Here’s another comment I wanted to pull out for discussion–this one is from Ellen.
What I forgot to say in my blog is along the lines of what you said: I wish I would have known that Max would do better than the doctors said he would. Of course, nobody could have known what the future held—but if the damn doctors hadn’t done such a number on us at the hospital where he was born, after he had the stroke, maybe I would have had more faith and hope. You know that memory eraser gadget Will Smith used in Men in Black? I wish someone could have waved one of those over my brain to rid it of all the terrible things the doctors predicted. Max has amazed us all. I’m sure you feel the same about Avery.
Our experience with doctors, with regard to Avery, has been a mixed bag. The pediatrician who gave us the Dx did a lot of things wrong (she didn’t tell Tom and me at the same time, she didn’t have any information to share, she didn’t give us the names of local families to contact, she went on vacation the next day, so we had to wait to ask her our many questions) but she did a few things right: she gave me the Dx using neutral language, and she was empathetic.
I really believe she was in a tough situation, one she’d never been prepared to face. I think back on that time and the picture in my mind is of the two of us, bewildered. She didn’t know what to do, and neither did I.
Since that time, a lot has changed. The ACOG revised (twice) their recommendation for prenatal screening. The Kennedy-Brownback bill passed. And yet, there are still many, many situations where parents and doctors find themselves facing off, as adversaries.
I wrote about it here, and here. Just recently, we switched family practitioners and I again felt that familiar defensiveness: would this new doctor see Avery, or would he simply see Down syndrome? Thankfully, he sees Avery.
What has your experience been with doctors? How have you learned to cope?