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I have learned a lesson recently. A few things have happened that have led me to think harder about the world around me.
Picture the scene - The opthalmology waiting room at your local hospital.
It's a standard waiting room really except there are no magazines, the coffee shop always seems to be closed, the water machine always empty, and difficult to negotiate with a wheelchair when as busy as it was this day.
We got there on time but as usual the appointment was running late, even at 09:30am.
I had exhausted every toy in the bag - Amy hasn't a lot of patience for waiting rooms (understandably) and I was trying my best to not yet play the ipad card in desperate hope of keeping the peace screen free.
The other children around us were seemingly well behaving and I felt a twang of grief in my heart as I thought about how difficult it is getting out of the house and then attending an appointment.
A member of staff popped out again and said "I'm really sorry Ms Madeupname's clinic is running now an hour and a half behind". I hunched over further and sunk further back into my seat.
I started to feel a bit bitter - I thought to myself "I bet none of these people here have about 50 syringes to wash, an entire bedroom to practically fumigate like I do daily (don't ask!), a massive prescription to collect, phone calls to OTs/GPs, emails to dieticians and so on.
I sat thinking what a raw deal this was and how I didn't even want Amy's MRI results - I am confident that in spite of an astigmatism and strabismus - her vision is pretty fantastic; especially when you consider that she showed no signs of vision at all for the first few months of her life.
The lady next to me turned to me and said "I love your daughter's shoes". Thanks I said, they're pretty awesome aren't they.
My mum and dad got them for her - they are 5 sizes bigger than her feet to accommodate her splints" I laughed.
Amy actually has very small feet for her age and now she has giant feet thanks to the AFOs.
Unexpectedly the lady responded "we have that problem too".. I looked over and yes... her daughter also had AFOs! They were well disgused under some amazing my little pony leggings.
To me I had seen a little girl doing well at communicating her wants and needs and walking around with relative ease.
Conversation turned to Amy's tube - A popular talking point amongst strangers as it is so blatantly displayed on the back of her wheelchair with tubes protruding from under her chair harness.
"My little girl struggles with fluids" she said. "Really? How do you keep her hydrated" I asked. "Through her gastrostomy" she responded.
I must have looked visibly shocked as she laughed and said "Haha, it is discreet isn't it when not connected to anything?!"
As it happens, her daughter actually has a rare chromosome disorder. She has a tube, AFOs, a hearing aid, and had recently endured surgery on her eyes. What a little superstar.
Don't get me wrong, all kids are awesome... Obviously I just have a special place in my heart for any child who even remotely reminds me of Amy.
I am one of these people who will share every photo about invisible disabilities and never judging a book by the cover and so on...
You will never fully know what is going on in people's lives and should always remain humble and be kind.
Similarly, I recently found out one of the workers at a business near our house has a wife who suffered a brain injury a few years ago... I only happened to find out when we were discussing our new wheelchair van and I was so shocked that someone so young had gone through so much.
I had always seen him coming and going from work and secretly envying his "normal" life.
I sometimes think full time workers have a lot of stress, but at least they clock out and go home and can switch off... but no, that isn't always the case and I should learn to be more open minded.
Do they just see an almost 30 year old girl with daft piercings wearing all black and shopping on a weekday and think "benefits scrounger" or "lazy"?
Because I am a dedicated mum, a hard worker, a full time carer, full time worrier.
I can understand why they might think that up on viewing me and knowing nothing about me.. it sort of reminds me of when people assume homeless people are "drug addicts" and it is "their fault" they are homeless. Not true folks. I defy you not to turn to drugs or alcohol to endure nights on the street.
Obviously I can't vouch for every situation but what I am trying to convey is that you shouldn't judge unless you know the full story - and even then... show some compassion and learn that your first impression is not always a true one.
I feel so humbled for meeting that mum. Her daughter really loved Amy and even made us come and sit back with her after our appointment. She really was a little treasure.
I asked her mum if she had facebook. She didn't (That or she thought yes I do but you're not adding me!!). So chances are I may never see her again.
But if I do, I'd like to tell her how she and her child altered my mood dramatically that day and made me think about first impressions and assumptions.
I came away with positive MRI results for Amy, and a renewed energy and appreciation for life.
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