Thursday, 31 December 2015

Moments

It’s a time of lists. Other people may be doing New Year’s ones, but I’m all behind (well, not all behind, but 80% fat arse after all those mince pies) so I still want to tell you about Christmas. Here are my Best Of moments in various categories:

WINNER - Moments of utter horror:
My son excitedly loading his new Star Wars Disney Infinity game and lining up his figures in front of the PS3 on Christmas morning, only to see a message flash up on the screen: ‘There is not enough memory to load this game’. It took me at least 1hr and 49m to sort it out. I know this, because my daughter watched the whole of Nativity 3: Dude, Where’s My Donkey? before I managed to solve the problem.

WINNER - Moments of ‘looking on the bright side’:
Not having to watch Nativity 3: Dude, Where’s My Donkey?

WINNER - Moments of ‘am I a bad person for finding this funny, despite it also being heartbreaking?’:
The roulette wheel of dementia spinning round and causing Mum-in-law to assert with full authority: ‘Of course it isn’t 25th December!’ before looking round the table, spotting Christmas cracker hats on everyone’s head and slowly raising her hand up to feel the rustle of a festive paper crown on her own bonce.

WINNER - Moments of ‘I love it when a plan comes together’:
People with Prader-Willi Syndrome are sticklers for routine, so my decision to move the dinner schedule around and switch Christmas dinner to Christmas tea-time was a big one. Luckily I made this determination several months ago (upon realising my husband would be working day shifts over Christmas), and worked out that this was the only way I could control the children, supervise the present-opening, taxi my parents, pick up Mum-in-law from the care home, and manage to cook a Christmas meal for everyone. Thus followed three months of careful negotiation with my PWS daughter, but the resolution was passed, and carried out successfully, without any sanctions, peace conferences, or declarations of war.

WINNER - Moments of utter relief: 
The welcome my husband received when he arrived home from his Christmas Day shift an hour early, just in time to join us for the meal.  My response to his ironic cry of: “Honey, I’m home!” involved me cheering, leaping up and down, and dancing around the kitchen. “This is just how I greet him when he comes home from work every day...” I told the assembled family, diving gratefully towards my first drink of the day. “It’s like the welcome I get in my head has come to life,” he clarified.

WINNER - Moments of pride and joy:
The Christmas cake (pictured), which my girl made at school before they broke up, and which had been nestling in its beautiful packaging under the tree. She iced it herself. Under supervision, of course. She was very proud. I could just about burst, and that was before I’d eaten any.

The tag read:
To mum and dad thank you for looking after me and for everything you do for me

I hope you enjoy it. 

Did she mean she hoped we'd enjoy the cake, or that she hoped we enjoy looking after her? It doesn't matter. The answer to both is yes.

Video is Cake - Frank Sinatra

Merry Christmas, one and all. And I’ll get round to saying Happy New Year sometime.

Tuesday, 22 December 2015

Clench

Today we decided to spoil the kids and take them to the dentist. It was much like any other Christmas family outing: it was expensive, the children got bored waiting for the main event, and my boy ended up being taken to the car to ‘think about his behaviour’.

My daughter’s typical Prader-Willi tendency to obsess over something and talk about it repetitively has been in overdrive lately. She’s been uttering her daily mantras of “Are my teeth going down?” and “I don’t grind my teeth, do I?” over and over like a buddhist rapper on speed. (For the record, she used to grind her milk teeth when she was little but stopped when she was about six, and has a lovely, non-worn down set of gnashers).

So in a sneaky pre-planned move, I made sure I was seen first today, in order to give my dentist the low-down on what she should and shouldn’t say to my girl.

With my new co-conspirator fully signed up, and my examination over, we called in my daughter for her appointment. And like a seasoned luvvie, my dentist hit her mark and looked her patient straight in the eye. “Well, you’ve been cleaning your teeth really well, they are absolutely fine, there is no evidence of any grinding, and they are not worn down at all!” she told her. “In fact, it wouldn’t matter if you DID grind them, which you DON’T, but if you DID, I would just make you wear a mouthguard at night, which is exactly the same as the retainers you wear anyway,” she added, in an excellent fleshing-out of her role.

I smiled, hoping this expert advice would be useful to me in my attempts to stop my girl’s dental-based perserveration. And we left, after wrestling our boy out of the waiting room, where he’d climbed over the chairs, pinched his sister, and been responsible for mid-to-severe levels of noise nuisance whilst we tried to pay.

Obviously, I didn’t tell my girl that I’d spoken to the dentist behind her back. And there was something else I kept to myself. Which was that the dentist had noted evidence that I was clenching my jaw and possibly...and it pains me to say this...grinding my teeth.

This will never be mentioned in front of her. NEVER, do you understand? Jesus, I’d never hear the last of it. Imagine if after all these years my daughter finally stopped saying: “Do I grind my teeth?” only to change it to: “Do you grind yours?”

