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

Expecting

Stripy is pregnant.
I think Bieber is the father.
Apparently, it's likely they will eat their young.
I'll keep you posted.

(If none of this makes sense, you might want to read Tank).

Video is Shane McGowan & The Popes - Her Father Didn't Like Me Anyway

Solid

If you know your baby has a medical condition which means you can’t give them too much food, you just wouldn’t - would you?

It was an anathema to me. How could anyone ignore all the advice and allow a child with Prader-Willi Syndrome to have a diet that wasn’t healthy enough, or restricted enough? Especially as a baby. I mean, come on, who’s in charge here?

Looking back, I can remember my certainty. These people were wrong. I wasn't like them. I vowed not make the same mistake. 

And then came the moment that I realised how easily it could happen.

When my daughter was a baby she couldn’t feed. Initially, in hospital, we had to use a nose-tube. Then came the long, long days and nights of bottle-feeding and trying to get the spindly-legged scrap of a girl to drink more than a few millilitres of milk. (I wrote about it in an earlier post - Alarm).

At four months old, we tried her on solid food for the first time. The usual home-made vegetable or fruit purees you spend ages making as first-time mum, and which you are always slightly disappointed by when they all turn out to look like vomit. We propped up her floppy body at an appropriate angle. We loaded up her tiny plastic spoon with squidge and got shovelling.

She loved it. It was so much easier for her to eat from the spoon than to suck from the bottle. She somehow ended up with puree up her nose, in her ears, and even on her feet, but it was the first ‘feed’ time ever that had been a pleasure and not a struggle. 

For the very first time I felt I had been able to provide her with the sustenance she needed, and it was a good, good feeling. 

This was when I knew. Because it had been so hard up to that point, because this new method of food delivery looked like it was going to be a barnstorming success, and because it felt so nurturing, it was incredibly tempting to give her some more. 

Video is Squeeze - Tempted

Walk

My daughter really wasn’t keen on walking home from school yesterday.

It’s only half a mile.

We’ve been having trouble with her managing the walk to and from school, particularly on a day when she does PE or walks to the other school site, which is a little distance away.

She gets tired easily. So we sometimes drive there and walk back, and sometimes - on an extra busy day for her - drive both ways. If anybody dares to judge me as being a lazy mum clogging up the road in my 4x4, then I’ll fight them. (I am pretty lazy, so I'll give them that, but I don’t have a 4x4. And this is NOT about me, so they can butt out).

I thought it was going to be a problem when her lip started to quiver as we told her we’d be walking home with her brother, who needed to burn off some energy and was doing this by zipping around on his scooter knocking down small children and pensioners.

But her dad stepped in.

“It’s not far. We’ll make a list in our head of what we’ll see on the way and tick it off. OK?”

She looked unsure. He carried on, manfully. I looked sceptical, womanfully.

“First, there’s the Red Lion pub. 

Then there’s the crossing, where the lollipop lady is.

Then there’s the baptist church. 

Then there’s the garage. 

Then there’s the house with the white lions outside. 

And then there’s our road, and our house. OK?”

She nodded. We started walking. We reached each landmark. She started looking out for the next one, and getting excited when she saw it. We arrived home, a trail of scooter track-imprinted bodies lying prone in our wake, and my girl with weary feet but a fresh smile.

Her dad. He’s good at this, you know.

Video is Tom Waits - The Long Way Home

Boxes

My daughter ticks boxes.

In those bleak, early days when she diagnosed with Prader-Willi Syndrome, there was an element of relief in finally knowing what was wrong with her and being given a name for it.

But I didn't want her to become the label. My daughter is my daughter. She’s herself. She happens to have PWS, which plays a part in moulding her personality, but that’s all it is: a part.

And yet now, years down the line, I've learned a label can sometimes be useful. When it comes to Statements of Special Educational Needs, and forms for Disability Living Allowance and all the reams and reams of paperwork I find myself filling in, I console myself with this thought.

Because her behaviour and symptoms and characteristics and personality can be 'explained'. As individual as she is, as different as she is from another child with PWS, she fits the authorities' criteria. There is a name for what she has. It can be recorded in black and white. She can be categorised. And we can get down to the nitty gritty of working out the help and support she needs. It’s not always available, and sometimes we have a fight on our hands, but being able to tick those boxes gets us out of the starting blocks.

