Sunday, 31 March 2019


It was a day with all of the feelings.

I’m not talking about my daughter, and the cascades and surges of emotion that her Prader-Willi Syndrome lets loose. (Although we had this, of course. The clocks went back, for God’s sake, what did you expect?  If your answer was: ‘1001 questions about the intangible concept of time, expressed in mainly low level panic about having had to get up TOO EARLY’, then you are correct! If you’re interested, my daughter’s other topics of panic for today were her losing a tupperware pot at college in the week, and needing EXACTLY the same pot for her packed lunch TOMORROW, plus a whole whack-a-mole pop-up set of worries about a forthcoming residential trip).

No, it wasn’t just her battling with all of the feelings, it was me, too. And it was all about what was missing.

Today was a day that I’d told myself didn’t matter and didn’t mean anything different from any other, but it did. It was Mothers’ Day. 

It’s the first without my mum. She died last August.

It was the first without my mum-in-law, who died two weeks ago.

I kept busy. The morning was spent helping coach the U10s at minis rugby, where my son actually agreed to join me and join in, whilst my girl sat in the clubhouse, doing word searches, as good as gold. The afternoon was spent dealing with the fallout from my daughter's clocks and pots and trip meltdowns, then popping to the cemetery to spend a quiet minute or two at Mum’s grave. I walked through the gate to be hit firstly by the glorious burst of colour from the fresh flowers that seemed to be everywhere, and secondly by the realisation that nearly every bouquet was for other missing mums.

I cooked a roast for my dad. Eyed up two empty chairs. Two ropey, battered, faux leather dining table chairs that were snugly tucked in against the wall, because we hadn’t had to pull the table out like normal, because the new normal is two missing mums.

The new normal still feels like an upside down world. But an upside down moment saved it.

My girl presented me with a keyring she’d made at college. It has a winged heart and some letter beads spelling out ‘mum’.  Or rather ‘mnm’. I flipped it over a few times, and twizzled the u bead round, but she’d put it on the wrong way. 

It can’t be fixed. It’s beautiful. It’s imperfect. It’s my girl. 

Song is Jesus & Mary Chain - Upside Down

Tuesday, 15 January 2019


My daughter’s cinematic tastes are complicated, sometimes rigidly rule-based, and at other times capricious.

Despite loving all the Pixar films when she was younger, she now flatly refuses to watch any Disney animated feature, although live action Disney is acceptable. And, as you can imagine, the live action/animation mix of Mary Poppins Returns was VERY DIFFICULT TO DECIDE ABOUT.

Every other Saturday, my girl goes out with a small group of other young people/adults with disabilities, usually for a coffee and a cinema visit. She doesn’t always get to choose the film, which can cause problems, and this Saturday she came home a little disappointed after sitting through Aquaman. (Apparently, according the reviews, it’s a bit of a day-glow mess of a movie. Although it has got the 6ft4in tall redeeming feature of chunky man beast Jason Momoa in it, so it can’t be all bad).

“Mum, I didn’t want to see it. I really want to see Colette. I saw a trailer and it looked good.”

I vaguely recalled reading reviews of the film - an historical biopic of its titular French writer and performer. Words like ‘gender fluid’ and ‘kinky’ had come up.

I checked it out on the BBFC website, and decided my daughter could handle a few scenes of nudity and sex, so I agreed to take her to the cinema to see it today after college.

I gave her a pre-screening warning of: “It’s got some rude bits in it.”

“That’s OK. I can cope,” she deadpanned. (I wondered if I would be able to).

Two hours later she had proved that she could cope. She asked no questions throughout the screening, despite the intricacies of a plot - most of which must have sailed over her head - including elements such as: ghost-writing; the selling off of publication rights; intellectual awakenings; gender politics; and a selection of marital, extra-marital, lesbian, and mildly fetishistic, sex scenes.

“I really like that. It was brilliant,” she said, beaming.

There was one thing, you see, that I haven’t mentioned. Keira Knightley (Colette), had a secret weapon to ensure my daughter’s undying attention. It only appeared in a couple of scenes, but it was enough to make my girl shake with excitement and remain rapt throughout.

She had a pug.

Song is Ed Harcourt - Ghostwriter

Related posts: Pug

Saturday, 22 December 2018


Coffee and toast in the pub with the family always generates some belly laughs, especially if my daughter gets extra talkative after her special Saturday treat of half a pint of cloudy cider.

We were discussing Christmas presents, and how I’m a stingy aunty who cuts off her nieces and nephews at the age of 21. Seeing the horrified look on my girl’s face, I realise she thinks the 21-year-old rule might apply to her from next year. 

“No, just nieces and nephews, sweetheart - you’ll still get presents! And also, remember that some of your cousins have babies and now it’s the turn of the babies to get the presents.”

My daughter contemplates this information.

“Will you buy presents for my babies if I get married?”

“Yes, sweetheart, but remember you can’t have babies because you have Prader-Willi Syndrome.”

“But I could marry someone with babies.”

“Yes, that’s true.”

“I could marry a lady who’s pregnant.”

“That’s also true, although you’d have to have a very specific dating profile.”

More contemplation. My girl turns to her cousin Kate, sitting next to her.

“Kate, will you have babies?”

Kate grins and says that she hopes she will, ‘one day’.

Pause. And then a declaration from my girl that is loud enough to be heard over the piped sounds of All I Want For Christmas Is You:

“OK. What you need is...some sperm.”


“Yeah, you need to go to one of those places where you get your sperm from.”

Merry Christmas. And remember to baste your turkey.

Video is Sharon Jones & The Dap Kings performing some songs from their Christmas Album, which I've been playing while posting this. The final song [at 9:12], Big Bulbs (lyrics: 'Baby, you've got them big bulbs, baby you've got them big bulbs,") has sparked a whole other conversation...

Thursday, 4 October 2018


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


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


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


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