Video is The Cure - Grinding Halt

Wednesday, 16 December 2015

Frazzle

She’d been on a Christmas shopping trip with her class. 

Yesterday’s quest had followed a similar life-skills/shopping expedition last week, when things hadn’t gone smoothly. All I need to say about the previous trip is this: she'd spent the money I’d given her for LUNCH on a book. Parents of non-PWS kids may gloss over this sentence. PWS parents will probably do a sympathy faint. (Her teacher sorted it out, in case you were worried). 

And sure enough, yesterday’s visit proved another occasion when her brain over-frazzled with the stimulation of a big shopping centre and the stress of making choices.

I’d told my daughter exactly what the money I’d put in her purse was for. She was under strict instructions to use the cash for the following: 
  1. Lunch (menu choice written down on a note in her bag)
  2. A Christmas present for her dad (a diary)
  3. A Christmas present for me (bubble bath)
[Trust me on this, she needs the specifics].

UNDER NO CIRCUMSTANCES was she to buy a book, or spend any money on herself this time.

A few hours later she arrived back at school having successfully shopped for a suitable dad diary, and having had a Maccy-Ds with her classmates and - as per her instructions -ordered herself a (relatively) low-fat wrap. 

But it was what else she’d bought that was interesting. She took a children’s magazine out of her bag, and looked at me. I raised an eyebrow.

“This is for me, Mum, but I didn’t buy a book - I bought a magazine which came with a free book attached!”

“I thought I told you not to buy anything for yourself!”

She looked stricken and stammered: “I did get you this...”

And presented me with a large bottle of water. 

I think it's funny today, I do, I really do. 

But yesterday I should have poured it over myself to wake myself up, catch myself on, and not do what I did next, which was to lecture her about listening to instructions, looking after her money better, and not being sidetracked when she was shopping for certain things.

Because I’d forgotten that she’d traipsed round a big shopping centre all day. Had had to make choices all day. Had had to deal with money, and change, and budgeting, which she doesn't really understand properly. How she'd worn herself out completely.

She was shattered. And now she stood there in floods of tears. Her anxieties were popping up one after the other like a game of Whack-A-Mole. She couldn’t contain them. I couldn’t contain them.

The emotional storm subsided. Well, hers did after a shower, hugs, and the lure of her pillow and duvet. I tucked her into bed, trudged downstairs, and sat recriminating myself, whilst she slept like a log.

Today she went on another trip, catching the bus with her sixth-form buddies and their teacher, and heading to Wetherspoon’s for the Christmas dinner she thought she was going to miss when it looked like she’d be in hospital.

And this afternoon she returned, triumphant. She had kept enough cash to pay for her food. She’d foregone her morning snack in order to be able to have the extra calories in her special meal. And she’d bought me a present, which I was not allowed to see.

Fuck knows what it is. I’m just pleased she’s in one piece. And that I am, too.


Song is The Decemberists - Foregone.

Monday, 7 December 2015

Cancelled

I’ve taken a deep breath.

Everything has changed.

A doctor (well, a ‘Mr’) from the hospital rang at 5pm. Just as my girl was tucking into her tea, and 30 minutes before we were due to head to her school for the pupils’ Christmas Show.

He informed me that the surgeons had been at their usual Monday multi-disciplinary meeting discussing the week’s upcoming operations. 

He said they’d looked at my daughter’s case and decided they want her to have a different type of scan before they carry out any surgery. They want clearer evidence that removal of the titanium rods in her spine is completely necessary. Why they decided to have this discussion now, and only now, just three days before she is due to be admitted for her op, is a mystery. I had no questions, nowhere to go, no room to think. I listened to him and felt numb.

It's been exhausting getting my girl into a reasonably calm and prepared state. Telling her that the op is cancelled, and not being able to say whether she will have to have it or not in the future, was like letting off a bomb in the house.

And yet, and yet, after the floods and floods of tears, the questions, the confusion, the waves of anxiety, the anger, and with her eyes red, her brain whizzing, and the planned upheaval to her routine totally upheaved, she wrestled herself into a state that could be describing as ‘getting a grip’. (Prader-Willi Syndrome Bingo Alert: all this happened whilst she methodically ate a low-fat Thai green curry, Activia yoghurt, and a bowl of grapes).

“The show must go on, sweetheart,” I told her, in a West End musical kind of way. “You have to be grown-up, because you can’t miss your Christmas show, and you can’t be crying.”

She didn’t and she wasn’t.

The show was what the show always is: amazing. One highlight was a lad called Ted, singing fantastically off-key at a high volume to Jona Lewie’s Stop The Cavalry with the added lyric: “Wish I was at home for...I’ve got an itch...mas.”

But it was the sight of my girl, doing the Jingle Bell Rock, just an hour or so after her world had shifted seismically, that hit me, that lifted me, that let me fill my lungs with oxygen again.

Everything has changed.

I’ve taken a deep breath.

