Thursday, 22 September 2016

Wisdom

Approximately three minutes after explaining to the dentist that my daughter’s syndrome means that she has difficulty controlling her emotions, she put on a pitch-perfect demonstration, and it was a corker. We had a full-on meltdown, with angry sobs and streaming tears. And it wouldn’t stop.

Her usual dentist had referred her to a chap at a different practice who is apparently the bod to go to for wisdom teeth extraction. We’d booked the day off school, and it was expected that her two bottom extra gnashers were going to be wrangled out in the surgery after a numbing injection.

But upon examination, the nice man explained very patiently that actually, now he’d seen the position of my girl's teeth for himself, he felt it best she be booked into hospital and have all four of the buggers out at the same time, under anaesthetic.

Oh dear. He tried to get across that this was necessary and would be the most comfortable for her (even taking into account her high pain threshold), but that really didn’t matter. Because the ‘best plan of action’ was not the expected plan of action.

I should have given my daughter a Plan B scenario beforehand. I normally do. It was a rookie error. I should have primed her with a: ‘of course, that’s what is supposed to happen today, unless...and if not...then this will be what we’ll do.”

But I hadn't. So the change threw her into a tizz. “What was the point of coming if they don’t take them out?” she half-sobbed, half-shouted. “Why did the other dentist say I’d have my teeth out TODAY?” She was fully distraught, fully blinkered, and totally unable to listen to any rational reasoning from anyone in the room, including, especially me. 

I did the only thing I could. Hugged her, waved the worried dental nurses away with a wink, mouthing: ‘She’ll be fine”, and walked my crying daughter out to the car and home.

She was fine. Later. After two hours. The waves of emotion had white-watered and crashed, and rolled back out to sea, and she was ready to take in the logic of the new plan.  Her inconsolable devastation at a ‘Big Change’ seemed like it had happened to a different person.

And, as always, always happens, a difficult day was very soon followed by a good ’un. 

She returned home from school this afternoon to say she’d enjoyed working on the school farm (yes, her school does actually have a farm attached to it - you calling us Country Bumpkins, loverr?).

“We were doing sheep stuff, Mum - you know, sorting them.”
“Sorting them how?”
“Putting the girls away from the boys.”
“Oh, I see. And...er...how did you tell the difference?”
“Well, the boy sheeps have testicles.”
“Oh, right.”
“And a penis.”
“OK.”
“But the girls don’t.”
“Wow, well, I didn’t realise you knew how to tell the difference so well.”
“Oh it’s easy. It’s just exactly the same as sorting humans you know - you look between the back legs for dangly bits.”

Song is Julie Byrne - Wisdom Teeth Song

Sunday, 18 September 2016

Rockin'

I had my mobile phone clamped to my ear as I rang Rachel, my daughter’s PWSBFF’s (Prader-Willi Syndrome Best Friend Forever’s) mum.

We were due to meet them at The Rockin’ Roadrunner Club’s Seaside Festival, a music festival in Northampton organised with and run for young people and adults with disabilities. A band was playing on one stage, dancers were strutting their stuff in front of another, and queues for the ice cream van snaked round us.

“We’ve just arrived - whereabouts are you?” I half-yelled into the phone, raising my voice above the general hubbub. “Can you see the helter skelter and the stage just behind it?” came Rachel’s reply, loud and clear in my ear. “Yep, we’re really close to that. I’ll stand and wave.” “OK, so will I.”

At this point, we both turned and flapped our arms about. The reason I know that she turned and flapped like me was that we were actually standing pretty much back-to-back with eachother, so close we could have high-fived if we’d have been a bit quicker about it. It explained why we’d been able to hear eachother so clearly.

PWSBFF was about to go on stage with her disabled dancing club. My girl clenched and rubbed her hands together in excitement. PWSBFF didn’t disappoint, performing a dancing/sign language routine to Cliff Richard’s ‘Summer Holiday’ with tremendous gusto - completely unfazed by the crowd.

Soon after, we followed her over the the main stage, where she took part in another set of routines, including a rather balletic one to an Adele song (don’t ask me which one, it was one about her being pissed off at her boyfriend. I realise this doesn’t narrow it down...)

