Thursday, 4 October 2018

Pug


It’s my daughter’s 20th birthday today.

That floppy, limp, beautiful scrap of a baby girl has grown up to the grand, towering height of 4ft 10½in, and spent every day of the last two decades making life more full of life.

She opened her presents this morning before her minibus picked her up for college. She was stuffing her mobile phone into her rucksack, her ears - and mine - still ringing from the hearty rendition of Happy Birthday sung to her over 3G by her baritone-voiced friend Kevin.

Another birthday, another day of wonder.

I’m dreading next year, though. 

You see, every year, around her birthday, she talks about having a tattoo. And every year I tell her she needs to wait until she’s at least 21.

I wouldn’t mind so much, if I could be confident of steering her towards something discreet. 

“How about a tiny flower?,” I suggested, “Or the pretty feather from the PWSA UK logo? Something...nice.”

Her response to any suggestions is always a stubborn stare and a firm "No!". But lately there's something else, something specific. A choice. Her choice.

“I want a pug. A pug in a doughnut.”

(The idea for this stinky inking came up on a Google Images search for pug tattoos, for which her cousins will never be forgiven). 

My response? 

“I’d rather buy you both a doughnut and a real pug before I let you get that monstrosity.”

I think she now thinks we’re getting a dog.


Song is The Trumpet Hornpipe (Theme from Captain Pugwash).

Monday, 1 October 2018

Tribe


I’m just about to hit the sack after a weekend of Prader-Willi wonder with my tribe. 

My tribe is a rare and beautiful thing. A weird and wonderful collection of tots, toddlers, kids, teenagers, and adults with the same rare chromosome disorder.

Also included in the clan are siblings, parents, grandparents, and a bunch of dedicated staff from the PWSA UK (the tribe-wrangling charity that organised the Family Weekend at a strangely-monikered New Forest holiday park). New faces, old friends, all with common jitters and joys.

The event is one my daughter is extremely obsessed with, and can’t bear to miss. Her anxiety - always potentially flammable - was on tinderbox tenterhooks this year, because we’d not been able to book our place until a few weeks ago. (I wasn’t going to dob her in here, but sod it: my mum was terminally ill, and my girl waited nearly an entire day after her nanna died before she could contain herself no longer and blurted out: “Does this mean we can go to Sandy Balls?” It was heart-breaking and kind of funny. This mix is not unusual amongst our tribe).

So this weekend we met up and chatted, played, painted stuff, took a train ride, cuddled dogs, paddled, swam, jacuzzied, walked some alpacas, barbecued, tombola-ed, frisbeed, giggled, cajoled, soothed, whispered, yelled, smiled, held hands, drank, quizzed, and hijacked the dance floor. 

These are all things that we can do elsewhere (apart from walking some alpacas, I’d struggle to do that any place else, I’ll give you that). We can go to parties, mix with other families, have a holiday, but what we don’t usually have is our tribe. The people who get it. The people who KNOW. And sometimes that's all you need.


Song is A Tribe Called Quest - Can I Kick It?

Sunday, 30 September 2018

Found

It’s our 23rd wedding anniversary today. We’ve been married for half of my life and together for longer than that.  

If you want a quick summary: I grabbed hold of my teenage crush and never let go.  

From the start, it was obvious I’d fallen for him because I couldn’t stop smiling at the mention of his name. I still do, and he’s not even called Englebert or anything weird.   

Like everyone, I’ve had some twists and turns in life that could have crushed me. The only reason they didn’t is because he was here - and because I know he always has been, always is, and always will be.  

I mean, I bloody hope so. Otherwise I’m f***ed.  

He was the first man I got lost in a kiss with, and the first man who made me feel like I’d found my home.    

I’m still lost and found.   

This counts as an anniversary card, right?  



Song is Decemberists - Once In My Life. The lyrics are about someone waiting all their life for just something to go right for once. I was lucky; I only had to wait until I was 17 to meet my right.   

Saturday, 15 September 2018

Mum



My mum died. 

She went downhill very fast after living with leukaemia symptom-free for nearly three years. 

In the last few months, the disease took its grip and she began to tire. Determined not to spend months going back and forth from the hospital, she opted to stay at home, and while she was well enough, we packed her wheelchair in the car and took her out to the theatre, to the cinema, to the seaside. We had coffees at the pub and Sunday roasts at home. The family bound together tight. 

For the last week, a makeshift rota of her children, grandchildren, and other relatives and friends ensured that she had two of us on hand to help 24 hours a day. The palliative care team quietly and expertly aided and advised.

Mum died in a bed in the front room of the only house she’s ever lived in. The same house in which she was born, grew-up in, and later made her marital home. It happened in the early hours of August 27, two days after her 56th wedding anniversary. My dad, my brother, and my niece were at her bedside. I’d gone home for some sleep, exhausted from helping care for her. I arrived a few seconds too late to see her go, but I’m comforted by the knowledge that Dad was there, I know it was what she had chosen, and I know she wasn’t in pain.

I make sense of things by writing. I can’t easily talk about my emotions, but I can almost always put them down on a page, yet I’m struggling here. I want to tell you about my mum, and how she was, and how I feel, but I can’t. It’s raw, it’s unreal, it’s unfair, it’s too much, and I’m typing and deleting and I can’t find the words. I can’t get it right.

But I can share this.

In the midst of it, towards the end, when I hadn’t slept, and had hardly seen my husband or kids for days, I grabbed an evening at home, and my daughter called me over to sit next to her on the sofa.

“You must watch this, Mum,” she instructed, and pressed play on a episode of Katie Morag, a children’s show about a little girl living on a fictitious Scottish island. 

The action unfolded. I say action, but Katie Morag isn’t exactly Mission Impossible; it’s usually something to do with woolly jumpers and ceilidhs and sheep.

Sure enough, sheep featured heavily in this particular story. I’ll give you a quick precis: Katie’s grandma’s elderly ewe was poorly and Katie was concerned that the sheep would die (spoiler: she didn’t). Cue Granny Island telling Katie about how animals and humans can’t live forever and it’s the circle of life, etc. 

The next scene is at Katie’s bedtime, when her dad is tucking her in and they start talking about her Grandad, who died before she was born. Katie said her Grandad was funny and liked singing songs, but asked her dad how she knew this. Her dad explained she was able to feel like she’d known him because the family still talked about him and shared all their memories of him.

All through this, my girl is looking at me pointedly, then, with a nod of the head, directing my gaze to the telly, then catching my eye and nodding at me again.

“Do you see, Mum?”

Yes, I see, sweetheart.


Song is Mavis Staples - You Are Not Alone




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