Song is The Fall - Jingle Bell Rock


Friday, 4 December 2015

Barker

My teenage girl emerged from Santa’s grotto, clutching her present to her chest. My little boy followed behind her, handing his present over to me. I piled it on top of the sticker set, two teddies, and two overflowing ‘crazy cups’ we’d bought/won on the stalls at the school Christmas bazaar. These in turn were teetering in a Giant Jenga-style pile of coats, hats, bookbags, and a cycle helmet. My arms were beginning to ache.

“I’ve run out of hands!” I complained.

“We’ve got six between us,” nodded my boy, sagely, before running off to find his scooter, without helping me unload.

My daughter, the one who has announced that she doesn’t believe in God but still believes in Father Christmas, gave me a hopeful look. She’s got this whole “Santa has helper Santas so it’s not always the real one” thing going on, but I could tell she’d been quite convinced by this particular Santa’s spiel.

“Do you think that was the real Father Christmas, Mum?” she asked, her eyes shining.

A voice piped up from behind her. Her brother had returned, riding his scooter. “Nope," he told her, as he whizzed past. He looked back over his shoulder. "That was Mr Barker. I recognised his voice.”

Song is Sharon Jones & The Dap-Kings - Big Bulbs

Wednesday, 2 December 2015

Hint

This time of year I have to do my subtle hint thing.

My subtle hint thing is dropping felt tips and paper under my kids’ noses and ‘suggesting’ they might like to make me a birthday card, and that they won’t be going on their computer console/tablet until they’ve done so. It’s brutal, but effective.

So I got a slight shock when my son announced he’d already done it (I suspect after similar subtle hints from his dad) and my daughter said she didn’t need to.

Now, my girl’s choice of language was interesting. And, as it turned out, specifically correct. Because yesterday, when she was doing her weekly ‘practising shopping’ trip down the town with the school, armed with a few quid from me and a little list of groceries, she’d BOUGHT me a card from Poundstretchers. Off her own back. Without it being on her list. 

This seems such an inconsequential thing, but it’s not. It’s really not.

I’ll admit I was moved when I opened the card this morning. Then, when I realised my alarm hadn’t gone off and we were running approximately half an hour late, the only ‘moving’ thing going on was me trying to get the kids to school on time.

One last thing. In the interests of fairness, and the wish to express my perfectly equal gratitude for my children’s cards - I will share with you what my son made:

‘Supermummy’ on the front. 

A Minecraft war memorial and skeleton on the back.

And, inside: the ‘I Don’t Know Guy - but it is not you, Mummy’.



Video is Teenage Fanclub - I Don't Know

Saturday, 28 November 2015

Treasure

It’s the little things. The kindnesses. 

My girl is going to have a spinal operation in two weeks’ time, so she’ll be having some recovery time off school.

Luckily, her school Christmas Show is before the op, so she can still take part. But she’ll miss a planned class trip on the bus to have a Christmas lunch at Wetherspoons. 

“I really want to go, Mum,” she told me. I’d already done the usual Prader-Willi prep (checking menu, assessing calorie content, informing teacher of what was ‘allowed’). “I know, sweetheart, but it’s after your operation so you can’t, I’m afraid,” I told her. She wasn’t happy. 

Wind the clock on a few hours, and she came out of the school gate, beaming, and babbling: “Guess what, Mum? My teacher said that because I’m missing the special dinner with the class they’re going back again especially for me and everyone is coming and we’re going on the bus and it’ll be a nice dinner and they said it’s to welcome me back to school.”

“That’s lovely. What a nice thing to do.”

“And guess what, Mum, James gave me a special present because he’s having a birthday party but it’s a trampolining party but I can’t go because of my back but you told his mum that and James has got me a present instead and it’s a Smurfs DVD.”

They may be small kindnesses. But in anxious times, they’re treasure.

Song: Soul Brothers Six - Some Kind Of Wonderful

Tuesday, 17 November 2015

Removal

I put the phone down, and sat down. If I’d have had any brandy in the house, I would have necked one, despite me knowing that it would be bad to have booze breath on the school run.

The hospital had called with an operation date. The three month waiting list turned out to be a bit of an overestimation, and a cancellation has bumped my daughter up the queue.

The metal in her spine is being removed (I don’t know what titanium fetches at the scrap yard, but the NHS needs all the funds it can get). The titanium rods and bolts that were fused to her spine seven years ago, providing the scaffolding for the bendy bones to knit around and straighten up, are coming out. The nerve pain they’ve been causing should disappear along with them. And her posture shouldn’t be affected - the rods did their job a long time ago and are basically redundant. I feel like I should send them for re-training and give them help with writing their CV.

It’s December 11.  

I’m calm. I am.

I’m not.

Song is Patty Griffin - Hurt A Little While

Related posts:

Snakes
Straight
Phantom


Thursday, 12 November 2015

2P

Being mum to a special needs child means you get used to certain reactions from people. I call them the two Ps, which gives me pleasing opportunities to pun on ‘Two P or not two P?’. 

