Friday, 13 July 2018

Prom


We had a team in place.

Her hair was done by a local hairdresser who’d offered to spruce up the special school pupils for free. 

My brother took her to the appointment, then dropped her off at Grandad’s.

My friend popped in to do her make-up.

My other mate looked after my boy after school.

I fretted as my mum had a blood transfusion at hospital, hoping the drip drip drip would drop drop drop fast enough to let me get back home in time to get my daughter into her dress and take her to her school leavers’ prom.

I made it in time.

We did it.

She's tucked up in bed now. Her face was flushed when we picked her up. Apparently, she had danced all night.

"They played Abba, The Greatest Showman, and Grease - you're the one that I want, ooh, ooh, ooh," she gushed.

I left her make-up on. Chucked her pills down her, let her make a token effort at cleaning her teeth. Tucked her in. 

She was shattered, and utterly content.

A day of running around. Organising and launching the team. Worth every clock-watching second of it. 

We did it.

Look at her.

Just look.


Video is This Is Me, from The Greatest Showman.





Thursday, 5 July 2018

There


They were there when I had to stare at the empty black hole of an ultrasound screen.

They were there for the joy of a beating heart and the birth of a beautiful girl. 

They were there when she was diagnosed.

They were there in the long days and nights in the special care baby unit, when she couldn’t breathe or feed. 

They were there when she needed help with moving, speaking, eating, walking, learning.

They were there when her spine needed bracing and fusing.

They were there when her moods spiralled.

They were there with her medicines and scans.

They were there with their advice.

They were there with their hugs.

They were there for scares about big diseases.

They were there when more black holes on more empty ultrasound screens destroyed hope.

They were there for the joy of another beating heart and the birth of a beautiful boy.

They were there for my mum-in-law as she lost herself.

They were there for my dad when we almost lost him.

They are there for my mum as we are losing her. 

They are there for my husband as they check him so he can stick around.

They are 70 today. 

They are the NHS. 

They are there.

In the madness of now, we need them there, more than ever.


Song is Eels - There I Said It


Sunday, 1 July 2018

Pilots


The ear defenders were on before we got out of the car, despite the fact the flying display wasn’t due to start for another hour.

“I don’t like loud noises, do I?” my daughter said, verging on a mild shout, because her hearing was muffled.

Thanks to a friend, we’d scored some free tickets to a military pageant airshow at a local airfield.

As with all outings with a Prader-Willi Syndrome participant, grub was sorted first, with a picnic served as soon as we’d staked out our pitch behind a fence next to the grassy runway.

Then, after spending way too long cack-handedly working out how to tie an umbrella to a beach chair to provide some shade for my girl on a blazingly sunny day, we sat back to watch the planes soar overhead.

My daughter’s anxiety levels were at a low hum, with minor issues including any suspected presence of a buzzy insect within 10 feet of her, a sore eye from some wayward sun cream, and a potential but averted crisis over a change of mind about the choice of ice lolly from Calyppo to Twister.

But we piloted her. Subtle rudder changes. The odd little steering adjustment.

She sat and chatted loudly, watched the planes loop the loop, wrung her hands and fiddled with her fiddler, sipped a capuccino, had a micro nap, enquired if we’d be home for ‘normal tea time’, and grinned, a lot. 

Meanwhile my friend and I invented a new type of human cooling system (ice packs down the cleavage, henceforth to be referred to as a Tit Fridge).

All in all it was a high flying day.


Video is Goldfrapp - Pilots

Monday, 28 May 2018

Boing


On a hot and muggy Bank Holiday Monday, we head off to Extreme 360, a trampolining centre where children go to bounce and sweat. 

Extremely sporty younger child is planning his tricks and somersaults out loud in the car. 

His extremely non-sporty, older sibling is also visualising her imminent exercise.

“Four,” says a decisive voice from the back seat.

“What’s that? Four what?” I ask.

“Four bounces, that’s what I think I’ll do,” my daughter informs the rest of the family, causing much giggling, a small portion of which is stifled but, in all honesty, mostly stifle-free.

I tell her that as we’ve booked her session at a cost of £10 plus £2 for socks, those four bounces would be somewhat expensive.

“£3 a bounce is a little bit much, sweetheart. Maybe you could do some more?” I suggest.

“Okay. Five, then.”

Her brother, demonstrating the kindness that I need to remember on other occasions when he’s being a nine-year-old teenager, picked her a safe trampoline to use, not too close to the full-speed lunatic bouncers who leap across the entire warehouse like wallabies on amphetamines. (He did this before he joined the wallabies on amphetamines, obviously). 

And, in the end, my girl managed about 15 minutes of gentle wandering, slow-motion ball throwing, and maybe 150 little bounces. Being active with Prader-Willi Syndrome isn’t always about the big achievements. Tiny little springy ones can be victories, too.


