Showing posts with label Prader Willi Syndrome blog. Show all posts
Showing posts with label Prader Willi Syndrome blog. Show all posts

Tuesday, 22 December 2015

Clench

Today we decided to spoil the kids and take them to the dentist. It was much like any other Christmas family outing: it was expensive, the children got bored waiting for the main event, and my boy ended up being taken to the car to ‘think about his behaviour’.

My daughter’s typical Prader-Willi tendency to obsess over something and talk about it repetitively has been in overdrive lately. She’s been uttering her daily mantras of “Are my teeth going down?” and “I don’t grind my teeth, do I?” over and over like a buddhist rapper on speed. (For the record, she used to grind her milk teeth when she was little but stopped when she was about six, and has a lovely, non-worn down set of gnashers).

So in a sneaky pre-planned move, I made sure I was seen first today, in order to give my dentist the low-down on what she should and shouldn’t say to my girl.

With my new co-conspirator fully signed up, and my examination over, we called in my daughter for her appointment. And like a seasoned luvvie, my dentist hit her mark and looked her patient straight in the eye. “Well, you’ve been cleaning your teeth really well, they are absolutely fine, there is no evidence of any grinding, and they are not worn down at all!” she told her. “In fact, it wouldn’t matter if you DID grind them, which you DON’T, but if you DID, I would just make you wear a mouthguard at night, which is exactly the same as the retainers you wear anyway,” she added, in an excellent fleshing-out of her role.

I smiled, hoping this expert advice would be useful to me in my attempts to stop my girl’s dental-based perserveration. And we left, after wrestling our boy out of the waiting room, where he’d climbed over the chairs, pinched his sister, and been responsible for mid-to-severe levels of noise nuisance whilst we tried to pay.

Obviously, I didn’t tell my girl that I’d spoken to the dentist behind her back. And there was something else I kept to myself. Which was that the dentist had noted evidence that I was clenching my jaw and possibly...and it pains me to say this...grinding my teeth.

This will never be mentioned in front of her. NEVER, do you understand? Jesus, I’d never hear the last of it. Imagine if after all these years my daughter finally stopped saying: “Do I grind my teeth?” only to change it to: “Do you grind yours?”

Video is The Cure - Grinding Halt

Monday, 17 August 2015

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.

–––––

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