The first P reaction, or (P-action if you prefer, although that sounds a bit urine-based) is Pity.

I remember getting angry years ago when a woman did a double take and set her face into Pity Mode as she looked at my young daughter in her buggy, zonked out, strapped up in her restrictive body brace. 

I remember wanting to scream at her: “You don’t know anything about her life! She’s just tired, you haven’t seen her giggling and playing and singing! How dare you pity her!” 

I was a lot angrier then; I feel differently now. People who give you the pity face aren’t being unkind on purpose. It’s a minor irritation. It’s annoying in the way a wasp is annoying: seeing pity on someone’s face makes you want to swat it away, even though you know you’re bigger than it, it doesn’t know any better, and it can’t really hurt you.

The second P reaction is Praise. 

We all need a bit of positivity in our lives, and someone telling you you’re doing a good job can give you a much-needed boost. But it should be earned: being told you’re an amazing parent just because your child has special needs is actually pretty insulting, to both you and ‘ordinary’ parents.

The phrase: “I don’t know how you do it - I couldn’t deal with everything you have to deal with,” is a corker that gets wheeled out by good-intentioned people every now and again, and it’s as wrong as a wrong thing that’s gone wrong that you’re looking at wrong. 

Us parents of special needs children are no different from other parents. We just share a few experiences, that’s all. (I’m not belittling this - it’s a very strong shared bond). But we cock things up like all parents do, we snap and shout when we’re knackered, we can be too demanding, too lazy, too strict, too lax, too full-on, too hands-off, too much, too little. We’re just parents. 

Sometimes we can be pretty damn amazing, but that’s just because of, you know, love. We aren’t unique for loving our children. Or for thinking that they’re much more lovable than anyone else’s.

There are, of course, other reactions. Not all beginning with P. If I had 2p for every time I’d seen a look of disapproval from someone judging me and my daughter when she’s behaved ‘inappropriately’ in public (having a tantrum, not acting in a way people expect for her age), then I’d have roughly £15.86. (That’s a large amount of 2ps, but perhaps doesn’t illustrate my point very well. It happens a lot, OK? A lot).

I suppose the conclusion I’m rambling towards is this: people will react to your child throughout their life (for good or bad reasons). You can spend an awful lot of time tying yourself up in knots about this. Or you can accept that in the end, there is only one reaction that counts. How you react. That’s the important one. What isn’t important is what other people - usually people you don’t even know -  think. 

You’re allowed to get it wrong sometimes. But how you deal with it is how you deal with it. Your love is your love. And the rest of ’em can P off. 

Song is Ann Peebles - I Pity The Fool

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.

Sunday, 1 November 2015

Boobends

Half term is over.

Well, it’s over for my little boy, who's back at the coal face tomorrow, but not for his big sister, because her school has a teacher training day. Wish me luck in the morning with explaining that to a belligerent six-year-old who is already a black belt in “It’s not FAIR!”.

Much of the week has been spent tag-teaming with my husband, taking said boy down to the skatepark on a dragon-embossed skateboard given to him by my next door neighbour. He’s basically taught himself to skate in a week, thanks to YouTube videos. He’s also learned how to speak the lingo, with his sample shouts of encouragement to the bigger boys doing ramp tricks on their scooters being: “Yo, dude, that was epic!” and “You really nailed that, man!”.

My daughter went for her traditional holiday sleepover with her Prader-Willi Syndrome Best Friend Forever. They went to the cinema (see her incisive review here), went to Pizza Express for a leggero (a pitch-perfect, sub-500 calorie, PWS-friendly pizza with a hole in the middle filled with salad), they chatted, caught up with Eastenders, rang me giggling several times on my girl’s new mobile phone, walked PWS BFF’s dog, and had a generally lovely time.

My girl also attended a Halloween party with a couple of friends from school, and looked very glamourous as a glittery witch. We did the trick or treat thing last night, too, with the usual pre-planning (only visiting relatives and close neighbours, with plenty of no-sugar wine gums and low-cal snacks on hand ready to switch with the normal round of lollipops and Halloween-themed sweets). My daughter was quite happy with her ‘special treats’, my son was ecstatic with being slipped her share of chocolate eyeballs when the swapsies were made, and they were both in bed by 8.30pm, which was a blummin’ treat for me.

But it was only today that I realised that there has been an overarching theme, a narrative arc, a subject that has dominated half-term.

It’s boobs.

They first surfaced at the start of the holidays when my son showed an unexpected commitment to continuing his education at home, and asked to go on my computer to practice ‘typing words’ (see photo).

They reared their nipples in the middle of the week, when my daughter, in an escalation of a recent obsession with having dry skin, decided to rub her chest until it was sore because she was concerned about having ‘appendicitis in her breasts’.

