|The Virgin of Guadalupe and her brother (?)|
|Too weak to cry, eat, or stay warm|
|Barbies old and new, and none with a matching pair of uncomfortable shoes|
|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!