Friday, 10 November 2017

Presentation

It was just a few steps.

My daughter was one of 25 or so pupils who were being honoured at a school presentation evening.

She and I were sitting in the first row, because we’d got there half an hour early. (I’d got the start time wrong because I’d accidentally read last year’s letter on my email instead of this year’s. My girl will definitely harp on about this until, possibly right up to and beyond next year’s event. Sometimes I am an utter idiot).

All sixth form pupils from her special school (with some leavers from last term who had now gone on to college) were getting certificates.

All have special needs of some description. Of many descriptions.

All were getting recognition for passing various courses, from entry level English and Maths, to Land Management, and a plethora of subjects in between.

All of them took a few steps up to the front of the hall to get a handshake, a posh folder, their certificates, and a round of applause. (Well, all except one, who couldn’t cope with standing up in front of a crowd, so was handed it while he hid behind a door).

My girl got a couple of Retail unit awards and an Employability Skills award from her day release college course, plus Gold and Titanium Work Experience certificates, for her continuing placement at a local spa.

She heard her name called, and stood up, awkwardly, shyly. She shook hands with the teacher, smiled for her photo, and clutched her blue folder.

I looked at her face, and the faces of these kids, these kids I’ve seen grow up over the past few years, and I thought about how far they’ve come. 

It was way, way beyond a few steps.


Video is Madness - One Step Beyond



Saturday, 30 September 2017

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








Tuesday, 29 August 2017

Sandwich

This thing about being a ‘sandwich carer'. It sounds like a euphemism for being fat, you know, along the lines of ‘salad dodger’.

We all know what it means, though, right? Someone of my generation (yeah, yeah, middle-aged, all right, don't rub it in) who is looking after kids and parents at the same time, and ends up being the delicious tikka*/wilted lettuce* [**delete according to mood] in the middle).

Well, I’m OK with it. I take responsibility for my progeny -  and the fact that one needs extra help because of a chromosomal blip is something that happened, something we deal with, something that just is. I also share responsibility for my oldies, because, well, I love them and they made me, put up with me, wiped my bum, took me to the seaside and did tonnes of lovely stuff for me.

But my sandwich is big enough, thank you; two slices of bread is enough. And yet, somehow, some bastarding bastardy how, a third slice has been added. Someone’s Scooby-Snacked my sarnie. They’ve added to the middle. 

They gave my husband cancer.

Don’t flip out, he’s not going to peg it.

When we went on holiday at the end of May, I noticed a large, black mole right in the middle of his back. (I saw this when I was rubbing sun cream in, not because we were trying out crazy, holiday cocktail-fuelled sex positions. Look, genuinely we weren't...but crazy, holiday cocktail-fuelled sex positions do sound goooooooood).

He got the mole checked out when we were back. The hospital told him he needed to have it cut out, pretty much immediately, that week.

The tests came back positive for a melanoma. Skin cancer. And there was this little lump under his armpit that needed testing - it could have spread to his lymph nodes.

He had scans. He had more tests. Everything happened fast and yet slow. Each procedure and investigation took a few days to book, a week or so to report back, and another stage to get to and get through.

Gradually, we could let the terrified air out of our lungs as the answers we got were the ones we’d hoped for.

It was Stage 1b, which is early. No, it hadn’t spread. 

He’s on his way back from hospital now, having had a second ‘excision’ (to basically dig out everything 2cm around the site of the mole). But it’s OK. They’ve caught it and removed it.

He’s going to have to go back for check-ups every three months for the next few years. I’ll be photographing every inch of his skin to keep an eye on his other moles. Maybe I’ll light some candles, put on some Barry White and tell him it’s sexy nudie pic time. 

I love him more. 

I didn’t think I could, but I do. (And that’s not just because he’s been signed off from work for a fortnight, which is handy for childcare at the end of the school holidays, honest).


And, don’t take this the wrong way, but I’m really, really hoping he’ll stay the fuck out of my sandwich.

Video is Eels - Cancer For The Cure

Sunday, 23 July 2017

Four (Six)

I still remember the first time she walked. The first time I held her hand as she tottered along with jelly legs. My daughter’s floppy muscles meant she was three and a half before this happened. Her rare syndrome means that her muscles will always be weak and she will always tire quickly. But my daughter’s determination means that she’ll damn well always do her best. And today we saw her bright, shining best. Today, she walked six miles. Whatever you do, though, don’t tell her that.

