Day Seventeen

I don’t know about you, but I could really do with a pint. 

My phone served up a random memory from my photo feed today - the lovely sight of my girl manning the pumps behind the Rovers Return. Although I would have preferred it if it had actually served up a pint, instead of a pic. When is technology going to match my expectations? Yes, we’ve got the internet, but why can’t I materialise a Mojito in my hand? Is it too much to ask? And while I’m at it, where the hell are our jetpacks? I blame Elon Musk. I don’t know why; maybe it’s because he looks like a waxwork dummy of Rick Astley that’s been left next to a hot radiator since 1987, but I blame Elon Musk.

My hostelry-yearning has been sparked by lockdown life and my daughter plaguing me about going to the pub. 

“When will the pubs  open Mum? When can we go?”

If social services overheard the number of times she’s asked this in the past few days, I’d be put on both a reckless mother list and a 12 Step programme. 

Perseveration, it’s called. People with Prader-Willi Syndrome often perseverate. It’s when an idea, a word, a phrase, or a question gets stuck in their mind, and recurs, even when the stimulus is no longer there. My girl just can’t shift gears sometimes, and repeats and repeats and repeats herself. Answering the question doesn’t help, even if you’ve got a nice black or white response. She’ll still repeat her query, over and over - and when the answer is ‘I don’t know’, then we’re in for Perseveration, The Director’s Cut.

“So when will the pubs open, Mum? When can we go?”

I probably should explain: her desire is actually for a specific family tradition - various members heading to the pub on a Saturday morning to have a coffee with Grandad. My uncle and aunt are regulars. Different combinations of nieces and nephews of mine intermittently attend. And my daughter is a stalwart of the pub troop. The coffee is often followed by a Guinness for Grandad and half a cider for my girl, possibly not unconnected with the fact that the Saturday Club has also been witness to some extremely ‘interesting’ pronouncements, declared by my daughter at high volume in no filter mode (telling her cousin she needed to visit a sperm bank, being one of the most memorable).

“So when will the pubs open, Mum? When can we go?”

I don’t know, sweetheart. 

The pub club is on hold, like so many things are at the moment. thanks to the insidious Covidious coronavirus. 

Like Covid-19 her perseveration is catching. She keeps reminding me of what I’m really missing: the warmth, the company, the hugs, the laughs, and the simple loving heart of these visits.

Plus the beer.

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Related blog posts: Corrie, Baster

Song is Amos Milburn - One Scotch, One Bourbon, One Beer

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. And while you're at it, write to Elon Musk, would you, and get him to knock the space travel on the head and invent a beer materialiser, please. 

Day Sixteen

I’ve been thinking about adjectives today. 

Not all day, that would be weird. 

If you want to know, my other thoughts have included: ‘The modern day definition of a Sisyphean task is trying to get a refund out of yer Ryanair bollix Michael O’Leary’; ‘Although I have finally got hold the Holy Grail of self-raising flour, I’ve forgotten how to bake a cake’; and ‘I must, at some point, clear up the dog sick in the garden’.

Right, so, back to the aforementioned adjectives - this morning I had to help my daughter identify them in some sentences as part of the English work set by her college. She also had to think of some adjectives of her own - one beginning with every letter of the alphabet. A dictionary was permitted, which was a godsend when it came to X and Z. (Xenophobic and Zesty, if you’re interested).

She was hesitant at first, and needed a few prompts and prods from me to really think about which words were the ones describing something. She worked her way through the exercise, gaining in confidence. You might say she applied herself to the task determinedly, stubbornly, resolutely, unshakably, and bigly (no, damn you Donald Trump,  you tangerine succubus, bigly is not a word).

I realised something. In doing these daily blogs for the 2.6 Challenge, and trying to raise awareness about Prader-Willi Syndrome, it’s so easy to fall into the trap of using negative adjectives. The condition comes with a mass of challenges, and sugar-coating them doesn’t help anyone. (With PWS sugar-free not sugar-coated is definitely the way to go).

