Time

Today’s blog is something wot I have learned.

It’s about having kids. It’s not mind-blowing stuff, but it is the truth as I see it. If at any point this sounds like some kind of self-help mantra, give me a virtual slap, will you?

Anyway, it’s about when you decide to start a family. If you decide this is what you want, that is. And if it’s not just thrust upon you unexpectedly, thanks to too many Tequila slammers and your subsequent inability to open a condom packet.

You may well have very good reasons for putting off starting sproglet manufacturing. There are still lots of holidays to be taken, wild parties to have, and careers to forge, after all.

But you do need to consider something quite carefully. It isn’t always simple. In fact, a lot of the time it goes wrong. 

Miscarriages, I’ve had a few, but then again, too few to mention. And that’s the problem: people don’t really talk about them. They’re the Voldemort of up-the-duffness. No one must utter the word, or mention it to someone thinking or planning to have a child. 

They happen. They’re one of life’s most miserable experiences, and tear away a part of yourself you can never properly repair.

You can’t forget. But you can move on. Just give yourself a chance by at least thinking a little more realistically about the time you might need. It took me 10 years of plucking up courage, false starts, disasters, emergencies, operations, and assorted brouhaha to brew up and tip out my second child. I’m mightily glad time was on my side.


Enjoy yourself, it's later than you think
Enjoy yourself, while you're still in the pink
The years go by, as quickly as you wink
Enjoy yourself, enjoy yourself, it's later than you think


Video is: The Specials - Enjoy Yourself

Start

I’m currently broadband-bereft, so I'm typing this on a smart-phone. My fat, little paint-splattered fingers are feeling a little clumsy, so apologies for any spelling mustekes.  

We've moved into our new house. This involved some military-style planning. Armed only with cardboard boxes, gaffer tape, a haphazard system of packing, and a hired lorry, we transported ourselves and all our earthly belongings into our new house. I kept humming the theme from the A-Team and shouting catchphrases at my husband, including: “Stop your jibber-jabber, fool,” and “I love it when a plan comes together.” This only stopped when he chloroformed me and put me on a plane.

It feels like home already. The hi-fi was up and running before the beds were put together. A small trampoline was purchased and put up outside the patio doors to keep our toddler son happy. He's also already walked the equivalent of Land’s End to John O'Groats with his Grandad on a series of expeditions to discover the nearby parks/lake/river/train station. 

There's just one thing wrong: our daughter isn't here. The day after we moved in, we drove back to our old town and packed her off on a coach to Guide camp. For a whole week.

In amongst the upheaval of the move and all the associated changes in her life, it made sense for her to go on this trip, which was booked way before we decided to move.

So we're here, and she's not. And it's just not right. Roll on Saturday, when we can bring her to her new home and show her her candyfloss pink room (which is being painted right now and which will have all her precious stuff in it by the weekend).

Then we can properly start the rest of the rest of our lives together.

Video is: The Jam - Start/Private Hell

Video is: The A-Team opening credits　

Moving

We'll soon be closing the door on our home for the last time.

The keys will be handed to the estate agent, and a new family will take over the space we’ve lived in for more than a decade.

Moving in here, with our frail little baby, all that time ago, we were still essentially shell-shocked from our daughter’s diagnosis. Prader-Willi Syndrome was very new, very alien, and very frightening.

I didn’t have high expectations of what she’d achieve. Of what her life - or ours - would be like.

I never dreamed I'd sit here bursting with pride as she sent badly-spelled emails on her ipod. I never thought I'd see her dance. I never thought I'd watch her getting scares and thrills from Doctor Who.

I never dreamed that there would be more ups than downs. That my first emotion when thinking of my daughter would ever be anything other than overwhelming sadness.  

But that’s not how it is now. I look at her and there’s one thing I feel above everything else. I feel lucky.

So it’s time to say goodbye. We’ll take with us a head full of memories of all the other stuff happened here. Plus quite a few boxes of crap. Oh, and we’ll also be packing our son. (I did mention popping him out, didn’t I?) 

