Tuesday, 31 December 2013


A suspiciously small, strangely familiar firefighter
Too much of 2013 has been spent fighting fires.

It started with strength-sapping sleepless nights and bouts of the jitters for my daughter that left her behaving oddly, distant, not being herself. It was only after months of worry, and a series of medical investigations, that we finally got her back. She was diagnosed with a mood disorder, and miraculously restored to her old self through mild medication. There are days when I can almost hear the crackle of the flames and wonder if the fire is going to break out again, but her tablets are currently doing a damn fine job of damping down the danger, without dousing her own spark.

In all honesty, much of the flame-stomping has occured off-blog. I’ve only recently briefly mentioned the terrible, accelerating, diminishment of my mother-in-law, whose memory is being slowly unravelled by dementia. At the beginning of the year she used to read this blog; now she can’t remember how to turn on her computer. The safety net we provide is sagging, alarmingly, a bit like the rest of me, and we’re about to get some outside help (for the safety net, not my saggy bits, oh, let’s move on, shall we?).

The tail end of the year has seen the fires spread, violently, terrifyingly, to my dad. Hospitalised for weeks with a sudden, serious brain illness, he’s finally came home, just before Christmas. He’s there, but not there, and I just want him back for me, for his grandchildren, and for my brave, frightened mum.


Christ, I can't end there. This is turning out to be more depressing than Jools Hollands’ Hootenanny, and no-one deserves that. What I need to do is have a good long look back over my blog, and remind myself of all the good stuff that went on in 2013. A sunny holiday, school shows, parties, new friends, old friends, music, laughs, fun.

And anyway, my husband’s not working tonight. What the hell, if I light up a couple of flaming sambucas and stick some rousingly arousing music on the turntable, we might see the New Year in with a bang. 

Song is Agnes Obel - Fuel To Fire. I'd like to point out this is not rousingly arousing. It's just kind of beautiful and contemplative and also, handily, has 'fire' in the title. I would have put Aretha Franklin's Dr Feelgood here if we're talking sexy music, but I've already posted it on this blog. Probably more than once.

Monday, 30 December 2013


Sometimes you have to get things in perspective.

Yesterday mine was skewed. Worse than Dougal’s misinterpretation of small cows and far away cows in Father Ted.

Let me get my defence in first. I was brewing my patented New Year (Stinker Of A) Cold and my head felt like someone had locked me in an echo chamber with bin-bothering gitdancers Stomp.

Of course, this was a day my daughter was 'on one'. One of her repitition cycles. Not just a cycle, a sodding great perseveration Penny Farthing, its spokes made out initially of teeth:

“I don’t gnash my teeth, do I, Mum?”
“I don’t gnash my teeth, do I?”
“Some people gnash their teeth, but I don’t, do I?”
“I thought I gnashed them, then. Did I gnash them?”
“I don’t gnash my teeth, do I, Mum?”

...and then of Lego:

“I like Lego Friends.”
“I like Lego Friends.”
“I really like Lego Friends.”
“I like Lego City, but I like Lego friends best.”

The Declamatory Declaration Of Lego Liking continued throughout the day, with the slight variation of asking her brother if he liked Lego friends, too; if he also liked Lego friends; and if Lego friends was something that he liked.

I stopped counting at the 57th repeat, and believe me that was much nearer the start of it than the end of it.

She can’t help sometimes getting stuck in a loop of repetition - because of her syndrome. It’s a common trait in people with Prader-Willi. It’s not her fault. But I still lost it. I shouted at the top of my croaky voice at her, the thin strands of my patience snapping and pinging in all directions as I got irrationally angry. A completely pointless rant that left both me and her upset.

Today I felt terrible about it.

So much so that I dug out every Lego set we own (including a fire station, jeep, ambulance, and police truck) to construct and add to the Lego Friends house that had caused such uproar yesterday. With music blaring out, I sat with my daughter, and we built this city on rock and roll, repeats and all.

Video is Starship - We Built This City. I can only apologise.

