Christmas this year was a bit of a wash out. In the seven-week run up, our house had become a breeding ground for all kind of viruses.
All of us (bar Pearl) had flu, colds, infections and stomach bugs, with hardly a day off in between.
I couldn’t exercise and found (who knew?) that if you eat more than usual, while doing precisely nothing your clothes inexplicably shrink.
As Pearl grows older it seems likely that she has a degree of ASD in with the mix of physical, cognitive and sensory problems. She is very routine dependent and her understanding is very experienced based.
We are well used to seeing Pearl’s marvellous orthopaedic surgeon, and Pearl is usually very cooperative. We park up, she gets into her wheelchair (it’s a long walk from the car park to outpatients).
The first working day of 2018 was different. Pearl’s kaye walker (a kind of a walking frame on wheels) was just visible in the back of the car.
On the hour-long journey, she insistently pointed at it and shouted.
“Do you want to walk when we get there?”
She deploys her only recognizable word.
“OK. We’ll see if we have time.”
How blithely I make this throw away comment.
We arrived. There was time. Pearl was insistent.
Now usually when I say Pearl goes in the wheelchair, actually we go straight to the shop and buy fruit and a biscuit for distraction purposes.
At some points she was carrying it around her. It was frankly not ideal.
After getting to the front of the hospital with some difficulty she stopped and signed biscuit. We still had at least another 5 minutes before even entering the hospital, let alone booking in and getting to the clinic.
I looked at my watch.
“I have some biscuits with me” (I was a Girl Guide and the motto, “Be Prepared” is engraved on my heart)
“We’ll have them when we get to the waiting room”
This is clearly not the right answer. Screaming, suddenly and out of nowhere, starts. Proper blood curdling, being murdered screaming, emanating from my usually biddable and cheerful child.
Now I’m in trouble.
Is she in pain? It is a long walk,the walker isn’t supporting her.
Is she expecting the biscuit we usually buy?
Or is she just in a bad mood?
I have no idea, I can’t use her PODD communication book because my hands are full of the stuff we might need for any and every eventuality.
I can’t take her back to the car for her chair, it’s too far and we’ll be late. Pearl will not move an inch forward and now she is grabbing random passing strangers.
It had all been going so well.
Suddenly a woman with blue hair, piercings and fabulous boots walks straight towards us.
This is only the second time this has only happened to me in eleven years and thousands of meltdowns, so I’m a little nonplussed.
My immediate, and rather pathetic response.
“I don’t know. I’d love some help, but I don’t know what’s wrong, I don’t know what you could do”
Resourceful. I know.
Then the inner Girl Guide kicks in. I have an idea.
This amazing stranger agrees to stand with a completely hysterical child while I run back to the car, at some speed, for the wheelchair.
I explain all this to Pearl, who is really beyond hearing at this point. I check again with this magical apparition. “Are you sure?”
I leave them with the the emergency biscuits and make a run for it.,
In the distance I can hear her, gently explaining.
“Mum will be back in a minute. Would you like a biscuit? No? You want a hug?”
When I return, she is still cuddling a calmed Pearl and speaking to her with great gentleness.
This extraordinary individual then proceeds to apologize for not knowing how to help Pearl into her chair, which is really not a problem at all, and suggests she stays with her while I take the walker back to the car. She does.
By the time I return, everything has returned to normal.
Biscuits have been consumed, legs are rested. All is well
She deserved an Oscar, a Damehood, at the very least a cup of coffee, but we had an appointment to attend.
Instead I touch her arm look her in the eye, and say.
“You have no idea how grateful I am for your help”
“S’alright, no bother”
She smiles, turns and fades into the crowd.
You saw through all the screaming to exactly the wonderful person my small girl is.
Saw through all my attempts to remain calm and capable to exactly where I was.
For this I salute you, and will never forget you.
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