Us

This is us.

The title of tonight’s half term midweek Drake Towers Cinema 7pm special showing (or to give it its full moniker: One Direction: This Is Us), sums up tonight perfectly.

My 15-year-old daughter had her new friend round. During the hugely-anticipated visit, her 13-year old New Best Friend was treated to games, tea, the 1D film, carefully weighed-out popcorn, and a sleepover.

They met three weeks ago, on a Prader-Willi Syndrome Association family weekend. They clicked, in a shy/not-talking too much/chatting when prompted/content/sitting near each other/smiling/stealing glances/oddly sociable/PWS way. Today's half term fun and frolics were tentatively arranged.

First, I had a grand old chinwag with PWS NBF’s mum, while the girls went upstairs to check out the sleeping arrangements, under attack from Annoying Little Brother, who was in Full On Show Off Banzai mode.

Then Mum nipped off home, with us both ridiculously content at just not having to bother with the usual PWS conversation about food, and portions, and banned grub, and acceptable nosh. I knew. She knew I knew. It wasn’t a thing.

Board games were played: our visitor brought Scattergories, where spelling and quick-thinking were required. It was a little challenging for both of them, but they piled in willingly, managing to come up with a celebrity and a herb beginning with O: Olly Murs and Oregano. (Or was it the other way round?) Next, we lightened things up with a game of Ladybirds, which is aimed at 3-7-year-olds, and involves rolling a dice and turning over cards, to find, predictably enough, ladybirds. They shrieked with delight when they got three bugs on a leaf, and giggled and groaned when they got the worst cards: "I've got a none! Oh no, another none!"

I then had two kitchen assistants whilst making the tea, which was a triumph, of course. (If ever you want to be complimented on your cooking, invite someone with PWS round. The pair of them were so appreciative of the Hairy Bikers’ diet enchiladas, that I’ve stuck four Michelin stars on my front door). The successful meal prompted a dreamy discussion about food, which lasted a good half hour.

Finally it was onesies on and 1D on. My daughter has a loud, almost hysterical, nasally, honking laugh, which is one of my favourite sounds in the world. Her NBF has one just like it. They’d been duet honking throughout the evening. Only now it wasn't laughter, it was the glorious honk of 'singing' along to every word of every song - one of the sweetest sounds I’ve heard, despite it bridging the gap between Simon Le Bon and a braying donkey. Which, as you well know, is a very narrow gap.

Meanwhile, my husband had been charged with keeping annoying little brother out of the way. He failed. The three foot anarchist, watching Harry Potter in the other room, had obviously picked up some lessons in mild swearing from Ron Weasley, which he felt he needed to share. He broke ranks near the end, bursting through the door, cocking his head to one side, and yodelling the immortal lyric-mangle: “You light up my life like no bloody hell! You don’t know you’re bloody hell!”.

As you can imagine, mayhem ensued. The worshipping congregation on the sofa (both equally disapproving of rude words) reared up, in indignant unison, and yodelled back: “You light up my life like NOBODY ELSE! You don’t know you’re BEAUTIFUL!” 

I looked at them both, as the world’s worst minder scooped the potty-mouthed usurper from the room and took him to bed for a stern talking to. The girls sat there, giggling, slightly shocked, my daughter and her new buddy, like peas in a pod. 

They’re upstairs, fast asleep, in my daughter’s bedroom, having cleaned their teeth with their new 1D toothbrushes (my girl's presented to her by her NBF as a surprise gift).

As Ron Weasley and Harry Styles might jointly say: bloody hell, they don’t know they’re beautiful.

Video is One Direction: What Makes You Beautiful. Nah, not really, I've just sat through the blinkin' film, I'm not subjecting you to it, too. Here's Nick Cave & The Bad Seeds - There She Goes, My Beautiful World.

Blood

My daughter had to have a blood test yesterday.

As a season ticket holder over many years at several hospitals, she’s had this done a fair few times.

It started with her successful, if prolonged, audition as a baby-sized pin cushion in the hospital’s Special Care Baby Unit. This was just after she was born when doctors needed claret donations from her so they could diagnose what was wrong. The unit was referred to jauntily as ‘Scu-bu’ by the hospital staff (which always set off an appallingly inappropriate voice in my head singing: “Scooby Dooby Scu-bu, where are you?”).

Since then, as the years have rolled on by, whenever she’s had to have blood taken, the same thing has happened: nurses have struggled to find suitable veins in her arms. Luckily, her high pain threshold and consequent indifference to needles means this hasn't been as traumatic as it could have been. But it can be frustrating, and sometimes she starts to get worried when the process takes too long.

Yesterday's nurse, a splendid, super-efficient, chatty woman, who also happened to be clued up about all things Topsy and Tim (to my daughter’s delight), had one go on one arm, and decided not to go the usual route of trying the other one, coming back to that one, and eventually getting it on the fourth or fifth try.

Instead, she felt my daughter’s hands, which of course, were like little blocks of ice. Her feet and hands are always cold, thanks to her poor circulation (a common PWS trait).

“Cor, they’re freezing,” she remarked, and bustled off, returning with a magic trick, in the form of a bowl of warm water. “Stick your hands under the water, sweetie, and we’ll make those veins come out to play.”

Sure enough, a few faint, thin, spidery tributaries began to appear the pale skin on the backs of her hands. In went the needle, out went the blood, and my girl looked suitably awed. So did I, to be honest.

I think there’s a medical term for what happened. It’s called common sense.

Video is Nick Cave & The Bad Seeds - Red Right Hand


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