Sunday, 28 April 2013


“Mum! He said a rude word!”
“He did, he said boobies.”
“He did.”
On the balance of probabilities, my daughter was probably telling the truth about her brother.
She continued. “You shouldn’t say boobies. You should say breasts.”
I silently concluded that actually it was marginally more preferable that my four-year-old boy ran around shouting “BOOBIES!” rather than “BREASTS!” but even so felt compelled to suggest: “Well, maybe both of you should talk about something else.”
My girl looked at me scornfully.
“They are just part of our bodies, Mum.”
I felt suitably chastised*, and quite proud of my daughter’s display of maturity.
A moment later, I was slightly less proud of my son, who looked at her solemnly, considered the wisdom of her words, then turned to me and announced: “Yes, they are just part of our bodies, booby-head.” 
The little tit.

*Vocabulary addendum:
I went with chastised instead of my original choice of word, which was chastened - although the dictionary definition of the latter has a rather fine example of usage, considering the subject of this post: 
verb [trans.] (usu. be chastened) (of a reproof or misfortune) have a restraining or moderating effect on: the director was somewhat chastened by his recent flops.  
Having seen this, I will now be compelled, every single night when I take my bra off, to utter: “I am somewhat chastened by my recent flops.”

Big Joe Turner - Flip, Flop And Fly

Thursday, 18 April 2013


It's my own fault, I admit it.

In my post Anchor, last week, I wrote about the relative peace and calm we were experiencing. I spoke of how my daughter's night-time jitterybugness seemed to be more under control.

So, of course, tonight looks like being the fifth night in a row of quietly-building, goggle-eyed, wandering-about, hallucinogenic sleeplessness. She's so tired she looks like she's got Parkinson's: her head is nodding, her hands are twitchy, and her eyes are darting about like Eric Bristow on steroids. She has what I have decided to christen 'the half-baked awake shakes'. My beautiful, unrecognisable daughter with the syndrome that means she is always physically hungry, was so exhausted tonight she forgot how to eat.

Next time, maybe I'll keep my mouth shut. You know that saying about tempting fate? I think I must have done a pole dance for the bastard.

Video is Feist - Pine Moon. "Pine moon, spoke too soon..."

Tuesday, 16 April 2013


"Bird" No.1. Gouache & Acrylic Ink, by Peter Ray Billington.
This painting is my new pride and joy, although technically it's not mine. I bought it for my husband’s birthday, which just so happens to be today. Actually, to be precise, I commissioned it. Commissioning a painting makes me sound very grown-up and grand, when I am very clearly neither, so this is phrase that tickles me.

It’s called "Bird" No. 1, and it’s by a friend of mine, a rather splendid artist and all round decent dude who goes by the name of Pencilsqueezer (scroll down for a link to his website).

I gave him very few instructions, apart from: it’s going in the room where we listen to music, and I want it bright and beautiful. 

My husband unwrapped the surprise present before he went to work - and he was bowled over. He loves it. We're going to sit and listen to records tonight and just stare at it, if that's OK with you.

The computer I’m writing this on is in a different room, and I keep popping back in to look at the painting hanging on the wall in the sunlight. The colours are bursting off the canvas and it’s a stirring sight. Somehow it’s captured the joyous feeling you get from music that moves you, soothes you, fuels you, fools you, lifts you up, brings you down, and spins you all around.

It reminds me of something else, too. A moment when my life changed.

Much, much younger versions of my husband and me were in a rubbish wine bar. 

He kissed me and I didn’t know where I was any more. The world swirled away like an amazing CGI effect, only this was so long ago that CGI didn’t really exist so it would probably been done with plasticine. 

I came out of it blinking in the light like a mole, or an escaped kidnap victim. I was lost, but at the same time I was exactly where I wanted to be. 

I still feel the same. And that’s what I see when I look at this picture. Wrap it up, I'll take it.