And they unexpectedly took centre stage today when I took my mother-in-law back to her care home after having her over for Sunday lunch. An extremely elderly man beamed at me as I was walking along the corridor, and it was a moment before I realised his eyes were fixed firmly on my breasticular area. And then he uttered the immortal words: “Hmmr, argghatuban mmm, ggrgree. BANGERS!”

Oh God, I think I have seen my boy's future...

Song is Cornershop - Brimful of Asha. "Everybody needs a bosom for a pillow, everybody needs a bosom..."

Panned

“It was too loud, there was too much fighting, it didn’t have Tinkerbell, Captain Hook has two hands, and there wasn’t a story.”

That's my daughter’s review of Pan, the brash Joe Wright film that purports to be a prequel to JM Barrie’s tale of ‘The Boy Who Wouldn’t Grow Up’.

I would say we had found a worthy and succinct successor to Roger Ebert and Philip French.

I would say that, but she also thinks that Nativity 2: Danger In The Manger! is a masterpiece.
Song is Abraham & The Casanovas - Hook & Boogit (or Hook & Boogie)

Monday, 12 October 2015

Aliked

Is it wrong to...well... stalk someone else’s five year old boy just so he has more opportunities to cuddle me, give me a kiss on the cheek, and tell me he loves me with ‘all his heart’?

Am I wasting my time by seriously considering inventing an Anti-Fit hack to my Fitbit watch, and introducing a ‘Pro’ setting (standing for ‘Prosecco Consumption?)

Am I a bad person for wanting to refer to our lovely, but amusingly-monikered New Forest Holiday Park not by its actual name (Sandy Balls) but by my own, less polite version (‘Itchy Bollocks’)?

Was it my own silly fault that when taking a woolly gang of alpacas for a walk around the caravan park (yes, you heard right) I fell over a bin as I backed up trying to get a shot of them in The Beatles’ Abbey Road record cover formation?

Are alpacas even allowed to use a zebra crossing?

These questions are all burning ones. But the most flammable query on my mind today after returning from a weekend away in the company of a special tribe of special kids, special young people, and their special families, is this: Could we have had more fun?

It was our second Prader-Willi Syndrome Association UK family weekend. And the stress of the car journey (“Are we nearly there yet? It’s taking a BILLION years!”) melted away as we drove through the trees to our miniature home on wheels.

A quick warm-up and scoff of the ‘here’s one I made earlier’ meatballs and spaghetti tea,  and it was off to the Activities Room to meet the others. There were babies, toddlers, teenagers, adults, little ones that had grown since the last time we saw them, new faces, mums and dads and sisters and aunts and nans and grandads, and we had Maggie, Karen and Sharon from the PWSA UK, working hard to make us welcome and entertain the troops.

Events were spread over the two days for people to pick and choose and pop along to if they wished - and it seemed like everyone came to nearly everything. Walking the alpacas, with their 80s footballers’ perms, was the most surreal activity. Visiting a country park featured our most chaotic moment (when my daughter decided at the last minute to back out of the steam train ride, thus sparking a low level anxious rash of wavering PWS passenger refusals and readmissions). Making masks and decorating clay pumpkin lanterns provided the most data on how much felt tip my son could cover his face in. Likewise, the soft play area proved it is the most reliable way of making a small child sweat like a bastard. Swimming made my goggles mist up as I took in the sight of our motley crew of amazing children, paddling and splashing - some needing enough flotation devices to sail to America on, and others swimming freely.

A group of us met up for dinner in the restaurant, and my girl sat opposite a young man with PWS who tried to outdo her on the spice front in a Scotch Bonnet v Jalopeno Chilli Pepper face-off. (Neither even broke into a sweat).

Handsome little Clive politely gave out world class hugs (hence my aforementioned stalking). Beautiful little Polly told me solemnly how she had been “so looking forward” to holding my girls hand, promptly did so, and didn’t really let go. (I had to keep reminding my daughter that she was attached to a small person when she approached a gate or a door).

Our family won the quiz, principally because I brazenly cheated and asked friends on social media to identify a cartoon character that no-one could get. “Check the back of the paper for rules, and if there aren’t any, we can Google!” I told my daughter, imparting a valuable life lesson. ‘Sindbad’ (no, me neither) earned me a bottle of plonk, which my daughter strickenly dismissed as ‘a Mum prize’, so Maggie stepped in and gave her a doodle book, and all was well. 

Thank you, to the PWSA UK team for organising and running the weekend. Thank you to everyone who came and put a constant smile on my face (you see, no, it was not entirely down to hitting my Pro-secco targets with aplomb). 

Thank you for making my daughter happy. In life she is often different. Here she was alike. And she aliked it a lot.

