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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?


( 6 comments — Leave a comment )
Mar. 9th, 2017 06:05 pm (UTC)
Is she subject to seizures? I can remember visiting a school friend's home and having her 'collapse' in the middle of a sentence! Scared the ___out of me!! God bless!
Mar. 9th, 2017 08:32 pm (UTC)

Yes. She has always had them. It has been two years now since the last one, her personal best.

Mar. 10th, 2017 11:11 am (UTC)
This struck so many chords. xx
Mar. 11th, 2017 11:32 am (UTC)
You and C have both been brilliant over these years and you have as a family given each other the foundations to be able to deal with this long term

Truly I think you should send this to the NYT or somewhere
and it should be read by as many people on the planet as possible.
Not being a mum like you and mylodon I come at it sideways as it were, but this is a beautiful and radiant piece of writing -thinking of you :)
Mar. 11th, 2017 09:47 pm (UTC)

I think I missed our Skype. Any chance of catching you tomorrow? I am sorry to be such a chowderhead.

I am so glad you liked this. Writing has been spotty lately. My phone call job grows like a wild vine. It takes violent hacking to keep hours under control.

Mar. 13th, 2017 10:31 am (UTC)
It's so good to read your words again, and your love for your daughter. This made me misty-eyed.
( 6 comments — Leave a comment )