Resurfacing

Bless me Father, for I have sinned. It’s been a month since my last confession. I say confession, but I mean blog post. By the way, I’m not a Catholic, I’m an atheist. Although I am a multi-faith non-believer when it comes to booking my kids into cheap summer holiday playschemes run by local churches (Baptist and Anglican so far, if you’re interested).

There are reasons for my blogging purdah. The core of them are not about my daughter and her challenges. I could tell you about them. About old age mugging my loved ones, about the doctors, and pharmacies, and the medication that didn't work, about trips to A & E, and hospital parking, and my Mum-in-law nearly dying from dehydration on one ward, and her asking for her husband who’s been dead for 23 years, about my Mum four floors above her in the same hospital with one condition, being released and coming back in agony as an emergency with another, about how she doesn't deserve it, how they both don't deserve it, and about me and my husband doing the whole hospital tag team thing like some rubbish version of Big Daddy and Giant Haystacks. All whilst fitting in work. With the children on school holidays. I could tell you all that, and I just did. If you think I’m after a medal, you’re goddam right. A big shiny one, with chocolate inside the gold foil, if you’re asking.

But we’re getting through it. My girl, with her syndrome that sometimes has her tying herself up in knots of anxiety, has had to deal with a lot of uncertainty, changes to routine, and dreaded grey areas. She’s taken it all in, she’s worried and wobbled, but she’s coped.

There’ve even been glorious moments amongst the grim. Life may sling some shit at you, but it'll still bung you some laughs. I like to think of them as 'chuckle wet wipes':

There was the day I discovered my Dad (aged 80, recovering from a hip operation) managing unexpectedly well at home for three weeks on his own without Mum (thanks to some quick lessons in microwaving ready meals). In fact, at one point I suspected he was auditioning for a new sitcom called Old Men Behaving Badly when I discovered him sitting in the garden in the sun, topless, drinking Spitfire Ale straight from the bottle. If Mum had been there to see that, there would have been a whole new Battle Of Britain. She's back now, she's probably reading this, and er... sorry Dad.

And then there was the time I was driving back from hospital having taken my daughter to see her Grandma, feeling drained and teary and worried that my girl would be worried, and we put Taylor Swift on the car stereo, and we belted out every word and shook out every shake, shake, shake, and grinned and laughed and breathed and shook it all off, ah ah, shook it off, ah ah.

And on Saturday, for the first time for a while, we went away for the night. It was no romantic City Break - in fact, technically, it was my friend’s kid’s 8th birthday party. My daughter had been transported to her Prader-Willi Syndrome Best Friend Forever’s house for a sleepover. My boy was Zebedee-ing on a bouncy castle for hours, generating a large blister but not caring. And I was with my man and a bunch of good mates, kicking back, letting the kids run wild, laughing 'til it hurt, and feeling relaxed. To be honest, it wasn't long before I was relaxed as a newt.

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We’ve got a packed agenda today. Mum-in-law has proved herself a ridiculously tough old bird and rallied after the latest crisis, but doctors’ advice about her dementia and ongoing pain and reduced mobility has finally forced us to face up, man up - no, sod it - woman up, and find a place for her in a care home. 

Brother-in-law is down from oop north and has worked tirelessly: wading through Care Quality Commission reports; phoning; visiting; questioning. And he’s secured her a place. An ‘a hell of a lot better than I ever thought’ place at a really nice home, right here in our town; right here, so I can take her to her usual hairdresser every Wednesday; right here so I can drive her to her Thursday Memory Group; right here, so her friends can visit easily; right here, right now. When we went to look round, we all said we were not just OK with it, we were properly happy. I feel she will be safe and genuinely, properly cared for. And I’ve not felt like that with her in her own home for a while, and I didn’t realise what a crushing worry that really was. My daughter came with us to look at the home, the room, the garden, and the koi carp in the pond, and she announced: “I think Grandma will like it.” For some reason, in a peculiarly posh and sage-like manner, she then added: “I don’t she any reason why she shouldn’t.” (By the way, I’ve no idea why my girl has started talking like a dowager duchess. Another particularly proper announcement today was: “It’s 21 degrees, which is simply lovely English weather, don’t you think?”)

We’re gathering Mum-in-law’s photos, treasured possessions, and familiar bits of furniture, to transfer to her new room. And, of course, to pay for what she needs now, we’re kickstarting the whole selling of her house saga. 

Phil, the manager, is going to see her in hospital. He said that from our description of her he was sure he’ll be happy to accept her into his care “unless she starts screaming obscenities and coming at me with a knife”. He had a twinkle in his eye. Unless hitherto unseen Ninja Nan tendencies suddenly manifest themselves, I think they’re going to get on. Despite everything, Mum-in-law still has a twinkle or two of her own.

It’s been intense. It isn’t over, by any means. But I feel like I’ve resurfaced. 

It's like I've got this music
In my mind
Saying "It's gonna be all right"

Video is Taylor Swift - Shake It Off

Firefighting

A suspiciously small, strangely familiar firefighter

Too much of 2013 has been spent fighting fires.

It started with strength-sapping sleepless nights and bouts of the jitters for my daughter that left her behaving oddly, distant, not being herself. It was only after months of worry, and a series of medical investigations, that we finally got her back. She was diagnosed with a mood disorder, and miraculously restored to her old self through mild medication. There are days when I can almost hear the crackle of the flames and wonder if the fire is going to break out again, but her tablets are currently doing a damn fine job of damping down the danger, without dousing her own spark.