Wednesday, 25 December 2013


My daughter still believes. She did look a little sceptical that Santa had adjudged her brother to have been “nice” and not “naughty” in his personalised internet video message from the North Pole, but she wasn’t too bothered, as she’d just received the same verdict.

They went off to sleep last night when tiredness overtook their excitement, both squeezing their eyes shut and promising not to peep. My 15-year-old daughter and my five-year-old boy. 

And now, our family has grown. We have been joined by an annoying Gremlin-like creature called a Furby. As far as I can fathom, there’s no off-switch, so when we wanted a bit of peace we had to put it in another room to send it to sleep, as our daughter told us we weren’t allowed to take the batteries out, because “that would be killing her”. The unhinged muppet is called Fiona, apparently. Interestingly, as attached as my daughter is to her new evil incubus, her favourite present today seems to have been a jar of giant gherkins.

I’m slightly bruised from having to lie on the floor while my son tested the ‘off-road’ capabilities of his new remote control car by driving it over the top of me. I’ve been having some funny conversations with him using his new walkie-talkies: “Over it. Get over it, Mummy,” was his idea of how you signal to the other person you’ve finished talking. But his favourite present is a tiny Lego Batman figure. He’s lost the mini Dark Knight’s mask three times today (each loss marked by escalating degrees of panic starting off at Red Alert and finishing with Cuban Missile Crisis level).

They say there’s a lot of repeats at Christmas. They weren’t kidding. I said they weren’t kidding. And I'm not just talking about the Brussels sprouts fumes emanating from my husband's rear portions. Our daughter, whose peseveration* levels were sky high (*where she asks the same questions or says the same sentence repeatedly) was at one end of the table; next to her was my dad, now home after six weeks in hospital, who is currently stuck in a time loop world where his brain thinks everything is happening over and over again; and next to him was my mum-in-law, whose dementia causes conversations to roll right round baby right round, like a record baby, right round...

But it worked. It worked out. We snapped our crackers, gave eachother gifts, and laughed at my Yorkshire Puddings, which my daughter defended on my behalf. Repeatedly. 

So, I’ve got a truckload of turkey left, and we’re going have the same personnel for a Boxing Day re-run. We’re going to have to go down the park tomorrow to get some fresh air and burn off some calories. We’ll be taking the walkie-talkies, and the Furby, but probably not the gherkins.

It’s been a long, kind of wonderful, kind of heartbreaking day. Over and out.

Video is LCD Soundsystem - On Repeat

Monday, 23 December 2013


She’s a lot scruffier in the picture on the left. Her collar was crinkled. The plastic, moulded body brace that encased her torso for so many years is hidden, but I recognise the awkward way it made her clothes bunch up, giving her that American-footballer-bulked-up-shoulder-pad look. You might be forgiven for thinking the haircut was homemade (it wasn’t, but upon reflection, I might be going back to see if the hairdresser will give refunds ten years later). I like her expression. It’s a bit timid, but she’s happy. I remember her being very excited when she came home with the school photo order form. My daughter’s first school photo. Copious copies were ordered. 

She’s impossibly grown-up in the new one. Although she is wearing a borrowed tie, because, of course, on school photograph day, she lost hers. There’s some metalwork you can see (the braces on her teeth), and some you can’t (the titanium rods that have straightened her scoliosis-bent spine). She looks still, and poised. It’s a bit misleading, because she’s still the same head-bobbing, funny-walking, flappy-handed, lolloper.

Two things strike me.  Firstly: bloody hell, that’s a good gig isn’t it, getting the contract to do the school pics? Are there School Photo territory battles, like the Glasgow Ice Cream Wars? If a new firm comes to town, are they sent a threatening photo through the post, with the letters made up of tiny, cut up passport-sized specimen pics of smiling kids in their best jumpers, spelling out: “PITCH FOR MY PLAYGROUND PATCH AGAIN, PAL, AND I’LL SHOW YOU A NEW PLACE TO FIT YOUR FLASHGUN"?

The second thing? My girl has come a long way in a decade. We all have. 

