I do know three people who independently won around £100,000 each from the National Lottery, the bastards. But me? I don’t normally get a sniff of as much as a box of choccies in a raffle.
Yesterday, this fact changed. I did win something. Something quite special.
A week or two ago, I filled in a letter that my daughter brought home in her school book bag, then promptly forgot about it.
Yesterday, someone from the school rang me, with that obligatory opening sentence: “It’s nothing to worry about...”, always uttered early on in the conversation so you don’t think your child is a) mortally wounded or b) has burnt the school down.
It turned out that the slip I’d returned, entering a prize draw, had won me and my daughter a day out that I have a feeling we’ll never forget. Two tickets to watch the athletics at the London 2012 Paralympic Games in September. Oh, and two travelcards, too. Apparently, special schools across the country have been allocated lucky draw tickets to the Paralympics, and we had the luck of this particular draw.
It was only a few days ago that I was writing about my girl’s Olympian efforts at her special school’s sports day. Now she’s going to get to see some Olympic athletes in action. And she’ll know that all of them have some form of disability. A bit like her. This makes me want to hug Sebastian Coe, and believe me, that’s a sentence I never thought I’d utter.
Of course, my name-drawn-out-of-a-hat triumph deserves an apposite song. I've picked Muse’s offical London 2012 song - Survival. We are all going to be sick of this, I know. But for now, it fits my surreal and overblown joy. And, when it gets going, it's properly bonkers.
She glanced up from her position and waved, shyly. Her brother was hopping up and down with excitement by the edge of the track.
“RUN FAST, JO-JO, RUN FAST!” he yelled, as the starter’s gun popped. At least that’s what he tried to say, but he has difficulty with the letter ‘f’, so what the other parents may have thought he was yelling was: “RUN ARSED, JO-JO, RUN ARSED!”
To be fair, her running was a little half-arsed. My daughter has never been quick - the poor muscle-tone from Prader-Willi Syndrome has always ensured this - but she sometimes used to break into a little trot. I’m not sure what’s planted the idea in her head that she shouldn’t go above walking pace, but that’s her current thinking. Perhaps she’s watched a clip from the film Speed and thinks she might explode if she goes over one mile per hour.
It didn’t matter. She was quite happy to partake in the obstacle course, stepping through a hoop, and carrying a ball along in a plastic scoop. She was just going to take her sweet time during the ‘sprinting’ bits in between. And that was perfectly OK.
This was School Sports Day at my daughter’s special school. A slice of luck meant it didn’t rain. Fortuitous timing meant my husband wasn’t on shift, and Nanna & Grandad could come and watch as well, as the date didn’t clash with one of their jaunts with the appallingly-named Probus Club* (*This is not a Prostate Examination Appeciation Society, although it sounds like one. Apparently, it’s something to do with retired PROfessionals and BUSiness people. I’m guessing none of them worked in brand management).
So my daughter had her little team of supporters. We cheered as she ambled up the course, finishing a bit behind her speedier classmates. Then we followed her round the field as she took part in a bit of mini-golf, a not very long-jump, and some rather excellently-executed beanbag throwing.
Some of her schoolmates were being pushed around the field in wheelchairs. Some of the more physically able, bigger lads were somersaulting onto crash mats after bouncing off a trampoline launching pad. The staff were getting stuck in, demonstrating, encouraging, and retrieving wayward footballs.
My girl was in the thick of it, smiling, and joining in. At the end of it she clutched her medal proudly.
She’s my Olympian.
No video for this, but it's a cracking track. It makes me want to go running up some steps like Rocky Balboa, shaking my ass as I go. Although if I ran up some steps like Rocky did, my ass and the rest of me would probably never stop shaking: Big Boss Man - Triumph Of The Olympian.
“It’s because I’ve got Prader-Willi Syndrome!” my daughter yelled at her classmate, slamming her hand down on the table.
Her teacher met me at the end of school, describing how my normally happy girl had had a meltdown in the classroom.
It was one of those days when her needle got stuck and nothing could make it hop and jump onto the next groove.* (*For those of you who think vinyl is what your Gran’s got on her kitchen floor, this is a reference to LPs. Yes, I’m down with the kids, daddio.)
It isn't rare for my daughter to perseverate (obsess and repeat a phrase or behaviour over and over again). But it is rare for her to do it for very long periods at school, where normally a mix of distraction, patience and luck will see it out.