Afterwards, we congratulated PWSBFF on her confident performance, and Rachel, to my delight, congratulated me on my arse. (I’ve lost some weight and had fitted into some more slender jeans than she’d seen me in before, and not only will I take an arse compliment whenever I can get one, I will bloody well write about it here so that there is some kind of official record).

It was snack time, so we gave the girls some nuclear-strength purple food-colouring Cherry Brandy lollipops, leaving them with stained teeth, tongues, and lips.  

On the hunt for fun photo opps, I got my girl to flex her muscles with some unfeasibly-muscled, historical Baywatch types (who looked suspiciously like the stilt walkers from the last Rockin’ Roadrunner event we went to). 

We then headed towards BBC DJ and all-round good egg Jo Whiley (an ambassador for Mencap, who often DJs for Rockin’ Roadrunner events along with her sister Frances - who has learning disabilities - and whose family helped found the club). 

“Can the girls have a photo with you?” I asked, having seen Jo pose for scores of similar requests with patience and good humour. “Of course!” she smiled, immediately chatting to PWSBFF about her performance after noticing her dance club T-shirt. In the meantime, I shot out a hand to grab my daughter as she wandered straight past Jo, on her way, presumably, to stand next to the tombola stall-holder. (If my daughter could summarise her narrow celebrity recognition factor it would be: ‘If you ain’t in Eastenders, you ain’t famous, mate).

We couldn’t stay too long, for Prader-Willi Syndrome hot meal timing related reasons. But we enjoyed our mini-festival, and our wanderings in the throng of happy, smiling faces. 

These events are something special. Seeing so many people with such a varied range of disabilities, watching, taking part, manning the stalls and carrying out a range of jobs, organising, running and enjoying the day, is special. Seeing my girl so pleased to meet up with her friend is special. 

Rockin’ Roadrunner - you rock. 



Video is Ben Folds - Rockin' The Suburbs

The next Rockin' Roadrunner Club event is a Christmas Club night at The Roadmender, Northampton. More details coming soon on their website, here.

Saturday, 17 September 2016

Eye

My daughter is fast approaching the age of 18. The downside of this is that it makes me feel old. The upside is that she now says she wants a glass of champagne on the day - which means I get to have the rest of the bottle.

Eighteen means - in paperwork adminy terms - she’ll be an adult, so things are now transitioning away. Her neuro-psychiatrist has referred her to adult services, social services are swapping, and her long-term paediatric consultant won’t be her long-term anything any more. 

We’ll miss Dr Keya. Astonishingly, in 18 years, my girl has had just two paediatricians. Dr Keya took over when the first one retired, and overlapped with him at his clinic, so she’s know my girl since she was tiny.

We saw her yesterday, and I was expecting it to be a goodbye check-up. But it didn’t quite work out like that.

Dr Keya spoke to my daughter directly like she always does, and always has, with kindness, patience and interest. She knew knew about my girl’s back operation being a success. She also knew all about her being admitted to hospital with pneumonia since she’d last seen her. “Oh, they all told me about it on Ward 5,” she said. “I’m so sorry I wasn’t there to see you, but I was on holiday.” 

“Now, because you will soon be an adult, you should be going to see a doctor who treats adults because this is what happens when you’re 18,” she explained. My girl nodded, solemnly. “You never know, you might see my husband because he looks after adults!” 

“He DOES?” my girl’s head snapped up like a meercat on full alert. This seemed to be the most astonishing thing she’d ever heard. 

Dr Keya couldn’t help giggling (a trait that makes me very fond of her), but composed herself and continued: “I’ve been talking to your endochrinologist, and do you remember we were going to look at your hormones and look at giving you that special hormone oestrogen?” My daughter nodded again. 

“Do you remember we said we’d have to wait until after your operation to look at that? Well, I think what we need to do is get that all sorted. We don’t want to hand you over until we’ve got our plan set up for that, so would you be OK coming back to see us again?” My girl nodded again. 

“Now, another thing you asked me last time, was that you wanted to know whether you needed to go back on growth hormone, because you and Mum thought you were a bit more tired now you didn’t take it. Well, we thought you could have a special test to find out if you need it. Would you be able to come and take the test?” Another nodded response.