Song is World Party - Photograph

Tuesday, 17 December 2013


Carrying a fake cake and singing about mountains of grub; these two things would not necessarily be high on my list of Things To Give Prader-Willi Syndrome children To Do At Their School Christmas Show.

And yet, there she was, my daughter, the one with the obsession with eating and an inability to feel full up. Ambling into the school hall to the strains of the Oliver! soundtrack, carrying a giant, delicious-looking chocolate Yule log. It’s safe to say alarm bells were ringing in my head. Loud ones, marked IRONY.

But it didn’t seem to upset her. She sang, with her own unique mix of shyness and gusto (shusto? gusness?), enjoying the song, which is like every PWS kid’s dream request list:

Food, glorious food
We’re anxious to try it
Three banquets a day
Our favourite diet

Twenty minutes later, she was hula-ing in a grass skirt. (It was a Christmas holiday, apparently, if you’re wondering where the tropical theme surfaced in the special school’s festive performance). The “What the Aloha was that?” section was in between Mary & Joseph on a wheeled donkey, and some dancing Christmas trees.

I love her school shows. They’re ramshackle, random, rip-roaring, rousing and I’m running out of ‘r’s. I can’t properly describe the feeling I get when I watch; it’s wrapped around my heart, but trying to pin it to the page unravels it, and I want to stay bound.

Video is Food, Glorious Food, from Oliver! (The Musical)

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Wednesday, 11 December 2013


It was an almighty harumph, from a champion harumpher. My husband stomped past me, muttering. I was only able to pick out a few words in between the mumbled oaths. In a brief moment of articulation, he built up from a Muttley style “Shnikinrickin fashinrockn rassafrassa rickinrackets” to a climactic Jim Royle-esque “Easy? My arse!”.

The source of his impatience was a bag of tiny elastic bands and a plastic tool. Earlier, he’d taken my daughter to the orthodontist, who'd shown him, effortlessly, how the bands needed to be attached to hooks on her top and bottom braces to pull her gnashers together while she slept. His stomp was due to the lack of success on his inaugural attempt.

“I can’t remember you being this rubbish at Operation...” I commented, as I walked past him, with the irritating air of one who is convinced they will be able to swan in, adeptly perform the task the other failed at, and then be all smug about it. I'd picked this dig at his board game skills over the obvious, but ruder: "Should have thought you'd be used to manipulating a tiny, pink, tool..."

Once upstairs, I picked up the hook implement, and approached my daughter, who was lying in her bed. 

“Don’t worry, sweetheart, Mum’ll sort you out,” I reassured my slightly anxious-looking girl. With a few deft moves, one side was hooked, lined and sinkered.

We smiled at eachother. “I don’t think Daddy was very good at this, was he?” I whispered.“Let’s get this other side done, and we can tell him he was rubb...”  I didn’t reach the ‘ish’. The second band was proving a bit trickier, and suddenly it slipped, and catapulted up from the bottom of her mouth to her top gum, with an almighty TWAAAAAANGGGGG!. 

“Are you all right?” I asked, thinking that the elastic missile must have hurt. My girl couldn’t answer. She was shaking. Concerned, I grabbed her face in my hands and looked at her, and it was then that I realised she was giggling, uncontrollably.

Sometimes a mishap or a setback can reverberate, and set my daughter's nerves jangling. Less often, unpredictably, amazingly, she might even find it funny; this was one of those occasions. She set me off, too.  We were reduced to a heap of jelly, both giggling and making intermittent "Dddd-DOING!" noises, our laughs pinging backward and forward like the wayward band.

Video is Sultans Of Ping FC - Where's Me Jumper?

Saturday, 7 December 2013


Today we gave everyone sparkly bums.

My daughter was wearing her glittery dress, bought as part of a Halloween outfit but cunningly doubling as a disco party frock this afternoon. She left a trail of silver specks wherever she sat.

The party that merited the spangly outfit was a Prader-Willi Syndrome Christmas Party: a collection of chromosome blip-sharing youngsters who gathered together at a church hall in Enfield, along with parents, friends, and siblings. Some of the kids were dressed up: there were elves, fairies, superheroes, a snowman, and even a matching Dad and son crocodile onesie combo.

