Sunday, 11 June 2017

MRI

We kept a lid on it.

She was bubbling a bit, but nothing we couldn’t handle. 

My daughter was waiting to go in for an MRI scan at the Royal Orthopaedic Hospital at Stanmore.

The scan was so doctors could have a closer look at her back, as her posture has unexpectedly developed a little more wonk and stoop over the last few months.

I read my girl the explanatory leaflet, telling her exactly what the procedure would be. Despite having had a couple of MRIs before, my Prader-Willi Syndrome teenager was persevering with her perseveration (repeatedly asking the same anxious questions).

“If I start to dream, will I start to grind my teeth? Mum, we haven’t got my mouthguard!”

“Will it be really loud?”

I assured her that if she did have a little nap, she wouldn’t be in a deep enough sleep to dream, or grind. I also reminded her that she’d be given headphones, which would make the beeps and clonks quieter. 

After a few verbal laps of this, my daughter settled back in her chair, edgy, but reasonably content. And then a ‘helpful’ woman patient in a hospital gown - who I shall henceforth refer to as ‘Mrs Shut The F*ck Up’ - appeared, having just finished her own MRI.

Seeing my girl and obviously trying to be nice, Mrs STFU said the following. (Please bear in mind my girls two obsessive lines of questioning, as detailed above...)

“Don’t worry about it - after a minute or two you just drift off and start dreaming.”

AAAArrrrrrgghhhhh!  I leapt in with a quick qualification that the lady didn’t mean she’d been asleep and that she meant day-dreaming, shooting the woman warning looks utilising some meaningful Roger Moore eyebrow movements (RIP the great man. And his eyebrows).

The woman's supplementary f*ckery?

“You’ll be fine. Although there’s a bit of banging. It’s a bit like a giant hitting something with his hammer.”

A BIT LIKE A GIANT HITTING SOMETHING WITH HIS HAMMER! In what world would you think a sentence like this would reassure an anxious child? I pity any grandchild of hers who has Nanna STFU reading them a calming bedtime story!

Thankfully, the male nurse leapt in, noticing my eyebrows go from ‘Roger Moore’ setting to full ‘Bill Bixby turning into Lou Ferrigno’ territory (for anyone under 40, this is an Incredible Hulk reference, OK? Telly hulk, not sexy Mark Ruffalo Avengers hulk...)

Meltdown Prevention Nurse - picking up on the sudden escalation in anxiety and gamma ray levels in the air - ushered Mrs STFU off to the changing room, after telling my girl: “Oh it won’t be too loud, I promise. I’ve got nice big headphones, and you can choose some music to listen to if you like.”

She steadied. The thought of Taylor Swift did the trick. And, a few moments later, headphones firmly on, my girl lay underneath the clanking, doughnut-shaped MRI machine for forty minutes, still, compliant, and chilled out.

Meanwhile, I fell asleep in my chair in the corner. Dreaming of Mrs STFU and very probably grinding my teeth.

Video is opening sequence from the 1978 TV show The Incredible Hulk, Not dated in anyway, no siree.

Saturday, 10 June 2017

Bananarama

Seventeen thousand steps is a decent distance - around eight miles, depending on your stride.

If you’re a bit of an exercise nut like I’ve somehow turned into over the past 18 months or so, it’s a pretty common figure on my Fitbit.

But if you’re a teenager with Prader-Willi Syndrome, with weak muscle tone, and an aversion to exertion, it’s a marathon.

And yet that’s how far my PWS daughter walked today, on a trip to London Zoo.

It was a PWSA UK (Prader-Willi Syndrome Association UK) Family Day. One of those special days where us oddball, motley, marvellous PWS people gather together.

We took over the education centre at the zoo, where staff showed us cool stuff like a tortoise shell and a crocodile skin (the crocodile wasn’t in it, in case you’re wondering about the Health & Safety implications).

The face-painter was kept busy creating Spidermen and tigers, and my girl and her PWSBFF (Prader-Willi Syndrome Best Friend Forever) got their arms daubed with pretty flowers, beaming like drunken hen night revellers in a tattoo parlour.

