Aliked

Is it wrong to...well... stalk someone else’s five year old boy just so he has more opportunities to cuddle me, give me a kiss on the cheek, and tell me he loves me with ‘all his heart’?

Am I wasting my time by seriously considering inventing an Anti-Fit hack to my Fitbit watch, and introducing a ‘Pro’ setting (standing for ‘Prosecco Consumption?)

Am I a bad person for wanting to refer to our lovely, but amusingly-monikered New Forest Holiday Park not by its actual name (Sandy Balls) but by my own, less polite version (‘Itchy Bollocks’)?

Was it my own silly fault that when taking a woolly gang of alpacas for a walk around the caravan park (yes, you heard right) I fell over a bin as I backed up trying to get a shot of them in The Beatles’ Abbey Road record cover formation?

Are alpacas even allowed to use a zebra crossing?

These questions are all burning ones. But the most flammable query on my mind today after returning from a weekend away in the company of a special tribe of special kids, special young people, and their special families, is this: Could we have had more fun?

It was our second Prader-Willi Syndrome Association UK family weekend. And the stress of the car journey (“Are we nearly there yet? It’s taking a BILLION years!”) melted away as we drove through the trees to our miniature home on wheels.

A quick warm-up and scoff of the ‘here’s one I made earlier’ meatballs and spaghetti tea,  and it was off to the Activities Room to meet the others. There were babies, toddlers, teenagers, adults, little ones that had grown since the last time we saw them, new faces, mums and dads and sisters and aunts and nans and grandads, and we had Maggie, Karen and Sharon from the PWSA UK, working hard to make us welcome and entertain the troops.

Events were spread over the two days for people to pick and choose and pop along to if they wished - and it seemed like everyone came to nearly everything. Walking the alpacas, with their 80s footballers’ perms, was the most surreal activity. Visiting a country park featured our most chaotic moment (when my daughter decided at the last minute to back out of the steam train ride, thus sparking a low level anxious rash of wavering PWS passenger refusals and readmissions). Making masks and decorating clay pumpkin lanterns provided the most data on how much felt tip my son could cover his face in. Likewise, the soft play area proved it is the most reliable way of making a small child sweat like a bastard. Swimming made my goggles mist up as I took in the sight of our motley crew of amazing children, paddling and splashing - some needing enough flotation devices to sail to America on, and others swimming freely.

A group of us met up for dinner in the restaurant, and my girl sat opposite a young man with PWS who tried to outdo her on the spice front in a Scotch Bonnet v Jalopeno Chilli Pepper face-off. (Neither even broke into a sweat).

Handsome little Clive politely gave out world class hugs (hence my aforementioned stalking). Beautiful little Polly told me solemnly how she had been “so looking forward” to holding my girls hand, promptly did so, and didn’t really let go. (I had to keep reminding my daughter that she was attached to a small person when she approached a gate or a door).

Our family won the quiz, principally because I brazenly cheated and asked friends on social media to identify a cartoon character that no-one could get. “Check the back of the paper for rules, and if there aren’t any, we can Google!” I told my daughter, imparting a valuable life lesson. ‘Sindbad’ (no, me neither) earned me a bottle of plonk, which my daughter strickenly dismissed as ‘a Mum prize’, so Maggie stepped in and gave her a doodle book, and all was well. 

Thank you, to the PWSA UK team for organising and running the weekend. Thank you to everyone who came and put a constant smile on my face (you see, no, it was not entirely down to hitting my Pro-secco targets with aplomb). 

Thank you for making my daughter happy. In life she is often different. Here she was alike. And she aliked it a lot.

Video is The Beatles - Abbey Road medley

Date

He asked her at school.

She told me about it when she got home.

"Kevin says he wants to go on a date with me."

I put my poker face on. Which was hard, because I very nearly burst into tears. Good tears. 

"What did you say?"

"I said yes, but I'd have to ask my mum."

I was struck by a sudden thought.

"Do you know what a date is?"

