Day 1

I didn't expect the day before my daughter's spinal op to be so much fun.

Five minutes after we checked into the teenage ward, we were  invited to the 'Bubble Show' next door in the younger children's area. Bubble Dan and Bubble Janet had a big donut-shaped trough of liquid, some de-stringed badminton racquets, a less-than-consistent ability to produce giant bubbles, and completely horrifying levels of enthusiasm. They were like Rod, Jane, and 'we don't like to talk about Freddy since that investigation'. My girl loved them. I had difficulty stifling my hysterics. Then they made me into a 'human bubble tube monster'. I still smell of Fairy Liquid.

We spent the rest of the afternoon getting our bearings; chatting to nurses (as they took blood and did 'obs'); playing board games; and completing a One Direction jigsaw dating from before the Harry and the boys' balls had dropped.

It was discovered that there was free wi-fi. "This is completely AWESOME!" was my girl's response, already firing up Topsy And Tim and Eastenders on the iPlayer.

It was only when I took her into the wet room to shower her tonight that her anxieties began to fizz a little. She was tired, excited, and a little bit overwhelmed. But she held it together. Struggling to get her to listen, stand still, and turn as required, I soon realised my clothes would soon get soaked, so I took the easy option, stripped off, and joined her. Which she found fecking hilarious, principally because of my 'wobbly' tummy. Thanks, darlin'.

She's nil by mouth from midnight. And first on the theatre list. She's announced she wants a late breakfast and lunch "as soon as possible after I wake up, because I am definitely not missing out, no way".

She's asleep next to me. I'm perched on a plasticky miniature sofa bed which I fully expect to lose a finger to later when I muck up the pull-out procedure. (The last time that sentence was uttered, I didn't lose a finger, but I did get pregnant).

It was just the consent form that made me wilt. The risk bits. The words the surgeon pointed to so they weren't said out loud in front of my girl.

Sod it. I'm gonna think of bubbles, boy bands' little bollocks, and catch-up dinners. And just carry on looking at my girl. Here, fast asleep in a dark, noisy ward, cuddled up with Toffee Bear (a veteran of the 2008/2009 original surgeries), in her new, bright blue nightie, a big day ahead of her.

Big days come around and we've got through them before. We'll get through this one, too.

Song is The Small Faces - Don't Burst My Bubble

Ready

It’s here. My daughter’s spinal op is all set for tomorrow.

Well, at least, as long as it’s not cancelled at the very last minute, which is something I'm refusing to contemplate. We’re about to head off to hospital, as we have to report in today. If they say my daughter’s op is off, then I shall simply stick my fingers in my ears, tra la la for a bit, and possibly stage a sit-in.

Her anxiety levels seem relatively low. But she does like hospitals.

Seven years ago I spent a terrible, interminable day waiting as surgeons cut my daughter open, inserted titanium rods and bolted them onto her spine to act as scaffolding to correct her scoliosis.

Tomorrow, I’ll be spending two hours fretting whilst they remove the metalwork to ease the nerve pain she’s been feeling intermittently for the last year.

My tactics this week have been simple: I’ve worn myself out going for long swims and long walks. I’ve clocked up 25,000 steps a day, and when my head has hit the pillow at night I’ve been so tired that I’ve instantly dropped off into oblivion.

I’ve got a feeling that tonight I won’t get a wink. I’ll have a camp bed by her hospital bedside, and the worries I’ve been burying will surface and swirl.

Maybe I’ll take my trainers and pace around the hospital corridors.

She’s ready. I’m going to have to be.

Song is Aretha Franklin - People Get Ready

Work

My daughter has worked out the world of work.

She and a fellow pupil have been undertaking work experience one morning a week at a posh health spa. Accompanied by their teaching assistant, they’ve been shadowing and assisting staff. Their duties have ranged from cleaning the bedrooms, sorting the laundry, helping in the café, and folding leaflets in the office.

The spa staff were very kind from the start. My daughter came back from her interview with free samples of shower gel and posh soaps, which the ‘nice lady’ had told her to keep for herself and ‘under no circumstances‘ let Mum nab them. 

“Don’t think you get presents at every interview, sweetheart,” I told her. “Why not?” was her reply. (Yes, why not? Sometimes I think the world would be a much better place if we all followed her particular brand of logic).