We’re off, to a new home in an old familiar place. 

There may be blog silence for a few days while I work out how to plug the internet back in at the other end. See you on the other side.

Perseveration

Most people who have been in a car with small children at some point in their life are familiar with the phrase: “Are we nearly there, yet?”

The repetition of a question over and over again can be a particularly effective form of mental torture. Luckily, most children grow out of it. Unfortunately, some children with Prader-Willi Syndrome don't. There is a proper term for it: 'Perseveration'. (I've got my own rather Anglo-Saxon way of describing it, but perhaps this isn't the place). 

'Perseveration’ in the medical sense is as follows:

per·sev·er·a·tion (pr-sv-rshn) n.

1) Uncontrollable repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by brain injury or other organic disorder.

2) The tendency to continue or repeat an act or activity after the cessation of the original stimulus.

So, pop-pickers, I’ve compiled a handy Top Five of this week’s favourite questions/phrases, with a small explanation of each:

1) “Is the chain still good?”

We’re moving house, and have taken great pains at every step of the way to explain how a housing chain works and how it can break down at the last minute.

2) “Have I still got lots of teeth?” 

This stems from my daughter’s worries that if she grinds her teeth, they’ll wear away and disappear.

3) “Is my voice too quiet?”

A current obsession with the volume of things, leading neatly into... 

4) “I’m deaf.” 

A misunderstood lesson at school on how your hearing works has her believing anything vaguely loud will ‘vibrate the hairs in her ears until they break and she goes deaf’.
5) “When’s dinner/tea/breakfast/snack time?” (delete as applicable)

This should really be at number one, but it’s such a constant in our life that we actually do a pretty good job at deflecting this one with distraction techniques.

Of course, this kind of thing is not just confined to people with PWS. I understand ALL teenagers have the same problem, but oddly with just two questions: “Can you give me a lift?” and “Can you lend me a tenner?”

Video is Fleetwood Mac - The Chain

Go-Go

We’re moving house next week, for the first time in nearly 12 years.

Packing, as you can imagine, is a delight.

Mainly because of the considerations I have to take into account when squeezing the overflowing contents of my daughter’s bedroom into an acceptable number of boxes.

You see, I can’t use this opportunity to surreptitiously chuck out a load of old toys or books or sticker collections or soft toys. Because she knows EXACTLY what she’s got. And, while we’re on the subject, who bought her it, whether it was for her birthday or Christmas, and how old she was when she got it.

The obsessive side of her personality has come right to the fore. (This is typical for someone with Prader-Willi Syndrome, but let’s face it, no-one can say what her default trainspotter setting would have been, anyway).

And so I find myself packing three boxes of Go-Gos. These are miniature, stylised collectable characters bought by thousands of kids with pocket money to burn on a Saturday. Think Wenlock and Mandeville, the 2012 mascots, only about an inch and a half high.

A risible set of England Go-Gos were brought out in time for the last World Cup. Which means, thanks to my determined girl’s protestations that she “really NEEDS them”, I have just packed 10 tiny identical, plastic Wayne Rooney effigies.

Although these claimed to be a ‘special edition’ series, they did not include any hair-weave representations, or a bonus figure of an elderly prostitute. I feel cheated.

Video is Fountains Of Wayne - Stacy's Mom

Ripples

The children in my little street aren’t the the most genetically perfect bunch you’ll ever meet.

There’s my daughter, with her rare chromosome disorder, Josh next door (see my last post, Legs), an autistic girl across the road, and another girl who used to go past on her way to school every day struggling up the hill with a walking frame.

My husband thinks this is an unusually high proportion of young people with disabilities. (We don't live in Springfield, by the way. There isn’t a poorly-maintained nuclear reactor nearby, with a lake filled with three-eyed fish). I think the cause of all this comes under the heading: “Sh*t happens”.

