Re: Dr. Orenstein's message

[Guest guest]

Dear ,

Sounds like Dr. Orenstein should give workshops to teach how to break

the news to parents!

Our team was good - but we knew we were in trouble when the entire TEAM

of doctors was in the conference room. It had been a VERY LONG day. They

began by asking us if we knew anything about cf. I thought I did, but I

said no. Wanted to hear what they would say. Then they left us to

ourselves for a few minutes. was with a play therapist or whatever

it was called then - not in the room.

We were also told that we had to - or should - tell . I think that

was harder than for us to hear!

For the next year we bombarded the doctors with questions. I learned to

temper questions raised on the list and present them with my own spin.

I was on a tear to get all the information I could. Bob went into a

shell. We dealt with it in other ways that can not be discussed on this

list because it is secular - suffice it to say, the internet and our

faith are what worked to help us deal with the news.

I know they did it as gently as they could - and as straightforwardly as

they could. When I sought help from the psychologist attached to our cf

center, I got nowhere (shot down is more like it). But - pushing for

needs to be met, we managed - and we keep on pushing to find out all we

can, deal with things as best we can - and we work to stay positive.

--

Peace and rainbows, Agnes Agnes.@...