Wednesday, 30 April 2014


The walls were covered with a new set of pictures. As we sat there, waiting to be called in for our appointment, I stared at them and wondered about the children who’d drawn them. What was their story? What led them to need help here? What is the collective noun for Mr Men?

It was a review meeting with my daughter’s neuro-psychiatrist. The professionally professorial professor who, in August last year, diagnosed my daughter with a mood disorder.* 
(*My computer has just tried to autocorrect this to a ‘moog’ disorder, which is a satisfyingly funky substitute).

At the time our family was bewitched, bothered and bewildered by our daughter’s cyclical batches of agitated evenings and sleepless nights, followed by angry outbursts at school, rounded off with a zonked out zombie ending. Rinse and repeat every three weeks or so. 

It took a while to get to the right person, and it took a long, hot, afternoon building the most exhaustive and exhausting medical case history of my girl’s life, but the Prof got a handle on the situation. A big, red, emergency handle, labelled STOP. He told us that our girl was exhibiting behaviour on the spectrum of bipolar disorder (something which is more prevalent in adolescents and young adults with Prader-Willi Syndrome than in the general population). He thought a mood stabilising drug would potentially help. After he consulted with some big cheeses in the PWS research world, he became more convinced this would be the correct course of action to take. So did we. 

Here we are, nine months later. Pills are still being popped. The highs have been capped, and the lows have been lessened. Our daughter is still our daughter, not the unrecognisable, vexing, perplexing, intermittent stranger in our midst. The drugs are stabilisers, not sedatives, so there are still the usual wobbles and waves that come with childhood, teenagerdom and Prader-Williness. But they're gusts, not whirlwinds. She’s her. She’s ours. She’s herself.

The meeting with the Professor went well. He spoke kindly, carefully, and respectfully to her. My girl was shy, fiddled with her hands and was hesitant with her replies, but told him she was happy. She meant it.

Song is Ella Fitzgerald - Bewitched, Bothered And Bewildered

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Saturday, 19 April 2014


She appeared in my bedroom doorway.
“Come on in bed for a cuddle,” I said.
She padded over, kneeling on my shin as she decided to climb over me, rather than go round and get in on the free side.
“Hggh hhhgghgggh hgh hghhh hghhhghhggh,” she said, snuggling under the covers with me.
“Take out your retainers, poppet.”
She took out the drool-filled gum-shield-like tooth moulds and dropped them on my face.
“Thanks for that.”
“What? Oh, sorry Mummy.”
“You OK?”
“I’m OK. I clattered my teeth together, Mum.”
“Yes, that’s normal, sweetheart.”
“It’s just where teeth are, isn’t it? They clatter together. But I don’t grind them.”
“No, you don’t grind them.”
“Is my hair falling out?”
“No, don’t be silly, of course it’s not. You’ve got lovely, thick hair, and it’s growing longer all the time!”
“Why are there hairs on my hairbrush then?”
“Well, that’s where your hairs...well...they fall out, but you’ve got millions of hairs and they’re constantly regrowing so your hair isn’t actually falling out like going bald falling out. You’ve got nothing to worry about there.”
“Hmm, what?”
“It is falling out like going bald falling out, you know. And I know what it’s called.”
“You do?”
“Yep. Alapeaches. I’ve got alapeaches.”

Song is The Presidents Of The United States Of America - Peaches

Thursday, 17 April 2014


Home, and happy.

We’ve just spent a couple of days up north at my brother-in-law’s. 

It started off badly, with a fraught three hour car journey, during which my five year old boy was a three foot ten inch whinge-bucket (sample below):

“Of course we are. It takes three hours, not a hundred million hours.”
“If you carry on shouting and moaning, we’ll stop, until you’re quiet. What do you think?

“Well do you think it’s a good idea to be so loud and give your mum and dad a headache and shout around while we’re driving?
“Really? What does Teddy think?”
A pause. A final, pointed, quietly-triumphant, grumpy mutter:
“Teddy thinks the same as me.”

Thankfully, things improved enormously upon arrival. My boy dropped the whinging, and switched to latching on to his adored 18-year-old cousin like a happy leech.

(Later, said heroic 18-year-old nephew even looked after the kids while I actually managed an evening out with that bloke I’m married to. At the same restaurant! At the same time! Although we’re so used to having separate social lives, I insisted on sitting at different tables).

