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| Sophie on West End, NYC, 1997 |
As a writer, I squirm with words. Sophie woke up. Her father made her breakfast. She wouldn't close her mouth over her cup. Strawberries sat in her mouth, a clump of scrambled eggs, swallowed whole. Here, we said to her. Come on. She jerked her right arm and hand, sharply. Over and over, it wasn't so much a seizure as a perseverance, a movement that we interrupt with Sophie! Stop! Sharply, too. She stopped and then started again. The exchange of wondering between us, twenty years old. What is it? Is it neurological? It'll pass. Let's just wait. I mentioned the ambulatory EEG ordered for her yesterday. When the doctor mentioned it, just to see, I nodded and agreed. I don't really care, though. About seeing. There's usually nothing to see and no remedy for the seen. I watched a strawberry fall from her mouth, thick with drool down her bib. I left the kitchen, left her to The Husband.
As a writer, I squirm with words. I squirm to convey this -- what is it? -- feeling not quite despair and not quite hopelessness. I took a crying shower, my forehead on the tile, imagined it worn, scooped out like a Roman step, trod on, trod on. I am at once mindful of the moment as moment, this too shall pass, yet isn't that a tail behind me made up of moments, stretching behind me, blue and green scales?
Swish.
This is so hard. I cannot imagine. When I try, I want to rest my head on that scooped out tile too. I want to hold you as you cry. Oh hon.
ReplyDeleteA crying shower. Perfect. I feel your words Elizaeth and they truly make my heart ache--- for you, for Sophie, for The Husband, for anyone dealing with what you have gone through.
ReplyDeleteYes. It is a tail behind you.
ReplyDeleteOh god, Elizabeth. You make me cry with the beauty of how you express what your world is like. With your words. As a writer. As a mother. As a woman.
with you in that shower - meatphorically, of course
ReplyDeleteAbsolutely brilliant and heartbreaking.
ReplyDeleteP.S. Sophie was the cutest however-old-child-she-was in the world. Those red sneakers! But mostly those eyes.
ReplyDeleteShe is still that beautiful and although she has outgrown the sneakers, I am sure, her eyes are just as beautiful.
So beautiful and poignant and heartbreaking. You are brilliant.
ReplyDeleteCute, cute, cuter than cute!
ReplyDeleteYou bring people right under your skin, Elizabeth. I've never seen anyone do it like you. The image of the scooped out tiles with your tired forehead against - well - thank you.
The English language is so inadequate in trying to convey the state of love, anguish and exhaustion all together. You did it proud and I feel for you. You, with the cutest baby in the whole wide world
You sound ground down. Disability does that and in the end the only release is death. Until I die, or Katie dies, I will worry about her, I will feel helpless, I will cry and I will deal with it because I have no other choice.
ReplyDeleteI've spent more time in emergency this past week than I cared to. Katie has a staph infection. She's miserable and in pain. People keep poking her with needles. Yesterday she attacked a resident and got a good handful of hair. And I feel wrung out and terrified that she will die from an infection. She won't but that's my fear, always my fear that she will die and it will be both a relief and a heartbreak that I might never recover from. And that's the really hard part for me.
Shower crying is good. A friend told me about that a few years ago and I do that from time to time but I cry so much that I would be a prune if I only cried in the shower:)
god, that's gorgeous. and full of sorrow. and life. i love your words, your keen ear and full heart.
ReplyDeleteSo glad you can express some of what you go through through writing. I find it so helpful to express and sometimes maybe release in some way some of my challenges through creativity of some kind, whether writing, visual art, music, etc. Sophie is adorable in this picture. Life is hard and harder for some than others. You are dealing with a lot and for a very long time. Keep writing and doing whatever helps. Glad you have these outlets. It's healthy.
ReplyDeleteYou bring us right there with you. I feel it. I am awed. I am sorry you have had to feel this for so long.
ReplyDeleteBe still my heart! That picture. I was nursing my own baby and very pregnant when that picture was taken. And yes, this too shall pass but into what? I guess it is best not to think about it,
ReplyDeleteEvery time I come here, there is no doubt whatsoever that you have, indeed, found all the right words.
ReplyDeleteIf this is squirming, please don't stop.
Those eyes. How heavy your tail must be after all this time. Those eyes. Pure love, pure pain. My whole being feels this. Sweet Jo
ReplyDeleteSending you great loving kindness.
ReplyDeleteXXX Beth
the writing has saved you, i think, helps you endlessly regenerate the life force you need to hold your family together. you are so wildly gifted. and beautiful soulful sophie; wasnt she clever to choose you as her mother.
ReplyDeleteI've been reading your heartbreaking last few entries this morning. I'm so very sorry. We who come here, we know better. That matters. Oh dear Elizabeth, oh dear Sophie.
ReplyDeleteOh. Dear.
ReplyDeleteA tail. Yes.
Sending love.