It’s Gimp Day

It’s Gimp Day June 1, 2015

It’s Gimp Day today. Did you know? One year since Ella first used a wheelchair. One year plus one day since the last time she took a step. Her six month Gimp Day was a celebration of community. One year is a remembrance of all that is lost and changed.

Last night I went on a mission down Memory Lane looking for video of her first steps. I was certain that I had it tucked away with all of the other children’s milestones, but somehow I don’t. I looked in my journal and found where I had written, “Missed getting Ella’s first steps on video. Haha I guess I’ll have to get the second.” But I didn’t.

I looked for videos of her playing soccer or dancing, and couldn’t find them either. The fourth of seven – I guess that’s why there are so few recordings of her. I’d give anything to change that. I wish that I could turn something on and see her once again dancing and twirling her way across my screen. I ache for the sight of her healthy and whole bodied one more time – and I know she feels the same.

She curled up next to me on the couch this morning and slowly turned the pages of our photo book from last year. Her finger traced across pictures from her one-and-only ballet recital, and a tear ran down her cheek.

“I wish I could twirl,” she sighed.

“You can spin in your wheelchair,” I reminded her.

“It’s not the same.”

“I know.”

It’s one year today – the day we’ve been alternately waiting for and hoping would never get here. The neurologist who helped to diagnose her last fall said, “Wait until it’s been a year. Usually where they are at a year is where they’re going to be.”

We had such hopes for today. Things we wished and prayed for. Things that just aren’t.

In my daydreams, I had pictured today with crutches and a return of movement and feeling in her legs. I’d hoped for a path of recovery, and planned how we would celebrate. It doesn’t matter how logical your head tells you to be, your heart hopes and plots all on its own.

I’d hoped for today to look like this

Our day doesn’t look like what I’d wished for, of course. It looks very much like every other day for the past year. There is no miracle cure.

Even as Ella learned to fly in her chair and we learned to adapt to the new reality of our lives, we hoped to wake up and find it all a dream. Somewhere inside, I’d hope that it was all a pinch-me-and-wake-me-from-it-all wild imagining of my mind.

Then we got to today, and it all became immensely more real. It’s no longer the beginning. One year is real. It’s concrete in ways too profound to explain.

A friend of ours told her, “Happy anniversary of becoming inspiring.”

She crinkled her nose and said, “I never wanted to inspire anyone. I only wanted to be invisible.”

He hugged her and said, “It’s a little late for that, I’m afraid. But it’s a new year, and New Year’s are for resolutions. What are you planning on now?”

“I don’t know. Maybe I have to figure out what I want to be first.”

“Do you still want to be invisible?”

“No. Now I think I want to change the world.”

 


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