Monday 27 June 2016

Jump

We did Glastonbury again this year. 

We didn’t have to pay, we didn’t get trenchfoot, we didn’t have all the stuff nicked out of our tents, food and beer was cheap/free and plentiful, and we were right down the front for all the bands we wanted to see.

Yep, we did it at home. With the big screen pulled down, and presenter-free live feeds from the BBC red button/iPlayer beamed onto it.

My seven-year-old boy and his mate were on the door, sporting SECURITY T-shirts and armed with a guest list, a pen, and a sense of officiousness.

The party occured in two waves: an afternoon session and BBQ, with the kids left to go feral as they took part in an epic Nerf Gun War (the neighbours will be picking out foam bullets from their hedges for weeks to come).

Then there was a second evening rave wave.

My girl, who doesn’t like loud noises, loud music, or staying up late, made an amazing decision. Party rules were going to be applied. She didn’t reach for her ear defenders, she didn’t complain once about the volume levels, and she decided she wasn’t going to go to bed early as originally planned. 

“I’d like to stay up until 11,” she announced.

And then, the next thing I knew, Fat Boy Slim ‘dropped some beats’ (as I believe the yoof liked to say about 20 years ago) and me and some creaking middle-aged friends and some remaining bouncy kids did our literal interpretation to the lyrics of Norman’s remix of House Of Pain’s ‘Jump Around’. I say literal, because we did, indeed, ‘jump around’ and after five minutes of that my calves were burning, my heart was thumping, and I was in - if not a house of pain - at least a caravan, or maybe a bungalow of knackeredness.

But it was my girl, my girl, that got my heart really racing. She got up from the sofa and joined her dad in what can only be described as ‘throwing some shapes’. Not since her pogoing to Sheena Is A Punk Rocker, aged 6, have I been quite so surprised by her sudden enthusiasm for a random song.

This made me very happy. You can see that in the photos. (Grinning idiot on the left in the bottom pic, if it’s not obvious).



Video is a mobile phone YouTube video of Fatboy Slim's remix of Jump Around, just to give you some idea of what it was like in my front room. (It was a slightly smaller crowd, obviously).

Wednesday 15 June 2016

Normal

It’s two weeks on from my girl’s return from the hospital following her spinal operation.

Her meds have been reduced to just the odd paracetamol, although whenever anyone tells her that she’s recovering well, she looks a little perturbed, and insists, solemnly, that she is still  “a bit stiff and sore.” (Translation: “Don’t you effing well minimise what’s gone on, and don’t even think about sending me back to school yet”).

She was up and about pretty much as soon as we were home. She’s still using a hard-backed dining table chair with a pillow tucked behind her, rather than sitting on the squidgy sofa, but I think this is now more to do with it feeling like her own personal seat of special importance, rather than a question of comfort.

We’ve been out for coffee, and for a glass of her favourite spicy Big Tom tomato juice in the pub (see pub garden selfie above). 

We’ve watched nearly three series of the BBC’s old teatime drama ‘Merlin’. It’s about Arthur and Camelot and is kind of like Game Of Thrones without the tits and violence. Well, alright, it’s nothing like Game Of Thrones, but it does have a dragon. 

We’ve also visited the book shop and proved that the removal of the titanium rods from her back has made absolutely no difference whatsoever to her inability to BLOODY WELL CHOOSE SOMETHING BEFORE WE BOTH DIE OF OLD AGE.

Today we went to see the practice nurse at our GP’s surgery, who carefully peeled off the waterproof dressings that have been covering her 15 in long scar. The wound looked nice and clean. 

She really could be back at school. But her surgeon told her she would need to recuperate for approximately four weeks following the op. Approximation is an unacceptable construct for my PWS girl. So the four weeks is set, the date is fixed more solidly than any metal rod ever was, and I for one am not going to mess with it.

I was thinking today what were the things my daughter has found the most difficult to deal with over the past few weeks. Was it the pain? The anaesthetic? The scariness of having a big operation? The change in routine? The hospital environment? Nope. There have been two things, two huge things that have really bothered her, and left her in a desolate, weeping state.

The first was a poorly constructed sentence in an Eastenders listing in TV Choice magazine. Yep. (“Mum, it says ‘Ian Beale takes Bobby to the police station to see if he will be charged or not’. But Ian didn’t do it! Why will he be charged? WILL HE GO TO PRISON?”) The solution, eventually, was me taking a biro and changing the listing to read: ‘to see if Bobby will be charged or not’. Believe me, if I’d have thought of this several hours earlier, we would all have been much happier.

The second massive meltdown came today, and involved a malfunction of the BBC app which is designed to allow viewers of the Horrible Histories quiz show Gory Games to play along and answer the questions on their tablet as they watch the show. It glitched, and crashed. And my girl glitched and crashed in turn. 

It all got a bit fraught. But as I’m typing this, in the aftermath of fraughtness, I can look at it objectively, and say that this was a good thing. In my girl’s PWS world, getting randomly fraught over inconsequential things is perfectly, naturally normal. Two weeks on from a major op, I’ll take perfectly, fraughtly, naturally normal.



Song is The Soundcarriers - This Is Normal

Wednesday 1 June 2016

Home

She’s home. 

“Just like my estimate, Mummy,” she told me pointedly, as she walked from the car to our front door. 

She’s got a bag full of paracetamol, ibuprofen, some slightly stronger painkillers, and a selection of sachets and tablets with...er...‘moving’ qualities. (Poowatch Update: she’s been discharged without the Significant Event actually happening yet.  We are ready and waiting for the bomb to drop. I’m whistling the Dambusters theme).

I had a Facebook Memory thing come up the other day. You know, where a blast from the past from a certain number of years ago pops up in your timeline and you can re-share it. (I like to call these pics ‘Inexorable March Of Time Photos Showing You How Fast Your Life Is Flashing Past And How Much Closer You Are To Death’, but yes, let’s go with Facebook Memories). 

It was a picture of my daughter in her hospital bed seven years ago, a few days after surgeons had bolted titanium rods to her spine. Lying next to her is her little brother. 

I looked at her today, when she had a little rest on her bed to recover from the car journey. And had an idea, calling her not so-little-any-more brother over to carefully climb onto her bed, to 're-enact' that original post-operation pic. 

Three things struck me: 

1) She's even braver and more determined than she was then
2) He's no longer off the scale on the chubby cheekometer
3) She did it. She endured. And came out smiling. Again.

Welcome home, sweetheart.


Song is Hannah Peel - You Call This Your Home