Straight

People who can make stuff have my utmost respect.  People who can create things. Who can fix things. Most impressive of all are people who can fix people.

The picture I’ve posted today is the best example I can think of.

Have a look at these screws and trust me when I say they are very, very, carefully positioned. These have not been Black & Deckered into some rawlplugs and then given a hefty thump with a hammer to make them flush.

No. These little babies have been meticulously placed, to within an ‘nth’ of the spinal cord. I use the term ‘nth’ as the exact measurement escapes me. It was a ‘somethingth’ of a millimetre. Close enough to make me feel faint.

These are what have hoiked my daughter’s spine back to an angle which can medically be described as ‘still a bit wonky but by God a hell of a lot straighter than it was’.

It was a spinal fusion operation. After these rods and bolts were fitted, bone was laid over the scaffolding and given the chance to fuse with her spine, so it has now 'set' forever, at this new, improved angle.

This is what is inside my daughter’s back. This is what has stopped her spine continuing a deadly curve that would eventually have harmed her internal organs and started to crush her lungs. 

This is a genuine, 24 carat gold (well titanium), unequivocal, it blows my mind every time I consider it, will you look at the size of those bolts, they’re sticking in her spine for God’s sake, how the hell do they have the balls to even do that, the air conditioning failed in the operating theatre you know, seven hours it took, I have never been so frightened about anything, MIRACLE.

Did I mention it was free on the NHS?

Video is The Stranglers - Straighten Out

Musclebound

I thought she was terrified. For a moment I had no idea what to do.

It was when I went back to work part-time when my daughter was a toddler. (I say 'toddler', but that word was never quite appropriate for her, because she never toddled until she was three and a half. At that stage, 'roller' would have probably described her more aptly).

A good friend of mine had also returned to her job two days a week. So we did a child-share, looking after the kids when the other person was at work.

Amy was a little poppet. And as she knew me well, I was convinced she’d be fine about staying with me when her mum wasn’t there.

So the first day I had her, I picked her up to give her a big hug. And she froze. I mean, really froze. Her body was rigid, like every muscle in it had snapped to attention. She felt like a wooden board, she was so stiff.

I looked at her face, convinced I’d see two wide, frightened eyes and a mouth wide open, about to let out a scream.

What I saw instead was a happy, smiling girl, who started giggling, presumably at the startled expression on my face.

She wasn’t scared at all. She wasn’t “frozen” either. What I had felt was the body of an average 18-month-old child. Because my daughter was hypotonic (a fancy way of saying she had weak muscle tone) I was used to a squidgy, soft, floppy body. Amy’s toughness was just the way muscles should feel.

Video is Spandau Ballet - Musclebound. In my defence, the video is a) deliciously terrible and b) extremely funny.

Rise

All I’m posting today is a song. It’s The Decemberists’ Rise To Me, and it struck a chord with me from the moment I first heard it. When I later learned it was about lead singer Colin Meloy’s autistic son, I realised why.

In a few short, simple, defiant lines, it somehow manages to encapsulate the emotions I feel as the parent of a disabled child: my melancholy at what could have been, my pride in what is; and my hope for what could be.

Big mountain, wide river, there's an ancient pull
These tree trunks, these stream beds, leave our bellies full

They sing out, I am gonna stand my ground
You rise to me and I'll blow you down
I am gonna stand my ground
You rise to me and l'll blow you down

Hey Henry, can you hear me? Let me see those eyes
This distance between us can seem a mountain size

But boy, you are gonna stand your ground
They rise to you, you blow them down
Let me see you stand your ground
They rise to you, you blow them down

My darling, my sweetheart, I am in your sway
To cold climes, come spring time, so let me hear you say

My love, I am gonna stand my ground
They rise to me, you'll blow them down
I am gonna stand my ground
They rise to me, and I'll blow them down
Cause I am gonna stand my ground
You rise to me and I'll blow you down

Video is The Decemberists - Rise To Me

Spectrum

Yesterday, the following discussion took place when my daughter asked me what autism was.

ME: “Well, some of the boys and girls at your school are autistic. It means they’re a bit special, like you, and they think a bit differently from most people. They can’t really understand how other people are feeling and how that should make them feel.”

HER: “What do you mean?

ME: [Struggling to think of an easy example] “Um...well say if Mummy fell over and hurt herself and started crying, what would you do?”

HER: [Without missing a beat] “Laugh.”

ME: “OK. Not the best example. What would you do if you saw Grandma and she was really, really upset? Would you be happy about it or sad?”

HER: [Looking confused] “Happy?”

It was at this point that I thought, not for the first time, that although Prader-Willi Syndrome isn’t on the autistic spectrum, it sometimes rubs shoulders with it.

Mind you, later on the same day, when my toddler (who has neither PWS nor autism) was approaching a sleepy pigeon in our back garden, waving around a bamboo stick as he did so, I added to the day’s litany of ill-conceived explanatory examples..

