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.”
Addendum:
“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...
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).
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.
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.
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.
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.
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).
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.
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
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
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.
I am, by extension, better informed about recent snowfall across Britain than most TV weather presenters. Seriously, slap a bit of lippy on me, give me a green screen and a little button thingy to press, and I could give Carol Kirkwood a run for her money.
This is because there was a new entry in the charts of my daughter’s Prader-Willi Syndrome Next Level Obsessions this week, as SNOW rocketed up the bestseller list, passing BOOKS and - incredibly - FOOD, to take the coveted No 1 slot.
“Mum, how much snow is there where [insert different family member or friend’s name here] lives? Mum, we’ve got more snow than [insert random place name], haven’t we? Mum, my school is going to be closed isn’t it? Mum, is [insert random school name] going to be open? Mum, [insert random day] is going to be the most snowy, isn’t it?”
All of these questions (which continued for approximately four days) have needed to be answered. And have been responded to with daughter’s alarming new habit of essentially accusing me of #fakenews. So I’ve had to put the Google results, Met Office pages, online photos and videos from social media right under her nose, several times over, to convince her of the validity of my answers.
Today, things were back to normal. The temperature has gone up a few degrees, and the snow has pretty much melted. I was supposed to be doing my usual Sunday morning duties of helping corral eight and nine year olds at minis rugby, where for some reason I have ended up as an Assistant Coach, despite the fact that my boy tried rugby for four weeks, then decided he’d prefer to be home in the warm, so I go and he doesn’t.
But today’s session was cancelled, so I took my girl for a little walk down to the pub for a bit of mum and daughter time, a cup of coffee and a chat.
“We’re going out for lunch on the last day of term, Mum, so you need to see the menu, andI liked it when I had pasta arrabiata when we went on the Prader-Willi weekend, and McDonalds’ peri-peri wraps are quite healthy aren’t they, and can I have a melon for my fruit today.”
Yep. all back to normal.
Video is Laura Marling - Goodbye England (Covered In Snow)
Anxiety besets us all, but when you’re the parent of a child with PWS, you get beset by their besetting too.
We had a seemingly simple task to complete after school today: an eye test.
It took 80 minutes of cajoling, coaching, explaining, shushing and minor reprimanding. It resulted in an eventual victory with a side order of tactical retreat. But it’s the first time in Dry January that I’ve been sorely tempted to get wet.
My girl was a bit tired after a busy day. She was in a questioning mood, which can be either endearing when well-timed or exasperating when not.
But what sucked up the time today was her obsession with the details. From the moment we arrived at the opticians, I knew the path to glasses was going to be labyrinthine.
Firstly, she started talking about having to pay for her specs now she’s over 18. She’d overheard me saying something about it to her dad earlier (from a distance of one floor and three rooms away, thanks to her bat-like hearing). So she wanted to announce it loudly in the shop - I think essentially just to show off to staff and other customers about being an adult - and she did. Many, many times, before, during and after the eye test.
The optician was given both sides of my daughter’s all or nothing conversational skills. When asked to read out the letters, my girl stared into space, day-dreamed, looked like she might actually fall asleep at one point, but mainly uttered each letter in-cred-ib-ly slow-ly, with in-cred-ib-ly long pauses between each one. She seemed to be struggling, but there’s this detective game that needs to go on, in assessing whether she is really looking where she’s supposed to, whether she’s just taking her time because processing things does take her longer than most other people, or whether she’s just saying she can’t see very well because she fancies a new pair of glasses. It’s a challenge.
On the other hand, my daughter sped up, dramatically, at exactly the wrong times: whenever the optician wanted to explain anything or give her instructions, instead of deliberations and pauses, my girl unleashed a non-stop barrage of circular statements and questions at the optician, at me, and even at herself.
It took patience and time to get through the test. And the optician did remarkably well not to lose the will to live, because I very nearly did, and I’m the mum.
Then came the bit where you sort out the frames. It started well with my girl making a miraculously fast choice (only because she had very specific criteria for them being ‘roundish’, ‘with no sticky on nose bits’, and with ‘a pattern on the inside’, and there only happened to be one pair that ticked all three boxes, Hallelulah!)
But it then took forever as she began to get slighty panicky and very question-spewy at pretty much everything the assistant was saying about lens types, coatings, sizing, price, offers, expected delivery, and there might have been even more stuff but I couldn’t bloody hear because my daughter wouldn’t bloody shut up!
We left, past tea time (I blamed myself for a booking a dangerous appointment time). I’d declined to sort out the free second pair offer - that could wait until another day when I’d had chance to charge up my resolve, and she’d got some food in her belly.
I forked out a vision-blurring amount of money, and we headed home. And I had that thought, that selfish thought that I sometimes have, and hate myself for. I wished things were different. Simpler. That my 19-year-old girl could get herself kitted out with new specs like any other typical 19-year-old.
She’ll do something atypically delightful tomorrow, I know, that will make me laugh, and make me grateful and give me the joy that only she sparks. And my ugly wish will melt away. Because it is ugly. (It’s just struck me how weird it is how it sometimes surfaces over small things like an eye test - compared to the hospital scans and operations this is easy, beginners’ level stuff).
Wishing she didn’t have PWS is pointless and reductive and I can’t wish it really, it’s not fair, because she wouldn’t be her, she wouldn’t BE without it. But I’ll know I’ve wished it all the same.
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.
