Friday, 13 July 2018


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


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


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