The final check-up that wasn’t the final check-up after all, was over. We left, both happy at being listened to, feeling cared for, understanding what was planned, and pleased we’d be seeing Dr Keya for a while longer.

But we didn’t go straight home. The nurses and Dr Keya had all expressed concern about my eye, which was very bloodshot, sore, and teary. I’d had a problem when I’d taken out my contact lens that morning, when it had seemed to ‘stick’ a little as it came out. They advised me to swing by to the hospital walk-in urgent care centre before leaving. 

After being told there was a two hour wait, and waiting for exactly two hours, I was seen by a nurse, who diagnosed a ‘corneal abrasion’ (I’m sure they did two tracks on Later With Jools Holland last night). "It's like a grazed knee, but on your eyeball," the nurse explained. This is now my new favourite sentence.

So I’m typing this at home, a day later, with an ointmented-up eye, and sunglasses on, having been told it'll take at least 48 hours for it to heal and to stop being so sore. Let me point out it is a very dull day, and I am coming to the conclusion that shades-toting pop stars are utter idiots, because it's really very dark when you wear sunglasses indoors on a dull day. 

Mainly, though, I'm thinking about how my girl, my almost 18-year-old girl, sat with me yesterday through it all, people-watching all that time in the waiting room, asking me if I was OK when I puffed and panted through the pain. Thinking about how sometimes she can be amazingly grown-up. And also thinking ‘Ow, ow, ow’, of course, because I’m way more of a wuss than she is.


Video is Wilco - Red Eyed And Blue






Friday, 2 September 2016

Potterworld

We left Harry Potter World with the sounds of my son’s shouts of “Expelyouranus!’ ringing in my ears.

(I know it’s not actually called Harry Potter World, but I like to think I’m contributing to the communal raising of the bloodpressure of some overpaid marketing executive who fumes because no-one can be arsed to say ‘The Making Of Harry Potter Warner Bros. Studio Tour’).

We’d prepared for the visit by re-watching all the films over the summer holidays. I say ‘all’ but that’s not strictly true: we only watched the third one all the way through because ‘Lord He Who Shall Be Named Because It’s Only A Story Voldemort’ wasn’t in it. For the others, my daughter insists on covering her eyes, or requesting a fast forward whenever ‘He’s Got No Nose How Does He Smell - Awful Fiennes’ appears because she once had a nightmare about him. I tell you something - it doesn’t half cut down on the running times.

The tour, however, held no fears for her. It was a magical experience. Excluding the “Ye Olde How To Make Your Effing Money Vanishe Gifte Shoppe’, which is enough to give anyone nightmares. 

My girl’s eyes widened as soon as we walked into the Great Hall, and got wider as she saw animatronic beasts, incredibly detailed sets, costumes and props, The Hogwarts Express, Harry’s house, the Knight Bus, Hagrid’s motorbike and side car, and Diagon Alley.

She was given a wand training session, got to hold some actual props, including snitches and flying keys, and let out a huge ‘Wow!’ as she rounded a corner to be confronted by the incredible Hogwarts Castle model used for filming all those special effects-laden aerial shots.

“It was amazing,” she told me, as we drove back home. “I liked it ALL best, Mum.” 

My boy, still uttering toilet humour-filled incantations as he swished his Elder Wand around, was slightly more specific. “I liked the werewolf’s hairy bits.” 


Video is Warren Zevon - Werewolves Of London

Tuesday, 30 August 2016

Handbag

My daughter’s no-nonsense teacher asked her special needs sixth-formers to get ‘age appropriate bags’ over the summer holidays. Now, after five weeks of my two children at home, I’m the one with ‘age appropriate bags’ under my eyes, but I know what she meant. Mrs D felt that it might make my daughter and fellow pupils in her satellite class at mainstream school feel more grown up and more like the other students if they weren’t carrying round Minions packed lunch boxes and Hello Kitty satchels. Saying this, I vaguely remember wearing a Thomas The Tank Engine cardigan when I was a sixth-former, but I was a shocking attention seeker...