The first week was her favourite. The nice lady had called the school, apologising profusely because she couldn’t be there for the first day. “Can they start properly next Thursday? And please feel free to come along today anyway, but just use the facilities instead.” And so it was that the teaching assistant, my girl, and her classmate ended up going swimming, hopping into the jacuzzi and having a toasty little sauna session, before heading back to school.

The next week, the work started in earnest. And every Thursday since, she’s been getting herself dressed up in black and white (a smart pair of black trousers and a crisp white shirt, with some black Sketchers to keep her feet comfy) and spending the morning learning about the workplace. The Sketchers were a substitution, swapped sharpish after her smart patent flats gave her horrendous blisters the first week, which she kept entirely quiet about until I took off her bloody socks that evening. That PWS high pain threshold thing is pretty mind-boggling, sometimes.

My girl is very proud of her efforts. “My teaching assistant said I was very grown up and she trusted me enough to leave me with the member of staff on my own, because she knew I wouldn’t be silly and keep sitting on the beds, like NAME REDACTED did,” she explained.

She looked at me and grinned. “And I can be trusted, Mum. Not like NAME REDACTED who got the sack from their work experience because of being rude and attitude. Can you believe it?” I'd met NAME REDACTED, so I could actually believe it, quite readily.

Things have run smoothly since, with some hiccups navigated well. "They offered me a biscuit when I had a cup of tea and I said 'no. I'm not allowed'. I did well, didn't I?" 

The only thing I wish hadn't happened was staff informing my daughter that she'd been cleaning up the bedroom of somebody famous: Cindy Beale from Eastenders. Now I vaguely remember Michelle Collins being Cindy way back in the day, but I haven't watched the soap in years. Apparently there's another Cindy in it now, and my girl got in a pickle about exactly which Cindy it was, who was who, who had stayed, who I meant, who she meant, and I can't even be bothered to go into the exact ins and outs of it, but put it this way, that's five hours of conversation that my life would have been better without.

Cindy effing Beale aside, the experience has so far been a success. I asked my girl what she thought of her work placement now that she'd been doing it a few weeks.

“The housekeeping is all right, I suppose, but it’s very tiring,” she explained. “I don’t think I’d want to do that for a job. It’s really too much like hard work.”

Song is The Godfathers - Birth, School, Work, Death

Lakes

We arrived home late last night, feeling like dumbphones with only 1% battery life left. 

We shoehorned the kids into bed, sank into the sofa cushions, chinked our mugs of tea together, then said ‘sod it!’ and opened the bottle of wine we’d won in the tombola. You don’t always need a proprietary charger to top up.

The weekend was worth celebrating. At the last minute, after changes to our daughter’s planned operation date, we’d been able to attend the PWSA UK (Prader-Willi Syndrome Association UK) family holiday in the Lake District. And we had, indeed, attended the heck out of it.

Fifteen children, young people, and adults with PWS (ranging in age from six to 38) and 29 assorted mums, dads, siblings, carers, and PWSA UK staff had gathered together in a lakeside holiday camp at Windemere. 

We were a crew. A motley, out of the ordinary crew, but a crew all the same.

There were many highlights. 

Thanks to a whispered warning from our admirable Admirals, Maggie and Sharon from PWSA UK, we did an urgent clearing away of the complimentary chocolate coins and Flumps left on the pillows of our caravans by well-meaning holiday park staff.

My girl, the teenager with PWS who’d been video calling her little gang of fellow PWS girls in advance, met up with her posse. There was shuffling, shyness, excitement, presents, awkwardness, half hugs, and lots of smiles. We let them loose in the caravan park arcade with a mountain of 10ps and a coin hungry grabber machine. Later, they sang along to the songs in the game of music bingo.

If you were my daughter, the best bit of Saturday’s safari zoo visit was a giant otter chomping on a big fish just inches away from us behind a glass barrier. If you were my son, it was a monkey having a poo. But my boy, my funny, bright, cheeky little monster of a boy, actually behaved quite impeccably throughout our stay. He was ‘yes please’-ing and ‘no-fankyou’-ing so often and so politely, that he sounded exactly like Kathy Burke as Perry, in Harry Enfield’s Kevin The Teenager sketches. I dreamed that one of the other mums was called Mrs Paterson.