On this occasion, her thoughts had focused down to the narrowest of channels, and she had decided to repeat herself about repeating herself.
“I...I...I...know. I know. I don’t want to repeat things. You are. It’s because of my Prader-Willi. I’m not repeating things any more. I’m not saying it. You are. I’m going to stop. I’m stopping saying it again. I KNOW. I know. I’m not repeating myself. It’s because of my Prader-Willi. I know. I’m not repeating things any more...You are. I am. I’m not.”
It was an inner dialogue, racing around her brain, but of course it was being declaimed, very loudly, because inner dialogue is not something my daughter’s mind and mouth work together on.
After a morning of this, and no sign of it abating, her teachers were trying to distract her, and her classmates were telling her to stop saying stuff over and over again. Ryan got a blast of her infrequent temper and the table-slamming comment. I believe a pen or two may have been thrown. But, as the teacher explained, my daughter seemed to be angriest with herself.
Sometimes, she thinks about her syndrome. Sometimes she gets frustrated when she gets stuck in a thought or a behaviour and senses what she’s doing is odd or difficult for other people to deal with. Sometimes, but not often, she gets angry. And sometimes she says to me like she did after her meltdown day: “I wish I didn’t have Prader-Willi Syndrome”.
Of course, the next day things were fine. Like they usually are.
Video is Stealers Wheel - Stuck In The Middle With You
My daughter's Father's Day present to her dad - a 'picture tile'
she made at Guides. This photo was taken a few years ago when
the 'grizzled' look could only be achieved with facepaints.
I give my dad a really hard time. He’s the only person I do this with.
My excuses are many: he cuts the tops of his socks off ‘because they’re too tight’; he’s of the generation where he thought it was perfectly acceptable once he was retired for my mum to make his packed lunch for him before she went to work; and when my son was born (after I went in the hospital at midnight, had him at 3.30am and was home, slightly shell-shocked, by 8.30am), he asked me: “Are you going to stay in bed all day?”
Of course, there was also that time when I was 16 and I had to explain to him what a vibrator was, after he said everyone at work seemed to have found it amusing when he told them he’d been decorating all weekend and put up a dildorail in the hall. (I’ve been unable to look at a dado rail without laughing for the 24 years of my life since, and I fully expect this state of affairs to continue).
But I love him to bits, despite my merciless teasing. I wrote about it on Father’s Day last year (see previous post, Grandad), so today I want to share a thought or two on my husband, what with him being a father, an’ all.
I love the fact that when my daughter was born, the nurse handed him scrubs and told him to wait (meaning that she’d find him somewhere to change) he stripped off down to his pants in a busy hospital corridor.
I love that he will instantly accept our son’s order to chase him round the house within three seconds of getting in from work.
I love that he will sit and listen to a series of never-ending questions, repeated over and over again by our daughter as thoughts get stuck in that little bit of Prader-Willi Syndrome glue in her brain* (*This is a metaphor, not a medical fact, all right?).
I love that he tells a cracking bedtime story.
I love that when I’ve been sad and low with stuff that life has slapped me in the face with, he’s always known when I’ve needed to be held, needed to talk, or needed him to whisk the kids off somewhere.
I love that he’s as proud as I am of our beautiful, unusual daughter.
I love that he’s a son his mum can be proud of.
I love that he loves me, and that I know this with more certainty than I know anything.
Boy, am I on the right side of a good thing.
Video is The Fleshtones - Right Side Of A Good Thing (which owes a tip of the hat to another fine fellow and father @twrafferty, whose birthday it is today).
It's all been a bit busy here this week. The builders have now entered the interior of the house, which has meant some nifty shifting about so I can get my work done, keep my boy from sticking his hands in the plaster, and keep my daughter from panicking about the noise.
We've been doing some odd jobs around the place to tidy things up. My husband and son painted the new garden fence, the latter sporting a natty new labourer's uniform (see picture) which I may insist the builders have to adopt next week, just to give me some entertainment.
There is a thin veneer of dust on everything. This is not terribly different to the normal state of affairs here, but at least I've got someone to blame.
Enough cups of tea have been made and drunk to fill an Olympic-sized swimming pool. Refuge has been taken at Nanna's and Grandma's houses. The end is in sight.
My three-year-old wound his Dad up to breaking point last night, and got the Alex Ferguson hairdryer treatment.
I rolled up like an assistant coach, pointing out that it wasn't a good idea to be naughty when you'd been told not to."You've made Daddy lose the plot!"