We were up in the Stockport area of Oop North, taking part in The One Small Step charity pub walk. Organised by the incredible family and staff from Almond Family Pubs, the 12.5 mile walk (taking in five hostelries) was in aid of the Foundation for Prader Willi Research UK (FPWR UK). It’s a charity close to their hearts, as family member little Bella has the syndrome.

It took a bit of logistical shenanigans. We were meeting up with two of my girl’s fellow Prader-Willi buddies, who were doing different distances. My girl had agreed to do her absolute maximum of four miles (which she managed once on a walk with school, and which pretty much wiped her out). However, we threw caution to the wind, stretched the truth a little, and decided to do six miles, and tell her it was four. Don’t judge me.

The slightly complicated plan involved meeting Buddy One (whose birthday it was), and Buddy Two at two different pubs, a refuelling meal, wee breaks, and well-timed snack stops. Rain was forecast, but it stayed away, and the sun came out.

And the trio were amazing. With no moaning, stubborn determination, and a chitter load of chat, they walked along roads, through woods, by streams, up a hill or three, down some muddy steps, and over the finish line.  A packed pub garden full of walkers clapped and cheered them over. They clutched their medals with pride. I marvelled at my girl, like I do, a lot, only this was one of those especially marvellous moments.

They were shattered. My girl had a ladybeer (her name for a shandy), and Buddy One had a sleep on the picnic table. They looked like the last two drunks left at the bar on a Saturday night. (A position I would have glad to take on for real, only I was driving).

We disappeared off for Buddy One’s birthday tea. Raised anxiety levels due to their exhaustion led to a small chain reaction of mini meltdowns during the meal-ordering process (including my daughter’s utter incomprehension that we had found an Indian restaurant that DIDN’T do poppadoms). But once grub arrived and was demolished, equilibrium and smiles returned.

I kind of tested the waters about the distance. “I think you might have managed a little bit more than four miles...” I began.

“WHAT DO YOU MEAN?” she pounced. “I DID FOUR, DIDN’T I? YOU SAID FOUR!”

“Yes, I just meant ever so slightly over four. Just like we said. Well done!”

Yes, today a miracle happened. My girl walked six miles. And somehow two of them have disappeared. Keep schtum, OK?

Song is Some Kind of Wonderful by Soul Brothers Six. Sorry, Soul Brothers Four. FOUR.

Thank you to everyone who has sponsored us. If you fancy forking out a couple of quid, our Just Giving Page is here.


Wednesday, 19 July 2017

Cubed

The Fidget Cube craze has infected my daughter. 

If you don’t know what one is, it’s pretty much what it says on the packet - a cube you fidget with. Launched last year on the crowd-funding site Kickstarter, it’s a small plastic cube with various clickers, switches and dials, designed for fidgety people - particular those on the autistic spectrum - to self sooth with.  

The highly contagious craze (and its literal spin-off Fidget Spinners) soon spread from playground to playground. At some point soon, of course, the little anti-stress toys will go to the great toy fad graveyard in the sky, nestling amongst the dusty piles of Loom Bands, Tamagotchis, Pogs, and - one the for the older readers - Weebles.

These type of crazes are usually faddy, plastic bits of junk, but because people with Prader-Willi Syndrome have a tendency to skin-pick, and/or in my daughter’s case, rub her fingers and wring her hands together, I thought a Fidget Cube might actually prove useful.

Josie has had various ‘fiddlers’ over the years (the longest serving type being whistle strings), but she soon had one of these clicky things on her wishlist.

“This would be a REALLY good fiddler, Mum! Can I have one?”

I ordered it from the internet. And that was when the problems began.

First, the expected delivery date kept changing. I began to suspect it was on a slow container ship from China.

“Why didn’t it come when they said it would?”

Next, when it arrived, Josie began an extensive authenticity drive, spending several hours looking up videos on YouTube, before announcing: “This isn’t a real one. It’s fake.”

I assured her that it was probably just a version made by a different company, and got myself in terrible tangles trying to explain the concept of a generic toy, as opposed to a knock-off one.

