So then Friday night we decided to take an impromptu trip to the city to see our friend’s cabaret troop Betty & the Betties perform and look at the Christmas windows and take a visit to Santa Land at Myer.
It was lovely being in the city and soaking up the festive atmosphere. Jarvis was enjoying the sights and the lights and we went up to the top level of Myer to Santa Land, as I’d heard there was a ‘Santa Train’ up there. Jarvis got quite excited about the train ride and lined up and I stood near the fence to wait for his ride. As the ride ahead of his took off, I noticed a photographer work his way along the train taking individual photos of the children onboard.
Not a big deal to most parents who probably felt pretty excited by the prospect of a festive train picture to share with the Grandparents. But for me, that uncomfortable knot nestled itself in the pit of my stomach and I sent a silent wish that the photo would be taken sensitively.
You see, due to his facial palsy Jarvis’s posed smile can look like a grimace. One eye is shut, while the other side is open and the smile only opens wide on the left side. A very cheesy grin that only appears on one side. It’s becoming more apparent that people not used to it just think he’s pulling or scrunching up his face.
So Jarvis boards the trains and is up the front. The photographer comes along and says “SMILE” and Jarvis dutifully does so in his perfectly imperfect way. ‘OPEN YOUR EYES’ the photographer demands; ‘C’MON SMILE, EYES OPEN WIDE’ the photographer again demands, more impatiently this time. And just as I lean over to say ‘Just take the damn photo, that’s his smile you moron’ or my polite edited down version of these words, the photographer hurrumphs, shrugs his shoulders without taking even one picture and moves onto the next child.
I feel angry, sad and disappointed. Not for that photo, that I wasn’t planning on buying anyway, but for all those times that my boy will have to deal with such insensitive morons. I can’t shield him from the world and all of its dickheads, but I can try and limit his exposure to situations that could embarrass him and make him question his smile, which is perfectly natural to him. So the Santa photo situation of lining up in front of a litany of strangers with an unknown photographer who may or may not handle his uniqueness senstively is not worth the risk in my mind.
So instead, we have the gorgeous photo (above) of my two boys with three of the Betties next to a Toy Soldier from our little trip to the city. I took it myself and my big boy is happy and smiling – not asked to smile a certain way that’s impossible for him. Just his unique smile, beaming for the world to see.
I’m often asked if there is an operation to ‘fix’ Jarvis’s smile. I usually respond that there is smile surgery which is complex micro surgery which involves a number of operations, which may or may not work. But what I really want to say is that it’s not my son’s smile that needs fixing, it’s the attitude that anything different is seen as needing to be fixed in the first place. I wish there was a way to fix that.