Video is Elbow - Jesus Is A Rochdale Girl. 

"And they found me full of myself
And bloody-minded will
And as yet a box to fill
And as yet a box to fill"

Tank

My daughter is finally the proud owner of a tropical aquarium, with four little beady-eyed fish swimming about in it.

Getting to this point has been a saga that would have tested the most patient soul.

The first one, delivered by courier, was smashed. The second one we cracked, by deciding to line it with gravel a little too haphazardly whilst under the influence of grape-juice.

The third and final one was set up, decorated with assorted Spongebob Squarepants characters, and placed on a bookshelf in our daughter’s room in time for her birthday, nearly seven weeks ago.

She was thrilled. We explained how we would have to dechlorinate any water and get it to the right temperature. We told her how we'd start off with just a a few hardy little fish, and get the bacteria going in the tank. (I had NO idea beforehand that it was so complicated. I’ve started wishing we’d gone for a gerbil).

Wide-eyed, our girl promised she would join in the rota for cleaning and changing filters. Three family members/mates promised a trip to the ‘fish shop’ to buy her some little, wiggly, finny friends.

And then we realised. In a few weeks we were about to get the entire house rewired. Which would involve floorboards coming up, and furniture moved away from walls. If we filled up her tank with the required 70 litres of water, we would never budge the bugger.

And so, we had to break the news to her. 

“You might have to wait a while before we can fill it up and get some fish, sweetheart,” I said, explaining the dilemma, before softening the blow with a hastily bought extra present (another Animal Hospital toy to add to her ever-expanding collection).

She took it on the chin. With barely a wobble of the lip, and astounding forebearance, she agreed that it was best to wait. This is the girl who collapses in a sobbing heap if you mistakenly give her diet yoghurt for lunch and low-fat custard for tea instead of the other way round.

So, she's waited. And waited. At last, this weekend, we stocked the beauty up with four danios - two zebra ones, a leopard one, and a golden one.

In order, they are: Stripy, Mist, Sabor (named after the leopard in Disney’s Tarzan), and, amusingly, Justin Bieber. Aptly, he’s a little git that seems to be irritating the others.

And no. I am NOT posting a Bieber song. I shall just laugh, evilly, to myself as I secretly look forward to the day when I will be flushing Justin Bieber down the toilet.

Video is Eddie And The Hot Rods - Fish 'n' Chips. Thanks to the lovely @Beezerr for recently introducing me to this track. 

Friend (Update)

My teenage daughter went round her mate’s house after school yesterday.

They did the normal stuff teenagers do: sneaked some Bacardi Breezers upstairs; talked about who they’d like to snog at the school disco; and popped out to Boots to nick some lipsticks.

Well, no. I'm kidding. They didn’t actually do any of these things. What they did was play with dollies for two hours.

Bethany, her new friend - in fact the first friend she has ever made herself - goes to the same special school as my daughter.

A month or so ago, she came round to tea at our house (see post Friend). Yesterday was the return trip. My girl had already packed her doll in a bag five days before, not wanting to forget it.

And I’d already done my preparation. I’d had The Food Conversation with Bethany’s mum, asking her to give my daughter the relatively healthy, quick and easy Fishfinger Special. (Fish Fingers, jacket potato and peas). I’d also packed a low-fat pudding in her school bag, and a low-calorie snack bar. 

With Prader-Willi Syndrome, field rations still have to be monitored from HQ, you see.

It wasn't exactly a late night. My girl was delivered back home just after 6.30pm. Probably equally as tired as a non-PWS teenager rolling in it at midnight after a cider-fuelled house party.

Tired and happy. Still dressed in her spotty socks, spotty leggings and spotty nightshirt she’d worn to school for Children In Need Day.

My child is in need of a lot of things. But last night was good. Because she wasn’t in need of a friend. 

Video is The Go Team - Friendship Update

Bottom

Getting my daughter outside has always been a struggle. She’d always rather be in the warm, reading a book.

Which is fine. But when your child has Prader-Willi Syndrome, you need to sneak in physical activities whenever you can. The trick is not to call it exercise, and to entice her out with a little mission, project, or reward.

