I make the daily assumption that people see the little girl beyond her crossed-eyes, her hands going double-time into her mouth, her garbled vocalising and that she is a full-grown five year old in a buggy. How I manage to do this is beyond me...maybe it's because she's an only child.. When people stare I usually smile and imagine they are thinking what lovely thick hair she has or what long eyelashes. Every now and then it hits me quite suddenly: I'm pushing around a 15kg girl who sounds like a baby and often is unable to even look at the person speaking to her, let alone answer 'hi'. And sometimes she shakes like she's possessed. Which seems to be particularly frightening for parents of young children around us (although they are never compelled to ask if we are ok!). It confounds me that people don't attempt to understand her quick eye-gaze, her miniscule smile and her lightning fast frowns and I forget how unnerving it is to ask a child a question and get no verbal response. But it offends me beyond words when people make the assumption that she is intellectually disabled simply because of her physical disabilities. Don't get me started on that one.
The other week while Eva slept in her buggy and we wheeled around my favourite antique/junk store (my Breakfast at Tiffany's-style "happy place") one of the older staff came up to me looking very kindly and asked "What's wrong with her, dear?". My initial response of "Oh, she's just tired, it's been a big day" was of course not what she was really asking and since I had been there for around half an hour and had already found my happy place I was able to answer her questions with honesty about the syndrome, how it affected Eva and in turn what effect it had on me and my family. It was a lovely honest conversation that happens so rarely it left me feeling more empowered to speak about this syndrome that so few have heard of and also made me realise there's something quite nice about being unaware of just how disabled she looks. Perhaps it's because she can be a cheeky monkey, a little ratbag and a sweet darling - all by using her talking stick and facial expressions - that I can look past her severe physical limitations. Long live delusion for as long as possible I say!