12 December 2012

shine until tomorrow

"And when the night is cloudy, there is still a light that shines on me / Shine until tomorrow, let it be"

It was maybe a month ago. Emma came to me where I was sitting on the couch and climbed into my lap, putting her arms around me and resting her chin on my shoulder. She was smiling, all giggles and dimples.

I felt myself flinch. Waiting. Just waiting for the moment to change into one that's become all too common: her chin, slamming insistently into my shoulder. Her face, red and streaked with tears. Her body, arching forcefully backwards, seeking input from the floor, my chest, my lip.

I was waiting for the breakdown. And that realization was a shock as I held my daughter in my arms and her soft cheek rubbed against mine. I wasn't fully in the sweetness of that moment, because I didn't trust it to last. (It did, in that instance. She let me hold her until something caught her attention, and she clambered off my lap without fuss.)

I've been struggling for months. Struggling to reconcile this drastic change in behavior with the sunny girl I know so well. Struggling not to take it personally, because I know no malice exists in her. And struggling to figure it out-- the function, the right intervention and what brought on this shift.

I'm still struggling, and there are no answers yet. Not for want of trying, though-- her entire team is baffled. As different symptoms and behaviors appeared, we visited the ER. Her pediatrician. Her dentist, which led to emergency surgery to fix an issue that we thought might be at the root of everything.

It wasn't. 

The worst part isn't my struggle. It's hers. It's seeing the bruises on her jaw and chest and legs and knowing she put them there. It's having watched her put them there without being able to stop it from happening, and without knowing why.

I mailed out Christmas cards this week. On the front, there's a collage of smiling Emmas, with the caption "merry and bright". Those are two words I would easily use to describe my girl ... except, now? It feels ever so slightly hypocritical. Sometimes, even most of the time, she IS merry and bright. But a good number of the people receiving those cards have no idea about the other times, when that beautiful smile is absent and those blue eyes are full of frustration. Should I have included a picture of that girl?

I don't write an annual Christmas letter, and I never have. I feel like they're a too-glossy version of the year, covering only the highs and skimming over the lows. Who cares about the lows, right? Well, hopefully everyone who cares about you does.

So here's our Christmas letter.

Dear loved ones,

What a year it's been-- both amazing and awful. Emma has made incredible progress. Some of it's stuck. And sometimes she and I are both stuck in this new behavioral rut, where she acts in ways I don't recognize and I try my damnedest to see her through.

The area continues to add activities and events designed for kids like Emma. Our church had a sensory-friendly Easter egg hunt, and it was fantastic for her. She still loves the gym+swim program (although we all know she'd be happier just staying in the water).

Halloween was a high-low. She was the world's most adorable penguin, and Grandma and I took her to the zoo event. She spent 15 minutes watching the 'other' penguins, completely transfixed and blissed out. Those 15 minutes were worth the price of admission. Good thing, because then I decided we'd try her first roller coaster ride. The short line did her in, and she was a sobbing, shaking heap of girl by the time we boarded. The coaster ride itself? Total hit. But it was done too soon, and we ended up on the ground, rocking back and forth as she cried out all her frustration. 

Potty training was our highest high. She caught on quickly, and it has changed both our lives. Now? There's been some sliding backwards, and I want to think-- need to think, maybe-- that everything is connected, that whatever's causing the behavior has to also be causing this somehow. 

Her team continues to amaze me with their dedication to helping her achieve, to being her best ... and when things are rough, to figuring out what the heck is going on so we can just help her get through the day. 

Sometimes just getting through the day is enough. And we have gotten through each day this year-- maybe not always with a ton of style or grace, but always with enough love to see us through. 

I can't answer the whys, and I can't shift her world to eliminate everything that causes her to struggle. I can only think back to something I read, where the author said, "I want to be stronger than the challenges are hard."

So that's my Christmas wish-- for me, for Emma and for all of you. 


"There will be an answer, let it be"