So rather than just go for a walk, we’ll pop to the shop to buy a magazine. To encourage her to come out for some bending and stretching and fresh air, we’ll get her to grab a trowel and do a spot of gardening with her dad.

The latter is what’s happening in this picture.

You’ll just have to take my word for it that actual gardening is taking place. 

What it looks like, I'll admit, is a formation builders’ bum display. 

My daughter's little bottom often had an unintentional airing during the nine years she had to wear a body brace to support her back (see previous blog entry Cast). It's hidden under her cardi in this photo, but the bottom edge of the plastic moulded jacket always used to push the top of her trousers down. 

Dunno what my husband's excuse is.

Video is The Presidents Of The United States Of America - Peaches. 
I was going to go for Moon River, but when I searched You Tube I almost clicked on Westlife's version by mistake, and the near miss frightened me so much I had to lie down in a darkened room.

Tired

Tears. Aches and pains. Worry. Nerves. Frustration. Hormones. Tiredness.

It hasn’t been a good day. All of the above have been showcased by my daughter. And some of them by me, too. The need for full scale bucking bronco toddler-wrangling hasn't helped, either.

I’m too shattered to think of a funny line to insert here.

I’m not sure why I felt the need to share this. I don’t normally mention the run-of-the-mill difficult days. 

They happen. Quite often, like today, on the fourth day of my husband’s four day shift. 

He’s off from tomorrow. Reinforcements are on their way.

But like the lady says in the soul-soothing song below, this was one day I really could have done with my firecatcher, rainmaker, soothsayer, guardian, plate-spinner, peacemaker and liontamer.

Video is Charlie Dore - Liontamer

Cinderella

She’s been a camel. She’s been a fairy. With the aid of a bedsheet, a wire coathanger, and some tinsel, she’s been an angel on more than one occasion.

When she was at mainstream school, my daughter was always one of the chorus, and never the leading lady. 

Now she’s at special school, things are different.

Yesterday, she announced, out of the blue, that she was going to be in the school play, and that she had been cast as Cinderella.

“That’s brilliant. That’s the leading role! Well done, sweetheart. We'll all come to see you!” I told her.

It made me fondly reminisce about my time on the stage. Who could forget my triumph, aged 17, in my upper school’s version of Trojan Women, when I played Athene, Goddess of Virginity? (I remember one teacher remarking that it was “hardly ‘method’ acting” - a comment that would surely get them arrested nowadays).

I can’t wait to see my daughter in action. She might not remember all her lines. So bloody what?

At long last, she doesn’t have to stand at the back of the stage because she can’t quite keep up. It’s her turn in the spotlight. She shall go to the ball. And she deserves it.

Video is Syl Johnson - Star Bright, Star Lite. Thanks to the marvellous @twrafferty for introducing me to the music of Mr Johnson.

Strings

I went out last night, with some very old friends.

And we had an amazing chat - fuelled by alcohol, admittedly - and found out some things about eachother we never realised.

And it's struck me. How little we really know about other people's emotions.

I've revealed more on this blog than I ever have face to face with some of my closest friends. It's odd: I've always been able to share my feelings more readily by writing them down rather than speaking them out loud.

I have never talked properly to some of my loved ones about the despair I felt when my daughter was diagnosed with Prader-Willi Syndrome.

I held up a shield of bravado and got on with things and didn't complain.

It worked for me at the time. It was the only way for me to deal with the fact that my daughter had been born with a disorder that would not allow her to live a normal life. It still hurts me to my bones.

But putting up a front also meant I didn't necessarily share the good things. The joy I felt at other moments. The moments when things happened in my daughter's life that made me grin like a wide-mouthed frog. The ones that thrilled me to my bones.

But I get it now.

Life isn't fair. I know this. 

So. You can either sit there with a ball of twine, tying yourself up with knots of bitterness and bile.

Or you can fan out the strings of hope and possibility and chance and goodness and surprise and fun. And see what life picks up and tugs.

Video is Flight Of The Conchords - Hurt Feelings. 
Because if ever I'm feeling a bit down, this sorts me out by making me howl with laughter.

