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

Patch

She really didn't want to wear it at first. I didn’t blame her. Lift up your hand and cover up one eye and see how off-balance it makes you feel.

But my daughter’s eye had to be patched.

A big part of Prader-Willi Syndrome is the hypotonia (weak muscles). This muscular imbalance doesn’t just mean difficulties with the big stuff, like walking. It affects all of her muscles, including her eyes.

So, the family learnt yet another fancy word: strabismus. No, it’s not the title of a recently discovered album of Genesis out-takes. (Thank God). It means squinting, and/or going cross-eyed.

And so, for a while, to correct this, she had to be a pirate.

The brightly-coloured patches were like giant plasters you were supposed to stick directly over the eye. But our pirate, despite a few pleading parlays on the subject, was having none of it. So we attached them directly to the glasses, with a generous overlap sticking up, to the side and below the frame, to prevent her from peering round the edges.

The patches are long gone. But because of Prader-Willi, our former pirate will always have an off-kilter perspective on life. It's just the rest of us that have to do the squinting now, to try and see things from her point of view.

Video is The Muppets - Shiver My Timbers (from Muppet Treasure Island)

Angry

I’m angry tonight.

No, I'm not. I'm furious. Furious that the sick and the disabled are getting a good kicking from the privileged and powerful.

I’ve just watched Inside Job, Charles Ferguson’s Oscar-winning documentary on the 2008 global financial meltdown. The world is in the midst of the worst financial crisis since the Great Depression. And it is the direct result of the recklessness, duplicity, greed, dishonesty, and downright criminal behaviour of bankers. Not forgetting the contribution made by the complete failure of regulators to do their job, risible credit rating agencies who were paid by the firms they were rating, and the market itself. Last, but by no means least, are the governments around the world who failed to heed warnings, failed to act, and have since failed to tackle the causes of this whole disaster. Meanwhile the people responsible continue to earn astronomical bonuses, after shovelling taxpayers’ bale-out money into the fires that keep them cosy and warm, while the rest of us shiver.

So what happens now? Never mind the billions that were blown by the bankers. Never mind the billions that corporations divert around the world to offshore companies so they can avoid paying tax. No, the UK’s ever-more terrifyingly incompetent coalition government decides on a different priority. Forcing the sick and disabled back to work. (See this article by Zoe Williams in today’s Guardian: No alternative to cutting disabled and ill people's benefits. Really?).

Let’s face it, if only we could root out the ‘millions’ of workshy liars and cheats on the sick, then our economy will rise like a phoenix from the flames, and we will boom once more!

The fatuousness of this argument astounds me. Of course there are benefit fraudsters. Of course there are people who lie about having a disability and cost taxpayers money. And they are contemptible. But they're a drop in the ocean compared to corporate villains. 

And the government’s Welfare Reform Bill scares me silly.

I dread the day my daughter has to do a “work capability assessment”. Prader-Willi Syndrome is a rare and complex condition, and one that even many doctors, with years of medical training, are unfamiliar with. 

I’m really worried that in a few years time, someone from contractors Atos Healthcare will be deciding what my daughter is and isn’t capable of on the basis of a 20 minute meeting. I’m worried someone with eight days of training in disability will sit with my complicated, unique, daughter and decide whether she will continue to receive benefits. I’m worried that we won’t have the money ourselves to give her the support she will need. 

It feels like the safety net she’s standing on is being tugged. And if we don’t get angry enough about this and shout and scream and stop falling for the government’s diversionary tactics of getting those of us at the bottom of the wealth chain to fight with eachother, that net is going to be whipped away. And unlike the tablecloth trick, where the crockery teeters, but remains standing, unbroken, she will come crashing down. And I won’t be able to catch her.

Video is Johnny Cash - The Man Comes Around. (I'm not religious, by the way. But Johnny's righteous anger seems appropriate). 

"There's a man going around taking names 
And he decides who to free and who to blame
Everybody won't be treated all the same"

Cold

Sometimes I fail. Sometimes I don’t go the extra mile for my daughter. Sometimes I take the easy option. Like today.

Tonight, my daughter should be at her last Girl Guides meeting before Christmas. But she won’t be.

It's an outside meeting, involving a long walk in the cold to look at the Christmas Lights, and ending up with a pit stop for chip shop chips on the Market Square.

