Matilda

"How perfectly composed this photo is," I thought.
Until I realised the back of the programme makes
it look like they went to see The Lion King.

It’s been a perfect day.

Apart from the start of the train journey, when I took off my daughter’s coat as she sat down, and she flapped her flappy hands a little too flappily, knocking my coffee cup over and sending it flying up in the air. I stretched my arms out to catch the now plummeting coffee missile, showing the reflexes of a cat. A dyspraxic one. I ended up juggling the java, with some of it going up my sleeve, and the rest splashing onto the trousers of the man sitting next to the coffee-bomber.

“I’m so sorry,” I spluttered. 

“It could be worse,” my daughter told him, nodding philosophically. 

We were on our way to London to see Matilda The Musical. Thankfully, there were no more dangerous incidents with hot liquid. We met up with Prader-Willi Syndrome Best Friend Forever (PWSBFF) and her mum (PWSBFFM...no, now that’s getting silly) for a lunchtime salad in a Pret A Manger (tuna nicoise, 174 calories, don’t add the dressing, that’s 231 more). 

She won't be smiling when I tell her she's paying that bloke's dry-cleaning bill.

Next we headed to the theatre, stopping off at Covent Garden on the way to see a woman street performer hang upside down by her feet from some wobbly scaffolding, juggling knives. As you do.

We ensconced ourselves into our spectacularly good seats armed with programmes, diet coke, and low calorie popcorn for the girls, plus ridiculously-expensive-but-bloody-lovely G & Ts for the mums. The tickets had been my daughter’s main Christmas present - secured at half price with a phone call asking for ‘access tickets’ for children with special needs. (WHY did no-one tell me about this before?). 

The show was fantastic. Imaginatively staged, with a brilliant cast, swinging high on composer Tim Minchin’s smart, inventive lyrics and catchy melodies. The gin was pretty good, too.

I alternated watching the stage with looking at my daughter and her pal: wide-eyed at the actors; gasping as Miss Trunchbull swung a girl round by her pigtails (that took some explaining about stage trickery afterwards); and giggling with glee as Mr Wormwood’s hat was superglued to his head.

An aftershow Mexican feast at Wahacas was shared out in suitably small portions for the Prader-Willi pair, with my spice-loving daughter adding the extra hot sauce to the already sizzling platters, and the adults partaking in some major mojito action (can you see a pattern emerging?)

And all too soon it was time to catch the train home, wave goodbye to our girly compadres, and head home to see what havoc had been wreaked by little brother and dad in our absence.

“Mum, that was the best Christmas present ever,” my girl beamed at me as we sat on the train, elbowing me in the ribs every now and again to check whether I was still awake.

I beamed back. We’re looking into Charlie & The Chocolate Factory for her birthday.

When I Grow Up - Matilda The Musical

Even if you're little you can do a lot, you

Mustn't let a little thing like 'little' stop you.

If you sit around and let them get on top, you

Won’t change a thing…

Just because you find that life's not fair, it

Doesn't mean that you just have to grin and bear it.

If you always take it on the chin and wear it, nothing will change.

Just because I find myself in this story,

It doesn't mean that everything is written for me.

If I think the ending is fixed already,

I might as well be saying I think that it's OK,

And that's not right!

Video is Mexican Institute Of Sound - Alocatel. Because songs from musicals always sound and look naff out of context. Actually, a lot of them sound naff in context. I'd rather share something different with you. Yes, it also happens to be naff. What of it?

Hoarse

I can’t speak. In the Venn Diagram of hoarseness, I’m at the intersection of Patty and Selma Bouvier from The Simpsons and Richard Harrow from Boardwalk Empire. This makes me a yellow, chain-smoking cartoon character, or a facially disfigured assassin, either of which is apt enough, seeing as a nasty cough culminated - with perfect timing - in me losing my voice just in time for the half term holiday. Whilst trying to get the kids to do as they’re told, I’ve had no choice but to resort to threatening mimes, which have had little effect except as amusement generators for my cruel offspring.

But I don’t care. Yesterday, my husband and I were let off the leash by his brother and sister-in-law, who drove 160 miles down from oop north to take over our caring responsibilites for a day and a night.

This allowed us to drive down to Brighton to check in to a posh hotel, go record shopping, eat tapas, drink fruity beverages, and see one of our favourite bands, The Decemberists, play live at the Brighton Dome. 

It was a perfect day and night. Perhaps not for the person next to me at the gig who had to put up with occasional squawks as I couldn’t resist ‘singing’ along, but sod it, I don’t get out much. The Decemberists did The Mariner’s Revenge Song for an encore, an insane nine-minute opus about a young lad growing up to hunt down the cad who caused his mother’s death, eventually murdering him in the belly of a whale. The band tied eachother up in flourescent gaffer tape as they did so (changing the words from “chewed” to “gaffed” alive); the crowd screamed (or rasped in my case) at the correct ‘being swallowed whole by a giant marine mammal’ moments; and I just could not stop smiling.

The evening was rounded off (and trust me, we are pretty round), with me literally whispering sweet nothings in my husband’s ear in our hotel bed. I do mean literally. They could have been the most tender endearments or the filthiest filth, because no sound was audible - I told you, I’ve lost my voice. Between you and me, however, I'll admit that in the Venn Diagram of tender endearments and filthy filth, I was firmly in the circle of filth. 

