17.05.17

I was showing our daughter some pictures I had taken when out on a walk with my partner the other day. We’d had a couple of hours up on the Downs while she was at the cinema with one of her carers. I knew she would never be able to go where we had been   – this landscape was not designed to be wheelchair friendly – and I wanted to share with her what we had encountered along the way. She seemed quite interested in the sheep I had photographed, some of them looking straight into the camera, albeit from a safe distance.

Later I got to wondering about other places she will never visit – those inaccessible beaches in far flung countries, a friend’s basement flat down very steep steps, late night gigs in crowded standing-only venues. And I thought of things she will never be able to do – nip down to the shops on her bike for a bar of chocolate, chat to her friends on the phone, put on her shoes, tie up her hair.

Yet it’s pointless going over this and it’s something I rarely do if I can help it. Those moments come unexpectedly even now, and are unwelcome. I try to push them away. We have so much to be grateful for haven’t we? “You are only given what you can manage in life,” was a work colleague’s pearl of wisdom to me one morning when I could barely conceal a series of yawns after a bad night.

I tend to believe that people are generally kind and helpful, at least in our world. I prefer to forget if possible those that aren’t. People are also well meaning – but can say the most extraordinary things. One memorable phrase springs to mind. Our girl was stressed and going through a phase of biting her clothes. “Give her a bone,” was the advice of one of the support staff at school. Did she really mean it?

It’s important to focus on the positives isn’t it?

Our daughter went out this afternoon to catch some of the free entertainment on offer in the city. Her carers and her stumbled upon a choir at the entrance to the pier singing swing tunes from days gone by in perfect harmony. Then they went for lunch and more music at a nearby bar. A pianist was playing boogie-woogie and our girl rocked in time to the beat, excitedly jiggling in her seat.

Music is one of her things. How many times have I been told, “They love music, don’t they?” People like to see her so happy. “Ah bless!” they say.  As the music played on in the bar, every now and then she would turn to her carers as if to say, “This is great isn’t it?” She’s good at that. Sharing her delight, expressing her pleasure.

Her carer sent me photos of the outing and when she came home we looked at them together. I wish I’d been there.

“They like water, don’t they?” somebody said to me the other day as I was telling them that our girl is finally going to the swimming pool regularly. “They’re very affectionate, aren’t they?” I was told as she hugged me during a funny part of the film we were watching.  And “I don’t know how you do it,” I was told yet again only recently, “they need so much don’t they?”

She’s in bed now, tired after her busy day, and I’m looking at photos again. Those sheep. Hard to tell them apart  but I bet the farmer can.

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