Thursday 14 May 2020

Day Nineteen

Being in a household with a Prader-Willi person means you do learn to filter stuff out.

I can wilfully, skilfully ignore a level of background blatherings that would cause a random visitor (remember them?) to remark: “How can you hear yourself think?

When my husband and I do our unspoken tag team thing - otherwise known as when I sidle out of the room just after my daughter corners him in a particularly repetitive conversation cycle - I still vaguely register the conversation, but unconsciously filter it out to a background hum.

This happened yesterday, but my filter gradually failed as my daughter’s voice grew more panicky, and my husband’s started to sound as if his teeth were being well and truly gritted. I flipped my ear switch from ‘ignore’ to ‘earwig’, as I detected potential entertainment.

Her dad seemed to be explaining to her what ‘pixellating’ meant. He sounded like he was coming to the limit of the number of times he was prepared to answer the same question. I surmised this was what the last 15 minutes of ‘background hum’ had been about, but I couldn’t work out the context.

“I’m not going to tell you again, because I’ve already explained it, A LOT,” he said firmly, his exasperation clearly audible. “If you want me to watch ‘The A Word’ with you, you need to stop asking me that and PLAY the programme!”

Cue another anxious barrage of questions from her about ‘pixellating’. I started heading towards the door, motivated by a combination of nosiness, support, and the desire to take the piss. And just as I got there, the mystery of where the question had come from was solved.

“But it says in the listings that Joe is pixellated on his teacher!” said Josie, the confusion clear in her voice, possibly because she was trying to understand why Joe’s face would need to be disguised.

“All this time you didn’t think to tell me it’s in the listings?” came my husband’s accusatory voice, followed first by a pause as he located the remote and checked the programme synopsis, and then by a very large sigh.  “No,” he said, in the voice of a soldier, tired of war, “it doesn’t say that. It says Joe is fixated on his teacher. Fixated!”

"Oh!" came her unabashed reply. "Well, I know what that is."

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972




Song is Céu - Amor Pixelado - if you watch the video, you'll see she starts off well with the social distancing, but lets herself down by the end. Where's your 'common sense', woman?

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. I know I keep banging on about it. You could say I'm pixellated on it.

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