Tuesday, May 27, 2008

Chlorine Dreams

Rough few days. Within 40 minutes of each other, 2 anvils that I had been watching get closer finally landed with a thud on our little corner here. Addie's surgery is scheduled for the worst possible time tomorrow - 12:30pm. You know, no solid food after midnight, only clear liquids until 3 hours before surgery, nothing at all in that 3 hours before. That should make her a nice willing patient.

She was scheduled later because she is older. Yes, almost 5, so certainly older than the babies scheduled before her. The nurse offered the fact that it was done this way because babies cannot understand not being fed as well as older kids. I guess this is one of those rare situations where her diagnosis of Rubinstein-Taybi Syndrome and the accompanying cognitive differences are not on the table. Not even considered. Ironic - would love that, even strive for it in many situations, but not so much for surgical scheduling. So she will not be fed and we cannot begin to reason with her about it. And, like the younger kids going earlier, she cannot talk, so she will not be able to articulate just what jackasses her parents are for denying her food and then taking her to a place with white coats, sharp tools and so many dizzying grave agendas behind the hands poking, prodding, manipulating her. Not to mention the hurt she'll be taking home with her 24 hours (if we're lucky) later.

So I'm cursing the time of her surgery as I drive to the post office to mail back Addie's loaned communication device. We've had it for about 6 weeks or 2 months now. She's done wonderfully with it. This one was not ideal for her, but it's worlds better than nothing and she "owned" it. She showed a lot of doubters just how clever she is with that thing. But it was due back so I had to pack up her voice, her little electronic requests for a treat, for the chicken dance, her comments about how library books smell good, her "Look what I can do" button... and mail it off today. Duct tape is securely fastened beneath her nose again. Just in time for surgery.

I'd like to do an I Dream of Jeanie nod and blink her past all this, into the sunny outdoor pool where she seems to do nothing but count her blessings, 3-way private conversation going on between her mind, her body and the sweet clear water that holds her up.

Picture Addie in her beloved water tomorrow if you can. Rush her there in your thoughts.


Cindy said...

Thinking of you and Addie.

Anonymous said...

Sending lots of watery, wavey, and splashy love and support your way. Maybe with tomorrow's warmer weather there'll be some glimpse of a summer poolside. Here's hoping.

Anxious AF said...

Hope things are getting better as the hours keep passing since the surgery.
Hope Addie is splashing away in her clear water soon!