In all honesty, much of the flame-stomping has occured off-blog. I’ve only recently briefly mentioned the terrible, accelerating, diminishment of my mother-in-law, whose memory is being slowly unravelled by dementia. At the beginning of the year she used to read this blog; now she can’t remember how to turn on her computer. The safety net we provide is sagging, alarmingly, a bit like the rest of me, and we’re about to get some outside help (for the safety net, not my saggy bits, oh, let’s move on, shall we?).

The tail end of the year has seen the fires spread, violently, terrifyingly, to my dad. Hospitalised for weeks with a sudden, serious brain illness, he’s finally came home, just before Christmas. He’s there, but not there, and I just want him back for me, for his grandchildren, and for my brave, frightened mum.

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Christ, I can't end there. This is turning out to be more depressing than Jools Hollands’ Hootenanny, and no-one deserves that. What I need to do is have a good long look back over my blog, and remind myself of all the good stuff that went on in 2013. A sunny holiday, school shows, parties, new friends, old friends, music, laughs, fun.

And anyway, my husband’s not working tonight. What the hell, if I light up a couple of flaming sambucas and stick some rousingly arousing music on the turntable, we might see the New Year in with a bang. 

Song is Agnes Obel - Fuel To Fire. I'd like to point out this is not rousingly arousing. It's just kind of beautiful and contemplative and also, handily, has 'fire' in the title. I would have put Aretha Franklin's Dr Feelgood here if we're talking sexy music, but I've already posted it on this blog. Probably more than once.

Repeats

My daughter still believes. She did look a little sceptical that Santa had adjudged her brother to have been “nice” and not “naughty” in his personalised internet video message from the North Pole, but she wasn’t too bothered, as she’d just received the same verdict.

They went off to sleep last night when tiredness overtook their excitement, both squeezing their eyes shut and promising not to peep. My 15-year-old daughter and my five-year-old boy. 

And now, our family has grown. We have been joined by an annoying Gremlin-like creature called a Furby. As far as I can fathom, there’s no off-switch, so when we wanted a bit of peace we had to put it in another room to send it to sleep, as our daughter told us we weren’t allowed to take the batteries out, because “that would be killing her”. The unhinged muppet is called Fiona, apparently. Interestingly, as attached as my daughter is to her new evil incubus, her favourite present today seems to have been a jar of giant gherkins.

I’m slightly bruised from having to lie on the floor while my son tested the ‘off-road’ capabilities of his new remote control car by driving it over the top of me. I’ve been having some funny conversations with him using his new walkie-talkies: “Over it. Get over it, Mummy,” was his idea of how you signal to the other person you’ve finished talking. But his favourite present is a tiny Lego Batman figure. He’s lost the mini Dark Knight’s mask three times today (each loss marked by escalating degrees of panic starting off at Red Alert and finishing with Cuban Missile Crisis level).

They say there’s a lot of repeats at Christmas. They weren’t kidding. I said they weren’t kidding. And I'm not just talking about the Brussels sprouts fumes emanating from my husband's rear portions. Our daughter, whose peseveration* levels were sky high (*where she asks the same questions or says the same sentence repeatedly) was at one end of the table; next to her was my dad, now home after six weeks in hospital, who is currently stuck in a time loop world where his brain thinks everything is happening over and over again; and next to him was my mum-in-law, whose dementia causes conversations to roll right round baby right round, like a record baby, right round...

But it worked. It worked out. We snapped our crackers, gave eachother gifts, and laughed at my Yorkshire Puddings, which my daughter defended on my behalf. Repeatedly. 

So, I’ve got a truckload of turkey left, and we’re going have the same personnel for a Boxing Day re-run. We’re going to have to go down the park tomorrow to get some fresh air and burn off some calories. We’ll be taking the walkie-talkies, and the Furby, but probably not the gherkins.

It’s been a long, kind of wonderful, kind of heartbreaking day. Over and out.

Video is LCD Soundsystem - On Repeat

Constructed

I’ve been chasing my tail this week.

There haven’t been enough hours in the day. I’ve had a pile of freelance jobs to complete, time-consuming mounds of wet beds to deal with; the rude shock of school/nursery hours to coach my offspring into; the usual child wrangling, cajoling, and patrolling; and the endless loop of re-run conversations and jobs that are needed to keep a relative with dementia on an even keel. 

My husband is on the last day of his four day shift today, which means he’ll be around to help for the next four days. These are referred to as his ‘rest’ days, although he tends to let out a bitter, hollow laugh when he explains this to people.

But today has been a good ’un. 

I’ve been sprawled on the floor for much of the afternoon, constructing warped shapes out of hundreds of Magnetix pieces, then putting together a wooden train track with my boy that resulted in a record number of disastrous but entertaining rail crashes. 

Meanwhile, my daughter, quickly losing interest in our building work, constructed her own entertainment.

She's been upstairs in her bedroom, reading a book and intermittently singing along to songs on the radio. I know this doesn’t sound like anything to write home about, but it is, it really is. She took herself off up there independently, she worked out how to turn the radio on on her CD player (which she’s only listened to discs on before now), she found a station she liked (some God-awful commercial one) and lounged about. Like teenagers do. 

Prader-Willi Syndrome can overtake the life of a child and their parents. It can become the be-all and end-all. My daughter has her idiosyncrasies and her struggles. Today, she was mostly just a teenager, chilling out.

Music is Smoove & Turrell - Hard Work, from the Craig Charles Funk & Soul Club compilation CD, which arrived in the post this morning and provided a rousing soundtrack to my day.