The following day, it was time for the family's traditional Prader-Willi Friendly Easter-egg hunt. My daughter, who was still at a 'Perfect Peter In The Horrid Henry Books' level of smugness (having enjoyed her brother's bad behaviour in the car, obviously thinking it reflected well on her), ratcheted her smugometer right up to the 'Jeremy Clarkson Meeting His Bank Manager Whilst Sipping Champagne From A Call Girl's Belly Button' level, thanks to a monster haul. As well as six plastic eggs filled with a selection of no-sugar sweets, to be rationed out over coming weeks, my girl reeled in the additional Easter booty of three books and a DVD. This was compared to the transitory delights of her brother’s trio of chocolate eggs, which are the best part of demolished already. She knows that the Easter sympathy vote from relatives (who buy her extra stuff because they feel sorry that she isn’t allowed chocolate) is a right result.

“Mum, my books will last forever. And Aunty Jill got me some of my special sweets anyway, because I’ve got Prader-Willi. Well, the Easter Bunny did, anyway. Did Aunty Jill tell him I was special? Did he go to our sweet shop? Is the Easter Bunny real? Jonathan at school says he’s not. He isn’t real, is he? No. He isn’t. But he is. He is.”

She stopped, briefly, to breathe.

“I think the Easter Bunny  is real, yes. Yes. I like being special because I get books and a DVD and it’s loads more than my brother, but I won’t go on about it. But it is kind of TWICE as much. I won’t talk about it though. It is better than his chocolate. My books are definitely better than his chocolate.”

Song is Rico & The Special AKA - Easter Island

Saturday, 12 April 2014


It’s halfway through the Easter break and I haven’t killed the kids yet.

That’s a successful school holiday in my book. Well, so far.

Today we visited baby Scarlett, a rosy-cheeked bundle of cute, who is missing the same tiny part of a chromosome as my daughter.

We’d met for the first time last year, and had a girls’ lunch, when Scarlett still had that wobbly, floppy-limbed, Prader-Willi Syndrome baby muscle tone.

Today, just a couple of weeks before her birthday, the little charmer was sitting up with a straight back, holding her head up, and clapping proudly. She’s got a lot to be proud of.

My daughter transformed herself into Prader-Willi Guest Expert to offer Scarlett’s mum advice on what constitutes healthy snacks and which TV programmes are babyish or not.

And my boy even managed to play nicely with Scarlett’s sisters without breaking into his current favourite song: a never-ending 100 decibel rendition of Darth Vader's Imperial March from Star Wars, each note sounded out as the word ‘bum’.

It was a good day. 


I had to mention it, didn't I?

Bum bum bum bum-bum bum bum-bum bum.

Music is "The Imperial March" - Darth Vader's theme from Star Wars

Friday, 4 April 2014


It might have been because I wasn't feeling too chipper this week. My chipper had indeed dipped. 

Nothing major, or inexplicable. A combination of badly-timed freelance deadlines, a husband on nights and worried about a regime change at work, my boy being a bit of a bollix, my girl being my girl, and me just feeling tired.

I'm citing all this in my defence, because I cried at The Archers, for f**k's sake. A storyline just got me this week. [I'm not going to even bother with a spoiler alert, because, well, it's The Archers]. No, it was nothing to do with Tom sodding Archer's pigs, or Jennifer frigging Aldridge's new kitchen - it was Ruth, having a miscarriage.

My pregnancy mishaps were a long time ago.  One of the 'dates' rolled by the other week, and it was OK, or at least it seemed like it was.

But it was when Ruth said about the blood. About there being too much blood, and her knowing, for sure, she'd lost her baby.  It made me remember the times I knew. My blood running cold at the same time as it ran hot from my body. 

It made me remember the worst time. The Friday night we were round our friend's house at a noisy, busy, house party. How I sat in her toilet staring down at what I thought I'd lost again, the blood all that was left of what I thought was my last chance for another child. How I spoke to her in the kitchen and told her I'd have to go, but it was OK, I'd pick up a couple of mates from the pub as previously arranged, because I didn't want to let them down, and anyway, everyone else had had a few drinks. How I got us home, got my daughter to bed, how I did all this in a sedate, methodical, state, like there was nothing wrong. And how it was then, and only then, that I fell apart.

I had to wait until Monday to have a scan. My Long Weekend. 

I was convinced this was like the other times. That there'd be no heartbeat. I didn't think I could bear the kindness of the radiographer, as she rubbed the gel on my belly and switched on the screen. 

And then there was this little thump. And the worst turned into another best. That little thump is the one that's been a little bollix this week. And I should point out that every time I complain about the little bollix on this blog, I am celebrating the fact the little bollix is here at all. The fact that he came back to life for me, that I was wrong when I 'knew' he was gone. He'd gone nowhere. He was here. He's here. 

No, I mean, he is here. Literally. He's just padded down the stairs, and it's 10 o'clock at night for f***'s sake! GET TO BED!

Video is Mara Carlyle - Baby Bloodheart