“We should change the street name to Raspberry Ripple Close,” my husband decided. 

As the father of a girl with a disability, he can not only get away with this, but I’m also allowed to giggle at it. It’s all about intent and context and laughing at the bad stuff to take away its power and hold over you.

If Ian Dury was still around, you could ask him a thing or two about this.

“Hello to you out there in Normal Land

You may not comprehend my tale or understand

I'm spasticus, I'm spasticus
I'm spasticus autisticus"

Legs

Shortly after moving into our house, we met the little lad next door, called Josh, who has been dealt a few tough cards in his life. He's deaf, wears a prosthesis as he's only got one leg, and has a syndrome that caused him a whole host of other problems. He's a lovely boy, and very kind and protective towards my daughter, who he always wants to 'look after', despite his own difficulties.

I became good friends with Josh’s mum, Sue, who is perhaps the most stoic person I know, always keeping calm despite the stress of her son having scores of serious operations.

One summer, Josh, my daughter, and Josh’s sister Beth, were splashing about in a paddling pool in next door’s garden, while I was in Sue’s kitchen, having a chat and a cuppa, when two things happened at once - a Parcelforce man arrived with a delivery, and Beth shouted out from the garden: “Mum! Josh’s leg has got wet!”

Sue, without batting an eyelid, continued signing for the parcel, while shouting back: “Well take it off and put it against the fence to dry!”

I will remember the delivery driver's face until my dying day.

Video is ZZ Top - Legs

Dante

As far as I’m concerned, Dante got one of his circles of hell all wrong. I’m unilaterally replacing the third circle, Gluttony, (which, let’s face it, is a slap in the face for innocents with Prader-Willi Syndrome) with another. Henceforth it shall be known as the Wacky Warehouse Circle.

I appreciate that’s a brand name. It could just as easily be called the Circle of Adventureland, or Funworld, or Another Faceless Soulsucking Shed With A Few Cushions, A Million Plastic Balls, And The Smell Of Wee And Chips.

I’ve spent too many hours of my life in these places. When my daughter used to receive another birthday party invite to an indoor play area venue, I used to want to scrawl in red pen on the RSVP slip: “NO! SHE’S NOT EFFING COMING! I DON’T WANT TO SPEND ANOTHER THREE HOURS OF MY LIFE IN A SWEATY AIRCRAFT HANGER, LISTENING TO THE SOUNDS OF SCREAMING CHILDREN, ACCOMPANIED BY A PA SYSTEM PIPING HEART FM DOWN MY EARHOLE AND INTO MY BILE DUCT. Thanks.”

I never did, though. I always took her. And - here’s the crucial bit - always stayed. Gazing longingly at the other mums who got to dump their kids and sprint out of the door to freedom. Off they swanned, to eat caviar, go for a pedicure, and have sex, possibly all at once. While I remained.

The principal reason was to control what my daughter ate. This often involved bringing my own healthy versions of party food: a box of raisins to substitute for sweets, a low fat yoghurt instead of ice cream. Birthday parties tend not to be big on salad. And with Prader-Willi Syndrome, you’ve got to be on top of the food situation at all times and in all environments.

The other reason was that my daughter wasn’t as mobile as the other kids. So she’d haul herself up to the third floor of the soft play area, and then get stuck. And I’d have to clamber up to rescue her, wishing I’d not dodged so much salad as I squeezed through places I had no right to squeeze through.

These parties, in these places, were without fail, excruciating. But, I suppose, if I’m honest, if I had my time over again, I’d still go. Because in the end, they weren’t about me. They were about making my daughter happy.

Oh, and the enormous whisky I’d treat myself to to calm my nerves when we got home.

Video is Eels - Your Lucky Day In Hell

Guardian

Six years ago I wrote a piece for The Guardian, in response to a news story that resonated with my family and our fears for the future.

A friend of mine on Twitter (@GauntletGirl) accidentally stumbled across this article when she was googling to find this blog.

