Living with Cerebral Palsy 🍋🍋

Thursday, 15 August 2019



  1. the occurrence and development of events by chance in a happy or beneficial way."a fortunate stroke of serendipity"
2 synonyms:
3 chance, happy chance, accident, happy accident, fluke; More

Years ago I remember someone telling me that the world of children with profound disabilities was a small one. I didn’t really understand at the time, but as the years have rolled past, more and more chance encounters with families like ours have managed to convince me this is true. Not least last year in Ibiza, when I bumped into a Mum with a beautiful little girl like Elin, who had been following this blog for years and who I’d previously exchanged many messages with!!! To meet them in ‘real life’ (in Ibiza!!!) was amazing. Sometimes it feels like an invisible serendipitous force is linking families like ours somehow, or at least groups of us, together. Like a gang. Or a family.
This week we have been on holiday- back to Anglesey (our favourite place blog readers will know) It has been a gorgeous week. Once again, Elin brought the sunshine with her. Even Wednesday, which was supposed to be horrific, was just a bit drizzly and windy. Elin sat in her chair amazingly, meaning we 
could really explore the island. Neither of us ever remember Elin having such a prolonged calm period-we were out for hours every day- including fairly good sleeping! It’s been a perfect week. 

Which brings me to serendipity.
On Tuesday we met a family on the beach, with a little boy, Sam, from Manchester, who was like Elin. We spotted one another immediately, as you tend to do when you recognise the tell tale shape of the special chair, the oxygen tank, the medicine bag. We had a lovely chat with Sam’s family, frantically exchanging garbled information as you tend to do when you discover a mirrored image of your own family (a rareity as you can imagine)Two days later, we met them again on an entirely different beach (one which we almost hadn’t stopped at) We had another chat. This was when we discovered Elin and Sam had been at Alder Hey together in 2008. Not only that but we had both befriended the same third family. The third family had an amazing little boy, Oscar, Elin’s first friend, whose family lived in a village in Wrexham too. Devastatingly,  Oscar went on to pass away the following year. We had all attended his funeral and all kept in touch with Oscars family to this day. 
I tried to wrap my head around the fact that this set of parents on the beach in Anglesey, had been equally enchanted by Oscar and his family as we had been, and had attended his funeral as we had, the first of our children’s friends we had ever had to say goodbye 
to. That we had this shared, achingly profound and crushing 
experience was crazy, and weird, and strangely comforting and sad all at once. 
Whilst we chewed this over some more and Sam’s family left the beach, our attention was drawn by a little boy digging a hole with his Grandma and Grandad. When it came time for them to leave, we must have caught the Grandma’s eye because she smiled at Elin and told us she used to be involved with a special riding centre for the disabled near Shrewsbury. I told her we used to go there, before we switched to a more local one, that Elin used to ride the mechanical horse in the grounds of a farmhouse when she was tiny. “Yes, that’s my house” she said. “You used to come to my house, then”. She thought she remembered us. I mean, WHAT?!? The woman who we had parked next to on a random beach in Anglesey owned the house and grounds where Elin used to go riding!! How do these head spinning coincidences occur? The universe is indeed a strange and serendipitous place. I have long believed Elin and her friends are extra ordinary, that they are linked, to each other, to the planets, to the earth, to the atmosphere and the sea and the stars in a way no ordinary people are. They transcend normality. They are, in the truest sense of the word, special. They are joined together with a shared experience none of us will ever really know about fully. They are shooting stars in the universe of all our lives. And how lucky we are to be within their orbits, watching them shine so brightly and so beautifully. 
“There are more things in heaven and earth Horacio, than are dreamt of in your philosophy” 
Hamlet Act 1 Sc 5. 
The world, of children with profound disabilities, is a small one. 
Ruth xx
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