Song is The Chemical Brothers - Galaxy Bounce

Sunday, 6 May 2018

Skies


I’ve got a slightly burnt nose, and a warm glow that’s got nothing to do with today’s sunshine.

My girl is tucked up in bed, fast asleep. She took part in WalkOver PWS (a sponsored walk for the Prader-Willi Syndrome Association UK), and by early evening was puffed. Puffed up with pride, and puffed out with effort.

Walking 4km on a hot day isn’t easy when you have hypotonia (weak muscle tone). It isn’t easy when things don't go exactly to plan (like when your PWBFF [Prader-Willi Syndrome Best Friend Forever] gets stuck in traffic and doesn’t arrive in time to walk with you). 

But when you have PWS, you’re stubborn. And if you’ve set your mind to doing something, you’ll damn well do it.

More than 100 walkers tackled the lakeside yomp around Nene Valley Park today. Many of them were older people with PWS, attending with carers and managers from residential homes. 

They ambled, marched, sauntered, and strode, they stopped for a chat, they held hands, they giggled, they sweated, and some of them even went round twice. 

Two PWS walkers, one aged 10 and one aged 22, were holding hands tightly, and beaming at eachother.
I asked them how long they’d been friends. 

“Oh we just met today,” they explained.

“It’s nice to meet other people with Prader-Willi, isn’t it? Because other people don’t always get it, do they...” I said.

“No. They DO NOT.”

But today was all about getting it. A bunch of people with common goals: raising money and awareness for a charity close to their hearts, and getting together for a shared day of fun and sunshine, and telling a few inquisitive passers-by a bit about this odd little syndrome and the massive effect it has on people’s lives.

I was super proud of my girl. And super proud of a bunch of my rugby teammates who answered the call to give up the best part of their Bank Holiday Sunday and help marshal the walk (including one who accompanied my daughter on her march round). 

At the end, we sprawled out in the sun to tuck into our healthy packed lunches, and were, I thought, being fairly discreet about having a sneaky prosecco, until PWSBFF (who had finally arrived and had just completed a late lap of the lake), loudly announced: “My daddy would like some of that,” and just in case anyone hadn’t heard, clarifying with: “They’ve got ALCOHOL.”

Old friends were reunited. New friendships were forged. Dogs were petted. Smoothies were slurped. Hugs were given. Giggles were shared. And obsessions (Coronation Street, books and bus travel in my daughter’s case) were discussed. 

Life is full of difficult days. But a good one is always around the corner. And when you get one as good as this, the clear blue skies seem endless.

If you'd like to sponsor my daughter for her efforts, please click here...


Song is Justin Timberlake - Can't Stop The Feeling

Tuesday, 27 March 2018

Muppet

I love my texts from my daughter. She sends them to me from school or college if she's forgotten something or has something on her mind.
('Landyard' in this one means the lanyard on her ID card for school):






Friday, 23 March 2018

Cappucinnapology

The phone rang. It was my daughter’s carer, telling me my girl was in Café Nero, she had dug herself in, heel-first, and wasn’t leaving. It was a full-on, 'horse-at-Becher’s-Brook-in-the-Grand-National' refusal. 

We haven’t had one for a while.

Every other Saturday my daughter goes out on a little trip, with a handful of other young people/adults with disabilities. They have a coffee, and go to the cinema or the bowling alley. They are encouraged to use their money to order and pay, and it’s basically good practice in social interaction and independence.

My girl was acing the independence bit and flunking out of the social interaction module, by getting herself tied up in knots over the discussion of what film they were going to see, putting her blinkers on, and basically shutting down to any instructions. Tears and a little bit of temper were involved.

Putting me on the phone didn’t help: she ‘mysteriously’ couldn’t hear me.

In the end it needed a mercy dash in the car to get her home so the other girls could head off to the film my daughter hadn’t liked the sound of.

Later, when my girl left the Zone of Anxiety, I was able to chat to her and tell her how important it was that she does what her carer says. 

She nodded.

She went very quiet. 

She fetched her tablet and painstakingly tapped out an email to her carer:

I verry sorry I had a melt down and shouted at you in cafe neo and I am excremliy sorry that I refused to in your car and didn't come as i was told and i realised i was acting like a little girl and not acting like a 19teen year old. mummy explain to me that i have to come as i am told overwise it isnt safe to come out with you and i wont do this kind of behaler agan see hyou inweek on onsaturday and iam worried that you dont wont to take me out eney more but i still wont to come out with you


And yesterday I found this letter of apology to...erm...Café Nero.


Translation: I am very sorry I had a meltdown and shouting in your cafe. This is my favourite coffee shop. I have realised people want to have peace and quiet to drink their coffee and not listen to me crying and shouting. Yours, sincerely xx


As for my apology?  Nope, still waiting. But, hey, I know my place, and it's way down the chain. Beneath the coffee franchise, obviously.


Song is Nirvana - All Apologies