ME: “Oi! Don’t even think about poking that bird with a stick!”

HIM: “Why?

ME: “Because it’s not nice and it hurts. How would you like it if you were sleeping and I came and poked you with a stick?”

HIM: “Ha! Funny!”

It could just be my parenting, you know. It might not be anything to do with PWS. I might just be raising two psychopaths.

Video is Talking Heads - Psycho Killer

Letter

Yesterday, I let my daughter post a letter for me.

Now, as she’s 12, going on 13, and the letter box is roughly 100 metres from our house, you might think this is not a particularly noteworthy or impressive feat.

You might think that, but you'd be wrong.

The journey, or perhaps I should call it an expedition, involved a five minute briefing from me on where exactly she was to cross the road (directly opposite our home, in a very quiet cul de sac), how she was to stick to the path (you know, along the lines of Red Riding Hood), and then how (having achieved her objective) she was to return along the exact same route, checking carefully for traffic at all times.

I watched through the window.

She looked left and right and ambled across the road, chatting away furiously to one of her imaginary friends as she did so. (I learned in the debrief that it was Freya, an old favourite).

She walked along the path, clutching the letter to her chest with one hand, and gesticulating with the other, as the conversation with Freya got more intense. 

Then, for a minute or two, she was out of sight.

I think I held my breath.

And she was back. Still chatting, with that odd little wobble-headed, flappy-armed walk of hers, checking for cars as she crossed the road again, before she wandered up our drive and back through the door, her chest thrust forward and puffed up with pride.

Now all I need to do is train her to go to the off-licence.


By the way, the letter was a cheque payment for my Visa bill. If she somehow managed to post it down the drain by mistake, then any late payment fee is coming straight out of her piggy bank. 

Video is an excerpt from Hill Street Blues

Video is The Main Theme from Italian film Il Postino. Be warned, you'll be whistling it all day.

Wave

My daughter had a wave yesterday.

That’s how we refer to an episode where she is overwhelmed by her emotions. (A bit like me watching the end of Casablanca after four glasses of wine).

People with Prader-Willi are emotionally immature, and struggle to control their emotions. In some, this might be anger and frustration, particularly when food is denied to them. In my daughter, it takes a slightly different form.

Every now and again, she gets upset. And I mean really upset. A body-wracking sobs/ tears rolling down her face/unable to be consoled kind of upset.

The strange thing is, we can’t always work out what sets it off. It might be tiredness - but then there’s plenty of times when she’s tired that it doesn’t happen. Perhaps it’s anxiety - maybe when all the little worries and stresses swirling around in her head build up to breaking point.

The best way I have of describing it is that it’s like a wave. She might be paddling along, dipping her toes into difficult emotions, when suddenly, the tide rushes in and a wave of feelings crashes over her.

There is nothing we can do. My husband or I just hold her, brush her hair out of her eyes, and try and say calm and comforting things (probably to make us feel better, because she’s not really aware of them). The best we can offer is to curl up on the sofa with her for 20 minutes, if it looks like being a big wave.

Because all we can really do is wait. Then, as suddenly as it started, the tide goes out again. The wave retreats, with a whoosh. And with a wipe of the eyes, a sniff, and a deep breath, she’s back. And asking me why I don’t like Justin Bieber when he’s so good at singing. Telling me her Daddy is the worst dancer in the world. And asking if it’s really true that a man puts his penis into a ‘lady’s bits’ to make a baby. God, where’s a wave when you really need one?

Video is The Pixies - Wave Of Mutilation

Video is The Pretenders - Stop Your Sobbing

Bones

Question: How does someone know that they shouldn’t eat the bone on a chicken drumstick, if they’ve never had a chicken drumstick before?

Answer: They don’t.

If cooking chicken for my daughter, in accordance with my husband’s motto in life - "Always go for the breast" -  I’ll pick healthier, skinless cuts.

But there was this one occasion, running late, frazzled, and faced with a poorly-stocked Co-op shelf, when I grabbed a pack of chicken drumsticks.

Having cooked them, I plonked one down in front of my girl, along with some new potatoes and a mountain of salad, and then proceeded to knock over a glass of orange juice all over the table, chair, floor, radiator and wall. My attention was elsewhere for a good few minutes.

When I looked back, my daughter’s plate was clean, apart from a few splinters of bone.

Five hours later, the A & E doctor finally saw us, felt her throat and belly, and announced that it must have been a reasonably soft bone, and my daughter must have “munched the bejaysus out of it”, because there were no bits stuck anywhere they shouldn’t have been.

Prader-Willi Syndrome means you’re constantly, overwhelmingly hungry. And when someone is controlling your portion sizes, you’re damn well going to eat every last bit.

So she did.

Video is The Bees - Chicken Payback

Video is Elbow - The Bones Of You.