“Well, Lewis has got a real one, and it cost £55,” she insisted. I, in turn, resisted the urge to reply: “Well, I don’t think that’s true, because they’re not that expensive, and if it is, then Lewis has been stitched up good and proper.”

After a day or two of wrangling and circular conversations, she was finally able to show me that two of the buttons that were supposed to be silent made a click when you pressed them. This, apparently, was not right.

“So what you’re saying is that I’ve bought you a clicky thing and you want me to buy another clicky thing that is identical in every way apart from two bits that DON’T click.”

That was about the strength of it.

I gave in. Spending a tenner, rather than £55 quid, obviously, I ordered an original cube from nominatively deterministic makers Antsy Labs.

It came. It was the correct one, I assured her. But, apparently, it wasn’t.

“This isn’t a real one because it’s too small.” It wasn’t too small.

“It should be the same size as the fake one.” It was.

“You need to order another one.” I didn’t.

The issue is ongoing. And yes, I do appreciate the irony of all the anxiety caused by an anti-anxiety toy. 

Song is Thee Oh Sees - Gelatinous Cube

This post first appeared in the latest edition of PWS News, the newsletter of the Prader-Willi Syndrome Association UK. They have a very informative website here.

Tuesday, 11 July 2017

Slang

“Bollocks,” she said. 
“I beg your pardon?” I spluttered, my eyebrows raised in shock, as my daughter is usually quite prudish about swearing.
“We were talking at school and I said how the Grandad in Outnumbered says ‘bollocks’ all the time when he can’t work the telly.”
“Ah, OK. Was this to the teacher?”
“Yes. We were saying slang words for penis.”
“OK. Bollocks doesn’t mean penis, though.”
“Yes it does.”
“No, no it doesn’t. It is part of men’s bits, but it’s the testicles, darling.”
“Oh.”
“Er...why were you talking about this?”
“We were doing group sex and relationships.”
This was not as deeply inappropriate as it sounded, just grammatically confusing, so I decided to roll with it.
“I take it this was to teach you that some words are rude and that you perhaps shouldn’t use them if you want to be polite?”
“Yes.”
I went all in.
“So did you all come up with lots of words?”
“Yes.”
“And who knew the most, the boys or the girls?”
“The boys, I think.”
“Would you like to share any?”
“Pussy, but that one’s for ladies' bits.”
“Yes, yes it is.”
“And someone said the really, really rude one.”
“Oh yes?” By this point, my husband - making a cup and tea and standing in the kitchen with his back to us - made a strangled, spluttering noise, and gripped the worktop as he tried his utmost not to collapse.
“Yes, the worst word, Mummy. Kent.”


Song is The Fall - Slang King

Friday, 30 June 2017

Cobbles

We took a birthday cake to my mum-in-law in the old folks' home today. I lit the number candles, and she gave me an admonishing stare. She simply refused to accept she was 87: "Don't be ridiculous - I'm not that old."

It seemed like a very acceptable and satisfying birthday policy for us all to adopt.

We handed over cards and pressies from members of the family from further afield who couldn’t be there (although it’s a little sad each year to see the pile diminish due to the simple fact that she’s outliving most of her contemporaries).

She liked the card my daughter gave to her. My girl had bought it last Saturday when she’d been out shopping with a carer, practising independent skills. Independently, she’d thought of Grandma’s birthday, and independently, she’d chosen a card. The carer raised her eyebrow at me when they arrived back, as my daughter showed me what she’d chosen. It was a photo of two women in Victorian clothing, riding penny-farthings. The speech bubble next the the first read: “I’ve never come this way before.” The second said: “It’s the cobblestones, Patricia.”

“It’s a jokey card, Mummy. Do you think Grandma will get it?”, my daughter asked, the beautifully innocent look on her face illustrating how far over her own head the joke had sailed.

“Yes, she’ll love it.”

Grandma, bless her 87-year-old cotton socks (the socks are  about a month old, because we did an M & S stock-up in May, but you know what I mean), actually thought the woman was saying she’d never come home this way before, which de-escalated the smut somewhat. Which was probably just as well. 