Video is The Beatles - Abbey Road medley

Friday, 9 October 2015

Date

He asked her at school.
She told me about it when she got home.
"Kevin says he wants to go on a date with me."
I put my poker face on. Which was hard, because I very nearly burst into tears. Good tears. 
"What did you say?"
"I said yes, but I'd have to ask my mum."
I was struck by a sudden thought.
"Do you know what a date is?"
"Er, no."
I explained.
"Well, if someone likes another person, they go on a date. It just means going somewhere nice together, like the cinema, or to a restaurant."
"Oh."
"So that means Kevin must like you. Do you like him?" I already knew the answer to this: she's had a soft spot for him for a while.
"Yes."
"I'll call his mum and we'll sort it out."
She beamed. I beamed. It was very beamworthy.

It's two days later. They've swapped mobile phone numbers (my girl got her first phone for her birthday last week). He calls her from his taxi that takes him to the special school class they both go to. They have faltering, repetitive conversations. He texted her and called her 'Sweetie'He asked if she wanted to be his girlfriend and, if so, why? She texted back: "Because nice."

I'm happy that she seems quite happy about all this. 

Why?

Because nice.


Sunday, 4 October 2015

Seventeen

My girl is 17 years old today. I knew this in advance, of course, but it still feels astonishing.

She’s ensconsed on the sofa watching Charlotte’s Web with her two sleepover friends. PWS BFF (Prader-Willi Syndrome Best Friend Forever) hasn’t seen it before, but she has just announced that “I know the spider dies”. ASC BB (After School Club Best Buddy) has yet to reveal any other spoilers.

We’ve already given my girl’s new Taylor Swift LP a spin on the turntable. The vinyl version of 1989 was top of her birthday list, thanks to a recent sudden fascination with our own record collection. I’m quite happy with her choice; it’s a hell of an improvement from last year’s musical favourites, One Direction. 

Other presents include a Thomas The Tank Engine Story Collection and a mobile phone, which kind of says everything about the idiosyncracies of our amazing, anomalous daughter.

The two PWS girls have been in food heaven, with some carefully managed treats: they demolished some healthy chicken tikka in the curry hut last night (whilst my son overdosed on not-so-healthy mango chutney). We took over the restaurant: there were 14 of us, including my mum and dad, and a couple of LOTIWTSW (Lovable Old Trouts I Went To School With), their other halfs and offspring. No-sugar ginger beer was drunk, candles on the cake were blown out, and slices of spongy Minion Dave cake were substituted with Weightwatchers caramel cake bars.

The girls conked out on their airbeds in my daughter’s room at around 10.30pm last night. My boy, filled to the brim with poppadoms, didn’t even attempt to bother them. Impeccable behaviour at home from him is so unusual that I can confirm we saw flying pigs in the night sky, soaring above a hell that had, indeed, frozen over.

It was a perfect evening, apart from England crashing out of the Rugby World Cup. Mind you, perversely, even that sporting disaster made us smile: the kids had taken over the telly for an after-curry film showing, so us adults were huddled around my computer watching the game. After the second Australia try, my husband stomped off to join the girls in the other room with the immortal words: “Bugger this! I’ve had enough. I’m going to watch Cinderella!”


Song is The Beattle-Ettes - Only Seventeen

Wednesday, 30 September 2015

Fiesta

I don't always talk about Prader-Willi Syndrome on this blog. Sometimes I like to take a side-step. Here's the best side-step I ever took:

The year is 1989. I was 17, and on one of my first dates with a new chap I was a bit smitten with. When I’d mentioned to him in passing that I wished I’d have known The Pogues were headlining The Reading Festival, he’d declared that it wasn’t too late to go, and had avowed to “get us in by hook or by crook.” Which he did, by ‘renting’ hooky wristbands for a fiver from a crook at the gate. This impressed me no end.

I remember walking through the gate, being hit by the smell of leather jackets and stale sweat, trying to contain my excitement at a) our being smuggled in ‘illegally’ and b) the prospect of spending a music-filled day with a bloke who was not only funny and good-looking, but who seemed to be showing signs of being a bit smitten with me, too. (This was a revelation, I can assure you).

The Pogues were due on. I made the inexplicable decision at that very moment to buy a copy of If I Should Fall From Grace With God from a stall. An LP, not a CD. And I repeat, the Pogues were due on. As we made our way forwards to the general mosh area, I clutched the album (encased in a white carrier bag) to my chest and uttered, defeatedly: “Oh, bugger.” Chalking it down to experience, I stuffed it down the front of my denim jacket, wistfully realising this was probably the last I’d ever see of it, and joined in the roar as Shane and the boys shambled onto the stage. I then jumped around for the next hour and a half. It was absolute, marvellous mayhem.

When the band finished the set, the crowd spat us out, hot, happy, and hoarse. We stood there, battered, grinning, hair damp with sweat, clutching eachother’s hands. He kissed me. I didn’t know where I was anymore, but it was somewhere good.

I recovered myself and remembered my ‘new’ album. Laughing, I fished inside my jacket and pulled out the carrier bag. It looked unexpectedly uncrumpled. I stuck my hand inside and fished out the LP, and we both looked startled. The corners were square, the white of the cover was still white, there were no squashed bits, dents, folds, dirt, or damp. If I could have successfully done an impression of heavenly choirs of angels singing I would have. It was pristine.

