This thing about being a ‘sandwich carer'. It sounds like a euphemism for being fat, you know, along the lines of ‘salad dodger’.
We all know what it means, though, right? Someone of my generation (yeah, yeah, middle-aged, all right, don't rub it in) who is looking after kids and parents at the same time, and ends up being the delicious tikka*/wilted lettuce* [**delete according to mood] in the middle).
Well, I’m OK with it. I take responsibility for my progeny -and the fact that one needs extra help because of a chromosomal blip is something that happened, something we deal with, something that just is. I also share responsibility for my oldies, because, well, I love them and they made me, put up with me, wiped my bum, took me to the seaside and did tonnes of lovely stuff for me.
But my sandwich is big enough, thank you; two slices of bread is enough.And yet, somehow, some bastarding bastardy how, a third slice has been added.Someone’s Scooby-Snacked my sarnie. They’ve added to the middle.
They gave my husband cancer.
Don’t flip out, he’s not going to peg it.
When we went on holiday at the end of May, I noticed a large, black mole right in the middle of his back. (I saw this when I was rubbing sun cream in, not because we were trying out crazy, holiday cocktail-fuelled sex positions. Look, genuinely we weren't...but crazy, holiday cocktail-fuelled sex positions do sound goooooooood).
He got the mole checked out when we were back. The hospital told him he needed to have it cut out, pretty much immediately, that week.
The tests came back positive for a melanoma. Skin cancer. And there was this little lump under his armpit that needed testing - it could have spread to his lymph nodes.
He had scans. He had more tests. Everything happened fast and yet slow. Each procedure and investigation took a few days to book, a week or so to report back, and another stage to get to and get through.
Gradually, we could let the terrified air out of our lungs as the answers we got were the ones we’d hoped for.
It was Stage 1b, which is early. No, it hadn’t spread.
He’s on his way back from hospital now, having had a second ‘excision’ (to basically dig out everything 2cm around the site of the mole). But it’s OK. They’ve caught it and removed it.
He’s going to have to go back for check-ups every three months for the next few years. I’ll be photographing every inch of his skin to keep an eye on his other moles. Maybe I’ll light some candles, put on some Barry White and tell him it’s sexy nudie pic time.
I love him more.
I didn’t think I could, but I do. (And that’s not just because he’s been signed off from work for a fortnight, which is handy for childcare at the end of the school holidays, honest).
And, don’t take this the wrong way, but I’m really, really hoping he’ll stay the fuck out of my sandwich.
You might think life is tough for a child with Prader-Willi Syndrome.
There’s the hunger, the anxiety, the learning difficulties, and all the rest of the blah blah blah.
There’s also the poor circulation, giving rise in my PWS daughter’s case to really cold hands and feet.
But I really don’t see what she’s got to complain about. She gets to wear cosy thermal socks. Not only that, this morning, when we awoke to snow, and realised her boots had been stored in the outside shed overnight, she sat on the stairs admiring her nail polish, whilst her dad knelt on the floor hairdrying her wellies warm.
Yesterday, I spent a splendiferous evening in the cautionary company of Mark Oliver Everett and his band, better known as Eels. It was a stunning gig, as Eels gigs always are, whether E is in wild hedgerow beard/boiler suit/ pilot goggles/get-your-freak-on mode, or, like last night, in tidy facial fur/lounge suit/wry-but-sensitive/‘bummer’ setting. (For American expressions that don’t travel very well, bummer comes in third, fag beats it to second spot, and fanny pack is the undisputed all-time winner).
My friend, Dave ‘Dog Faced Boy’ (named after an Eels track containing the immortal couplet “Ma won’t shave me, Jesus can’t save me”), accompanied me and Mr Drakeygirl to the gig, arriving at our house a couple of hours before we set off, thus allowing time for some enjoyable blathering and nattering.
It was the first time my kids had met Dave, and he was made to feel welcome, sort of. My son, aged five, completely ignored him for two hours, choosing instead to practise his superhero moves in front of a Batman cartoon. But he did activate his show-off gene to throw a couple of quick moonies Dave’s way before we left.