My girl launched into her usual fact-finding mission. “Who’s got Prader-Willi?” she asked the girls sitting at the craft table making paper chains with her. Introductions were made, names, ages, and PW yesses were noted. Shy grins turned into big, beaming smiles.

One 18-year-old girl swapped email addresses with me so I could send her a photo. We’d never met before, but she was incredibly familiar to me.  I kept looking at her: her glasses slipping down to the end of her nose; her dipped head and laugh, her hands being constantly wrung with excitement; her slightly off-kilter questions; her body shape; her voice; her language; her wonky smile, her mannerisms; her happiness. I realised, with a jolt, that she was my daughter’s  doppelganger. The likenesses were uncanny.

Santa was all set to make an appearance. The suspense was too much for my five-year-old boy, who went into meltdown over how long it was taking the Man In Red And White to get there, and would simply not accept 'traffic jams' as an excuse for the delay. “He can just fly over the cars,” he squealed, his perfectly reasonable logic delivered perfectly unreasonably. “That’s my son,” I explained to the woman I was chatting to, as the red-faced, sobbing boy in a Superman costume was dragged off by his dad into a corner to be Told Off. “He’s not got Prader-Willi, he’s just got the hump.”

Father Christmas finally appeared. My heart lurched. The party was being held in the hall of a Mormon church, and earlier on my girl and I had been talking to an American chap, who turned out to be one of the Salt Lake City Squad. (By the way, Mormons, no caffeine? No tea or coffee allowed? Who knew?). Anyhoo, we’d all discussed his accent and how people from different countries spoke differently. My girl had paid very close attention. So when Santa started handing out presents and wishing the boys and girls Merry Christmas in a familiar American accent, I whispered to my husband: “She’s going to realise who it is.” My girl, who had been commandeered by her new 18-year-old twin into helping pass Father Christmas the gifts, had had plenty of time to put two and two together. She marched over to me, clutching her own present, her face flushed with a revelatory blood rush.

“You know how Santa can’t be everywhere, and sometimes he has helpers being Santa instead of him, Mum?” 
She grinned.
“Well, I think this is actually the real one.”

Song is The Posies - The Glitter Prize

Many thanks to all the parents and volunteers who made today such a special event.

Sunday, 1 December 2013


My daughter doesn’t always understand how she’s supposed to feel. 

It’s the part of Prader-Willi Syndrome that dips its toe in the autistic spectrum. No, not just dips its toe - has a right good paddle about.  Her empathy is under-amped. Not because she’s emotionless: she’s brimming with it, enough to bubble and spill over at unexpected moments. But these moments tend to be random: when a classmate insists they’re in Year 9 when she’s sure they’re in Year 10; when a Hello Kitty bag strap is the wrong shade of pink; when a wave of upset rises from the deepest fathoms for an unfathomable reason.

My uncle died this week. The phone call wasn’t out of the blue, but then of course at the same time it was. A Scot from Polish stock, with a consonant-packed surname, a sometimes impenetrable accent, and a dry sense of humour, he loved his family fiercely and was fiercely loved back. 

“Will they be sad?” my daughter quizzed me. She was inquiring after my aunt and my cousins and the tribe of grandchildren who adored him. John, Dad, Grandad, Uncle John. She was scanning my face, searching, watching, wanting to know, how it felt, what I would do, how was I reacting, why there were tears in my eyes, what it meant.

Yes, sweetheart, they will be very sad. When someone you love dies then you do feel sad because you miss them very much. It’s very upsetting.”

“I’m not upset,” she said. She looked a little worried, and it was my turn to scan her face. I think she was aware that it wasn’t the right thing to say. I suspect she thinks it’s ‘grown up’ not to cry when other people do. 

We've had two power cuts this week, and it struck me that when it comes to our emotions we’re all wired differently, but there are certain trip switches that short us all out. My girl, on the other hand, is working from a different fusebox. 

Song is Elvis Costello And The Roots - Tripwire