I’ve still got it. It’s still in very good nick. Better nick than this lady of easy leisure and her rambling boy of pleasure, if I’m brutally honest, but that’s just the result of too much kalamari and macaroni. The miraculously surviving LP might well get a spin tonight on the occasion of our 20th wedding anniversary. Anyone know a Leonardo who plays accordione?

Video is The Pogues - Fiesta

Saturday, 26 September 2015

Snakes

We drove back from the hospital. A theatre emergency had called my daughter’s consultant out of his clinic, which meant that an appointment and X-ray that should have taken around one hour ended up taking four. But we were on our way home.

My girl chatted away, asking her usual litany of questions, which I did my best to answer, although my mind was racing. I’d just been told something unexpected and frightening. She’s got to have another operation.

It was there again: that low-level panic I remember from before. It sat in my stomach like a sleeping snake, ready at any moment to unfurl and slide up and squeeze me by the throat. 

She, on the other hand, was happy. “Dr Gavin said that if ever there was anything wrong later my metal rods might have to come out of my back, didn’t he?” she reminded me, recalling, pretty much word for word, a conversation she’d had seven years ago.

“You’re right,” I answered, keeping my voice neutral and calm. Putting my game face on.

When my daughter was 10, she had a spinal fusion. Titanium rods were bolted into her back to help straighten, anchor, and fuse her spine, which had been bent by scoliosis into the shape of a C. We spent an unbearable, unthinkable day in a hospital room waiting to hear if her if her operation was a success. The risks were terrifying: fractions of millimetres were involved, and if something went wrong, paralysis was a possibility. But the surgeon came out of theatre, sweaty and exhausted, and smiled, and the relief, the relief, the relief.

So now we face a repeat. Like a one-off Christmas special after that Bafta-winning drama of seven years ago. The metalwork needs removing. She’s been having pain for about a year, very occasionally at first, more frequently in recent months. The high pain threshold from her Prader-Willi Syndrome means that if my daughter says something hurts, the chances are anyone else would be in agony - so we got it checked out. And after months of infuriating delays and clinic cancellations yesterday we finally got our answer. Her CT scan results revealed the bolts at the top of her spine are pressing on nerves, which is causing the pain across her shoulders. They need to come out.

“Will my back be bendy again?” my girl asked. She was wide-eyed, not with snake belly panic like me, but with excitement, partly because she’d just watched a Topsy & Tim episode where Topsy had her appendix out, but mainly because she kind of likes hospitals.

“No,” her specialist explained. “The spine fuses after the operation, so it’s already set. The bone is straight and the metal isn’t actually doing anything now, so no, your back won’t be bendy if we take it out.”

She nodded, satisfied. “Will I get lots of presents when I'm in hospital?” The girl can prioritise, I’ll give her that.

It’s a two hour op, not a seven hour one like when the rods were inserted. The waiting list is about three months (although I’ll believe that when I see it). She’ll have to have six weeks off school.

I’ve calmed down a bit. We can do this. When I say ‘we’, it’s me and her dad I’m trying to give a pep talk to, because I already know she can do it. We deal with things the best we can in her determined, amazing wake.

I’m letting sleeping snakes like, for now.

Song is Etta James - Crawlin' King Snake

Tuesday, 8 September 2015

Landing

This is the smiling face of my sixth-former after her first day back at school.

It was an unexpected relief after the anxious holiday build-up.

She’d been fretting and worrying about changes. About being in a different year, having a new classroom, a new teacher, new classmates, a new timetable, and new non-uniform rules to contend with.

I’d reassured her by pointing out that everything wasn’t actually completely ‘new', as she’d spent the last half term before the holidays joining the sixth-form special school satellite class for taster days every Friday. (And anyway, half of the class were in her class last year, or go to her Sports Zone club with her, so she knows them well). 

I say ‘reassured’, but what I actually did was wade after my daughter as she hopped from one stepping stone of worry to another.

This anxiety-hopping is actually quite a skill; just when you think you’ve steadied one landing spot, she’ll spring onto the next. Only one thing is guaranteed: the line of stones is never straight.

So we had a few slips, wobbles and splashes in the days and nights leading up to the start of term. 

But we made it across to the other side. She took the final leap, and...

“We’ve got a sixth form planner, Mum, and we have to write everything in it now because we’re more grown up and independent, Mum, and look, I’ve written in a teacher training day, and the presentation evening, and there’s my name and address in the front and this is a list of what we did today, and parents have to write something in if you need to tell the teacher because this is the way to communicate, and we’re still going to the farm but on a Thursday, and swimming is on a Friday, and we’re going to college on Wednesdays, and there’s a letter for you, and look, I’ve put down what we did today, and look, the teacher said that she was pleased to welcome me to the group and look, she wrote I was a star, Mum, a star.”

