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

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

Sunday, 4 March 2018

Thaw


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, and I 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)

Thursday, 11 January 2018

Vision

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.



Song is Snowbird - All Wishes Are Ghosts