I’m just about to hit the sack after a weekend of Prader-Willi wonder with my tribe.
My tribe is a rare and beautiful thing. A weird and wonderful collection of tots, toddlers, kids, teenagers, and adults with the same rare chromosome disorder.
Also included in the clan are siblings, parents, grandparents, and a bunch of dedicated staff from the PWSA UK (the tribe-wrangling charity that organised the Family Weekend at a strangely-monikered New Forest holiday park). New faces, old friends, all with common jitters and joys.
The event is one my daughter is extremely obsessed with, and can’t bear to miss. Her anxiety - always potentially flammable - was on tinderbox tenterhooks this year, because we’d not been able to book our place until a few weeks ago. (I wasn’t going to dob her in here, but sod it: my mum was terminally ill, and my girl waited nearly an entire day after her nanna died before she could contain herself no longer and blurted out: “Does this mean we can go to Sandy Balls?” It was heart-breaking and kind of funny. This mix is not unusual amongst our tribe).
So this weekend we met up and chatted, played, painted stuff, took a train ride, cuddled dogs, paddled, swam, jacuzzied, walked some alpacas, barbecued, tombola-ed, frisbeed, giggled, cajoled, soothed, whispered, yelled, smiled, held hands, drank, quizzed, and hijacked the dance floor.
These are all things that we can do elsewhere (apart from walking some alpacas, I’d struggle to do that any place else, I’ll give you that).We can go to parties, mix with other families, have a holiday, but what we don’t usually have is our tribe. The people who get it. The people who KNOW. And sometimes that's all you need.
It’s our 22nd wedding anniversary and we’re ensconsed in Sandy Balls. (It’s the name of a holiday park, all right? Yes, I know it’s weird).
Other people go on romantic breaks to Venice, leaving teenage offspring at home. (I will admit this makes me jealous, but only until I think of returning to a house destroyed by drunken rampaging Facebook gatecrashers, then I’m not so bothered).
Other people get dressed up, go to posh restaurants, and swing naked from the chandelier above a king size bed in a swanky hotel.
Other people aren’t us, though. (And, frankly, I’m not sure the light fittings in the caravan would take it).
Instead, we’re here on a family weekend with the PWSA UK (Prader-Willi Syndrome Association UK). With a load of familes who might be ‘other’ peopleelsewhere, but they’re ‘our’ people here. We all share one thing in common: a family member with PWS.
So far, there’s been arts and crafts, quizzes, some sneaky beers (for the parents, obviously), a trip to the beach, and we're just heading back to the holiday park for a healthy barbecue. There's been awkward, funny and loving little social interactions and shy smiles between the kids, who range in age from littl'uns to bigg'uns with fuzzy chins.
My grown-up husband with a fuzzy chin is here with me. Like he has been for the biggest part of my life. (There you go, love, that’s my anniversary present to you: telling you you’re the “biggest part” of my life *sniggers*).
I lucked out. I found him when I was just 17. I was an idiot when I was 17, but somehow, amongst all the things I got wrong, I got him right.
Six years later, in 1995, on a Saturday like this, we got married.
I stood there, feeling a bit of a numpty in a dress (anyone who knows me knows about the dress/numpty correlation). I put my best foot forward (in white, 16-hole DM boots), and walked down the aisle towards him.
We promised some stuff. We danced to cheesy music at the reception. An extremely rude, battery-powered appendage belonging to Pete, the blow-up man from my hen night, reappeared (thanks, girls), was strung round my neck, and had to be quickly stuffed down my cleavage to be hidden from my nanna when she left. (Yes, yes it was a classy wedding).
We had to change bedrooms because my brother and uncle had removed every single item of furniture (including the bed, curtains and poles) and stuffed them in the bathroom.
We had a blast.
Life may not be as carefree as it was then. But we still try and set the blast charges as often as we can. (I’ve just realised, you might be thinking this is a euphemism for sex, but it isn’t, I just mean having fun. Although I might start using it in the rude sense, because it’s making me giggle).
In a complicated world, we’ve got a simple thing going on. He’s who I want, who I need, who I love. Then, still, and always.
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.
I’m just about to hit the sack after a weekend of Prader-Willi wonder with my tribe. 
The event is one my daughter is extremely obsessed with, and can’t bear to miss. Her anxiety - always potentially flammable - was on tinderbox tenterhooks this year, because we’d not been able to book our place until a few weeks ago. (I wasn’t going to dob her in here, but sod it: my mum was terminally ill, and my girl waited nearly an entire day after her nanna died before she could contain herself no longer and blurted out: “Does this mean we can go to Sandy Balls?” It was heart-breaking and kind of funny. This mix is not unusual amongst our tribe).
So this weekend we met up and chatted, played, painted stuff, took a train ride, cuddled dogs, paddled, swam, jacuzzied, walked some alpacas, barbecued, tombola-ed, frisbeed, giggled, cajoled, soothed, whispered, yelled, smiled, held hands, drank, quizzed, and hijacked the dance floor. 