As much as I like a double entendre, hell, single ones, too, it would be a bit weird, joking about orgasms with my Mum-in-law (who was my primary school teacher when I was six, which is weird enough anyway), whilst sitting next to my other half, her son, whose most vital role in life (and I’ll fight anyone who says it isn’t) is to have a cobblestone effect on me.


Happy birthday, Margaret. 


Video is The Grimethorpe Colliery Band - March Of The Cobblers (from the film Brassed Off)

Sunday, 11 June 2017

MRI

We kept a lid on it.

She was bubbling a bit, but nothing we couldn’t handle. 

My daughter was waiting to go in for an MRI scan at the Royal Orthopaedic Hospital at Stanmore.

The scan was so doctors could have a closer look at her back, as her posture has unexpectedly developed a little more wonk and stoop over the last few months.

I read my girl the explanatory leaflet, telling her exactly what the procedure would be. Despite having had a couple of MRIs before, my Prader-Willi Syndrome teenager was persevering with her perseveration (repeatedly asking the same anxious questions).

“If I start to dream, will I start to grind my teeth? Mum, we haven’t got my mouthguard!”

“Will it be really loud?”

I assured her that if she did have a little nap, she wouldn’t be in a deep enough sleep to dream, or grind. I also reminded her that she’d be given headphones, which would make the beeps and clonks quieter. 

After a few verbal laps of this, my daughter settled back in her chair, edgy, but reasonably content. And then a ‘helpful’ woman patient in a hospital gown - who I shall henceforth refer to as ‘Mrs Shut The F*ck Up’ - appeared, having just finished her own MRI.

Seeing my girl and obviously trying to be nice, Mrs STFU said the following. (Please bear in mind my girls two obsessive lines of questioning, as detailed above...)

“Don’t worry about it - after a minute or two you just drift off and start dreaming.”

AAAArrrrrrgghhhhh!  I leapt in with a quick qualification that the lady didn’t mean she’d been asleep and that she meant day-dreaming, shooting the woman warning looks utilising some meaningful Roger Moore eyebrow movements (RIP the great man. And his eyebrows).

The woman's supplementary f*ckery?

“You’ll be fine. Although there’s a bit of banging. It’s a bit like a giant hitting something with his hammer.”

A BIT LIKE A GIANT HITTING SOMETHING WITH HIS HAMMER! In what world would you think a sentence like this would reassure an anxious child? I pity any grandchild of hers who has Nanna STFU reading them a calming bedtime story!

Thankfully, the male nurse leapt in, noticing my eyebrows go from ‘Roger Moore’ setting to full ‘Bill Bixby turning into Lou Ferrigno’ territory (for anyone under 40, this is an Incredible Hulk reference, OK? Telly hulk, not sexy Mark Ruffalo Avengers hulk...)

Meltdown Prevention Nurse - picking up on the sudden escalation in anxiety and gamma ray levels in the air - ushered Mrs STFU off to the changing room, after telling my girl: “Oh it won’t be too loud, I promise. I’ve got nice big headphones, and you can choose some music to listen to if you like.”

She steadied. The thought of Taylor Swift did the trick. And, a few moments later, headphones firmly on, my girl lay underneath the clanking, doughnut-shaped MRI machine for forty minutes, still, compliant, and chilled out.

Meanwhile, I fell asleep in my chair in the corner. Dreaming of Mrs STFU and very probably grinding my teeth.

Video is opening sequence from the 1978 TV show The Incredible Hulk, Not dated in anyway, no siree.

Saturday, 10 June 2017

Bananarama

Seventeen thousand steps is a decent distance - around eight miles, depending on your stride.

If you’re a bit of an exercise nut like I’ve somehow turned into over the past 18 months or so, it’s a pretty common figure on my Fitbit.

But if you’re a teenager with Prader-Willi Syndrome, with weak muscle tone, and an aversion to exertion, it’s a marathon.

And yet that’s how far my PWS daughter walked today, on a trip to London Zoo.

It was a PWSA UK (Prader-Willi Syndrome Association UK) Family Day. One of those special days where us oddball, motley, marvellous PWS people gather together.

We took over the education centre at the zoo, where staff showed us cool stuff like a tortoise shell and a crocodile skin (the crocodile wasn’t in it, in case you’re wondering about the Health & Safety implications).

