Tribe

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.

Song is A Tribe Called Quest - Can I Kick It?

Balls

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’ people  elsewhere, 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. 

Happy Anniversary. 

Song is: Sparks - Balls

Away

We’re back home from our first ever Prader-Willi Syndrome Association (UK) Holiday weekend, and we are kernickity-knackered. 

It was a certified hit with our daughter. So much so, she only allowed us to come home today as planned (as opposed to many of the families who were staying on for three nights, not two) after being assured by independent* arbitrators that she was in no way missing out on any activities or get-togethers tonight whatsoever. (*I say ‘independent’, when what I actually mean is people who were willing to tell a white lie when winked at meaningfully by me out of my girl’s sightline).

We got to cuddle some gorgeous PWS babies, brought along by some incredible mums braver than I ever was at that stage of my daughter’s life. I was too frightened and shell-shocked to throw myself into the PWS community that early - with hindsight, it would have done us the world of good. The cuddling gave me the chance to confirm my hypothesis that cradling a soft, beautiful, PWS baby is the most calmingly hypnotic experience you can have, and a surefire way to disappear time.

We played and chatted with some crawlers, shufflers, toddlers, tinkers, teenagers, mums and dads and nans and grandads and careworkers and friends. We coloured, we did some “wake and shake” exercises, we adventure-playgrounded, we wildlife-parked, we healthy-barbecued, we picnicked, we nature-trailed, we talked ourselves hoarse, and we snuck in a few cheeky wines.

My girl gave two fellow teenage PWS girls the One Direction Instant Kudos Quiz: “Do you like them? Who’s your favourite?” Both came up with the compulsory correct answers: “Yes!" and "Harry!”. Eve, aged 13, turned out to be a real kindred spirit who lives only about an hour from us. Sunday walks are being arranged, and a half term sleepover is all but finalised.

My boy fell in man-love with the punk-loving brother of a PWS girl (whose fashion sense he is now desperate to copy). I told him he’s not getting his nose pierced, mainly because he is blinking well only five years old, but I did agree he could spend his saved pocket money on a Sid Vicious replica padlock neck chain like the one his new cool dude friend was wearing. This was a compromise I felt necessary to avoid Anarchy In Our Own Particular Part Of The UK.

Maggie and Erin, from the Prader-Willi Association, worked from morning until night, hosting, catering, introducing, chatting, smiling, and generally being superheroes. My daughter (with a little whispered prompting from me) stood up in front of everyone and thanked them both for all their help, hipp hipping some hoorays, and leading a round of applause.

Now, a few hours later, after a relatively painless journey home, which was only interrupted by a donkey jam on the winding New Forest roads (Eeyore really has no understanding of the Green Cross Code), I still feel like cheering.

My daughter felt part of something, not apart. She was like other people, not unlike them. She made new friends who shared something special with her: their Prader-Willi Syndrome. It doesn’t define them, but it does unite them. Forget Manchester City winning the Premiership - Prader-Willi United is top of the league. And it was this weekend’s away form that won it.

Song is Sham 69 - If The Kids Are United