frustrated

[Guest guest]

Hi all! I haven't really posted in a while, but I do read all the posts. We

are coming up on the one year mark since Piper's diagnosis. So far I think that

I have done really well with keeping my emotions in check, but the last couple

of weeks I have been really down. I don't know why, Piper is actually doing

very well at the moment other than culturing Staph twice since July. Her weight

is up and she is on the growth charts for the first time in her short little

life. I guess I'm just in a funk. I still go to bed every night so afraid that

at any minute she could turn for the worst, I know that it doesn't happen that

fast, but I still am just scared to death. I wonder why this has happened to

us, why it couldn't be me with CF. I am angry at myself for giving this

horrible disease to her, even though we had no idea that we were carriers. My

husband doesn't ever talk about her CF and I can't talk to him about how I feel,

he thinks that I am just feeling sorry for myself,

which I guess in a way I am. I just wish that this was all a bad dream and I

will wake up and she will be fine, no CF. We were told when she was diagnosed

that they were 5-10 years away from a cure. But since I have been on this list

it seems like " they " have been saying this for about 5 years. I'm sorry to go

off on my little pity party here, but you guys here are the only ones who

understand.

Thanks for listening,

Katy

Mom to Austin 4 no CF & Piper 14 months w/CF