"Er, no."

I explained.

"Well, if someone likes another person, they go on a date. It just means going somewhere nice together, like the cinema, or to a restaurant."

"Oh."

"So that means Kevin must like you. Do you like him?" I already knew the answer to this: she's had a soft spot for him for a while.

"Yes."

"I'll call his mum and we'll sort it out."

She beamed. I beamed. It was very beamworthy.

It's two days later. They've swapped mobile phone numbers (my girl got her first phone for her birthday last week). He calls her from his taxi that takes him to the special school class they both go to. They have faltering, repetitive conversations. He texted her and called her 'Sweetie'. He asked if she wanted to be his girlfriend and, if so, why? She texted back: "Because nice."

I'm happy that she seems quite happy about all this. 

Why?

Because nice.

Seventeen

My girl is 17 years old today. I knew this in advance, of course, but it still feels astonishing.

She’s ensconsed on the sofa watching Charlotte’s Web with her two sleepover friends. PWS BFF (Prader-Willi Syndrome Best Friend Forever) hasn’t seen it before, but she has just announced that “I know the spider dies”. ASC BB (After School Club Best Buddy) has yet to reveal any other spoilers.

We’ve already given my girl’s new Taylor Swift LP a spin on the turntable. The vinyl version of 1989 was top of her birthday list, thanks to a recent sudden fascination with our own record collection. I’m quite happy with her choice; it’s a hell of an improvement from last year’s musical favourites, One Direction. 

Other presents include a Thomas The Tank Engine Story Collection and a mobile phone, which kind of says everything about the idiosyncracies of our amazing, anomalous daughter.

The two PWS girls have been in food heaven, with some carefully managed treats: they demolished some healthy chicken tikka in the curry hut last night (whilst my son overdosed on not-so-healthy mango chutney). We took over the restaurant: there were 14 of us, including my mum and dad, and a couple of LOTIWTSW (Lovable Old Trouts I Went To School With), their other halfs and offspring. No-sugar ginger beer was drunk, candles on the cake were blown out, and slices of spongy Minion Dave cake were substituted with Weightwatchers caramel cake bars.

The girls conked out on their airbeds in my daughter’s room at around 10.30pm last night. My boy, filled to the brim with poppadoms, didn’t even attempt to bother them. Impeccable behaviour at home from him is so unusual that I can confirm we saw flying pigs in the night sky, soaring above a hell that had, indeed, frozen over.

It was a perfect evening, apart from England crashing out of the Rugby World Cup. Mind you, perversely, even that sporting disaster made us smile: the kids had taken over the telly for an after-curry film showing, so us adults were huddled around my computer watching the game. After the second Australia try, my husband stomped off to join the girls in the other room with the immortal words: “Bugger this! I’ve had enough. I’m going to watch Cinderella!”

Song is The Beattle-Ettes - Only Seventeen

Fiesta

I don't always talk about Prader-Willi Syndrome on this blog. Sometimes I like to take a side-step. Here's the best side-step I ever took:

The year is 1989. I was 17, and on one of my first dates with a new chap I was a bit smitten with. When I’d mentioned to him in passing that I wished I’d have known The Pogues were headlining The Reading Festival, he’d declared that it wasn’t too late to go, and had avowed to “get us in by hook or by crook.” Which he did, by ‘renting’ hooky wristbands for a fiver from a crook at the gate. This impressed me no end.

I remember walking through the gate, being hit by the smell of leather jackets and stale sweat, trying to contain my excitement at a) our being smuggled in ‘illegally’ and b) the prospect of spending a music-filled day with a bloke who was not only funny and good-looking, but who seemed to be showing signs of being a bit smitten with me, too. (This was a revelation, I can assure you).

