Saturday, June 22, 2013

On a brain in a boat and a bed



Sophie lay asleep for a couple of hours this afternoon, so I sent the boys to our friends' pool party and stayed at home, alone, with her. I sat beside her as the sun went down and listened to her breathe, and when she finally woke up, the light was dim in the room and she sat up and breathed funny, sharp little ins and outs, distracted, and I knew she was having seizures and that they might kindle into something bigger but still I sat and waited with her, one hand on her leg, here, her shoulder, there, and when it came she fell backward, onto the pillows, her arms and legs stiff, her mouth a grimace, she was a boat, a u, an angle of limbs. I float away, now, during these seizures, my heart beats like oars, I'm a rowboat and I circle Sophie, and you might only hear the oar dip down into the black but you won't hear a word.

11 comments:

  1. Sometimes I don't comment because I don't know how to parse what I'm feeling. It's so much. There is such quiet devotion and love here, but I also feel the fear and the silent cry of "why?" It's powerful and resigned. It's a tableau, unfolding away from the rest of Saturdays happenings, you and Sophie, sailing on your own sea. I am humbled. Awed. This is love.

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  2. I love the way Sophie holds her own leg here as if in sleep she is trying to anchor herself. Sylvia used to write of the black boat those waters the undertow. I have no idea of the strength in you. It is humbling. I am glad you are capturing it for us in your words and photos. You have made my world immensely larger and better. Much love,
    Rebecca

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  3. I hear the almost-silent dip of you oar.

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  4. take a deep breath and float away, if only for a moment.

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  5. Ah yes, the circling around.

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  6. A girl just a little younger than Sophie, also nonverbal and with intractable seizures, has suddenly taken off with an augmentative communication system after years of trying, and has been letting her mother know all sorts of surprising things, including her awareness many hours in advance of oncoming seizures.
    Oddly, Miel is sleeping at this moment, after an uneasy night, with one hand holding onto one leg, unusual for her.

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  7. I hope the seas are not terribly rough.

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  8. Now THAT is a beautiful poem, Elizabeth

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  9. Oh my. Another breath snatched away with your lovely way of putting the very deepest of feeling to prose. Anchor and boat and oar.

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