"I feel like a prize asshole 

No-one ever mentions my casserole

Could have said something nice about my profiteroles"

Badge

She walked out of school with a shy, little swagger, her coat unzipped, not done up tightly as usual.

She peered up at me through her fringe (I must get that cut) and over the top of her glasses, which were perched precariously on the end of her nose (I must get those frames tightened).

She seemed to be sticking out her chest.

When I looked down, I realised it wasn't just pride in her "teenage boobs" (God, I wish I still had "teenage boobs"). Pinned smartly to her school jumper was a bright, new, badge, emblazoned with the legend: "School Council".

Yes, my daughter has finally reached High Office.

I daren't ask her her policies. I can guess them, anyway:

• The summary execution of anyone found stealing from school packed lunches, specifically hers
• The abolition of PE
• Hard jail-time for parents who forget to pack a snack for morning break
• NO DEVIATION FROM THE SCHOOL TIMETABLE. EVER
  

Apparently, she's joint student councillor for her class, along with Kieran. (There are five pupils in total in her special school form). It's coalition politics. This should run smoothly, then.

She told me she has to wear the badge at all times and I must never ever forget to take it off before I wash her uniform (oh please, somebody, help me).

I told her I was very proud of her. And I really am.

This might seem like a small, relatively unimportant achievement. But my daughter's self-confidence is a wall that can crumble. If this fills just a few cracks with mortar, it's got my vote.

Video is the trailer for the film 'Election'

Video is Easy Star All-Stars - Electioneering

Grind

Some things about Prader-Willi can grind you down. Sometimes it can be one little thing. Something you thought was sorted but turns out not to be.

Popping its nasty little head up over the horizon like a mangy meerkat this week was something grinding. In both senses of the word. 

We went to a new dentist, and she chatted away to my daughter, keeping her engaged, and telling her how well she’d been cleaning her teeth. All good.

But of course, I hadn’t warned our friendly tooth mechanic not to mention the g-word. ‘“There might be evidence of a little grinding, and we just need to keep an eye on it,” she said.

A klaxon sounded in my head. You see, my daughter is quite obsessed with this subject. She used to grind her baby teeth noisily and constantly, until the top set were worn right down (see picture).

Now she's older, she's got a nice set of pearly whites. When the adult teeth came through, she managed, as suddenly as she started, to stop mashing those jaws together. Gone was the clacking and grinding. I’d like to say it was more peaceful, but my girl managed to replace the actual grinding with talking, endessly, about how happy she was that she’d stopped doing it. Which was almost as annoying.

So then it came.  A wave.  In the corner of the examining room, where my daughter sat, as she waited for me to complete the ritual humiliation of being told to floss more.  Her shoulders shook and she sobbed, much to the concern of the dentist and her nurse. I got up and hugged my stricken girl until it passed.

“I don’t grind my teeth anymore,” she muttered, still sniffing. I whispered a brief explanation to the dentist, who told her that she wasn’t in trouble, her teeth weren’t going to fall out, and she was still the Number One Cleaner of Teeth In Chief.

So the crisis was averted. At least I thought it was. And then my non-clacking, non-grinding, toothsome daughter spent the next three days asking me if I was happy she doesn’t grind her teeth like she used to. Over and over again.

What’s that noise? What is it? Oh yes, that would be me. Gnashing my teeth together.

Video Is Grinderman - When My Love Comes Down

Cinnamon

It's been a manic week. Working from home is all well and good - except when you're having your house rewired, I have discovered.

Me and my Mac are covered in a thin layer of dust and a large aura of frazzle.

Martin, the sparky, has had an interesting taste of our family life, which seems mainly to have consisted of us shouting at the toddler.

My daughter - the one with Prader-Willi Syndrome, the one who likes her life to be nice and orderly, and the one who doesn't like change or a break in routine - has been remarkably calm about her floorboards being pulled up and hundreds of metres of wires being pulled here there and everywhere, like a melted game of Kerplunk!.

But tonight, in amongst the mayhem of getting work finished, getting tea done, and stopping the two-year-old either electrocuting himself or going caving inside our walls, my daughter did something that worried me.

I caught her wandering round the corner, looking mightily guilty, with her mouth clamped shut.

