Thursday, 11 January 2018

Vision

Anxiety besets us all, but when you’re the parent of a child with PWS, you get beset by their besetting too.

We had a seemingly simple task to complete after school today: an eye test.

It took 80 minutes of cajoling, coaching, explaining, shushing and minor reprimanding. It resulted in an eventual victory with a side order of tactical retreat. But it’s the first time in Dry January that I’ve been sorely tempted to get wet.

My girl was a bit tired after a busy day. She was in a questioning mood, which can be either endearing when well-timed or exasperating when not.

But what sucked up the time today was her obsession with the details. From the moment we arrived at the opticians, I knew the path to glasses was going to be labyrinthine.

Firstly, she started talking about having to pay for her specs now she’s over 18. She’d overheard me saying something about it to her dad earlier (from a distance of one floor and three rooms away, thanks to her bat-like hearing). So she wanted to announce it loudly in the shop - I think essentially just to show off to staff and other customers about being an adult - and she did. Many, many times, before, during and after the eye test.

The optician was given both sides of my daughter’s all or nothing conversational skills. When asked to read out the letters, my girl stared into space, day-dreamed, looked like she might actually fall asleep at one point, but mainly uttered each letter in-cred-ib-ly slow-ly, with in-cred-ib-ly long pauses between each one. She seemed to be struggling, but there’s this detective game that needs to go on, in assessing whether she is really looking where she’s supposed to, whether she’s just taking her time because processing things does take her longer than most other people, or whether she’s just saying she can’t see very well because she fancies a new pair of glasses. It’s a challenge. 

On the other hand, my daughter sped up, dramatically, at exactly the wrong times: whenever the optician wanted to explain anything or give her instructions, instead of deliberations and pauses, my girl unleashed a non-stop barrage of circular statements and questions at the optician, at me, and even at herself.

It took patience and time to get through the test. And the optician did remarkably well not to lose the will to live, because I very nearly did, and I’m the mum.

Then came the bit where you sort out the frames. It started well with my girl making a miraculously fast choice (only because she had very specific criteria for them being ‘roundish’, ‘with no sticky on nose bits’, and with ‘a pattern on the inside’, and there only happened to be one pair that ticked all three boxes, Hallelulah!)

But it then took forever as she began to get slighty panicky and very question-spewy at pretty much everything the assistant was saying about lens types, coatings, sizing, price, offers, expected delivery, and there might have been even more stuff but I couldn’t bloody hear because my daughter wouldn’t bloody shut up!

We left, past tea time (I blamed myself for a booking a dangerous appointment time). I’d declined to sort out the free second pair offer - that could wait until another day when I’d had chance to charge up my resolve, and she’d got some food in her belly.

I forked out a vision-blurring amount of money, and we headed home. And I had that thought, that selfish thought that I sometimes have, and hate myself for. I wished things were different. Simpler. That my 19-year-old girl could get herself kitted out with new specs like any other typical 19-year-old.

She’ll do something atypically delightful tomorrow, I know, that will make me laugh, and make me grateful and give me the joy that only she sparks. And my ugly wish will melt away. Because it is ugly. (It’s just struck me how weird it is how it sometimes surfaces over small things like an eye test - compared to the hospital scans and operations this is easy, beginners’ level stuff). 

Wishing she didn’t have PWS is pointless and reductive and I can’t wish it really, it’s not fair, because she wouldn’t be her, she wouldn’t BE without it. But I’ll know I’ve wished it all the same.



Song is Snowbird - All Wishes Are Ghosts

Sunday, 31 December 2017

Cope

She’s flying in the face of fashion now, 
Seems to have a will of her own.

I’ve always liked Sir Julian Of Cope’s World Shut Your Mouth. It’s a meat and potatoes stomper, but a hell of a catchy one. I remember watching JC perform it on Top Of The Pops in the 80s, all dark sunglasses and gangly, leather-clad limbs, writhing around on his special step-on-and-off microphone stand like some kind of demented (and possibly constipated) bat.

It’s got a new life for me now, since it featured in the BBC drama The A-Word. The programme features a family with a young autistic boy, who is obsessed with his dad’s record collection, listening and singing along to a plethora of indie, rock, punk and new wave tracks.

It’s my daughter’s new favourite song from her new favourite show. She loves the drama because she’s fascinated with other people’s syndromes and disabilities, and because her syndrome shares some traits with autism (or ‘oysterism’ as she often pronounces it). And she loves the song because she thinks it’s a bit rude, what with the lyrics telling the world to shut its mouth. “He should say shush, shouldn’t he?” she asked me. And that's not easy to say - trust me, I tried it after a couple of gins.

She also told me: “I’m a bit like Joe in the A-Word, mum, because I can calm down if I’m worried by listening to music."

“I’m the same,” I admitted. Although I didn’t mention quite how much more calming I find the rather impressively curated ‘A-Word Playlist’ compared to the previous ninth circle of hell - her ‘Favourite Tracks’ selection, which included One Direction and The Macarena. No-one deserved that, least of all me.

She’s flying in the face of fashion now, 
Seems to have a will of her own.


Keep on flying, my girl.



Video is my daughter - World, Shush Please.



Video is Julian Cope - World Shut Your Mouth

Monday, 25 December 2017

Midnight

So it’s just gone midnight on Christmas Eve. Thinking about it, it’s actually Christmas Day.

And I’m feeling a touch melancholic. (Which is one up from alcoholic, which is what I've been feeling for most of December, having approached 'social drinking' occasions in a professional capacity that I wish to downgrade to amateur status in the New Year).

My man is working nights, and is apparently in a control centre on the motorway somewhere (he’s normally in a van, so I hope for any motorists’ sake they don’t let him anywhere near any computer equipment).

Me and the kids have watched Gremlins. You wouldn’t get away with half of that shit in a kids’ film nowadays: it’s great.

We’ve also been out for our annual Christmas Eve curry (enlivened this year by my mate’s birthday cake candles actually setting off the restaurant’s smoke alarm. I’m not saying she’s old, etc).

My girl is fast asleep. My boy is very much awake. This is very much par for the course.

But something is very different this year: my children have both informed me (with no small element of delight), that they no longer believe in Father Christmas.

Seeing as my boy is a cheeky know-it-all, I’m surprised I got away with it until he was nine. (“I know it’s your parents. Santa couldn’t got round the world, and I’ve seen the paper, and you write all the labels. You try to change your handwriting, but it’s rubbish.”)

Seeing as my daughter is nineteen, I should count myself lucky that I’ve had these extra years of her believing. Special needs has some special advantages sometimes. But she’s decided she’s all grown-up. (“I don’t believe in Santa, Mummy, or Jesus. And you can celebrate Christmas how you want to. But I do still want presents.”)

So I'm feeling a bit pensive and a little misty-eyed at the end of an era.

Although I still put a mince pie out for Santa, for tradition’s sake. 

It is OK to leave Gizmo near the mince pie after midnight, isn’t it?

Song is Low - Some Hearts (At Christmas Time)

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.

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