Song is Sam & Dave - Wrap It Up

Pencilsqueezer (aka Peter Ray Billington), has a website called Dark Matters, where you can see more of his amazing artwork. He is available for commissions at extremely reasonable rates, and just think of this: a home without a Pencilsqueezer painting is not half as splendid as one with. Contact him through his website, here.

Friday, 12 April 2013


I was going to call this post ‘Becalmed’ but when I looked up the dictionary definition and it said something about ‘lack of wind’ I knew I couldn’t apply the word to the flatulent occupants of this house. Especially after the homemade Jalfrezi we had tonight.

So I continued paddling around sailing analogies and landed on ‘Anchored’ instead. 

After being washed overboard by the choppy waters of the last few months (yes, I am going to persist with this - just call me Captain Birdseye), we’ve navigated to calmer waters. We know where we are: moored up in a safe harbour.

Our daughter’s sleepless nights, rebellious behaviour, spaced-out hysteria, and previously unseen levels of anger have subsided. (See previous posts Maelstrom and Oink).

There are still nights when she looks like she’s about to bubble over, but we currently seem to be able to reason with her and talk her down before things escalate. She appears happier, calmer, more in control.  

She surprised me a few times with her awareness. At the height of The Troubles, I asked her if she wanted me to put some of her books back in her room (we’d been forced to remove them, as she was piling them up in her bed, throwing some of them around and reading others all through the night), and she thought about if for an age before she told me: “No, not yet Mummy. I think I’ll want to get up and read them.”

But gradually, with slow agreement and as a reward for good behaviour, we’ve returned the books and magazines and toys that were being strewn all over the place, and so far they’ve stayed put on the shelves. This may have something to do with me continuously ‘forgetting’ to replace the bulb in her main bedroom light (at first subconsciously, but then - look away Social Services - deliberately). The only light in her bedroom now comes from the soft, glow of the streetlamp outside, leaking dimly through her curtains. So she can see to pad to the bathroom if she needs to, but she can’t get up and constantly switch the big light on anymore while she rummages through her stuff, as she was doing. Judge me if you like, but it’s bloody well working, I tell you.

We’ve had the MRI scan and opthalmology exam and the results were all fine and dandy. There is nothing alarming going on inside her head, unless you count her inexplicable love for the criminally dire children’s show Me Too, which strikes me as VERY ALARMING INDEED.

It looks as if the tsunami of feelings was just a build-up of anxiety, mixed with emotional immaturity and a large helping of teenage hormones.

I’m sure it’s not over: she’ll be back to school after the Easter Holidays next week, where she’ll be steering around the rocky reefs of friendships and lessons and emotions and PE. She loves school, but it is the open sea and it may set her brain whizzing again. 

Then, next month, there’s the looming removal of four teeth and the addition of a brace, which I know has the potential for much whizzery and dizzery.

But that’s ahead of us. 

For now we’ve laid anchor.

Video is ├ôlafur Arnalds - Near Light

Tuesday, 9 April 2013


“Then that thing happened that I’ve seen happen a million times before. When I looked up at her, Mrs Garcia’s eyes dropped for a second. It was so fast no-one else would have noticed, since the rest of her face stayed exactly the same. She was smiling a really shiny smile.”

The excerpt above is taken from RJ Palacio’s Wonder - a book about Auggie, a 10 year old boy with massive facial deformities. Specifically, it’s Auggie’s razor-sharp take on ‘the look’ he gets when new people encounter him. 

I know exactly what he means. When my daughter was a small, wobbly-legged 3 and a half-year-old, and walking along the street on her pimped up zimmer frame when other kids her age were skipping along, she got that 'look' from people. The split second double take, the intake of breath, the sudden urge to look away, the pity, the guilt, the panic, the smile. It’s not usually cruel or mean - it’s human nature. When we see something out of the ordinary, we instinctively look again, and then look away a little too quickly when we realise what we’re doing. The use of ‘we’ here is deliberate: I admitted in a previous post (Her) that I’d done it myself.