It was strange, looking back at something written at a particular point in time. Some things have changed. Some stay the same. But I stand by everything I said.

You can read it here: Living With Prader-Willi Syndrome.

"Well, I can't do nothin' 'bout that, no,

But if you hurt what's mine

I'll sure as hell retaliate"

(Massive Attack - Safe From Harm)

Flight

You know those cheap flights where you aren’t allocated a seat, so it’s a bit of a free-for-all when you pile onto the plane?
Your main priority is to grab a seat next to someone who looks a) sane b) small and c) quiet. Not the bloke with the thousand-yard-stare, the DIY haircut, and the relaxed attitude to personal hygiene. And certainly not anyone with kids - particularly babies. The potential for migraine-inducing bawling is far too great.

When we went on holiday to Spain when our daughter was about seven months old, we caught one of these flights back home, at some ungodly hour of the morning and after a lengthy airport delay.

An extremely harassed bloke plonked himself down in the seat next to us, letting out an audible sigh of relief as he looked across at my husband, noting he was a big fellow, but taller than he was wider, and therefore not likely to impinge on his personal space. But then his face fell as he clocked me. Or more importantly, the little bundle of baby in my arms.

Now I knew that our daughter was very likely to sleep for the whole journey. I also knew that she was physically too weak to cry, because of her poor muscle-tone. (Saying that, she had actually squawked quite loudly on the beach when I’d plunged her into a dinghy full of icy-cold water. But I’m not overly proud of that, so let’s move on).

But this guy didn’t know these facts. I could see he was now steeling himself for the plane journey from hell, two seats down from a screaming baby.

Two hours later, as we got to our feet, ready to get our luggage from the overhead lockers, with my daughter still a picture of peaceful, silent contentment in my arms, our fellow passenger turned to my husband and formally shook his hand.

“I would just like to say, your daughter is a perfect angel,” he told my other half. “You, sir, on the other hand, are a bloody fidget.”

Video is Johnny Kidd & The Pirates - Shakin' All Over

Rocky

My daughter shares a drug habit with Sylvester Stallone. I know this seems the unlikliest pairing since that other famous bodybuilder Arnold Schwarzenegger teamed up with Danny Devito in Twins, but it's true.

In common with oiled-up muscle freaks the world over, my daughter has an injection of synthesised human growth hormone every day. Genotropin is the brand name. The same stuff Sly was arrested with at a Japanese airport a few years ago.

Don't worry: we're not trying to turn our little girl into a miniature female version of The Italian Stallion. For one thing, those pumped-up bobybuilders' physiques make me queasy. It's like looking at a condom filled with ballbearings.

No, growth hormone just happens to help make you taller and increase your muscle mass. Having Prader-Willi Syndrome means our daughter doesn't produce enough growth hormone herself, so we have to give her a shot every night. It doesn't make her muscle-bound, it just makes her stronger.

She's going to be on it for life. It costs thousands of pounds a year. This is why, unlike bonehead Bono, I will never stash my millions in an offshore account to avoid paying tax.

Video is Sylvester Stallone in Rocky

Cricket

“Nobody expects the Spanish Inquisition!”

Without fail, this was the phrase we uttered when strapping our daughter into this monstrous contraption.

I think it was called a standing frame. We just referred to it as The Rack. Although we were overegging the pudding a little: it didn’t ‘stretch’ her legs, just held them in place, to stop her weak knees buckling. The idea was to provide a rigid support for her legs, to allow her to stand up for a few minutes and gradually build up her muscle strength.

As well as The Rack we had The Cricket Pads. These were velcroed together round our daughter’s legs, and we would stand her up against the sofa, arranging her toys on the seat cushion in front of her, to encourage her to spend a few more precious minutes in the unfamiliar upright position.

This was usually accompanied by one of us singing: “I don’t like cricket-ah! Oh no! I love it-ah!”

Video is The Mighty Boosh - And That's Why I Don't Like Cricket