"What are you eating?" I asked. Panic crossed her face. "Nothing!" she insisted. (Or rather: "Om nom nom nothing!" as she plainly had a gobful of food).

After a short, sharp discussion, I was able to ascertain that she'd scooped a handful of cereal from the box in the high cupboard. Which may have involved her moving and using her brother's plastic step.

To be fair, she was tired, complaining of feeling a bit under the weather, and - of course - hungry. Having PWS means you're always hungry.  Which means you need your meals on time, every time. But today we just didn't play close enough attention to the clock. It was past the allotted noshing hour. So she helped herself to something.

It's unusual for our girl to sneak food. I saw her trying to hide what she'd done, and my heart plummeted. It could be a one-off. But it could be the start of something. We'll see.

By the way, they were Cinnamon Grahams, or Curiously Cinnamons, or whatever stupid name they've got now. Can't say as I blame her. They're bloody lovely.

Video is Teenage Fanclub - Sparky's Dream. (In honour of the electrician, of course).

Oisín

Last night, I listened to something quite extraordinary.

It's an audio documentary called Oisín's Story, which aired on Irish station RTE Radio 1 at the weekend. By Jiminy, it's good. It takes its subject and approaches it with care and respect. But it doesn't shy away from the tough stuff, too. It is crafted with sensitivity and love. It took my breath away.

Oisín, (pronounced O-Sheen) is an eight-year-old boy with Prader-Willi Syndrome. For 40 minutes, we are immersed in the love, fights, triumphs, fears, songs, tears and laughter of his family's life. I know this world. I live in this world with my family and my teenage daughter, who is missing the same bit of the same chromosome as Oisín. The documentary-makers have taken a perfect snapshot of our abnormal normality. It's charming, funny, scary and sad, but ultimately uplifting. It's by far the best thing I've ever heard, read or seen on PWS.

You can listen to Oisín's Story here.

Be warned. It might make your eyes leak a bit. But in a good way.

A huge thank you to @distracteddan for thinking of me and sending me the link to this.

Video is Crowded House - Distant Sun. Our world just collided with Oisín's and we got a sprinkling of dust from a distant sun.

Links

Twitter isn’t just about what you had for dinner. (Although, of course, if it was, it wouldn’t seem inconsequential to me. Having a child with Prader-Willi Syndrome means life *is* mainly about what you had for breakfast, dinner or tea).

I go on Twitter to let off some steam, chat about music, crack a few jokes and enjoy the warmth, humour, silliness and intelligence of a bunch of people I’ve chosen to follow.

I don’t tend to mention Prader-Willi Syndrome much on there, as it’s enjoyable to have a separate space where I can be a grown-up but leave behind some of my grown-up responsibilities.

But I do tweet links to new entries on this blog, which people can click on to read if they’re interested, or move their mouse on past if they’re not.

And this is how something quite brilliant happened yesterday.

A Twitter friend read A Drake’s Progress. And realised, very quickly, that he had a real life link to my link. A close friend of his, also on Twitter, happened to have a toddler with the same rare chromosome disorder as my 13-year-old daughter.

So, with a little bit of planning, we made a small detour when visiting family up north this weekend, and popped in for a cuppa and a chat so our children could meet. 

Hugs were involved. As were questions.

My girl, who is completely fascinated on the rare occasions she meets someone with the same condition as her, began The Spanish Inquisition: “Did he have trouble feeding like me? Did he cry when he was a baby? Will he like the special snack Mummy has bought for him?”.

The little boy's parents answered all the questions happily. (A good job, really, because my daughter probably would have refused to leave until they had). And for their part, they had the chance to meet a 13-year-old girl with the same unusual DNA as their tot, and ask her (and me and her dad) questions about some of the things she did.

It was great.

It was great to meet someone without having to explain your child’s medical condition, for once. It was great to speak to someone who just knows some of the feelings you’ve gone through, you’re going through, and you’re facing in the future.

And it was great to share experiences and chat about our kids, who are so different from other people’s children, and then again, really aren’t.

So, the next time someone moans about the inanities of Twitter, give ’em a slap. Tell them sometimes it weaves a little magic.

Video is The Beloved - Hello