. new line is " Everything happens to me " .....

>

> AT LEAST, my husband has been nice lately.......

>

> Rosemary from New York with 3 children with CF -

> they are 12.5, 10, 6......

> I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are

you ready

> for this - TOBI after their medication!!! At least it wasn't

albuterol or

> Coly...

>

>

>

[Guest guest]

I can relate, my daughter says " God hates her " . It's rough, I know. She's

14. But also most times, I praise her for how strong and tough she is and

if you really think about it, they put up with disease, not us as parents.

They are the strong ones. The way I look at it, they're entitled to a

little self pity. But I've noticed it happens more when she's really sick

or having a hard time in school or with someone teasing her or something.

Most times, she's okay with it.

G

mom of Sam 14 w/cf, Matty 10, Bobby 7 no cf

Re: Comment by 15 yr. old boy

> When my kids were first diagnosed (they were 6, 4 and 7 mons) I was

talking

> to the mother of a 15 yr. boy with CF. He overheard her talking to me and

> when she hung up he asked her if I had 3 kids with CF. She said YES.

>

> He said " WHY? " . She said, " what do you mean why " . He said " its not fair

to

> the kids....why would she have more? " She told me he was floored that

anyone

> would continue having kids -- that it was so awful living with CF.

>

> Now I have a 12.7 yr. who I am sure would respond the same way. I KNOW

its

> the age and it will change, but it breaks my heart just the same to hear

" I

> would rather be dead than have CF " . Remember, kids don't want to be

> different - especially having CF....

>

> I love hearing pregnant woman say " I don't care what it is as long as its

> healthy " . Well, for YEARS I have said (giving up healthy since at times

> that doesn't seem like a viable option) " AS LONG AS THEY ARE HAPPY " .

Guess

> what they aren't. Now what? Should I go back to " As long as they have

good

> hair, height, etc.? "

>

> I know that they will outgrow this phase - at least I hope they do! But

> nonetheless it breaks my heart....

>

> my 6 yrs. new line is " Everything happens to me " .....

>

> AT LEAST, my husband has been nice lately.......

>

> Rosemary from New York with 3 children with CF -

> they are 12.5, 10, 6......

> I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are you

ready

> for this - TOBI after their medication!!! At least it wasn't albuterol or

> Coly...

>

>

>