Friday, February 8, 2008

Still the Same

An old photo of Addie. This was just before she turned 2, about 6 months prior to the revelation that became her diagnosis of RTS. My subconscious keeps this photo at the ready and shoots it up to the surface an average of once per day. I often check myself and wonder if my vision for and of Addie are altered because of her diagnosis. Do I expect more or less? Do I appreciate her more or less? Do I attribute more contentment to her or less? Do I love her more fiercely or just the same as before? At this point, we've known about RTS almost as long as the time we lived without knowing.

I can't answer those questions. I can just look back at old photos and remember the day I took them. Like this one. It was a day in a string of warm days that convinced you that summer was creeping up. The grass was green enough and long enough to have it's first trim. It was warm so I pulled out the frilly, crisp, pink, purple and white summer clothes for the girls.

Addie loved laying in the grass - I'm sure she still does, though our fresh foot of snow outside has made her all but forget about the beloved green fringe. I remember Cate not really feeling comfortable with grass blades tickling the skin on her legs, so she'd sit on her bum with her legs in the air. But Addie loves the feel. She'd lay down and squirm, making little grass angels if it was long enough.

I remember leaning over her this day. I was trying to get a photo of her sitting on the front lawn, just-planted hydrangeas and impatiens behind her. I tried to capture my jump on the season - look, flowers planted, kids in their spring duds, I am one together mom. But she would not sit up. She just wanted to roll in the new green carpet just installed. Fine, her call. I got closer and closer. Her chunky triangular legs shifted and rolled all over, and you can see just how that made her feel.

I note that her nose has an orange tinge to it - sweet potatoes were a favorite, as they still are. Her eyes then are the same as they are now - undeniably crescent shaped, the contrast of dark pupils make the blue look like cool liquid. I also see a little sliver of grass on her chin. I probably would not notice it, if it weren't for her severe pica - she eats anything found in nature (grass, sand, sticks, rocks) and many things a bit removed from nature (paper, book bindings, cotton balls, toilet paper...) She probably munched a few blades that day, when I didn't know to be vigilant about such things.

But she's still the same Addie. She's not smiling here because of the camera. She's smiling because "smiling's my favorite" to quote Buddy the Elf. Smiling is her default mode, just as it's always been.

She's still the same Addie, I'm still the same me.

Friday, February 1, 2008

Assistive Technology Awareness

Erika has Rubinstein-Taybi Syndrome and does not speak. Her sister and the rest of her family want to ensure she is heard nonetheless.

McKenna's vision

For more information about augmentative and alternative communication, visit ISAAC.