The other day I was in our local supermarket when a Stranger stopped her work, looked sympathetically between me and Sam and sighed ‘Aaaaaah!’, as though slightly disappointed.
Having read many blogs and articles I know this experience is not unique. It seems many parents become indignant and frustrated, wanting to correct the stranger with explanations like “My child is happy and has achieved so much” or “He doesn’t need your sympathy”. In this instance, and more often these days, I simply smiled in return and continued to collect my veg. (I haven’t always been this refrained as I have mentioned in earlier blogs before.)
It isn’t that I don’t want to correct this falsely placed sadness but rather I have come to realise this stranger is simply having the same emotions I once had.
I remember the moment I was told the diagnosis and complications my child may experience. That juncture is etched into my memory like a finely carved piece of wood. Each detail marked, smoothed and toned over time. Without hesitation, I can recall the consulting room where the ‘news’ was broken. My senses flood with the memory; the scent of bleach, glaring lights, the touch of my husbands hand in mine and the silence interrupted by the doctor’s words. Recalling the experience is like hearing an old familiar tune that transports me back in time to a moment and place never to be forgotten.
When a Stranger looks at us with eyes of fear, sadness, confusion or regret, I try to remember that this is their moment of diagnosis.
This is their first flash of disability and the impact it has. I was shocked and saddened by the news of disability and this stranger, stacking shelves, is simply having the same emotions I once did.
Ten years ago, I could have been that stranger. I cannot expect her to feel like me when she hasn’t been on my journey. She hasn’t learnt the same lessons, does not see things in the same way. She remains in the doctor’s office hearing the news’ for the first time. However, I have moved on.
It is as though we all stand on the same beach but some of us have crossed a line in the sand into a world of disability. As a result, our perspective has changed. We look across and see the mountains in the distance as clouds gather and form at their peak’s, while others can only see the sand and dunes close by. The same smell of ocean fills our nostrils, with the sound of waves echoing in our ears yet we look at the beach, at life, in a different way.
I cannot expect others to know what I know.
I cannot expect them to understand.
I think it is important to try and share my vision of the beach. To share my perspective and joys in this new normal. But I don’t want to become hard-hearted or disgruntled because a Stranger only ever sees a sliver of my world.
So with each grimace of confusion, tilted head of sympathy, and sigh of tragedy, at my child’s condition, I try to smile and remember. I was once there too. In truth, I stayed there longer than I would have liked and some days that moment remains too present and close for comfort.
Sometimes, I have the articulation and words to speak. To try to re-assure this stranger that we are so much more than what she can see. That there is more to the world of disability than the doctor’s office. But with each stare, I try to give a little grace and kind recognition that the reality of the ‘news’ can be an uncomfortable and scary place.
The truth is, only a small portion of families get to experience the highs and lows of the journey beyond the doctor’s office.