Day Twenty One

I have discussed my daughter’s fascistic tendencies before. I am convinced if we lived in different times that her love of rules would have seen her indocrinated into the Hitler Youth in a flash. There’s little doubt she would have sold me and her dad down the river, the little Nazi.

We get told off. For doing things we shouldn’t. For not doing things we said we should. For not doing things we said we should when we said we would. You get the picture.

We have a labrador. A patient, well-behaved, 11-year-old labrador. He’s only lived with us for nine months, but he’s part of the family.

My girl is in charge of his food. Boy, oh boy, is she in charge of his food. He receives a cup of dried dog food in the morning, meticulously measured to the line, and the same again in the evening. Once every three days, he is allowed a small treat. 

If my daughter hears the cupboard being opened and the rustle of the snack packet (which she can do from several rooms away), her accusatory voice rings out: “Jazz is NOT allowed a treat today. He WILL NOT get overweight.”

People with Prader-Willi Syndrome have to have their food intake strictly controlled, to prevent them becoming morbidly obese. Their bodies don’t convert fat to muscle efficiently, so have to be on less calories than average, which is especially challenging as they never physically feel full up. 

I think my PWS daughter, whose own mealtime and snack regime is so rigid, is enjoying being in control. She has no real agency over her food, so she’s channelling her inner frustration to take a controlling interest in the dog’s diet.

Today, Jazz, being a labrador, rebelled. At lunchtime, my son had a slice of bread cut up into soldiers sitting next to his soup bowl - a little too close to the edge of the table. The dog spotted his chance, and snaffled a finger of bread.

He got told off, in no uncertain terms.

“It’s just not good enough. You will be banned from the house for a day for this behaviour,” my girl informed him.

Harsh. So very harsh.

(I let him back in. I’m not a monster).

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

Song is The Fall - Who Makes The Nazis?

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. If you don't do it, my daughter might report you to the SS or something. A huge thank you to the anonymous donor who I'm half convinced might have made a mistake with the amount yesterday. Get in touch if this is the case!  

Slang

“Bollocks,” she said. 

“I beg your pardon?” I spluttered, my eyebrows raised in shock, as my daughter is usually quite prudish about swearing.

“We were talking at school and I said how the Grandad in Outnumbered says ‘bollocks’ all the time when he can’t work the telly.”

“Ah, OK. Was this to the teacher?”

“Yes. We were saying slang words for penis.”

“OK. Bollocks doesn’t mean penis, though.”

“Yes it does.”

“No, no it doesn’t. It is part of men’s bits, but it’s the testicles, darling.”

“Oh.”

“Er...why were you talking about this?”

“We were doing group sex and relationships.”

This was not as deeply inappropriate as it sounded, just grammatically confusing, so I decided to roll with it.

“I take it this was to teach you that some words are rude and that you perhaps shouldn’t use them if you want to be polite?”

“Yes.”

I went all in.

“So did you all come up with lots of words?”

“Yes.”

“And who knew the most, the boys or the girls?”

“The boys, I think.”

“Would you like to share any?”

“Pussy, but that one’s for ladies' bits.”

“Yes, yes it is.”

“And someone said the really, really rude one.”

“Oh yes?” By this point, my husband - making a cup and tea and standing in the kitchen with his back to us - made a strangled, spluttering noise, and gripped the worktop as he tried his utmost not to collapse.

“Yes, the worst word, Mummy. Kent.”

Song is The Fall - Slang King

Cancelled

I’ve taken a deep breath.

Everything has changed.

A doctor (well, a ‘Mr’) from the hospital rang at 5pm. Just as my girl was tucking into her tea, and 30 minutes before we were due to head to her school for the pupils’ Christmas Show.

He informed me that the surgeons had been at their usual Monday multi-disciplinary meeting discussing the week’s upcoming operations. 

He said they’d looked at my daughter’s case and decided they want her to have a different type of scan before they carry out any surgery. They want clearer evidence that removal of the titanium rods in her spine is completely necessary. Why they decided to have this discussion now, and only now, just three days before she is due to be admitted for her op, is a mystery. I had no questions, nowhere to go, no room to think. I listened to him and felt numb.

It's been exhausting getting my girl into a reasonably calm and prepared state. Telling her that the op is cancelled, and not being able to say whether she will have to have it or not in the future, was like letting off a bomb in the house.

And yet, and yet, after the floods and floods of tears, the questions, the confusion, the waves of anxiety, the anger, and with her eyes red, her brain whizzing, and the planned upheaval to her routine totally upheaved, she wrestled herself into a state that could be describing as ‘getting a grip’. (Prader-Willi Syndrome Bingo Alert: all this happened whilst she methodically ate a low-fat Thai green curry, Activia yoghurt, and a bowl of grapes).

“The show must go on, sweetheart,” I told her, in a West End musical kind of way. “You have to be grown-up, because you can’t miss your Christmas show, and you can’t be crying.”

She didn’t and she wasn’t.

The show was what the show always is: amazing. One highlight was a lad called Ted, singing fantastically off-key at a high volume to Jona Lewie’s Stop The Cavalry with the added lyric: “Wish I was at home for...I’ve got an itch...mas.”

But it was the sight of my girl, doing the Jingle Bell Rock, just an hour or so after her world had shifted seismically, that hit me, that lifted me, that let me fill my lungs with oxygen again.

Everything has changed.

I’ve taken a deep breath.

Song is The Fall - Jingle Bell Rock