Julianna named everything.
Her ponies were Strawberry, Candy and Beach Ball. Members of her little raccoon family (they benefitted from alliteration) were Ellie, Edward, Eliza (pronounced (EE-liza) and Edwin.
She loved some words just for the way they sounded. This is why she named her glow-in-the-dark ceiling stars “concubines.” (I think she learned that word from “Mulan,” and I’m pretty sure she didn’t know what it meant…because I know I would remember that conversation.)
The little girl who loved words and stories never wanted anyone (or anything) to feel left out, so even ostensibly utilitarian objects like staplers and bread boxes became characters in her extravagant and whimsical adventures. They made treks to see the Wizard, set traps to catch boys who kept messing up her room, and they helped her plan parties with “every color” balloons (but no gray, black or brown) and watermelon juice. If they were nice, they got invited to tea.
This marker was called “Purple Grape”, and it went on adventures too.
One of Julianna’s nurses told me about Purple Grape. One day, it played a prominent role in one of Julianna’s stories. Months later, she insisted on finding it again, so they fished it out of a sea of Crayola markers. It was a happy reunion, and the adventure continued.
I found Purple Grape while cleaning out our craft cabinet, and felt the rush of joy/ hurt that is so familiar, but still powerfully and unexpectedly jarring. I found it!/She’s gone.
I tested Purple Grape, and felt the catch on paper that comes from a dried-out marker. Joy fled and there was only hurt. She’s not here, and it hurts so much.
And then, anger at the metaphor of a dried-up marker and the relationship with my only daughter. How stupidly cruel is this?
And I remember her hands. When she was diagnosed with CMT, it wasn’t in her hands yet. I remember the day I grabbed something out of her hand and it just slipped out. The doctor in me knew what it meant, and my heart sank.
I think of other hands, all the ones that helped. There were hundreds of them. They soothed and suctioned, bathed and brushed and they helped her play. They fashioned devices to keep pens in her hand, and when CMT took even that away, they held markers and paintbrushes in her hand so that she could create – because, don’t we all have to create?
Those hands took care of Julianna’s hands. They kept her nails bright and her skin soft. (One of her respiratory therapists from the hospital even came to work early so that she could paint her nails. Love is a superpower.)
I miss her hands, and I miss her magic.
I am grateful for the many hands that sustained her, the ones that did her chores and shared in her magic, and the ones folded in prayer from afar.
She lived — no, she soared — because of of them.