Remember Club 18-30? The cheap package holiday people who welcomed binge-drinkers with open arms, and sold them budget bonking breaks where they were guaranteed to come back with letters after their names, just as long as those letters were STD?
Well, tomorrow, I’m joining the 16-24 Club. You won’t know what this is, as I’ve just made it up. I’m a long way past 24, an’ all. Let me explain.
Sixteen years ago today, I was packing a nightie and toothbrush into a bag. I was also checking the other bag that I’d been stubbing my toe on in the hall for a few weeks. In that one were sleepsuits, nappies, cotton wool wipes, and other babygubbins. The next day, October 4, 1998, I was booked in at the hospital for an induction, to kick-start my tardy baby’s way into the world.
Twenty-four hours later, I was holding my daughter, forgetting the weirdness of an emergency Caesarian, and concentrating on the wonderfulness of thinking she was just damn perfect.
Another 24 hours later, I was craning my neck to see through the window of a door, where 10 metres away from my bed, on the other side of the glass, a paediatrician and his colleague were discussing my weak, floppy child. I was trying, unsuccessfully, to lipread, and at the same time knowing I didn’t need to. One look at their expressions and body language told me something was wrong with my child.
Twenty-four hours after that, I was parked by an incubator, shell-shocked, looking at the tubes and machines attached to my baby and not knowing what to think, what to do, how to help, why she couldn’t feed, why her muscles were so weak, what was wrong, what was happening, and when I would stop wanting to scream. At the lowest, most awful point, when I thought she had brain damage and would never even be able to move, I had the worst thought imaginable (see blog post Secret). I was wrong. I was never more wrong and I never will be.
The days became weeks. Some questions were answered, many were not, more were asked, and each day we tried to deal with what we had to deal with.
We now knew our daughter had Prader-Will Syndrome. We didn’t know anything about it. Twenty four hours later, we knew too much.
The 24s continued. Twenty-four hours on, things might be different. Twenty four hours on, we might have a new challenge. Twenty-four hours on, we might have a triumph. Twenty-four hours on, we might have a new problem. Twenty-four hours on, we might have a laugh. Twenty-four hours on, we might be able to cope. Twenty-four hours on, she might smile. Twenty-four hours on, we might feel like giving up. Twenty-four hours on, it just might be a brilliant day. Twenty-four hours on, a meglomaniac double agent might try to assassinate the President and let off a nuclear bomb. No, wait a minute, I just went all Kiefer Sutherland on you, there, I do apologise.
Tomorrow, my baby is 16. When I fill out her PIP form I know I have to concentrate on all the things she misses out on and can’t do, and every pen stroke I make feels like a hateful betrayal.
But here, on this blog, today, every key I press on the keyboard feels GOOD. Beacuse I’m thinking of all the amazing things she has achieved: the rolling, walking, talking, laughing, growing, learning, dancing, loving, being. Being herself. Just that.
Tomorrow our daughter is 16. Tomorrow, she will astonish me somehow, like she does every 24 hours. We’re going for a curry, she’s having a sleepover. I’ll be up until midnight tonight loading up then wrapping up her tablet computer, and I can’t believe we’re here, at this point, with this life.
We’re going to light 16 candles and carry on taking things 24 hours at a time. Like we always have, and always will.
That’s us. Club 16-24. We don’t penalise anyone for having extra baggage, and there are free Pina Coladas. Or at least a pint of Cobra and a stack of poppadoms.
We’ve just returned from a week’s holiday in Devon, whacked, shattered, sun-burnt and wind-buffed.
I’ve hopped in a sack and bombed down a tube slide, looking for all the world like the Very Hungry Caterpillar before he changed into a beautiful butterfly (I’m waiting....still waiting...for the wondrous transformation to take place).
I’ve done something similar on a water slide, only there was just a mat to sit on and no sack to spare my blushes as the G force tested the limits of my straining cozzie.
We’ve clambered through castle dungeons, snoozed on the beach, done the Sid & Lizzie Wibble Wobble dance, and stuck each day to the Plan To Help My Daughter Cope With
Enormous Changes To Everyday Routines.
The PTHMDCWECTER has a few simple elements which we find pertinent for Prader-Willi Syndrome: 1) Food: Where, when and what. Get yourself organised, have your snacks available, know your lolly calories, and be familiar with the menu of where you’re eating before you eat there. This may involve an internet menu hunt or an early morning perusal of menu boards.
2) Projects. Holiday days need structure, precisely because the normal structure of a day has been dismantled. Have a morning activity planned (swimming, Star Landers troupers Super Hero Movie Trailer Making Session), line up an afternoon event (a visit to The Big Sheep theme park, beach trip, tourist shops tat run), and grit your teeth and prepare to be dragged to the dance floor for some serious evening Macaren-agadoo-perman action at the park troupers' party disco time (led by a giant DJ seagull and a lizard in a pink dress).
3) Freak Awareness: Do not be freaked out by the sight of a giant DJ seagull and a lizard in a pink dress. 4) Get The Sand Out Of Your Ears: If you think the kids are raising their arms in the air and yelling "Sieg Heil! Sieg Heil!", you are mistaken. They are shouting "Seagulls! Seagulls!". God, at least I hope I'm right.
5) Have A Goal (and some ice and lemon): Get the kids into bed, and open the gin.
