Tuesday 12 May 2015

Humatrope 4: Lost for Words

Here it is, after midnight, and I have not done a thing to further my medical waste project. I'm at a bit of an impasse with the Words of Love, and things are beginning to pile up. While I ruminate, I thought I'd do some chores, like hemming two pairs of pants for my son, for a (mind-blowing, I hope) trip to Tokyo he and I will soon take. The pants are ready to hem, but it would mean readjusting the tension of my sewing machine, which is set up perfectly for freehand embroidery. So, instead, I sat at the sewing table and wrote out potential words of love on the backsides of a bunch of his abandoned drawings.
The Virgin of Guadalupe and her brother (?)
I wrote: how as an infant she looked like the Virgin of Guadalupe, all swaddled up for warmth; about her fake-fur hair at birth. How she didn't cry, and wouldn't nurse, or even take donated milk from a tiny medicine cup. How, later, she used to reach for any strange man with a beard. How, after several months of growth hormone, she became strong enough to jump, jump, jump in the Jolly Jumper, and in her crib in the morning, like a happy, vibrating puppy.  "Puppy" was her first word, and "Puppy lick-a my lip!" her first sentence. And what she said to me yesterday: I love you so much. More than an angel.

Too weak to cry, eat, or stay warm
Barbies old and new, and none with a matching pair of uncomfortable shoes
Next, I transcribed a recording of her talking to herself this morning about vampires, Barbie shoes, and her brother, while lining up her newly-changed dolls in the bathroom.
6th birthday - a scary vampire, not a funny one!

Nothing that seemed appropriate to embroider...

Then I got into a conversation with my husband about writing another letter to the parents of her classmates, updating them on our daughter's developments: scoliosis, exacerbated by early-onset puberty, requiring a brace. Though most of the children in her class are kind and helpful to her - tying her shoelaces, escorting her to the bathroom - lately she has been teased about her pimples. She is worried about what kids will say about the brace. I am resigned to writing these implorations for understanding and kindness: my hope is these same kids will continue to care for her as they travel through their school careers together. I am arming them with knowledge, so they can respond with understanding.

PWS is such a weird and wonderful condition, and many restrictions apply that would not occur to the average - or beyond-average - person. The usual objective of promoting independence in a child has to be tempered with the best practise of never leaving someone with Prader-Willi unsupervised. Even visits to the school washroom or drinking fountain must be chaperoned: food is everywhere, and any chance will be taken to get it. Not just people food, either, but pet food, dirty food, spoilt food, and things that look like - but aren't - food. It takes a twist of the brain to fully comprehend this. We need all the help from her community that we can get, starting with her classmates.

The first draft of the letter is done. I'll look it over tomorrow. Everyone else is asleep. My daughter is wearing her brace to bed for the first time tonight. A milestone. Maybe the right words of love will come tomorrow. If not, I'll hem the pants. Readjusting machine tension is not that big a deal!

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