Video is The Decemberists - Make You Better

Unexpected

My daughter was sitting in the other room, sharing out some freshly printed ‘change cards’ with her Prader-Willi Best Friend Forever (PWSBFF), who’d spent the night.

The sleepover had gone really well, and the two teenagers, who have peas-in-a-pod personalities (due in no small part to their having the same tiny missing piece of chromosome), were happy and content, having directed me via Google to search out and print off Topsy & Tim and Matilda The Musical images suitable for the pictorial content of their new cards.

A quick explanation: change cards are little cards you make and keep on your person, ready to present to your child when there is an unexpected change (something which people with PWS have a particular aversion to, and which can cause serious meltdowns). The idea is to have previously made a deal with them promising them a reward of some sort once they get a certain number of cards, so the positive makes a negative situation less negative, if you get my drift.* (*See the earlier blog post Change if this makes no sense to you. Although I’m not promising reading that is any less confusing).

The system works ok - as long as from the start you make it clear that they can’t plague you for cards, and that they only get the cards for proper, big-scale unexpected changes, like parties being cancelled, cars breaking down, or any some such serious shit.

Occasionally, my daughter does try it on, though.

PWSBFF ran back into the room and up to me as I sat cutting out a second sheet of cards.

“She says she needs a card!”
“What for?”
“Well, she says the lady who is Topsy and Tim’s mum is in Eastenders too, and she just died in that, so that’s a really big unexpected change.”

Nice try girls, nice try.

Song is Allen Toussaint - Am I Expecting Too Much?

Punt

I’ve finally finished my mum-in-law’s 30-page, 50-section Attendance Allowance form today. After completing my dad’s one last week. After spending a silly amount of hours compiling our submissions for my daughter’s Education, Health & Care Plan. Which came hot on the heels of her Over-16s Disability Living Allowance form. In between all this I’ve had two hospital visits and one social worker visit for my girl, ten hospital/doctor/social worker/solicitor/physio visits for mum-in-law, piles of freelance work, and the builders in doing my bathroom.

I am now going to bung the kids in bed, crack open a beer, and watch the rugby. If anyone tries to stop me, I will punt them high enough to clear the Millennium Stadium and splash down in Cardiff Bay.

Song is Arctic Monkeys - Chun Li's Spinning Bird Kick

LOTWOP

Ugh.

I don’t lay awake at night worrying if my son is going to become a crack addict, a burglar, or a Scientologist. Or how, when he’s 18, he’s going to shave off all his hair, tattoo his face with a Swastika, and join a motorcycle gang in Iceland. I don’t spend every waking hour terrified that he’s going to get leukaemia. Or be in a car crash. Or decide to change his name by deed poll to Neverendinglovefor Cliff Richard. Junior.

I don’t do these things, because that would just be weird. So why is it that for the first terrifying part of my daughter’s life, I couldn’t stop imagining the worst possible future for her?

When doctors told me my poorly baby girl had Prader-Willi Syndrome, all I could see were the problems. All I could think about were the challenges. All I could focus on was a terrible life where she was dangerously obese, tortured with hunger, friendless, unhappy, ill, and hurting.

And let’s not pretend that self-interest wasn’t part of that worry. Bound up tightly with my terrors about how PWS would affect her were fears of how it would impact on me, my family, our lives, our world. 

It was a natural human reaction. Of course there were genuine, hands-on, in-the-moment issues to worry about: the practicalities of feeding a floppy, weak baby; the hard work involved in helping her build up the strength to walk; the need - when the hunger kicked in - to distract and plan and cajole and be furtive. (Yep, we furted). There was - and always will be - plenty to contend with in the Now. So why couldn’t I stop loading up on the Later? I should have just dealt with what we had to deal with at the time, and only as far in the immediate future as was necessary. I shouldn’t have tied myself up in knots about nightmare scenarios in the distance. I was myopic about a distopian future that I was ridiculously sure was inevitable. I had tunnel vision about the path our lives would take, leading straight ahead and only straight ahead, to LOTWOP, the Land Of The Worst Outcome Possible.

And then I stopped. I don’t remember exactly when, but I took a little meander off the path and forgot about where I was convinced it was leading. And when I decided to do that, something amazing happened: I started properly enjoying my daughter. I started to focus on being with her, having fun with her, being amazed by her, being frustrated by her, laughing with her, and loving her.   

I was freed by the realisation that I can’t predict the future. (If I could, I would have bought shares in Apple in 1977, although that would have been difficult, seeing as I was only 6 years old. No-one has that power. Not even Yuri Geller, the spoon-bending numpty).

I suppose, what I’m trying to say, in my straying from the path kind of way, is that you might want to try it, too. Switch off the sat nav, have a potter about, and you’ll end up where you end up, but the difference is you’ll have more fun on the way.

My weak little baby girl is now 16 years old. Things aren’t perfect, and we don’t live in Cloud Cuckoo Land. Every now and again we hit that hard and narrow path, and the LOTWOP sign is still there, but there are a few others, too, pointing to other possible destinations. Parents of children with rare disabilities should know this more than most: anything can happen. And the anythings of life can be terrible or wonderful. We’ve had anythings of happiness that have given knockout punches to the anythings of despair, so stuff you, mapped out future nightmare world, stuff you.

Song is Idlewild - In Competition For The Worst Time

This post first appeared in the January edition of PWS News, the newsletter of the Prader-Willi Syndrome Association UK. They have a very informative website here.