But sometimes you have to take a step back and celebrate the positives. Because there’s a plethora of positive adjectives that can apply to my daughter, despite of, because of, in addition to, and in conjunction with her syndrome.

Joyful, bright, happy, endearing, loving, funny, quirky, distinctive, delightful, engaging, beautiful, courageous, cheeky, loyal, astonishing.

Magnificent.

Yeah, that’s her adjective, right there.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is The White Stripes - Sugar Never Tasted So Good

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. They are more than a little responible for producing some of the positive adjectives mentioned above. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. Oh, and Hippopotomonstrosesquippedaliophobia, that word I told you about in yesterday's blog? It's the name for the fear of long words. 

Day Fifteen

I’ve not caught the clap.

There you go, I’ve admitted it. During the coronavirus pandemic, people across the UK have been standing on their doorsteps every Thursday night, clapping to recognise the efforts of NHS workers and carers.

I, however, haven’t, because I hate nurses.

Not really. Jesus, learn to take a joke, would you?

Look, it's not a competition. Just because you clap doesn't mean you love the NHS more than me. Just because I have a child with Prader-Willi Syndrome doesn't necessarily mean I love the NHS more than you. (But I probably do. Deal with it). I expressed my love for the NHS as best as I could in a blog post marking its 70th anniversary: There. Give There it a quick read if you think I’m being an old cynic here.

But there’s just something about the whole clapping - a nice idea for a one-off show of appreciation - that now feels like a empty gesture. Does an exhausted consultant, coming off a 12 hour shift, really feel better because Bob and Brenda from No. 22 banged a saucepan on Thursday night? I’m not sure that they do. Particularly if Bob and Brenda then invited Trevor and Sue and the kids round for a VE Day barbie because if there’s one thing that renders a ribonucleic acid-based virus non-contagious, it’s a bank holiday.

I love the NHS and I know and love people who work in the NHS. They don’t want to be thought of as angels or heroes - they just want the resources to do their job, save lives, and care for people safely. 

So I just can’t bring myself to clap along with Boris, our glorious ‘led by the science’ leader who seems to have achieved hero status for contracting and surviving the virus, despite boasting at a press conference about shaking hands with everyone, including hospital patients, but who still insists that government messaging throughout this crisis been clear, consistent and responsible. 

If clapping brings you comfort and hope, and you think it helps  - even if it’s only good for your own mental health, or if the kids find it fun - please carry on. Maybe I'm a miserable old cow, out of step with the rest of you. Maybe I deserve your opprobrium* (*for my opinions, not for my vocabulary - I'm smashing my 'learn a new word a day during lockdown' challenge! Tommorow, I'll tell you what Hippopotomonstrosesquippedaliophobia means).

For now though, and for the foreseeable future, eight o’clock on a Thursday - when others are applauding and pan-bashing - will just happen to be the time I choose to chuck my empty booze bottles into the recycling bin. 

Because if no-one can hear the chink of empties then it means I’m not an alcoholic, right?

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is The Meters - Handclapping Song

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. And if you've already given, but are annoyed by what I've written today, I'm sorry, no refunds. Do come back, though. Remember: Hippopotomonstrosesquippedaliophobia, you know you want to know.

Day Fourteen

Today I want to talk about incomplete sexual development. No it’s not the answer to ‘Why do men buy sports cars?’ or ‘What could he possibly be over-compensating for by holding a large snake in his Tinder profile?’

No, I want to talk about it being one of the characteristics of Prader-Willi Syndrome. Sexual development in PWS is affected by the diminished or disrupted production of sex hormones. It’s called hypogonadism (the failure of the gonads to function properly - specifically the testes in men and ovaries in women). 

Firstly, I challenge you to say gonads without sniggering. Secondly, if you’re female - did you have ANY idea you have gonads? You live and learn, don’t you, Gonad Girl! *sniggers*.

So what does it effectively mean for someone with PWS? 