In the clubhouse, Scottish Brandon, a Dunfermine-supporting 28-year-old with PWS, strode onto the dance floor to do a spectacular solo sing and march-along to I’m Gonna Be (500 Miles). Reader, I joined him. Reader, gin may have been involved.

My girl didn’t want to dance when she saw her PWSBFF (PWS Best Friend Forever) was sitting down. “I’m going to talk to her instead,” she told me solemnly. She meandered over to her buddy, ignored the three empty chairs next to her, and sat in the one seat nearby that had its back to her friend. I looked at the scene: she was quite happy, her pal was quite happy and they thought it was perfectly normal for her to choose the only seat facing the other way. With a spot of gentle suggestion, my daughter turned the seat around, and the pair sat in companionable silence. Later, they danced. There was a lot of giggling.

We took over the camp swimming pool on Sunday, the more warm-blooded of us remaining in the not terribly warm water, others sneaking out for a quick sauna blast.

There were meltdowns and anxieties and misunderstandings and the usual food faffs, but those specific to our weekend home, Deer Park Caravan No 44, were minor.

My girl and her dad sat at a table in a lakeside playground on Sunday afternoon, with the remaining hardcore of the PWS crew. I could see them from above, just through the trees. Inexplicably, possibly hypnotised by golden glow of sunshine and general happiness, I’d volunteered to accompany my seven-year old lad on a Treetop Walk, attached by a safety line to wobbly ropes and bridges seven metres above the earth. There was just the small matter of the 250 metre zip wire plummet to end the aerial challenge. And plummet my fat arse did, all the way to the finish.

The weekend had zipped by. But our safety net hadn’t been wedgie-inducing harnesses. It had been eachother. 

Video is The Proclaimers - I'm Gonna Be (500 Miles). See the crowd, right, that was just like me an' Brandon. Aye.

Nemesis

I have a nemesis.

It’s an ice cream van. Or rather, the driver of an ice cream van, because I don’t think an actual van can be an arch-enemy. That’d be weird.

My antagonist - let’s call him Mr Softee - appears outside my house almost every day, with his chimes chiming.

When you have a child with Prader-Willi Syndrome, this is not a good thing. People with PWS - with their insatiable appetite, obsession with food, and need for a strictly controlled healthy diet - don’t need brightly-coloured, fattening food-containing vehicles pulling up outside their window. Brightly-coloured, fattening food-containing vehicles WITH CHIMES.

My nemesis been doing this for ages. The reason is inexplicable because I have never once seen any of my neighbours buy an ice cream. He sounds his tune (of course it’s that ‘A Pizza Hut, a pizza hut, Kentucky Fried Chicken and a Pizza Hut’ one, which only compounds the issue), parks for a few seconds, turns round, and drives back out of our road, not giving anyone the chance to get out of their house and go and buy anything. So why sound the farking chimes? 

I know there’s not enough time to get to the van because believe me, I’ve tried. The closest I got was chasing down the road just as he turned out of the close. I was trying to get to him to ask him why he comes, why he chimes, and if he could possibly do it somewhere else so that he doesn’t put the idea of ice cream into my daughter’s head at 6.45pm at night.

I might get a deck chair out tomorrow. I might station myself there, and tell him that this patch is no longer safe. That he can flake off, or risk getting one in the Nobbly Bobblies. 

Song is Jon Spencer Blues Explosion - Ice Cream Killer

If

What if we’d have known? 

When it became apparent, soon after she was born, that our baby daughter was struggling, there was a rumbling under our world. When she was diagnosed three weeks later with Prader-Willi Syndrome, it was a seismic shift. The earth cracked, and swallowed up our future. I had a fingertip grasp on the cliff edge of solid ground. 

It wasn’t supposed to be like this. Why hadn’t I known? Would it have helped?

During my pregnancy I was unaware that anything was wrong. It wasn’t a blissful time - my only truly joyful pregnancy was my first, and the joy evaporated when I went for my 12 week scan and the sound of silence where there should have been the sound of a heartbeat didn’t feel like silence, it felt like thunder.

