When my son walked into the kitchen the other evening….I was expecting him to do his usual begging for me to find his pajamas. Instead, I was faced with another look of astonishment and forthright announcement that he was “different”.
“Mommy”, Ian sais. “When I look in the mirror, my face doesn’t move!” “My only expression is when I smile and then my mouth moves”.
I was at first startled by the fact that my 6 year old was familiar with the word “expression”. Once I moved on from being overjoyed with his big vocabulary – it struck me that my child was very sincere about what he perceived was a newfound circumstance. I on the otherhand, knew this uniqueness of and lack of muscle tone and facial expressions that typically occurs in children with Russell-Silver Syndrome – was “normal”.
And, then I became sad. Not for me – for Ian. It was a moment of clarity for him, and a moment of realization for me – we were yet faced with another moment to embrace his differences and help him through yet another small transition for being unique.
Due to poor muscle tone in our children, when Ian smiles – his eyes don’t really “smile” or “laugh” – but, stand firm as if his thoughts are continually the same. The top lip of his mouth does not curl up into the sides of his cheeks – yet instead – makes a straight line across, almost as if he is hiding an orange peel between his top lip and upper teeth. And although we (his parents) are aware of these slight differences in him – I was especially shocked to hear Ian proclaim this distinction about himself.
It’s times like these that encouragement toward a positive and supportive discussion about what he sees compared to what he believes is the norm – is incredibly important for Ian’s psyche and self-worth.
Then…….a month or so later……just yesterday, in fact. We talked about his pinkies. His fifth fingers curve in – and are quite unuseful, as they do not have the normal structure of the other fingers to carry out their intended use (whatever a fifth pinky is “supposed” to do). His right hand is larger than his left, and yet his right pinky is shorter than his left pinky. “Do your pinkies bother you Ian?” “No” – he remarks. “They curve in”, Ian sais. And then he proceeds to try to bend my pinkies in the wrong direction. When my pinkies don’t “bend” the way he wants them to…..(fortunately I can endure small amounts of intense pain when necessary)……he gives up the conversation entirely and moves on to coloring his Star Wars coloring book.
So, for now – that anomoly seems to make no difference to Ian. So today – we move on to the ears. “Mom”, Alexander sais…”Ian’s ears stick out”. “Xander!” I reply with my hand covering my mouth as if he had said a swear word. Then Ian pipes in…”I like my ears sticking out!” And the conversation ended.
So, through all of these epiphany’s from my child over the course of several months – I wonder if any of these topics will be broached again. To this day – he still “hates” having a mickey-button (g-tube). And fortunately, for now – he doesn’t hate his emotionless face, his clynodactyly of his fifth fingers, or his protruding ears.
I just hope he loves himself as much as I love him……and wonder……should I point out that I have really ugly feet??? 🙂 Maybe that will make him feel better – LOL
Copyright 2010 – Heather J. Earley