Alpacapanic

People are really struggling as they stare into the abyss of the coronavirus pandemic.

They’re worried and frightened about themselves or their loved ones dying, and they’re having to deal with these fears whilst coping with lockdown restrictions.

My daughter has Prader-Willi Syndrome, which means she hates change, gets incredibly obsessional and anxious, and can become completely overwhelmed by her emotions.

So we’ve had some meltdowns. 

Not, as you’d imagine, centered around worries about her own health or the health of her family. Oh no. That would be too logical for a girl whose anxieties put the tangent in tangential. 

Her biggest recent emotional blow-out was about alpacas. 

She sat in the living room, the panic in her voice rising as she called out, frantically: “Mum! Peter faces a struggle to save a baby alpaca that was born in a storm, but Julian is helping deliver an alpaca in a breech position and they’re NOT THE SAME, MUM!” This very specific worry was repeated, three times, each time with more urgency. 

I had questions, of course. Who is Peter, who is Julian, and was there a lockdown in the alpaca community nine months ago*, or is there another reason for what seems to be an alpaca baby boom?” (*having later consulted Google, I underestimated the gestation period by 3 months).

The kerfuffle around camelids* (*I googled the hell out of alpacas, what of it? Did you know they hum, snort, grumble, cluck, and scream? Well now, you do). Where was I? Oh, yes, the kerfuffle around camelids was actually to do with a telly-related mistake. The 30 word listing in my daughter’s well-thumbed TV choice magazine (which she uses to obsessively check the blurb for every episode of her favourite shows, in advance, during and after watching them), didn’t match the listing on the telly’s Virgin Media guide for the latest edition of The Yorkshire Vet. She wanted the new episode with Peter doing gynaecological things with a jumper-donating South American mammal in adverse weather conditions, NOT the one with Julian dealing with a breech birth, because that was a repeat. 

“It should be series 10, Mum. PETER FACES A STRUGGLE TO SAVE A BABY ALPACA...”

I tried to cut her off, but her mental blinkers were locked and loaded, and we had to hear the same conflicted, specific, sentence about differing vets and differing births for the fourth, fifth and sixth times before I seized upon a longer pause for breath, and dived in with a solution.

“Look, don’t worry, it’s obviously a mistake. Either the magazine or the telly have put in the wrong description. All we need to do is record it, and then when you watch it back, you’ll find out if it’s the new one you want to watch. If it’s the old one, you can delete it.”

I smiled at her. She looked at me, nodded calmly, and said; ‘MUM! IT SAYS PETER FACES A STRUGGLE TO SAVE...”  et cetera, et cetera.

I don’t know about Peter, but I faced a bleedin’ struggle. For the following four hours. She really didn’t want Julian to be butting in with the breech. We had tears, exhaustion, repetition, and teary, exhausted, repetitive, reading-out-louds of the listings. She couldn’t forget about it, be distracted, or focus on anything else. And when the programme finally aired, we watched with bated breath and breathed a sigh of relief. A storm was on the way and Peter was the man.

“I can go to bed now,” she announced, perfectly happy and content, switching off the TV, after seeing just the first minute, and checking the red recording light was on. 

She’s still not watched the f***ing programme.

Song is Sam The Sham & The Pharaohs - Wooly Bully 

We've been helped hugely over the years by the PWSA UK (Prader-Willi Syndrome UK) - an amazing charity which does tremendous work supporting people with PWS, their families, and professionals who work with them. Like many charities, the coronavirus lockdown is placing them under unprecendented financial strain - with fundraising events cancelled because of social distancing rules and with no government bailouts for charities, they are facing the very real threat of closure if they don't receive donations. Lots of people are struggling to make ends meet at gthe moment, but if you have anything to spare, even just the price of a coffee, please click on the Donate Now button on the right hand side of their home page, which can be found here . 

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