For those who read my blog regularly (thank you!), you would have seen one recently about having our annual Santa Claus photo taken.
Looking at this photo, I feel a certain amount of dissatisfaction.
Why, you ask? It took me a while to figure that one out myself.
She isn’t sitting straight, she isn’t smiling, she’s disengaged from the scene… and what an awful thing to say.
This got me thinking.
Looking through all the photos I’ve saved in the family files, the things I’ve posted on social media, the ones I’ve hung on the fridge or on the wall, they’re all the same.
Charlie standing, Charlie smiling, Charlie holding toys, books, and ice creams.
Charlie looking normal.
If I had kept all the ‘in between’ pictures, there she’d be with her fingers in her mouth, looking off into space, sitting slumped in an awkward position, sitting alone in her chair, dropping food, with her hand in her pants... why don’t I ever share these ‘real life’ snapshots?
The question I ask myself is this: is it in any way different from cleaning Susannah’s face or brushing her hair before I get the camera out?
Is it the same as discarding any photos that Emily thinks unflattering?
What about asking Dylan to stop making rabbit ears behind his sister or to take the food out of his mouth?
How about the ones I get rid of when I look fatter than I’d like or Michael has a bogey poking out of his nose?
Is it worse than deleting pictures with eyes closed, heads chopped off, clothes dirty, strange facial expressions, or blurred backgrounds?
In this age of endless selfies and millions of family photos on Facebook, is it wrong to show my family only at their best?
Is ‘looking normal’ Charlie’s best, or is it just what I want her to be?
I know that I want desperately for her to be in our photos.
I want her to be present and participating in every trip, every tradition, every party, every happy snap.
In my effort to include her (or perhaps because the other kids don’t want to pose for me anymore) I seem to have more pictures of Charlie than anyone else.
Do you ‘pose’ your child for pictures any more than other members of the family?
Do you ever take photographs during therapy, and if you do (we do), do you ever share them (we don’t)?
Is that different from not taking/sharing photos of myself at the dentist?
Are there things about your child’s disability that are difficult to hide?
Do you fundraise for equipment for your child?