March 9th, 2017

One last time

It will probably be the last time. We have been doing it since she was 3, every spring. Her with the stickum and wires on her head, sitting in a hospital bed, plugged into a machine that watches her brain. The room is also rigged to record sound and vid. No privacy-- well hospitals don't offer that.

So her on the bed, moving up the years, from coloring books, to 'real books' to her kindle, her laptop, her never-without-it phone...

And me, in the reclining chair beside the bed. She is on a wire long enough to reach the toilet. She cannot go further. She is to sit still and be monitored for 30 hours or so. I am the one who gets snacks, who stays with her to ease the boring hours along. I am, at least this last time, the mom.

(I mean I know I will always be the mom, but next year she leaves peds. She will be expected to stay alone after that.)

I have spent hundreds of hours in hospitals with her-- after seizures, at appointments, and for tests. When it comes to medical settings she is a champ. By the time she was 6 or 8 she had a ranking system set up for the food in hospitals. (Most of it is bad, bring hot sauce...) By the time she was 5 she could stick out her arm for a needle and hold it steady and thank them when they were done. I don't know anyone tougher.

I can read nothing from the jagged scribbles of the EEG machine. It jumps when she yawns or chews, or speaks. Or listens. Last time she used it to entertain her friends-- she would speak or eat and they clustered around the machine giggling-- she got laughing and the squiggles went dark and dense. (This time we were trying to see if she could come off her meds and do it safely.Answer is no, meds for life, but they work at least. And I am not letting myself think about her outgrowing our insurance...)

So one last time to enjoy the moment. She is well. She has grown into a young woman. She is old enough to keep herself safe. That is what I prayed for in those hundreds of hours. This. This. Her eating fried chicken and doughnuts on a bed that costs as much as a car, me curled close on a vinyl recliner.One last time to sleep beside her, and listen to the beeps and quiet voices and the not-quiet, never quiet.

TV was having a marathon of Harry Potter movies. So I watched those other children grow up in accelerated time. I wonder how their mothers feel?