Boys typically need an op for undescended testes, and both boys and girls usually have delayed and/or incomplete puberty. Confusingly, they often go through premature pubarche (development of pubic hair) earlier than the average, caused by something called adrenarche (these words, man, so many words), which isn’t actual puberty (just the stuff like hairy bits, oily skin etc. Hairy bits isn’t one of those official medical terms, in case you were wondering). So that’s helpful, when you’ve tried to explain carefully to your child that they might not go through all of the same changes as their peers so, apart from that one that they already have gone through but isn’t actually what it looks like. Clear? Good, I’m glad someone is.

Testosterone treatment for boys and oestrogen therapy for girls can be used to bring on puberty (either to induce it, or to kickstart and maintain it when it stalls). 

For my daughter it involves taking an oestrogen pill, which finally brought on her periods at the grand age of 20. This is been an...interesting...development to deal with, not least because of the fact that her periods, although quite regular don’t start EXACTLY 28 days apart. And she does like to know EXACTLY when things will happen.

One thing that is extremely unlikely to happen, however, is related to fertility. My girl will be unable to have children. I could explain more, but I’d have to use more of those medical words, and to be honest, I peaked with gonads. 

There have only been a handful of women with PWS in the entire world who have had a baby. It’s something we’ve been honest about with her since she was old enough to understand. She’s pretty matter-of-fact about it. 

“I can’t have babies, can I, Mum?”

“No, sweetheart.” 

“But I am coping very well with my periods, really, very well.”

“You definitely are, yes."

So, many years from now, it’ll be down to her brother to ensure our family line lives on, God help us. Is it wrong to make a mental note of suggesting Gonad as a name for our first grandchild? It is, isn’t it?

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is Arrested Development - People Everyday

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. And keep coming back and reading. I mean, where else are you going to find out you've got gonads you never knew you had?

Day Thirteen

I’ve seen lots of jokes and memes on social media during the coronavirus lockdown about how people have no idea what day it is. I disagree. If you’re attempting to home-school, you know how far from the weekend you are, exactly.

So today is definitely a Friday, but not just any old Friday. It’s Bank Holiday Friday switcherooed for Bank Holiday Monday due to the 75th anniversary of VE Day, and I am mainly celebrating it for being a ‘no school’ day in a time of no school. No school squared, if you like.

I attempted a bit of mild parental responsibility this morning by chatting to my kids about what VE day meant. We cut out some paper to make bunting and got covered in oil pastels. I made a tiny bit of a ‘jingoistic isolationism leads to very bad things’ point by making sure we included not only Union Jacks but also flags from some of the other nations who had just a little bit to do with defeating the Nazis - you know, the ALLIES.

But my daughter wasn't entirely focused. She binned five pennants after colouring white bits blue and blue bits red, all because she has been concentrating on one thing, which was most assuredly not celebrating the anniversary of the end of the deadliest conflict in human history. No, it was watching a TV programme.

She has waited two years and four months for the third series of BBC drama The A Word to be made and aired, checking the TV guide every week to make sure she knew when it finally dropped. “When will Series 3 of The A Word be on?” is a question that might haunt me on my deathbed, alongside: “Will sleeping on my back make me shorter?”. On Tuesday it hit the screen, and she watched it on catch-up the next day (as it aired past her bedtime). 

Today, she’s been plaguing me and her dad to watch it with her. 

“Yes, we will watch it with you,” I explained. “But I’ve got to get Grandad’s medicine/cook the barbecue/write my blog/have a poo* first...” (*these activities were carried out consecutively, not concurrently, you’ll be pleased to know). 

So I’m off now, to curl up on the sofa and watch a drama about the family of a little boy with autism. “Like me, Mum, I’ve got a diagnosis of autism too, haven’t I, and people with Prader-Willi have a bit of autism don’t they?” my girl will tell me, numerous times throughout the show. Trust me, she won't be able to help herself. I might put the subtitles on so I have a chance of getting some of the dialogue.