The Pogues were due on. I made the inexplicable decision at that very moment to buy a copy of If I Should Fall From Grace With God from a stall. An LP, not a CD. And I repeat, the Pogues were due on. As we made our way forwards to the general mosh area, I clutched the album (encased in a white carrier bag) to my chest and uttered, defeatedly: “Oh, bugger.” Chalking it down to experience, I stuffed it down the front of my denim jacket, wistfully realising this was probably the last I’d ever see of it, and joined in the roar as Shane and the boys shambled onto the stage. I then jumped around for the next hour and a half. It was absolute, marvellous mayhem.

When the band finished the set, the crowd spat us out, hot, happy, and hoarse. We stood there, battered, grinning, hair damp with sweat, clutching eachother’s hands. He kissed me. I didn’t know where I was anymore, but it was somewhere good.

I recovered myself and remembered my ‘new’ album. Laughing, I fished inside my jacket and pulled out the carrier bag. It looked unexpectedly uncrumpled. I stuck my hand inside and fished out the LP, and we both looked startled. The corners were square, the white of the cover was still white, there were no squashed bits, dents, folds, dirt, or damp. If I could have successfully done an impression of heavenly choirs of angels singing I would have. It was pristine.

I’ve still got it. It’s still in very good nick. Better nick than this lady of easy leisure and her rambling boy of pleasure, if I’m brutally honest, but that’s just the result of too much kalamari and macaroni. The miraculously surviving LP might well get a spin tonight on the occasion of our 20th wedding anniversary. Anyone know a Leonardo who plays accordione?

Video is The Pogues - Fiesta

Snakes

We drove back from the hospital. A theatre emergency had called my daughter’s consultant out of his clinic, which meant that an appointment and X-ray that should have taken around one hour ended up taking four. But we were on our way home.

My girl chatted away, asking her usual litany of questions, which I did my best to answer, although my mind was racing. I’d just been told something unexpected and frightening. She’s got to have another operation.

It was there again: that low-level panic I remember from before. It sat in my stomach like a sleeping snake, ready at any moment to unfurl and slide up and squeeze me by the throat. 

She, on the other hand, was happy. “Dr Gavin said that if ever there was anything wrong later my metal rods might have to come out of my back, didn’t he?” she reminded me, recalling, pretty much word for word, a conversation she’d had seven years ago.

“You’re right,” I answered, keeping my voice neutral and calm. Putting my game face on.

When my daughter was 10, she had a spinal fusion. Titanium rods were bolted into her back to help straighten, anchor, and fuse her spine, which had been bent by scoliosis into the shape of a C. We spent an unbearable, unthinkable day in a hospital room waiting to hear if her if her operation was a success. The risks were terrifying: fractions of millimetres were involved, and if something went wrong, paralysis was a possibility. But the surgeon came out of theatre, sweaty and exhausted, and smiled, and the relief, the relief, the relief.

So now we face a repeat. Like a one-off Christmas special after that Bafta-winning drama of seven years ago. The metalwork needs removing. She’s been having pain for about a year, very occasionally at first, more frequently in recent months. The high pain threshold from her Prader-Willi Syndrome means that if my daughter says something hurts, the chances are anyone else would be in agony - so we got it checked out. And after months of infuriating delays and clinic cancellations yesterday we finally got our answer. Her CT scan results revealed the bolts at the top of her spine are pressing on nerves, which is causing the pain across her shoulders. They need to come out.

“Will my back be bendy again?” my girl asked. She was wide-eyed, not with snake belly panic like me, but with excitement, partly because she’d just watched a Topsy & Tim episode where Topsy had her appendix out, but mainly because she kind of likes hospitals.

“No,” her specialist explained. “The spine fuses after the operation, so it’s already set. The bone is straight and the metal isn’t actually doing anything now, so no, your back won’t be bendy if we take it out.”

She nodded, satisfied. “Will I get lots of presents when I'm in hospital?” The girl can prioritise, I’ll give her that.

It’s a two hour op, not a seven hour one like when the rods were inserted. The waiting list is about three months (although I’ll believe that when I see it). She’ll have to have six weeks off school.