My daughter did her usual quizzing of parents of PWS babies/tots with questions about their age and what they eat. But there wasn’t time to speak to everyone - the teen queens had a zoo to explore, and explore it they did.

The duo became a trio with the addition of NPWSF (New Prader-Willi-Syndrome Friend), a delightful fellow teen who joined the Tattoo Club, grinning just as widely, and accompanied us on our safari trek with her dad. I christened the girls Bananarama (but only in my head, because there’s no need to talk about food unnecessarily in front of teenagers with genetically-led insatiable appetites, is there now?). 

We peered at penguins, goggled at giraffes, beheld bats, and I would say leered at lions, but I’ve run out of alliterative synoyms for ‘looked at’, and that one’s just silly.

My boy, the one without PWS, and the one with perfectly springy, tough muscles, was the one to run out of steam because “his feet hurt”. We called it a day, and caught the train back home, accompanied by a pigeon who hopped on at Kings Cross, and hopped off with us 45 miles later. He could only have exuded more of an air of ‘experienced commuter’ if he’d been clutching an ovepriced cappuccino whilst reading a copy of the Evening Standard.


Thanks to the PWSA UK for arranging, and for the lovely staff and volunteers for their friendly welcome and hard graft. Thanks to the zoo staff, too. 

And finally, most importantly, most memorably, thanks to our own version of Bananarama for their smiles - the only things today that blazed brighter than the sun.


Video is Bananarama (Jesus, that's a word you get lost in when you're typing) - Love In The First Degree. This video, though. I repeat, flabbergasted, this video, though.

Thursday, 8 June 2017

Vote

Today, I took my 18-year-old daughter down to the polling station to cast her first ever vote. I’m happy, proud, and a little bit teary. 

Yes, the smile will be wiped off my mug tomorrow, when we know the result of the UK General Election (or as I like to call it, another demonstration of the average British voter’s inexplicable desire to shoot themselves in the foot, repeatedly).

Like the morning after the Brexit vote, I’ll be feeling so utterly out of step with an insane world that I will most likely be out running at some ridiculous hour (I might as well do a physical version of my emotional huffing and puffing).

But today I’m happy.

I did the responsible thing. Taking into account my girl’s learning difficulties, I tried to give her a simplified guide to each party's policies. And I did try to disguise my own preferences, honestly, m’lud.

She’s watched the Newsround special. She’s talked about it in school (and told me that one of her teaching staff will definitely be voting for the ‘craps’. After some discussion, I realised she meant ‘crats’ as a diminutive of the Liberal Democrats, which came as something of a relief).

She chose ‘the red ones’. “Because of more money for the hospitals, and Grandad is in hospital, isn’t he?”

I explained how she would have to tell the polling station staff her name and address, take the ballot paper into the booth, put one cross next to the name of the person from the party she had chosen, fold it up, and post it in the special box. (I broke this down into each step, obviously, as otherwise she would have been lost at “name”).

And we did it. She tentatively walked to the voting booth, and took an age to read everything on the paper and find where she needed to mark. Then she walked, uncertainly, over to the ballot box, where the chap showed her where to post her slip. I watched all of this, standing a few yards back by the door, having already cast my vote. In the meantime, I’d had a little chat to my eight-year-old son about the process, and explained how important it was to vote, and how some people had died in order to give everyone the right to choose the people who ran things.

He didn’t look especially impressed.

“Why don’t they use computers instead of bits of paper?” he asked.

“Well, when you have computers, you might get hackers,” I said.

“Yeah, but you could get burglars stealing the box,” he replied, looking thoughtfully at the windows and doors, possibly checking for ease of unauthorised entry.

“Blimey, are you planning to hijack the election yourself? You’ll get locked up, you know.”

The polling station staff had overheard us, and were smiling.

As I ushered him and his sister out of the polling station, my boy was still pontificating.

“No. I’m not going to steal the box, Mum. But I think I know who will win, anyway. They’re called the Conservatories. They’re a bit like that baddie, Trump, aren’t they? He’s horrible.” Then he winked, put on an American drawl, and added: “And they WILL BUILD A WALL.”

Song is The Move - Vote For Me