Once she’s in bed, it’s my boy’s turn to choose the viewing, and tonight will be the sixth movie in his grand rewatch of the Marvel Cinematic Universe in chronological order of the narrative. So it’s Thor. Which just makes me look forward to that time in the future when cinemas will open their doors again and I can march up to the desk and request: “Four for Thor 4”. What a time to be alive!

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is Julian Cope - Trampoline (from the soundtrack of The A Word).

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. Think of all that money you're currently saving not going to the cinema. You'll still have enough left for four for Thor Four, honest.

Day Twelve

There are some things humans yearn for. You know: eternal youth, comfy pants, world peace, a self-replenishing wine glass. That sort of thing.

What I find myself wishing for most often, apart from the wine glass thingy, is a little bit of calm.

Anxiety looms large in our household. Chief Loomer is my daughter. Anxiety is a huge issue with many children and adults who have Prader-Willi Syndrome, and my girl can sometimes be a little fizzing firework of anxiousness.

It’s fuelled by the PWS physical hunger and obsession with food and the inability to deal with emotions. It’s sparked by changes to routine and random - innoculous, and sometimes...um...nocculous, triggers. 

Patience is needed. You have to learn when to let the anxiety run its course, when to intervene, when to ignore and how to distract. I always do the right thing and never lose my shit, obviously. Well, I say never, but I would like you to see something my daughter wrote on the poster she filled out after a morning of persistent, repetitive, anxious avalanches. On it, she had to describe what she could see hear, touch and smell in her immediate surroundings.

First on the list of sounds was...shouting. Yes, on the family Mindfulness exercise, designed to instigate calm and restore equilibrium, the thing she listed hearing most was me, shouting.

The smells she listed in the next section included wet dog and bonfire smoke (incidentally, if it been last week she could have actually put down barbecued dog hair, as the dog managed to wedge himself under the barbecue for long enough to set himself ever so slightly on fire), but she missed the strongest aroma. The stench of guilt coming from me.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is The Housemartins - Anxious

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. You can be motivated by altruism or even guilt, I don't mind.

Day Eleven

Technology brings me several joys (including the obvious, like Netflix, Spotify, and reading my Kindle in the bath. Although, in case you're wondering, no, unlike a real book, an overnight straddling of a radiator will not revive a dipped Kindle. But it will burn your thighs *thank you, I'm here all week*).

I could happily binge all day on my daughter's texts and emails, for example. A particular favourite during the lockdown has been discovering that she emailed the local library to ask if she can join the annual summer reading scheme. Upon closer inspection - and discounting the fact that libraries are currently closed due to the Covid-19 crisis - it seems she's actually messaged the Tennessee State Library & Archives, who sent a very friendly reply, suggesting that perhaps she meant to send it to the Nashville Public Library. She really didn't.

But the biggest joy today was watching my girl video chat with her little PWS buddy Polly, who is celebrating her 9th birthday.

She first met Polly years ago at one of the Prader-Willi Syndrome Association UK family weekends, and usually sees her every year at one of these amazing events, where people with PWS and their friends and families get the chance to meet, swap advice, share stories, and just hang out in a world where your abnormal normal is EVERYONE'S normal.

We thought it would be nice to wish Polly a socially-distanced Happy Birthday online, so we prised the laptop from my son's cold dead hands (the only way he'd relinquish custody of it), set up a Zoom meeting, and let the girls hold one of their very unique conversations. These chats, as in real life, are stop start, a bit random, and involve every level of interaction from intense interest to daydreaming and silence, with giggles in between.

The highlight was the off-camera arrival of the postman at Polly's house, delivering a birthday present from some family friends, which was then brought into camera shot, and opened. My daughter thought the live-streamed unwrapping of a personalised cushion was the best darn tootin' thing she'd seen all day, as they'd probably say at Nashville Public Library.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is Carole King - Wrap Around Joy

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. I've not donated as much as I wanted to, for example, as I suspect I'm  going to have to save up for some transatlantic library fines...