I had an encounter recently, whilst out with Amy and my mum.
It's a story worth sharing and one thing that is interesting about it is the diverse range of responses the story has received from different people I have told it to.
You'll see why when you read on.
We were out at a shopping mill. Yes a mill! Where I live in Stockport there are a lot of old Victorian age mills. They're mainly either flats or in our case a shopping centre selling all sorts of interesting things.
Amy had taken one of her rare power naps and awoke a little disorientated and confused.
Whenever this happens I reassure her by singing her favourite songs to her and eventually the tired confusion changes to delight and cheers. It's one of her quirks that I love the most.
I'm pretty used to people watching, or staring and sometimes even pointing. I don't really mind anymore, they're usually marvelling at how cute she is anyway.
We were in the queue now waiting to pay. I was buying a measuring jug for Amy’s' feeds, I'm sure a lot of tube feed parents will empathise with my hatred of numbers washing off things.
The old man approached me. He said "Why is she like that?"
The phrasing of the question immediately angered me and my response was "sorry... like what?" (I play ignorant when on the defensive)
I sort of sighed to myself but then took a deep breath. After all, this is a chance to educate and raise awareness. "Oh, she has cerebral palsy" I replied, a bit reluctantly.
The way I said it undermined the severity of her condition, I said it nonchalantly as if to imply HE was the "different" one for seeing her as different.
"Do you do everything for her?" He asked.
Puzzled and bewildered I replied "Well yes! She's my daughter, of course I do everything for her!”
We didn't choose this life, but our families are everything... we are parents and we will go above and beyond any call of duty to give our children an amazing life.
I could feel myself getting a bit red and annoyed, please don't see my daughter is a burden. Yes it is exhausting, but she didn't choose this either. I would do anything for her.
I looked into the man’s eyes. (Eye contact isn't always my forte) I noticed something... the man was crying.
"Why on earth is he crying?" I thought.
"Oh! No no, I couldn't possibly... thank you though... that's a kind gesture..."
The man wouldn't take no for an answer.
"It just isn't fair" he kept saying. "It just isn't fair"... He was visibly shaking his head and crying.
"It's okay" I said. "She's a very happy little girl, she has lots of friends and family, she has a great life".
"Yes but what about when she's 9 or 10 and she sees all of the other children around her and she realises she can't do that" He began to cry again.
I didn't really know what to say to that. I assured him how lucky she is and how she wasn't expected to make it through the night when she was born and not to feel sorry for her.
Right now, yes she has a lot of challenges and frustrations, but we are working on it. When I look at her a year ago, she has transformed.
She is becoming a very bright little girl and is very determined to get what she wants out of life.
We parted ways, I paid for the jug with my newly acquired money. His wife hadn't really interacted with us but gave a smile and a polite wave. They were gone.
For a moment my mum and I stood there silent. Not really sure how to process what had just happened.
These are the same negative thoughts that pop up in my head constantly when we visit parks, shops, all kinds of places where able bodied peers congregate. But we push that away.
It isn't productive. Negative thoughts breed negative thoughts. Being upset and dwelling over it all won't make it any easier, that isn't what Amy needs.
You have to acknowledge the thought, and throw it away.
Sometimes it upsets me that a complete stranger can just come into our world and force me to relive a traumatic birth, or that we aren't like everyone else.
At the same time I couldn't help but reflect on this lovely mans' generosity. I have noticed it is often the older population that have trouble processing the prospect of a severely disabled child or person.
Perhaps they didn't see many when they grew up due to the shocking way in which a lot of disabled people were cared for, or maybe because medical technology has advanced so much that they are saving the lives of more children like Amy and therefore there are a lot more of us around.
I have told people of this encounter and had either "WOW. He sounds a little ignorant" or I have had "oh wow, how incredibly kind, what a touching story".
I am mixed. I thought the man was so lovely. He meant no harm. Obviously it pained him to see Amy in his eyes "struggling" and wanted to do something to help.
What do you think?
Do you 'baby wear' your disabled child?