I’m proud of my daughter. As usual, she showed up her brother with her travelling skills, watching DVDs and emitting a sanctimonious glow like an angel that had OD’d on Ready Brek as he kicked off next to her. I swear I saw her smile smugly when I finally lost the plot and yelled at the Patience Free Sibling Zone to “BE QUIET, JUST FOR FIVE MINUTES! THAT’S ALL I ASK!”. Even he suffered a rare attack of self awareness: “Mummy, if I grow up and have a baby, then I’m never ever not even going to ever let them talk AT ALL.” She scrubbed up right nice for the children’s entertainment (oblivious to the fact that she was five years older than any of the other kids taking part). She swayed and hopped and took part in the dance routines. She even managed to put a lid on the vexing question that was bothering her all week, which was whether Sid and Lizzie (the seagull and lizard) were people in costumes. “I know seagulls can’t talk, but I just cannot see a zip, Mum, so I don’t think he’s real, but HE MIGHT BE REAL!” And touchingly, my too-cool-for-school boy, his new pork-pie holiday hat tipped back nonchalantly on his head, gave her brotherly support and stood by her side every night, joining in with the Chi Chi Wah song (although he later admitted to me he liked it because the actions involved "sticking your butt out").
So we’re back home. They’re watching The Goonies. I’m eyeing the gin, which has Evening Project written all over it. It’s been a ride.
Running in and out of the sea wedged in a blow-up dolphin rubber ring, going wrinkly from spending hours in the camp swimming pool, catching crabs at Wells. And that was just on one Club 18-30 holiday.* (*joking Mum, for God’s sake, I’m joking).
Our holidays were special; it’s not just the rose-tinted specs of hindsight filtering them pink. I just remember having mountains of fun, with Mum making amazing cars and boats out of sand for us to play in, and Dad being the biggest kid of all, horsing around on the beach, always, always playing games with us.
We returned last week from a special holiday of our own. It was our turn to be the responsible grown-ups. We took our two kids to the Isle of Wight for a week, to a cheapo Haven Holiday-alike family resort, and thanks to the magical ingredient of constant sunshine, and the marvellous horsing-around skills of my husband, I’m hoping we’ve managed to brew up some potent solar-powered memories for our children.
When you go on holiday with a child with Prader-Willi Syndrome, there’s an extra level of planning. As well as the sun-cream and beach towels, you make room in your bags for healthy snacks and a low-fat picnic for the journey, because you can’t rely on motorway service stations to have low-calorie menu options. You stick a couple of extra items of healthy food in your glovebox just in case you get stuck in a traffic jam. You pack that emergency tuna pasta meal that doesn’t need to be kept refrigerated just in case the traffic jam turns out to be a monster of a marmalade. (By the way, terrorists, you’ve really put a spanner in the works when it comes to foreign flight travel, because in the eyes of airport security a low-fat jelly pot might as well be a low-fat gelignite pot, you utter bastards).
When you travel with someone with PWS, you have to check venues and menus in advance of mealtimes to be sure you’ll be able to order something suitable at the right time of day. And if you’re the parent of my particular PWS child, then you also have to check whether a restaurant or pub sells tomato juice, and even more importantly, will add the required large dash of tabasco or Worcestershire sauce to make it spicy.
But I’m making this all sound like a a right pain, when it isn’t. Because after 14 years of this, it becomes second nature: we know which lollipops are under 80 calories; we’re used to strolling along the esplanade, peering at the restaurant menus and opening times a little more closely and a little earlier in the day than most; and we’re canny about splitting that afternoon snack so that our daughter can have some ‘extra’ nibbles on an evening out in the holiday clubhouse, as she watches redcoat wannabes sweat their little socks off. (And boy, with the weather we had, they really were extremely sweaty. I’m convinced that whoever was hidden under the furry, thermal layers of the Mr Bear costume must have been on a drip after each performance).
We visited theme parks, we rode in cable cars down to The Needles, we got stuck in giant deckchairs, and we played and lazed on the beach where my my husband and little boy built sandcastles and dams whilst my daughter and I read on sun loungers under a parasol, having an English siesta, otherwise known as ‘a little nap’.
We had a blast. A sunny, blazing blast. I’ll remember it. I hope they do, too.
Video is Sex Pistols - Holidays In The Sun. Again, sorry Mum.
After moving house and getting all our building work done, we’re not exactly flush.
In fact, we lifted up our piggy bank, tipped it up and shook it so hard that not only did every last penny fall out but so did the pig’s lower intestine.
Then my mate came up with a plan.
She’s off to the Cotswolds for a week, and her house is going to be empty. So she phoned me and asked if we’d like to holiday in her home.
It’s not a cottage near the beach. It’s not next to any major tourist attractions. It’s only about 25 miles away from where we live, and just down the road from where we used to live.
But it’s a lovely house, with a big back garden, and lots of toys for the kids. It’s familiar to my daughter, which makes it a safe, understandable and friendly place.
More specifically, it’s somewhere else, a change of scene, and will involve the packing of a suitcase, the playing of the holiday playlist in the car, the sleeping in a different bed, the staying up late watching kids’ films, the stocking the freezer up with lollipops, the smell of sun cream (hopefully), water gun fights, and a few well-earned beers (these are for us parents, not the kids, that would be wrong).
Arrivederci.
Video is The Dandy Warhols - Every Day Should Be A Holiday I just had a visceral flashback watching that music video. Me and my husband saw The Dandy Warhols perform in a dodgy little venue in Milton Keynes 14 years ago, when my daughter was a bump in my belly. We left just before the end, as it was boiling hot and I was feeling a little dizzy. I remember the muffled sound of them playing this as we walked through the car park, and how we sat listening to it in the car with the windows wound down. God, music can teleport you, sometimes, can't it?