The young offender looked at his father, quizzically. "Where, Daddy? Where's the plot gone?"
When my daughter was a baby and was diagnosed with this odd-sounding syndrome, I worried about everything. Would she ever walk? Talk? Could we control her food intake? Would she be in pain? Would she cope in mainstream school? Would she have friends? What would she be like as a teenager? What health problems would she suffer? What would happen to her as an adult? Would she still live with us? Could we cope? Could she be happy?
And then I decided that worrying about the future was a waste of time and energy. Planning what you need to plan is sensible, but anything else steals the strength you need to deal with the present.
I knew for many years that my daughter’s scoliosis would eventually get to the point where she needed spinal fusion surgery. But after her consultant gave us a brief outline of what that entailed, I deliberately didn’t find out much more about it. I knew the details would be terrifying; I also knew the op was years away, so why prolong the horror? When the time came to prepare for the surgery, I asked for the gory details, got them, and was glad I’d not had them burrowing into my brain before I needed them there.
We had found a way to untangle the emotions. We'd unpick the end that was in front of us and not worry about the knots further down the line. Unravelling things in small lengths didn't mean the fear and worry went away, but it made it more manageable.
It’s served us well up until now. But lately, there’s been a problem. Cuts to public services, changes to disability benefits, and the seemingly unstoppable march towards a ‘survival of the fittest’ society, means I’m getting worried again about what the long-term future has in store. Will there be any provision for my daughter once she leaves school? In a few years' time, what are we going to do if the deeply flawed, dehumanising ATOS assessment system declares her ‘fit to work’? What will her life be like? How will we make ends meet? Will there be any organisations, government-run facilities or day centres, anything that will offer her fulfilling activities, opportunities, respect, care, and fun?
At the moment, that knotted line feels like it’s tied to a heavy weight. If I tug too hard it's going to come crashing down.
One year ago, I wrote my first entry on this blog, with little idea that 12 months later I’d have posted more than 150 of the buggers.
Most have been fun to write. Some have been hugely difficult.
I’ve realised some things about my daughter - and myself - that I’m not sure I would have understood or dealt with if I hadn’t sat at my keyboard, sometimes in the dead of night, tapping out little bits of my heart.
This blog has had just over 36,000 page views, which sounds quite a lot, until you realise that 1,000 of those came from Google searches where people were looking for a picture of an oyster, apparently. Still, I know there are a few of you out there who’ve stuck with me, so thanks.
If it wasn’t for this wee speck on the internet, I wouldn’t have get to know some fine people, both online and in the meat world. If it wasn’t for this outlet, I wouldn’t always have slept so soundly. And if it wasn’t for the positive feedback I’ve had, I would never have dreamed of getting up on stage in front of a pub full of strangers and talking about my daughter back in January (as detailed in the blog entry Secret). Those 10 terrifying minutes in the spotlight helped rid me of more demons than a Buffy The Vampire Slayer re-enactment society.
I still love my girl as fiercely as ever. I still feel lucky to have her and my boy, against all the odds. I still want to share the good bits, the bad bits and the bits that make me laugh.
Thanks for listening. All of you. Even the man who keeps wanting to help me increase the size of my penis. FOR THE 100th TIME, I HAVEN’T GOT ONE, ALL RIGHT?
Song is Edwyn Collins & Johnny Marr - Come Tomorrow, Come Today
Here's a Spotify playlist with all the songs I've posted on this blog in the past year. Well nearly all - a couple aren't on Spotify. And I've been revisionist and ignored Justin Bieber and Mariah Carey's Christmas duet. Because no-one should have to listen to that.
You will enjoy yourselves, whether you like it or not
The rain drummed down. Our street was empty. Waterlogged bunting sagged forlornly along the fronts of Nos 1, 9 and 10.
I’d checked with my neighbour Julie that the Jubilee street party was still going ahead, but so far, no-one had braved the rain.
“Right,” I said to my husband, adopting an inspirational voice-over tone. “If we build it they will come.” Although he insists that what I actually said was: “Get that effing gazebo out there, we’re going to get this party started.”
I was dressed as if for a deep sea fishing trip, in a huge waterproof mac. He had decided to don a pair of shorts, sandals, and an Hawaiian shirt. We started to assemble our flimsy shelter. And, sure enough, doors started to open. Fellow residents began to assemble. Other gazebos and picnic tables started to appear. A rain-lashed, windswept, shanty town was erected, much of it weighted down with boxes of beer (which rapidly lost effectiveness with every bottle that was consumed).
