Saturday, September 23, 2017

How We Do It



When I feed Sophie oatmeal, I put one hand on her forehead and with the other coax a spoonful into her mouth. Then I put a finger on her chin and will her to keep her mouth closed and chew. Then I quickly scoop up the drool and any food that isn't chewed up and put it back in her mouth. I keep my hand on her forehead the whole time so that she doesn't drop her chin and let it all fall out. This routine is the same at lunch and dinner and I am patient on the outside, mostly, but dying on the inside. Her physical abilities are changed, too, but I don't feel like going into those here.

Do you want me honest or do you want me inventive?

I only have theories as to what's going on and actually don't welcome yours unless you've been helping me out for years or otherwise get it. I am taking the necessary steps to make sure that this is not the new normal. 

Yet, Sophie is incredibly alert and responsive and is having very few to no seizures and for that I am grateful.

I remember talking to my friend Erika years ago when she was struggling intensely with her daughter's cyclical vomiting and simultaneous seizures. Her daughter has a rare genetic defect that causes her countless issues, and Erika was in the full throes of it. I'm talking vomit and suctioning and seizures and more vomit and no sleep and no washing machine in the apartment to wash the soiled linens. No nursing, either, and a dear husband who had to get up early in the morning and go to work. It sounded, frankly, completely insane, yet she was living it and laughing with me over the insanity.

For a while, my friend Jody repeated this to herself and to me, "it's impossible," and I felt released from any burden I might be carrying.

I've walked into Sophie's room numerous times and found her seizing, sometimes safely on the bed and other times splayed in various positions on the floor. One time her head lay in a soft box filled with toys, another time she was on her knees, folded over on the mattress, her arms stiff, as if she were crucified. Honestly. Inventively, she was a prostrate supplicant, a postulant, perhaps (I was once a Catholic and was dutifully obsessed with these things). If you saw this stuff, you would, I imagine, cry or panic and certainly express that you couldn't do what I do. I suppose the rush of adrenaline gets you through, or maybe it's dissociation that comes, ironically, in like a flood. It's only occasionally that I think how not normal it all is, how fucked up. And the fuckery isn't just the seizures and suffering. It's the living it.

Do you want me honest or do you want me inventive?

Imagine a scene in a movie where someone has suffered heartbreak or someone has died, and the streets are filled with women in dark dresses, tearing out their hair as they walk down the street together, always together, and wail. They will eventually stop and eat together somewhere, certainly bread and maybe cheese. They'll brush one another's hair and lie curled up on beds with white sheets, their fingers trailing down backs lightly and laugh, always laugh.

12 comments:

  1. Reading about saintly special-needs-mothers... is alienating. Crying over the awfulness while also knowing how fiercely you advocate for Sophie's personhood is far more relevant than creativity.

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  2. The many ways in which you "do it" astound me. Whether you are figuring out how to position her to feed her or how to keep your sanity and your sense of humor are indeed inventive but real as bread and cheese. And then...you turn it, somehow, magically, into poetry, all the while holding her forehead so that the oatmeal goes where it should.
    And your honesty and words astound me once again.

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  3. Honest. Inventive. Both/ and. Impossible. Surreal. Mythical. Mystical. Mundane. Terrifying. Love.

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  4. Both honest and inventive please. Love shows through both.

    Best,
    Bonnie

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  5. I will put on my dark dress and walk down the street with you and feed you bread and cheese.

    that photo is extraordinary, a metaphor for the protective cocoon you have lovingly constructed around your girl. you crate as much peace as you are able for her, even at the expense of your own.

    so much love, dear elizabeth.

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  6. Honesty is the best and only way. Thank you for being the real and strong you. Love and peace to you and yours.

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  7. Last week I bought a book called, There Is No Good Card for This: What To Say and Do When Life Is Scary, Awful, and Unfair to People You Love. Very often there are actually things to say when somoene is hurting. But sometimes, there is nothing to say. No advice (though that is almost always wrong), no words of wisdom, no saying that I understand (also, always wrong). The only things is to let people know you actually do care. I do. To reach out a hand. So, I am reaching out my hand.

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  8. Nobody ever tells us that life is not fair. Nobody ever warns us that life will be so difficult we cannot imagine how to cope. Nobody. It's either a conspiracy or a precaution.
    And yet, you do this.

    You teach me many lessons. Thank you.

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  9. I'm so sorry to read all this bad news about Sophie. These periods of deterioration are so difficult for parents and I, for one, just never grow used to them. True, most of them do eventually pass but each one takes its toll. I wish you both the strength to weather this and to have Sophie return to her previous self very soon.

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  10. Yes. Sending love. Sabine's words speak to you for me today.

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  11. It is indeed impossible... and you do the impossible daily with the greatest Love, with honesty and being inventive, which comes with extreme Parenting and also with Caregiving of any Loved One whose Normal is anything but... Virtual Hugs.

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  12. I want you to keep being you, because you are both honest and inventive, enlightening and thought-provoking.

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