The other day I was in our local supermarket when a stranger stopped
her work, looked sympathetically between me and my son 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.
I am the stranger. Not the specific one in your blog but in many other similar situations. . I vividly remember being on holiday about five years ago and observing (not in a stalkerish way!) a family with a similar configuration to yours. The obvious level of love care and inclusion for both children, one severely disabled, one not, touched me. The patience with which the child was fed made me feel guilty for taking for granted my children’s ability to feed themselves. Everything about that family made me feel in awe. I so wanted to go to that family, not out of sympathy, but out of amazement, and say them what an amazing job they were doing. I can’t be sure why I didn’t but it still plays on my mind all these years later. I think in the main it is fear of reaction that I didn’t. Who am I to judge others parenting skills, either positively or otherwise. And when I see a disabled child or adult I think often I want to reach out to that person, because despite all the joy and happiness a disabled person has in their own life and brings to that of their family, there is still an acute vulnerability which you wish you could m make go away. X
Thanks for commenting Wendy. Your observation of vulnerability is very real. As far as making comments to strangers it’s a constant juggle. We all have our own struggles and it isn’t a competition. We’re all just doing our best.x
You know that has given me a whole another perspective. I once heard of a mother whose only child had downs syndrome, that when she was pregnant again she said that it would give her the chance to be a ‘proper’ mother. You know as a parent of children with special needs that made me angry but your post has made me realise that I am that stranger and I do not know what life is like for her.
Thanks for commenting. I know my experience of disability means I sometimes react strongly to other mums of special needs kids. Yes there are many similarities but each story, experience and perspective is different. We can all be that stranger.
I guess we have all been the stranger once. I always try to draw in those who look at my daughter a little longer than they should, chat, and leave them knowing a little more. I love this graceful post, thank you.
Thanks for commenting. I know I continue to be a stranger every day.