Reflection

Tonight is New Year’s Eve. A time of reflection.

I don’t mean the sight of my squiffy face staring back at me, mirrored in the side of a goldfish bowl-sized wine glass. 

No, I’m referring to the habit of looking back at the miscellaneous mish-mash of stuff that has happened this year. Life, bumbling, stumbling, and rushing along.

In 2011, as usual, Prader-Willi Syndrome has played a huge part and a tiny part in our lives. We’ve planned meals, bought the right snacks, arranged alternative food, adjusted, tinkered, overseen, delegated, cajoled, praised, scolded, shouted, and laughed about it.

I’ve been amazed at how much self-control a little girl can display, against the odds. Although I’ve watched my daughter cry at the news that tea that was five minutes late, on other occasions I've seen her wait, silently and stoically, for two hours, just so she could eat with everyone else.

I’ve also seen my daughter cope with huge changes.

We moved back to our home town after nearly 20 years away. My girl started a new school, made a friend, and started to shine. She became a teenager, which meant some days soaked with stormy emotions.

Really, we’re all still finding our feet. My toddler's are usually kicking me in my face as he jumps on my head pretending to be Spiderman. Did I mention he’s starting nursery in January? I expect to simultaneously miss him and heal up.

There is a cloud looming for 2012. Someone close to us is facing a tough climb that will pull on our reserves of strength. I hope we’ve got enough to haul us all through it.

But looking forward, I’ll make the same prediction I always do at the start of a New Year. It’ll surprise us.

So tonight, our daughter will go to bed at 8pm, as usual. Upon her insistence, we’ll wake her up and bring her might-actually-not-be-awake-at-all-and-I-think-she’s-technically-sleepwalking body downstairs to watch the fireworks and hear Big Ben chime midnight.

Here’s to 2012. May it be right, not shite.

Video is Aretha Franklin & Billy Preston - Auld Lang Syne.

If that doesn't float your boat (can't imagine why not, though), how about Girlschool doing their version? It's sublimely rubbish, but there are definitely no bagpipes.

Forgiven

So I take it all back. Everything I’ve ever said about Justin Bieber.

The auto-tuned automaton has an entirely disproportionate ability to annoy me. This, I’m sure, is part of the reason why my daughter had decided to be ‘into’ him. 

My only consolation this year has been the fact that the monstrous Mariah Carey has managed to trap the egomaniacal, little, mop-topped marionette in a department store (according to their appalling All I Want For Christmas duet video) and may well by now have smothered him to death with her enormous fake breasts.

But this Christmas, Justin Bieber, in the form of a Bieber Fever Alarm Clock, was able to put this expression on my girl’s face. 

For this, he is forgiven.

Oh, and please don’t feel you actually have to watch the video. I don’t want to ruin your Christmas.

Video is Mariah Carey & Justin Bieber - All I Want For Christmas. It's 'Super Festive!' apparently. That is if your idea of something festive is a 41-year-old woman in an Ann Summers' sexy Mrs Santa outfit rubbing herself up and down a wall and presenting her bottom to the camera, like a baboon on heat. 

Gatherings

Nanna, Grandad, and a girl licking her lips at the prospect of more sprouts

Food is at the epicentre of all our family gatherings.

Whether it's a wedding, christening, funeral, birthday, or parole party, our clan is big on eating. Literally. We are definitely big, and it’s definitely down to eating.

Christmas, of course, is no exception.

It can be a challenge with a child with Prader-Willi Syndrome, who is always hungry (as opposed to the rest of us, who just continue to eat, despite being utterly stuffed).

My daughter doesn't know what it feels like to be full. Her brain doesn't tell her this. My brain, and the buttons popping off my straining clothes tell me, but then I'm just an idiot who doesn't listen.

However, there are methods to avoid the madness at Christmas and keep our daughter happy on the food front:

• First of all, there’s none of this waiting until after the Queen’s Speech to tuck into your scran. No, no, no. My daughter’s dinner-time is usually 12 noon on the dot. On Christmas Day we stretch this out until 1pm, then get stuck in.
  
• She has boiled potatoes and just one roastie, instead of a heap of the crispy fat-coated spuds.
  
• Veggies are piled sky high, including sprouts, which could accurately be described as throwing caution to the...er...‘wind’.
  
• A small portion of Weight-Watchers recipe Christmas pud is allowed.
  
• Breadsticks, raisins, and other assorted low-fat snacks and no-sugar sweets are rationed out throughout the day when the choccies and biscuits are passed round.

Now usually this all happens at my mum & dad’s house. When I say usually, I actually mean that this is what has happened for the past 40 years. That’s a lot of turkey and cranberry sauce under the bridge.

But this year, having moved back to my home town, I’m doing the festive fare.

I’m pretty chilled about it though. I’ve been working out all the timings and I’ve got it sorted: two and a half hours. Plus 20 minutes. That isn’t for the turkey - that’s how long before dinner I plan to start drinking. Well, I don’t want to be under-done.

I'll see you all the other side of Christmas. I'll still be picking the glitter out of the carpet (Santa's little elves and reindeers leave a dusting of it, didn't you know this?). My daughter will be writing her thankyou notes. My toddler will have broken every single toy he's been given.