...she had a good landing.



Video is Paul Revere & The Raiders - (I'm Not Your) Stepping Stone

Tuesday, 1 September 2015

Passengers

We haven’t managed many what I’d call ‘proper trips out’ this summer holiday. Apart from a holiday club visit to Wicksteed Park *grits teeth* where I was in charge of my anxious PWS teenager, my Zebedee-like six year old boy, and two of his over-excited school buddies. (Severe Post Traumatic Trip Disorder prevents me from saying any more about The Outing That Dare Not Speak Its Name without falling to the floor in a sobbing heap).

Today, however, we went on a visit to the Nene Valley Railway. As always with a PWS person in the family, there were a couple of issues. My daughter had been pre-warned that the Thomas The Tank Engine train is currently out of action for repairs/refurbishment. But it wasn’t until we checked the website just before we set off that I realised the passenger engine in service today was a diesel, not a steam engine.

This was enough to set the mercury rising on my girl’s anxiousometer, but a quick negotiation - emphasising that we’d return when Thomas was out of train hospital so we’d get to go to Nene Valley twice - was enough to calm things down.

And, discounting the odd panic over cameo appearances by bin wasps, and worries that the train would be too noisy (it wasn’t - the emergency earplugs packed in my magic handbag were not required), we just about managed Happy Family Fun, marred only by a tantrum in the car on the journey home from a certain small boy who needs to learn how to lose Top Trumps gracefully.

The train was impressive (I think it was a Class 14, if that means anything to locomotive nerds out there). We seated ourselves on springy bench seats in a private Hogwarts Express-style carriage off the main corridor, spread out our picnic on the dining table, and supplemented it with no sugar Fruit Jets for the children and a pint of Nene Valley Railway Ale for the adults.

We've got some nice photos. The kids have got stamped souvenir tickets. And they might even remember our day next week when they go back to school and have to write down what they did in the holidays. 

Yes, next week. All of you parents out there who’ve been gleefully updating your social media accounts with details of your kids going back already can do one. In this neck of the woods we’re in the seventh week, people. The seventh long, long, week. It’s lovely to spend time with your children. But not that much, FFS.


Song is The Prodigy - Diesel Power

Sunday, 23 August 2015

Recall

Remember the film Total Recall? 

The one about a secret agent who has his memories altered. I mean the original one - you know, the 90s one with Arnold Schwarzenegger flexing his muscles and looking pained as he strained to remember things. Genius piece of casting, that, because Arnie always looks pained as he strains to remember things, in every part he ever plays. And in real life.
(Incidentally, on mentioning this to my husband, he displayed a very specific total recall of Total Recall, going a bit dreamy and murmuring: “Ah yes, there was a woman in that with three boobs. Three!”).

The film popped into my mind because I’ve been thinking about how my own memories have been altered.

Let me explain: when your child is diagnosed with Prader-Willi Syndrome, your world is turned upside down. I know I felt devastated, terrified, sad, confused, and angry. I know that, but I’ll never properly feel how I felt then, because my memories have been changed by future events. I’m not sitting in a darkened room, weeping beside a bed-ridden girl who can’t walk or talk, which was - in my post diagnostic madness - kind of what I envisaged life might be like. What I’m doing instead is telling my 16-year-old daughter to stop quizzing her brother about whether or not he likes spaghetti bolognaise, and laughing at her incomprehension at the idea he doesn’t find the subject quite as fascinating as she does. 

I can see my memories of those bleak first few weeks, but they’ve been drained of their power. I’ll never forget them, but they’re so much easier to look at, now they’ve got no juice left.

Six years ago, I imprinted some monster memories in my bonce when my daughter had two spinal fusion operations to correct scoliosis, and we suffered the agonising wait to find out if everything had gone smoothly and none of the nightmarish possible complications had occurred. I’ll never forget those memories. But they don’t have the clout, the oomph, the welly they had when they were being made, because everything turned out OK in the end. They’ve been un-clouted, de-oomphed, and welly-wanged.

Last year, there was another memory set (there always is). I thought a series of wild, sleepless nights would be carved into my brain forever as my girl was caught in the throes of a then undiagnosed mood disorder, causing her personality and behaviour to change dramatically. For a short, hysterical time, my sweet daughter did previously unimaginable things like turning tables over at school, trashing her bedroom, and swearing. Swearing, from the girl who, if she stumbles across a non-radio friendly version of a Jessie J song on YouTube, tuts: “Jessie, I’m surprised at you!”.

But getting the right professional help, and the right medication, miraculously turned the problem around, brought our girl back, and in turn has made those memories less visceral. 

I suppose what I’m trying to share is this: if you’re stuck in a place where you feel like you are just churning out a slew of bad memories, don’t panic.

Remembering a time you’ve been punched in the chest doesn’t hurt so much in retrospect, once you also remember how you got your breath back.

Song is PJ Harvey - The Faster I Breathe The Further I Go

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.