Thursday, 31 December 2015


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


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


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


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


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


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