The face-painter was kept busy creating Spidermen and tigers, and my girl and her PWSBFF (Prader-Willi Syndrome Best Friend Forever) got their arms daubed with pretty flowers, beaming like drunken hen night revellers in a tattoo parlour.

My daughter did her usual quizzing of parents of PWS babies/tots with questions about their age and what they eat. But there wasn’t time to speak to everyone - the teen queens had a zoo to explore, and explore it they did.

The duo became a trio with the addition of NPWSF (New Prader-Willi-Syndrome Friend), a delightful fellow teen who joined the Tattoo Club, grinning just as widely, and accompanied us on our safari trek with her dad. I christened the girls Bananarama (but only in my head, because there’s no need to talk about food unnecessarily in front of teenagers with genetically-led insatiable appetites, is there now?). 

We peered at penguins, goggled at giraffes, beheld bats, and I would say leered at lions, but I’ve run out of alliterative synoyms for ‘looked at’, and that one’s just silly.

My boy, the one without PWS, and the one with perfectly springy, tough muscles, was the one to run out of steam because “his feet hurt”. We called it a day, and caught the train back home, accompanied by a pigeon who hopped on at Kings Cross, and hopped off with us 45 miles later. He could only have exuded more of an air of ‘experienced commuter’ if he’d been clutching an ovepriced cappuccino whilst reading a copy of the Evening Standard.


Thanks to the PWSA UK for arranging, and for the lovely staff and volunteers for their friendly welcome and hard graft. Thanks to the zoo staff, too. 

And finally, most importantly, most memorably, thanks to our own version of Bananarama for their smiles - the only things today that blazed brighter than the sun.


Video is Bananarama (Jesus, that's a word you get lost in when you're typing) - Love In The First Degree. This video, though. I repeat, flabbergasted, this video, though.

Thursday, 8 June 2017

Vote

Today, I took my 18-year-old daughter down to the polling station to cast her first ever vote. I’m happy, proud, and a little bit teary. 

Yes, the smile will be wiped off my mug tomorrow, when we know the result of the UK General Election (or as I like to call it, another demonstration of the average British voter’s inexplicable desire to shoot themselves in the foot, repeatedly).

Like the morning after the Brexit vote, I’ll be feeling so utterly out of step with an insane world that I will most likely be out running at some ridiculous hour (I might as well do a physical version of my emotional huffing and puffing).

But today I’m happy.

I did the responsible thing. Taking into account my girl’s learning difficulties, I tried to give her a simplified guide to each party's policies. And I did try to disguise my own preferences, honestly, m’lud.

She’s watched the Newsround special. She’s talked about it in school (and told me that one of her teaching staff will definitely be voting for the ‘craps’. After some discussion, I realised she meant ‘crats’ as a diminutive of the Liberal Democrats, which came as something of a relief).

She chose ‘the red ones’. “Because of more money for the hospitals, and Grandad is in hospital, isn’t he?”

I explained how she would have to tell the polling station staff her name and address, take the ballot paper into the booth, put one cross next to the name of the person from the party she had chosen, fold it up, and post it in the special box. (I broke this down into each step, obviously, as otherwise she would have been lost at “name”).

And we did it. She tentatively walked to the voting booth, and took an age to read everything on the paper and find where she needed to mark. Then she walked, uncertainly, over to the ballot box, where the chap showed her where to post her slip. I watched all of this, standing a few yards back by the door, having already cast my vote. In the meantime, I’d had a little chat to my eight-year-old son about the process, and explained how important it was to vote, and how some people had died in order to give everyone the right to choose the people who ran things.

He didn’t look especially impressed.

“Why don’t they use computers instead of bits of paper?” he asked.

“Well, when you have computers, you might get hackers,” I said.

“Yeah, but you could get burglars stealing the box,” he replied, looking thoughtfully at the windows and doors, possibly checking for ease of unauthorised entry.

“Blimey, are you planning to hijack the election yourself? You’ll get locked up, you know.”

The polling station staff had overheard us, and were smiling.

As I ushered him and his sister out of the polling station, my boy was still pontificating.

“No. I’m not going to steal the box, Mum. But I think I know who will win, anyway. They’re called the Conservatories. They’re a bit like that baddie, Trump, aren’t they? He’s horrible.” Then he winked, put on an American drawl, and added: “And they WILL BUILD A WALL.”