So when I fell pregnant with my daughter there was a new feeling: fear. The possibility of another miscarriage loomed large and the first trimester was an anxious time, waiting for the next scan, trying to dampen down my hopes, in case this baby wasn’t strong enough to stay.

But time went on. We’d seen the baby’s heartbeat on the monitor. My fears began to subside. We’d had our ‘knock’. Life was back doing what it was supposed to. I was ready. I was so ready.

But I wasn’t. We weren’t. 

What if I’d have known?

When I first asked myself that question, I thought that maybe it could have helped. Being prepared is good, isn’t it? Knowing that her birth, her growth, her life, would be different  - and by extension so would our world - that would have helped, surely?

It’s a fleeting thought. Because I realise that if someone had told me what supposedly lay ahead, I’d have been a wreck. I’d have been beside myself with worry and anger and I don’t know if I could have coped. I’d have been terrified that I didn’t have the strength to deal with something so huge. 

But all parents can never properly prepare for their child. Of course they can’t - they haven’t even met yet. 

When our girl was born with PWS everything changed, and we had to change with it. And in some ways, it's like the websites and the books and the leaflets say. But in other ways it’s nothing like that. We could have had that information a few months earlier, but I’m glad we didn’t. I’m glad we didn’t know.

I’m glad we waited for her to teach us all about it. 

Song is The Bluetones - If

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.

Hatched

A plan has been hatched. I had nothing to do with it.

My daughter’s long-awaited spinal op had finally been booked up to take place in May. On Friday 13th to be precise. And nope, I didn’t care about it being ‘unlucky’, because if I really believed that particular combination of day and date had some sort of cosmic, mystical, damaging power, then I’d be an idiot.

Arrangements had been made. Time had been booked off work. School had been informed. My daughter had been primed. And then came the phone call: it’s been pushed back a couple of weeks. 

She took it well, considering. I explained that everything was going to happen in EXACTLY the same sequence, but just a fortnight later. And my girl, the one who hates it when plans change, was grudgingly accepting. 

I was pottering about in the kitchen, thinking about how she’d coped so well, and how I’d only had to deal with a question barage for a day or two (small-fry in the Prader-Willi parenting book, I can tell you).

But then I heard something that made me drop my soggy teabag (this is not a euphemism, although it sounds pleasingly rude).

My girl was round the corner, chatting on her tablet with her PWS posse. The ‘gang’ started off with just my girl and her PWS BFF (Prader Willi Syndrome Best Friend Forever) but has since expanded to include new members: PWS ABFF (Prader-Willi Syndrome Additional Best Friend Forever) and PWS AABFF (Prader-Willi Syndrome Additional Additional Best Friend Forever). The four of them do this Google Hangout thing, where they video call eachother and have stilted, funny, chats, where they talk for a bit (usually about their dinner), wander in and out of the conversation, hang up suddenly, walk off, rejoin the chat, giggle, show eachother their books, go silent, quiz eachother about school, and generally just...well...hang out. Time limits sometimes have to be imposed because they can’t half go on. But this can be difficult to police, because my daughter frequently talks to herself when she’s on her tablet, and sometimes it’s hard to tell if she’s chatting to everyone or no-one. 

But today, it was the gang, and they had a moment of genius. I’m still not sure which of them jumped out of the bath shouting “Eureka!”, but whoever had the lightbulb moment deserves a medal.

“Mum?” my daughter shouted. “Can we go on the Prader-Willi holiday?”

The PWSA UK (Prader-Willi Syndrome Association UK), a fabulous charity offering invaluable help and support to people with PWS and their families, has organised two family weekends this year, but we can’t make one because we're going to a wedding, and we can’t make the other because it clashes with my daughter’s op. But hang, on, wait a minute, now the op’s been shifted - and as the girls had worked out for themselves - then we could go, couldn’t we?

I checked the holiday camp’s website for last minute deals. A suitable caravan was spotted and booked before my credit card had chance to groan.

“Yes, sweetheart, we’re going.” She beamed. The girls squealed.

All of her Google Hangout club are going. All of them. The Four Amigos. The Prader-Willi Beatles. 

I just made the booking. The band came up with the idea.

Video is The Beatles - Magical Mystery Tour