I love Christmas. Have a great one.

Video is The Ronettes - Sleigh Ride

Discovery

Like some evil plantation owner I’ve been keeping the present-picking slave labour busy at the Amazon warehouse this week.

Several interesting packages have winged their way to us, been parcelled up, and are now stashed in the back of my wardrobe, ready to give the kids on Christmas morning.

But I cocked up. I left one delivery on my desk by mistake. And while I was on the loo, my daughter spotted it, and had a quick rifle through.

When I walked back into the room, she looked distinctly miffed.

“Mummy, I’ve seen The Parent Trap DVD. It’s in that packet.”

‘Bugger, bugger, bugger!’ I thought to myself. ‘How am I going to get out of this one?’.  This gift, you see, was one from her actual Santa List, not one she’d asked me or any other relatives to buy. 

After ticking her off for going through my post (but really, who could blame her?), I muttered something about Father Christmas asking me to get this present for her.

She looked at me oddly, and trudged upstairs to her room. 

Later she presented me with the card pictured at the top of the page. In case the sentence structure confuses you, I'll rearrange it for you:

Dear Father Christmas, can you not get parent trap DVV
because my mum is going to get it for christmas

Also squashed in on the right is the sentence:

but you can get animal crossing wii game.

And there was me thinking I'd finished all my Christmas shopping.

She was adamant that she needed to send the card to The North Pole immediately, but I managed to persuade her that - as it was dark - it was best I posted it for her.

When I tucked her into bed, I found a pile of her earlier drafts (pictured below).

She takes this Santa stuff seriously.

Video is The Electric Light Orchestra - Don't Bring Me Down (from the album Discovery).

Snap

My daughter’s got a new habit.

I didn’t realise its purpose at first.

She snaps her fingers. Not to click along in time to the beat of music she’s listening to, nor to summon me to do her bidding (she has other methods for this). No, she has a very specific reason for doing it.

It’s a test.

She took her gloves and coat off the other day, looked carefully at her hands, and started snapping.

“What are you doing that for?” I asked.

“I’m seeing how cold my hands are,” she explained, giving me a look. “If I can click my fingers then they’re not too cold.”

Having Prader-Willi Syndrome means my daughter’s circulation is poor, and her extremities are rarely warm, even with thermal socks and gloves on. She’s not happy being outside in wintry weather for more than a few minutes; if we make a snowman, we make it small and we make it damned fast.

So she seems to have developed a little totemic reassurance for herself. Each click, click, click, is accompanied by a satisfied nod, nod, nod.

I’ve decided to call it her cold snap.

Although it’s just struck me that I really need a contingency plan for when the weather turns really cold. What’ll I do if she can’t click? The title of one of her favourite DVDs seems strangely prescient: Ice Age - The Meltdown.

So I’m off to stock up. Glove warming heat pads, hot water bottles, and patience. Unfortunately, I'm guessing the last item might be out of stock at Sainsbury’s.

Video is Stiff Little Fingers - Alternative Ulster (The eagle-eyed among you might have noticed I originally posted this mistakenly with yesterday's post. Just keeping you on your toes.)

Genius

We finished our tea last night and, as usual, my daughter had eaten every last scrap.

When your child has Prader-Willi Syndrome, their insatiable appetite means you don’t have to worry about anything being left on the plate. They will scoff the lot. Without exception. Even Brussels Sprouts, the weirdos.

She always has three courses for her lunch and dinner: main, low-fat pudding, and fruit. The Holy Trinity.

So she had polished off the lot. She clonked down her knife and fork. She rubbed her finger up and down on each side of her mouth in turn. She pushed her glasses up from the end of her nose, and flicked back a stray strand of fringe.

She looked me straight in the eye. And declared:

“I’m a bloomin’ genius."
 

Video is Ian McNabb - I'm A Genius

Shine

My daughter took part in her special school's Christmas show yesterday.

If I had to pick a phrase to describe the performance, I think ‘joyous mayhem’ would just about sum it up.

The cast was a motley, gorgeous bunch of children, from primary school aged poppets to hulking great teenagers.

They clutched their scripts, lost their place, declaimed their lines to the furniture instead of eachother, got tangled up in microphone wires, forgot their cues, and wandered off and on randomly. 

They were brilliant.

Two of the teachers were on the stage with them, cajoling, reminding, helping, conducting, and just about keeping the lid on things. 

My daughter was right in the thick of it. After years at mainstream school of being Angel No. 14, or Camel No. 12, she had a starring role as Cinderella. 

The girl that just used to stare at her feet throughout nativity plays was front and centre for the first time.

I wondered whether she’d freeze. Lose her confidence. Clam up.

She didn’t. She looked out shyly from beneath her fringe, pottered about at her own speed, adjusted the microphone each time before she spoke, and read out her lines. With some real oomph.

She was given a bunch of flowers at the end. She clutched them to her chest in the car on the way home, repeating over and over that she wasn’t tired at all.

We bundled her into bed and she was out like a light. 

My world is still shining.

Video is Primal Scream - Movin' On Up