From the outside this is not a great photo shot.It is taken from a Motorola phone, from a series of shots, hoping for one that shows the happiness in a face.Not the kind of happiness that your favorite flavor of ice cream gives.Or the sip of a really good wine. Not the happiness a memory can offer.Certainly, not the happiness a wrapped present brings.
There is a rare thing that happens with these kids. The ones with cognitive canyons in their minds.The ones who say good bye when you left 5 minutes ago. The ones who remember the friends they see once in a while, but maybe never say their names.This kid has lived almost 14 years trapped in this misfunctioning body.I’m sure she has so much to say.If you want to know what she is thinking and how much of her world she is absorbing, you have to pay close attention to these cues.She is either happy or not.When we see happy from her, we do those things again.
THIS is happy.
This is her inner dancer and this is her teacher, Caroline.Caroline travels from San Diego to us and lets us know and we rearrange our regularly scheduled program to get to dance.We do it for at least 2 days in a row, for about an hour at a time.It’s a sweaty affair.It is the olympics for both of us.The lifting.Abandoning the chair to lie on the floor.The running, the leaning,stretching.It brings on laughing…the kind of laughing that causes exhaustion. For a little while, my girl-who has let her drive to walk wane as her body grows,seemingly giving in to that ocean between function and desire-my girl finds her inner dancer .
Day one is a transition physically and mentally for her. She has to manage her excitement…which manifests itself in flailing arms and twisted legs. It makes her lower gastrointestinal tract kick in. (She poops and farts at ballet. There, I said it. Happens to yoga people,too.So there.) Her hair comes out of its clips.She sweats and screeches.The music is familiar, always the same selections. She knows what’s next.The Waltz in a large circle…1,2,3,stop. 1,2,3,stop.
Caroline is defiant bringing this method to these little bodies.Little bodies that hear the instruction to raise both arms in a stretch and move forward 3 steps.It takes all 3 of us to make this happen.The soft, silky scarves tied to her wrist. Caroline’s gentle touch turns to a firm enough hold, when Addie’s sensory movements kick in. With a repetition of 3 or 4 sets, she is raising her arm on her own (well, the left one is more cooperative than the right one). The expressions are fast. Don’t look away or you will miss her delight in herself when she manages to lean forward as her wheelchair is pushed forward for an 8 count. (picture the inner dancer: up on her toes, arms trailing behind, fingers splayed, shoulders relaxed.She is “run-ning to the oth-er side”; scarves a flutter, the speed of movement creates a breeze).
Over the few years since we met Caroline, Addie’s body has grown. Some of it’s flexibility is becoming tight tendons and short muscles. Some of her brain telling her body parts what to do has been abandoned.The first few sets of practice she was out of her chair, standing (with support) and even occasionally stepping or sitting independently on the floor.Caroline is remarkable in her teaching.She knows what we know.What you see, is not what you think. For Addie, there is no chair and she is quite good at taking a fast run in a large circle and daring a giant leap.
Her inner dancer flies. You can see that on her face.