I started my usual stream of consciousness plan of action in my head: “Right, she’ll need her thermal gloves and socks on, but her hands and feet will still be cold, because of her poor circulation, which means she’ll feel more hungry and more tired, because the cold does that to her, also she obviously can’t have chips, so I should send her with a bag of Skips as an alternative because they’re reasonably low calorie, but what about the smell of the chips, that'll be torture, and then they said they’re also having a hot chocolate, well, where from, and will they be able to give her ‘light’ hot choc if I provide it, and where exactly will they be at 8pm, because she's so obsessive about her bedtime lately I've been picking her up from Guides half an hour early , but if they're out and about how easy will this be?”

And then I stopped.

I was tired. I should have organised this before. It would just be easier if she didn’t go.

This is why I looked at my daughter and I said: “Do you really want to go? And watch all the other girls eat chips? And get cold and exhausted?”  

Of course, when I put it like that, she said “No”.

I’m not very proud of those questions. They were too harsh, too leading, and too cold. They go against the grain. Against our usual ethos of sorting stuff out, working out wonky, roundabout solutions, and finding alternative ways for her to join in. 

It wasn't my finest hour.

Song is The Ruts - It Was Cold

Believe

“I believe in Father Christmas.”

The certainty in my teenage daughter’s voice was impressive.

The emphasis was firmly on the ‘I’. The statement was obviously aimed at classmates, or older, more worldly children who had tried to tell her otherwise. 

We’d been listening to some Aretha Franklin, which had caused her to plead, in an impossibly grown-up voice: “Mummy, can we turn off the old music now, and have something modern?”. 

Deciding not to push my luck with the new Tom Waits album, I let my girl loose with the hi-fi controller. Feeling festive, she put on The Best Christmas Album In The Word...Ever, and out of the speakers came the sounds of ‘I Believe In Father Christmas’ by Greg Lake. 

First, let’s get two inconvenient facts out of the way:

1. The song was released in 1974, which, by any stretch of the imagination, is not ‘modern’.
2. Greg Lake claims the song is a protest at the commercialisation of Christmas, and lyricist Peter Sinfield says it deals with a loss of innocence and childhood belief. 

Neither of these facts can change my daughter’s pure, simple, and joyful enjoyment of the track. Because it says “I believe in Father Christmas’. And she does.

“People say that Father Christmas isn’t real, Mummy,” she announced, halfway through the song, her eyes wide and serious.

“But I know he is, because his presents have a label on, saying they’re from Santa.”

You have to hand it to her. It’s a credible argument.

I am mum to a girl with special needs, which means she has a special approach to Christmas, compared to the average 13-year-old. Look at her face in the photo above, taken when she was six. All you need to know is now, seven years on, when you mention the C-word, she still makes the same face.

Sometimes her needs make life hard. Sometimes they make it nice. This Christmas stuff - it’s right up there at the top of the nice charts.

So I’m proud to stand up, state my name, put my hand on my heart, stare unblinkingly into the middle distance, and declare the following:

I believe in Father Christmas, too.

Video is Greg Lake. You know which song.

Socks

Today, I am 40 years old. It’s a shocker, it really is.

I’ve had some big moments in my life where I teetered on the edge of growing up, but I always managed to rock back on my heels and resist.

When you become a mum for the first time, and you realise you’re in charge of this tiny bundle’s life, you are forced to pull your socks up and be responsible.

When a man in a white coat tells you your new child has a rare chromosome disorder and will consequently never live an independent life, you have to hoick those socks up even further.

And when you try and try for another baby but the little blighters keep failing to stick, all that damn tugging means your socks start losing their elasticity.

And yet.

When big moments happen, when things get tough, when decisions need to be made, I still look over my shoulder for the adult in the room. And take a big gulp when I realise that it’s me.

Still, having reached this grand old age, I’ve finally realised something. Just because you are an adult doesn’t mean you always have to be one.

So I have given myself permission for the following actions (some of which have happened once, some of which have happened a few times, and some of which happen all the time)...

To be a bit silly. To do daft things. To drink too much and make a fool of myself. To pogo to sweary music in my kitchen. To have a food fight. To tell filthy jokes. To perfect my already extremely impressive but ultimately pointless Scooby Doo impression. To sit on a beanbag eating sweets and watching Jaws on the telly when I should be packing for my house move the next day. To put off filling out that Disability Living Allowance form and instead spend all evening making a homemade birthday card for my mate by superimposing their head on top of Katie Price’s. To go the supermarket for milk and toilet roll but come back with gin and Monster Munch.

To have fun.

Happy 40th, me. Here’s to never growing up.

Video is Madness - Forever Young