But now that my daughter is older, and no longer wears the rigid, plastic body brace, or needs various contraptions to lean against or strapped on supports to give her extra balance and strength, the looks aren’t as common. Unlike Auggie, she has no obvious, immediate disability. But she does still get them, occasionally. Strangers sneak a sidelong glance when she does something that’s not quite right for her age: when she does an extra lolloping walk; flaps her hands about absent-mindedly; has a ‘tantrum’; or loses control of her emotions inappropriately.

In the book, Auggie is fully aware of his unusualness, his extraordinary medical condition, and how people view him.  I don’t think my girl has quite such an incisive awareness of other’s perceptions. I don’t know for sure, though. I can’t see inside her mind. She doesn’t come with a handy, comprehensive, first person narrative.

Wonder is an affecting story. It’s simply written (it’s a children’s book, although it’s one of those children’s books that adults find just as compelling), and honest. Although Auggie’s condition was hugely different from my daughter’s, it resonated with me because of its focus on the ordinary things in his extraordinary life: friendship, loyalty, school, family, growing up, laughter, and love. There are moments of cruelty and despair. It's got some of the best writing I've seen from the point of view of the sibling of someone with a disability. Above all else, it is full of that most undervalued emotion - kindness. 

I’m going to share this book with my daughter and with my son too, when he's older. I think perhaps they can both learn some things from it. That will be a Wonder enough for me.

Video is Natalie Merchant - Wonder

Monday, 1 April 2013


This is the soundtrack to Easter round our gaff: the intermittent barked shout of “Chocs away!”.
We're not re-enacting scenes from Biggles. It doesn't mean: "Sling the wooden blocks away from the wheels of the plane, Algy, old chap." It means, perhaps more obviously: "Put the chocolates away."

When you have a teenager with Prader-Willi Syndrome (who never feels full up) and a four year old with a sweet tooth (who never shuts up), the burning questions being considered over the Easter Bank Holiday are as follows:
  • How many chocolate eggs to allow
  • What healthier alternatives need to be supplied for my PWS daughter
  • Where the blinking hell to hide everything

So thanks to Nanna & Grandad, Grandma, Mum & Dad and Uncle Mark, Drake Minor got a chocolate rabbit, a Celebrations egg, a Chocolate Buttons egg, a bag of mini chocolate bars and some chocolate easter chicks. Drake Major, who isn’t allowed chocolate, bagged a Hello Kitty Magazine, a One Direction Activity Book, One Direction ‘Yearbook Edition’ CD, Hello Kitty mug (bringing the number of different Helly Kitty drinking vessels in her collection to six), and some Weight Watcher lemon slices.

In order for the forbidden food not to be an issue, all we had to do was try to prevent our son scavenging for it too often, and to whisper to our daughter that her haul was much more expensive and she gets to keep her stuff forever (apart from the lemon slices).

Hollow plastic eggs filled with no-sugar sweets for strictly-timed and counted treats were also an effective weapon in the Easter Peace Process (see previous post Chocs).

Keeping busy helped, as always. 

We went on an egg hunt in the woods at the RSPB lodge, finding pictures of wildlife in return for a creme egg (swapped for the aforementioned sweets in our daughter’s case). 

We also went out for Sunday lunch at a local pub.

Incidentally, in case you were thinking this post sounds like a smugfest of my parenting skills and our biddable, delightful children, you’ll be pleased to know this trip ended in mayhem.

Not because of the girl with an insatiable appetite, who actually waited very patiently for her dinner to be prepared.

No, this was down to her little brother, who decided to empty the pepper pot all over the table, refuse to either sit down or eat his plate of meatballs (specially ordered), and who FLIPPED THE FLIP OUT, when I carried out my warning of ‘no ice cream if you don’t behave’, then literally carried him out of the pub, kicking and screaming, flung over my shoulder in a fireman’s lift as a consequence of his response to the awful reality of a no-pudding-situation. I was hoping for a round of applause, or at least an admiring glance or two from fellow dining parents, in recognition of my iron will and disciplined parenting, but nothing. I got nothing

Song is Tindersticks - Chocolate. Not necessarily apposite, but it is *called* Chocolate.