As I walk my daughter in her pram through the park or on my way to run errands or even to appointments you walk past me everyday – you have all sorts of hair colours, heights and shapes. Some of you have children in their prams too, many are riding their scooters and some are on foot, there’s the odd one of you that does not have a child at that instance or that is carrying a newborn. But there is one thing you all have in common – the look of pity you give us!
If my daughter’s face was a mirror instead, you would see just how awful and upsetting that look is, and perhaps for just one second you would realise that if someone gave you that look even just once you might not be brave enough to ever leave the house with your child again!
But I am not you, any of you! I have never given such a look to anyone who is sick or disabled, children or adults. In fact just last week because I gave a truthful smile to a young women who lives down the road who I think suffers from cerebral palsy she stopped and asked me to help her with her shopping bag, which I did, and then she said – ‘Beautiful children!’ And so I repeat myself in saying: I am not like you who freely give looks of pity without thinking twice. I, like that young woman are better than you because we see beyond what you can see and we go on with our lives without fear of being judged, despite knowing we are all the time!
In normal circumstances, where my daughter would be healthy, you would probably smile at us and at some stage strike conversation. As we go to the same park we are probably ‘neighbours’, you would want to know more about us, set some playdates and coffees, perhaps even lunch and you would hope that one day you would be invited around to us so that you can see our house, how we live and what we have. Our children would be friends and play together and who knows, maybe we would become friends too and so would our husbands and a lifetime friendship would arise from that.
But our circumstances are not normal, my daughter suffers from an illness that has left her disabled and one day it will claim her life. And so you look at her and your own simplicity and fear makes you act like all simple and cowardly people do – you pity us without knowing what you are pitying us for!
If you were to smile at us or strike a conversation as you would in normal circumstances you would find out what we are all about. I would tell you openly about my daughter, what she suffers from but also all that she is and has achieved. Your child would most probably be drawn to her, as for some reason most children are and she would bring out the best out of your child at that moment as she usually does. If we were to sit down and have a coffee I would want to hear all about you and your family, I would play with your child because I enjoy children and I have a very different way of playing with my own. We might become friends, we might go to the park together on those days when your child is suffering from cabin fever and all you want is a bit of fresh air and an adult to talk to for 10 minutes, I would cherish that… but that’s not going to happen.
It’s very simple, I believe that my daughter deserves a truthful smile not pity nor that quick turning of the head in embarrassment, the wish that you hadn’t looked splashed all over your face. And so on the contrary to your quick assumption that you should pity us I am the one that has the right to judge you – I think you are simple, selfish and ignorant and for that I am the one who will never smile or strike a conversation with you. And you will never learn, because that look you gave us stops you from noticing just how beautiful my daughter is, how long is her hair, what she is dressed on, how she expresses herself differently, how she enjoys the wind on her face, how she would make an immense effort to reach for your child’s hand.
I am also better than you because I know why you do it (and you don’t!) – fear! Fear of facing it, fear of facing the fact that not every child is healthy. And despite this horrible sickening look you gave us I would never ever ask you to put yourself in my shoes, they are too hard, too slippery, too hurtful for you, no I wouldn’t want any other parent to have to feel and to live this but I have to say this – we have had hundreds on these looks by now and odds are that one of you at least will have to fit some very uncomfortable shoes at some stage and I hope that you become like me and the young lady down the road, I hope that if it ever comes your way you will grow out of your ignorance and are able to take your child out to the park for there will be at least one parent that will truly smile at you – me!
And for those who will never learn, here is something I can tell you about my daughter: when she was able to smile without any effort she smiled at everyone! It didn’t matter to her if you were ugly, dirty, nice or grumpy. She can’t smile so often now because her brain is being damaged by the second, what is your excuse?