What’s on your mind?

For a while now there’s been one question that I’ve wanted to know the answer to more than anything. More even than the ‘What does the future hold?’ question, which I have sort of accepted that I will never know. The question is ‘What goes on in Pudding’s head?’

I live with him and love him. I know loads about him. I know that he loves watching Octonauts or Sarah and Duck. That he has a mean left kick in football. I know (mostly) what foods he will or won’t eat. I know (usually) when he’s about to hit me or throw something.

But I never really know what he is thinking. Because he can’t tell me.

When chuckles suddenly erupt from his round belly for no reason that I can fathom, what has started them? Has he seen something that tickles his sense of humour, or is he remembering something funny? Or, is it another new symptom to worry about? (Gelastic seizures, which cause a sudden bout of laughing or crying, are another thing I’d never heard about before Pudding’s diagnosis with MPS. Unlikely at this stage, but that doesn’t stop me running the possibilities through my head.)

When he is chatting in his bed alone at night in the pitch black, who is he talking to and what is he saying? I’d love to be able to join in sometimes as it sounds like a lot of fun.

When he asks for ‘Beebies’ for the twentieth time in a row with that beautiful hopeful smile, does he expect the answer to be different to the previous 19 times?

He does sometimes show problem-solving skills such as coming to find me when he needed a milk spillage cleared up, or getting a stool when he wants to reach something. So I know that he can identify a problem and find a solution.

I’ve often wondered how much he recognises people that we don’t meet very often and remembers things we’ve done with them. He’s so happy to see anyone and gives smiles and cuddles out freely regardless of whether he knows them! But I had an insight when we met his cousin’s cousins recently after a gap of only three weeks. The first time we saw them was in a restaurant and we whiled away the wait for food by playing one of his favourite games. It’s very simple – we point at each other and say ‘You!’ then someone replies ‘Me? No, you!’ (Really, don’t ask. Don’t all families do weird stuff like this?) Well, the second time we met up, as soon as the little girl peeped around the corner, Pudding pointed at her and shouted ‘You!’ Not his usual greeting, so I’m sure he remembered the time before.

Unless his language makes a huge leap forward, I probably never will have much idea of what he’s thinking about aside from the basics. I wonder what he would have been capable of, had his brain not been gradually clogged up with waste sugars for the first four years of his life. One thing I can be sure of though – there’s more that goes on in that curly head than I will ever really be aware of.

Comments

  1. I would like to invite you to guest post over on Carers Club. If this is of interest do please get in touch

Leave a Reply

Your email address will not be published. Required fields are marked *