I’ve calmed down a bit. We can do this. When I say ‘we’, it’s me and her dad I’m trying to give a pep talk to, because I already know she can do it. We deal with things the best we can in her determined, amazing wake.

I’m letting sleeping snakes like, for now.

Song is Etta James - Crawlin' King Snake

Landing

This is the smiling face of my sixth-former after her first day back at school.

It was an unexpected relief after the anxious holiday build-up.

She’d been fretting and worrying about changes. About being in a different year, having a new classroom, a new teacher, new classmates, a new timetable, and new non-uniform rules to contend with.

I’d reassured her by pointing out that everything wasn’t actually completely ‘new', as she’d spent the last half term before the holidays joining the sixth-form special school satellite class for taster days every Friday. (And anyway, half of the class were in her class last year, or go to her Sports Zone club with her, so she knows them well). 

I say ‘reassured’, but what I actually did was wade after my daughter as she hopped from one stepping stone of worry to another.

This anxiety-hopping is actually quite a skill; just when you think you’ve steadied one landing spot, she’ll spring onto the next. Only one thing is guaranteed: the line of stones is never straight.

So we had a few slips, wobbles and splashes in the days and nights leading up to the start of term. 

But we made it across to the other side. She took the final leap, and...

“We’ve got a sixth form planner, Mum, and we have to write everything in it now because we’re more grown up and independent, Mum, and look, I’ve written in a teacher training day, and the presentation evening, and there’s my name and address in the front and this is a list of what we did today, and parents have to write something in if you need to tell the teacher because this is the way to communicate, and we’re still going to the farm but on a Thursday, and swimming is on a Friday, and we’re going to college on Wednesdays, and there’s a letter for you, and look, I’ve put down what we did today, and look, the teacher said that she was pleased to welcome me to the group and look, she wrote I was a star, Mum, a star.”

...she had a good landing.

Video is Paul Revere & The Raiders - (I'm Not Your) Stepping Stone

Passengers

We haven’t managed many what I’d call ‘proper trips out’ this summer holiday. Apart from a holiday club visit to Wicksteed Park *grits teeth* where I was in charge of my anxious PWS teenager, my Zebedee-like six year old boy, and two of his over-excited school buddies. (Severe Post Traumatic Trip Disorder prevents me from saying any more about The Outing That Dare Not Speak Its Name without falling to the floor in a sobbing heap).

Today, however, we went on a visit to the Nene Valley Railway. As always with a PWS person in the family, there were a couple of issues. My daughter had been pre-warned that the Thomas The Tank Engine train is currently out of action for repairs/refurbishment. But it wasn’t until we checked the website just before we set off that I realised the passenger engine in service today was a diesel, not a steam engine.

This was enough to set the mercury rising on my girl’s anxiousometer, but a quick negotiation - emphasising that we’d return when Thomas was out of train hospital so we’d get to go to Nene Valley twice - was enough to calm things down.

And, discounting the odd panic over cameo appearances by bin wasps, and worries that the train would be too noisy (it wasn’t - the emergency earplugs packed in my magic handbag were not required), we just about managed Happy Family Fun, marred only by a tantrum in the car on the journey home from a certain small boy who needs to learn how to lose Top Trumps gracefully.

The train was impressive (I think it was a Class 14, if that means anything to locomotive nerds out there). We seated ourselves on springy bench seats in a private Hogwarts Express-style carriage off the main corridor, spread out our picnic on the dining table, and supplemented it with no sugar Fruit Jets for the children and a pint of Nene Valley Railway Ale for the adults.

We've got some nice photos. The kids have got stamped souvenir tickets. And they might even remember our day next week when they go back to school and have to write down what they did in the holidays. 

Yes, next week. All of you parents out there who’ve been gleefully updating your social media accounts with details of your kids going back already can do one. In this neck of the woods we’re in the seventh week, people. The seventh long, long, week. It’s lovely to spend time with your children. But not that much, FFS.

Song is The Prodigy - Diesel Power