Nanna and Grandad, despite not living in our street, were allowed to join in the festivities. In the grand tradition of old-fashioned British values, I kept calling them “bloody foreigners”.
My daughter, who hates the cold and the wet, was wrapped up warm in a chair and supplied with lots of chopped up peppers, salad, low-fat coleslaw, cold chicken, and other healthy grub. There was a vast array of cakes and puddings and all the things she can’t eat because of the strict low-fat diet she has to be on to remain a healthy weight. This is exactly the kind of occasion that used to fill me with dread when she was younger, but we've developed some effective strategies over the years. (The technique on this occasion: sit her next to Nanna, who will remain alert and responsible and make sure her grand-daughter only eats what she’s allowed, while her wayward parents wander around chatting).
My son, a bundle of grumpiness for the first half hour, wrapped himself in a blanket and played on his sister’s DS. He only poked his head out when he spotted a teetering tower of Jubilee cupcakes. I’m not exactly sure how many he had, but the resulting sugar rush inspired a frantic game of ‘What can I knock over if I stand three feet away and boot my football at the tables?’ The ensuing destruction and mayhem, of course, cheered him right up.
The weather added another unexpected level of enjoyment: when the wind blew, intermittent Total Wipeout-style sudden sloshes of water splashed down from the tops of the gazebo, landing on heads, laps and sandwiches. Very funny, when it was someone else.
We provided the music by looping an extension lead over my back garden wall, and sticking one of our Sonos hi-fi boxes on the table - weatherproofing it by sticking it in a Bag For Life). I’d prepared a Jubilee playlist (you know, stuff like Jubilee Myself and I, Jubileesy Like Sunday Morning). I did throw in God Save The Queen by The Sex Pistols, in the hope of sparking an argument, but the general levels of drunken chumminess were high, and I realised there were probably only about four people there who would really count themselves as Royalists.
Popping down the pop-up gazebo
proved spectacularly unsuccessful
By around 6pm, before the first symptoms of hypothermia and trenchfoot were beginning to manifest themselves, we started to disembark from the Jubilee jetty. Empties were collected, my husband and my Dad made a terrible, hilarious, and ultimately fatal, job of disassembling the gazebo, and we said goodbye to the neighbours.
During all of this, the Queen (God Save Her and Her fascist regime) had hardly been mentioned. So what had it all been about?
Well, we were a bunch of people who live in the same road, who don’t always see a lot of eachother because of work, and the way we sometimes tend to cocoon ourselves in our own little spaces.
Someone had had the idea of getting together on a day when lots of other people were doing something similar. It was nice. It was friendly. We spent the afternoon with big grins on our faces, in a soggy little community. And as an added bonus, this meant that we were nowhere near our tellies or radios, so could avoid the TV coverage of the event and its accompanying mass media tidal wave of unctuous lickspittling.
It was an excuse for a party. An excuse to have a few drinks. So we did. By the end of it, in fact, we had invented two new words for being sloshed whilst taking part in a royal celebration. The first: getting bunted. The second: jubileebriated.
My daughter saw the school dentist the other day. Yes, I was surprised they had one, too. Apparently, he’s an NHS dentist who visits the special schools in his mobile dentist’s surgery. Which is in a van. (Now I’ve explained that, he actually sounds a bit like a serial killer, and I’m starting to worry...but I digress).
At this point I would like to remind you that my daughter is obsessed with her teeth. To elucidate: she has asked me at least half a dozen times every day for the past year how many teeth she has; I then ask if any have fallen out since the last time she asked me; she replies “No”; and I tell her “That means you’ve still got 28.” Then it’s rinse and repeat.
Today, she arrived home happy after school, but then when I asked her how her day had been, she got that look. A potential meltdown was brewing, and I hadn’t spotted it beneath the surface.
Her eyes brimmed with tears as she recalled her conversation with Dr H. Lecter, or whatever his name was.
“The dentist said I might have to have a brace, Mum. But he might have to take four teeth out.” She looked horrified at the thought of her beloved figure of 28 being ruined.
And then, thankfully, her face changed again, like a warm wind had suddenly thawed her chilly thoughts. She looked at me, nonchalantly, and raised an eyebrow.
“I told him I wasn’t interested.”
Video is Steve Martin - You'll Be A Dentist (from Little Shop Of Horrors)
