Awhile back, my friend was taking a documentary film class and wanted to do her homework on you. On us. I said sure.
She followed me around for a couple days and filmed my general goings-on--get up, get your twin brother ready, pack up, drive to the hospital, head to the step-down unit, listen in on rounds, snuggle, stare at the coral walls, read the same dozen books again.
She also did a couple sit-down interviews with me, and I knew the question was coming. I’d have asked it too. “If you could wave a magic wand, would you go back and change it?”
This was between the second and third times they cut you open, I think, after the heart surgery but before the Nissen. This was when you were miserable all the time because your tiny, wacky digestive system hated all formula but before I knew the only salve was breastmilk, which my stressed-out udders would not produce. (I would rely on the kindness of other mamas.) This was when you kept spiking fevers, so they’d make everybody who came near you dress in a hazmat suit, and they’d poke you for blood, and you’d lose your mind, and your scarred little wrists and inner-elbows would give up not a dang drop, and I’d cry and cry and cry.
And she was asking me would I change it?
Hell yes, I’d change it. I’d have given everything I owned to change it.
But the surgeries, the feeding troubles, the hospital stay, they were all part and parcel of your Down syndrome, and would I change that?
Would I, if I could, go back to that ultrasound appointment at 18 weeks? Would I reach inside your skull and charcoal-pencil in a nasal bone? Would I reach inside your gut and superglue your stomach to your intestine? Would I reach inside your chest and zip up that gap in your heart?
Would I reach inside every cell of your body and pluck off the extra 21st chromosome and fling it in the garbage like a piece of chewed-up chewing gum?
Listen to me: You are perfect and always have been. No part of you ever needed fixing. What those doctors did was repair a few things. Re-pair. Make paired again. ‘Fix’ implies there was something wrong, and there was never a thing wrong about you. You’ve always been right. Your oddly-shaped ear, your floppy body, your lopsided smile--all right, all perfect.
You’re my love, my sunshine, my guy.
(Revised from an earlier WDSD post.)
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