So today we went shopping, and my girl found this one. A pale pink faux-leather handbag big enough to fit her packed lunch box/school diary/pencil case/rain mac/purse/phone into. All the essentials.

She was utterly delighted with it. I swear that she was more thrilled with her cheap and cheerful shoulder bag than a reality star from The Only Way Is Essex would be with the latest Louis Vuitton.* (*Please note, I couldn’t name anyone from that show, and I had to Google ‘popular designer handbag brands’ to make that comment. I can tell you the name of the drummer in The Pogues, though, so I do know about important stuff).

We followed up our shopping expedition with a scheduled appointment with my daughter’s neuro-psychiatrist, where The Prof was duly amazed at her animated chit chat (my girl is normally a little shy with him). I explained that I didn’t think it was a sudden re-occurence of the extreme highs (part of her mild bi-polar type mood disorder that he has helped keep under control brilliantly over the past couple of years). “She’s just on a handbag high,” I explained. “Ah, my wife has those,” he nodded.

As if her day couldn’t get any better, I then took my glowing girl to Pizza Express for lunch, where a concerned waitress warned that my daughter’s order of Leggera (Light) Pollo Arrabbiata might be ‘too spicy for her’. My peri-peri, chilli, tabasco, reggae-reggae sauce-loving girl threw the woman some proper shade and pronounced: “That’s the POINT.”

But she hadn’t finished making me smile. I asked her if she wanted to go to the toilet before we left. She looked at me, earnestly, and answered in a flash: “Yes. I don’t want to wee in the street like a dog.”

Song is Shane MacGowan And The Popes - I'll Be Your Handbag. It's inappropriate and sweary. But that's the POINT.

Wednesday, 17 August 2016

Discharged


My girl is out of hospital and home. 

Over the last couple of days she's been unplugged from the various blinking, beeping, and puffing machines.

Last week’s terrifying talk of intensive care seems an awful long time ago.

I knew she was getting better when she dropped a baked bean from her dinner onto the ward floor, and was concerned that she was “minus one bean”.

Yesterday and today was mainly concerned with answering questions, over and over again.

“When am I going home?”
later amended to 
“What time am I going home?
changed to
“Will you cancel my dinner because I’ll be going?”
panic-changed to
“But what if I’m still here and I’ve got no dinner?”

The nurses were primed to provide the right answers. Food arrived shortly before we got the all clear to go, and in true Magnus Magnusson fashion (I’ve started, so I’ll finish), my daughter sat and polished off her meal while we waited, clutching her bag of medicine and discharge letter, watching her. Smiling. 

My girl is out of hospital and home.


Video is Charles Bradley - Good To Be Back Home

Sunday, 14 August 2016

Restoring




I have been informed by my daughter that her dad is better at shaking the water out of her oxygen tube than me. And that he makes a nicer hot chocolate. And he 'sleeps better'.

He replaced me - rather too effectively for my liking - last night.

I got some proper, luscious, soul-restoring sleep in my own proper, luscious, soul-restoring bed (and I might even have gone out beforehand, watched a band, and had a drink or two, or three. You might think that, but I couldn't possibly comment).

I returned to hospital to find my girl another few steps on the road to recovery from pneumonia.

She's on 21% oxygen now (essentially air, but still needed to help her airflow). Earlier she tucked into a Sunday dinner and om-nom-nommed. I restored my Mum Is Occasionally Better Than Dad status by bringing her two things she's not had before: 1) A little snack tub of Wasabi peas and 2) some no-sugar Capri Suns. The latter items were received with actual awe - it's the first time I've ever seen a no-sugar version of what she wistfully calls the 'pouchy drinks with too many calories', so I snapped up a few multi-packs from the supermarket shelf. My girl held one with Holy Grail-style reverence and examined the packet, wide-eyed. "They're only 10 calories, Mum, only 10!".

I was convinced this would be the highlight of the day, but I was proved wrong. The topper of the toppermost moments was when two of my nieces came to visit their cousin on the ward. My girl was thrilled, especially when a nurse asked if they were her sisters. She was tickled pink with this - and that's the thing, that's the brilliant, brilliant thing: she is pink now, not the horrible, pale, grey colour she was a few days ago.

Life is starting to look more normal.