There are times when the phrase “out of the mouths of babes and sucklings” comes often to mind when working and living with those with PWS. They have a disconcerting way of telling you how they see things, and presenting a wisdom that is way beyond their years. It is so fascinating to hear some of the things they say, and to recognise them as a truth. More often than not, it is not what we would have said ourselves, and quite often it is not what we particularly wish to hear, but they all seem to have this knack of getting under our skin – no matter what language they talk!
The young girl who sat with her dying grandfather, holding his hand, not wishing to be moved from his bedside, seemed to know what to do without saying it. Many of us cannot do this. My own daughter who put her most favourite soft toy into my mother’s coffin, along with a small posy of lavender.
There is the young boy who at four years old, was overhead by his mother saying to the wide-open fridge, “I’m thirsty. What can I have? I can’t have that, and I can’t have this, but I can have iced tea. I will go and ask Mummy”, and, closing the door, he went to find her.
The young 6 year old who, on coming home one day found that locks had been put on the pantry and cupboards. Her older sisters had stormed on by with words like “How can you possibly do this to us – how can we ever invite friends home?”, but she simply said “What bright, shiny locks. Did you put those on, Mum? You are clever!” Of course, her thinking was that her food was now safe and her sisters wouldn’t be eating it all!
The other day I was told of an engagement card sent by the younger sibling with PWS to her older sister and her fiancé. Inside were the words, “I hope you will always be happy. I hope you will respect each other. I hope you never break each others’ hearts.”
Sometimes you just have to slow down to hear what is important in their world, to take time and listen.