Song is The Move - Vote For Me

Sunday, 14 May 2017

Baps

Baps. We’ve been juggling some enormous baps.

Unlike most of my everyday conversation, this isn’t as rude as it sounds. I’m just being a bit free and easy with my brain’s random acronym generator. BAPs (in my head, anyway) stands for Bunches of APointments. And lately, BAPS are, indeed, what we’ve had our hands full of.

My daughter turned 18 towards the end of last year (dear God, I’m getting old). So she’s in transition. This is a word that makes me thing of gender reassignment, but it’s not that kind of transition; she’s at the age when she swaps over from child to adult services in health and social care, and that involves big BAPs.

There have been GP appointments, dental appointments, and hospital appointments. There have been social care assessments and visits, plus a new social worker, new physio, and new endochrinology team to meet. 

A bridging loan has been required to pay for all the exorbitant car parking fees. A small area of woodland has been felled to make the paper needed for all the letters, reports and forms involved in BAPs work. There's been an oak tree’s worth just for my daughter's EHCP plan. 

And all of these things disrupt the normal routine. They put the usual timetable out of kilter, and cause varying degrees of worry to my worry-guts daughter, from low-level anxiety to full on meltdown, and the myriad of stages in between. Although she’s pretty good at meeting new adults, she comes away from each appointment having hoovered up info that she blows back out again in the form of repetitive, repetitive, repetitive questioning. 

This is how it goes. There are stages in our PWS children’s lives when we tend to feel more like a PA than a parent. When we switch our work schedule, tag team with our partner, and start scaring the postman with a terrifying scowl whenever he approaches our house.

But I know something. BAPs aren’t constant, even if it sometimes feels like it. There are stages in PWS lives when things do go gloriously quiet, when things tick along, when you’re not having to invent a time travelling machine to be in three places at once.

Enjoy these times when they roll around. And try not to start rifling through your paperwork because of the niggling thought that somehow you must have missed something. 

Ignore the niggle. Embrace the peace. You’ll know when the BAPs are back.

Song is Blondie - Long Time. Chosen for the first line: "I've been running circles"... And also because it's a very cheery pop song.

This post first appeared in the latest edition of PWS News, the newsletter of the Prader-Willi Syndrome Association UK. They have a very informative website here.

Wednesday, 10 May 2017

Diary

I love my daughter's school diary entries. In them, she has to list what she's done that day. Grammar and punctuation can be an issue. Yesterday's curriculum seemed a little...well...'frisky' - and I'm not talking about the piglets. I'm not surprised her teacher felt the need to annotate.



_____________________________________________________________________________



Song is Beck - Sexx Laws

Monday, 1 May 2017

Five

In honour of May being Prader-Willi Awareness Month (and also Gin & Tonic month, just because I’ve decided, OK?), I’m going to share something.

I could talk about a missing bit of a chromosome. I could give you a list of the main characteristics of the syndrome: how it involves weak muscle tone, immature sexual development, an excessive appetite coupled with a decreased calorific requirement, learning disability, and poor emotional and social development.

But that’s impersonal. And a bit depressing. It’s the kind of summary that floors you when you read about PWS as a new parent - as we did 18 and a half years ago. It’s a blood-draining, gut-punching shock. It’s unthinkable, unimaginable, unfair.

I’ll share something else, instead.

Tonight, I’m sewing a badge onto a blanket. It’s a small thing, but it isn’t a small thing.

My girl, the one with weak muscle tone, the incredibly stubborn one who won’t do anything she has set her mind against, and who has for all of her life clung insistently to floats and woggles in the pool, has earned her 5 metre badge.

Her swimming teacher, an otter-like marvel, has someone channelled my daughter’s stubbornness and determination, and got her to swim free. My girl’s style may have been unorthodox, her feet may have been dangerously close to touching the bottom of the pool, and she won’t be winning any speed records, but she did it.

That’s it, that’s what I want to share. That phrase. Expected and unexpected. Familiar and fresh. A phrase that I’ve used countless times, after countless waits, in different contexts, but always in the same amazed tone.

She did it.

I bloody hate sewing, though.

Song is Agnes Obel - Fivefold