My girl, on the other hand, started off well but faded. She sidled out into the garden, where we were sitting in the sun having a chat. Her Prader-Willi Syndrome means she doesn’t quite ‘get’ social conventions and the art of conversation. But her nose was bothering her. She knew I knew Dave from ‘Word dos’, meet-ups organised by a bunch of music fans dating back to the days of the now defunct Word Magazine. (“I told my teacher you were going to a Word do, and she said it must be a work do, but I said no it’s a Word do, but she said I had got it wrong and it was a work do, but it was definitely a Word do, wasn’t it, Mum. What is a Word do?” has been a long-running repeat in recent weeks).
So she sat next to Dave, pointedly reading out the title of her book, and shooting him sideways glances to see if he was impressed that she was nearly halfway through “Make Friends With Poppy The Brownie”, and consistently interrupting us for about 20 minutes, checking everyone's age, and loudly enunciating nuggets of information she thought Dave might be interested in, like: “I speak well for Prader-Willi, don’t I?” After she’d shared everything she felt necessary, she looked at our guest and nodded at me, before standing up and announcing: “I’m going inside to read. I’ve done Dave, now.”
Video is Eels - Parallels (live at the NYC Apollo). Before you ask, no, Dave would have had to have come round a damn sight earlier than two hours before the gig if we'd have been going there. But it is from the current tour... 'Word' not 'Work' blatherings on music (and other associated or often completely unassociated subjects) now take place online at the aptly named The Afterwordsite. Dave 'Dog Faced Boy' is responsible for an excellent podcast entitled 33 & A Nerd, and also the driving force behind The Afterword Podcast - both are things you should really be downloading if you have any sense. He also has a blog, entitled: A Dog Faced Boy's Tail. Oh, and it's his photo at the top. And now, you have all the information you could possibly need. Thangyouverrymuch.
This week is PWSA (UK) Awareness Week. The Prader-Willi Syndrome Association (UK) want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families. “Talk about PWS” is the strapline. Today the PWSA (UK) is talking about Adults. Does your son or daughter live at home or in supported living or residential care? How is it working out? Today’s topic is the one. The one that gets me. If I had to plot a graph of my fear levels regarding PWS, it would be creeping up and up with every birthday my daughter celebrates.
When your Prader-Willi child is a baby, all floppy and helpless and ‘other’, you’re shocked and terrified. Your life has taken a wrong turn. It takes a while for you to realise that the wrong turn, unlike the ones in films, doesn’t lead you over the edge of a cliff or into cannibal-infested woods - it takes you pretty much where you wanted to go, just the long way round.
So from initially stratospheric fear levels, my graph dropped to low grade background worrying once I got to know my daughter and her charm and grace made her one wonky chromosome seem less important.
There have been spikes along the way: I’ve never known real terror until those hours I sat waiting to find out if a 10 hour spinal fusion operation had been successful and safe; I’ve never felt as frightened and helpless as when she raged and swore in the middle of the night as her then undiagnosed mood disorder briefly changed her into an almost unrecognisable cuckoo in the nest.
But life, for the most part, has been lighter on the jitters and heavier on the jollies than I ever expected.
And yet. And yet. Adulthood is looming. I’ve just read the stories shared by parents of PWS adults today, as part of the awareness week, and I’m crying. At the honesty, bravery, resilience, and often the sadness portrayed in their tales of the difficulties that their families have had to face, are facing, and are yet to face. Problems with food and weight, mental health, frustrations over jobs, routines, friends, a social life, with living.
An adult with Prader-Willi can find living in residential care hugely difficult. They can also find supported living hugely difficult. Living at home can also be, you guessed it, hugely difficult. They are a person, with hopes, and dreams, and tumultuous emotions which they cannot control. They need structure, they need stimulation, they need a proper, satisfying, fulfilling shot at life. And it is so hard to find a place for them in the world, where they can be happy and healthy.
My girl is only 15. I believe staying on at her school until she is 19 will work well for her. I believe this, but I don’t know it. After that, she may go to college, but finding the right course, the right supervision, the right help, won’t be easy. If it goes well, that will take her up to 22, and then after that? What then? Where then? How is it going to work?
I have to think about these things. The line on the fear graph is looking mighty steep, but I have to scale it. I’m going to need some grappling hooks, some thermal undercrackers, and, hell, maybe some Sherpas.
