Day Twenty Six

So it’s done. 

After 25 blogs in 26 days I rashly vowed to let my son loose on my hair with electric clippers in what was effectively a mum sanctioned revenge attack.

The proviso was that my fundraising total for the blogathon for the Prader-Willi Syndrome Association UK needed to tip over the £1000 mark and hit £1250 by this afternoon. 

I mentioned this yesterday teatime. The Just Giving notifications began to ping like a bleeding Nintendo game. We passed the target, you utter bastards. Thank you, thank you, thank you. I can resent you and thank you at the same time, can’t I? 

Here’s the video. I do recommend watching all the way through, as my boy is on top smart-arsery form, and my daughter is providing a classic PWS demonstration of just how easily slight panic can set in in a new and unfamiliar situation.

I keep rubbing my head. My boy thinks I do NOT look like Sinead O’Connor, but DO look like Matt Lucas. 

However, my husband and I just came up with a better lookeelikee. We’re going to do some painting next week and we have just realised we can now re-enact the decorating scene from The Royle Family. And yes, I’m Twiggy.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

The Royle Family - Jim & Twiggy

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I wrote 26 blogs in 26 days, then let my boy loose on my hair with electric clippers. The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living.

Please give something if you haven't already.Thank you to each and every one of you who have donated. 

Day Twenty Five

I like a big finish.

Tomorrow will be the last of my 26 blogs in 26 days to raise money for the Prader-Willi Syndrome Association, the charity closest to my heart and soul.

Other people may have chosen more physical feats for their 2.6 Challenges, but I firmly believe that prattling on has its place in the world, and I have planted my prattling on flag here with pride.

As I write this, the total on my fundraising page stands just shy of a grand. This is amazing. 

But I’ve decided to make a rash promise to try and squeeze a few more quid out of people.

This could be because of my altruistic nature. It could possibly have more to do with my befuddled lockdown brain finally running out of things to say as I lose the plot entirely.  You can examine the evidence if you like - I just had a re-read of all the posts so far and I’m frankly surprised today’s doesn’t just say ‘All work and no play makes Jack a dull boy’.

So I’m making a pledge. If I can get another £250 for the PWSA UK by tomorrow afternoon, I will shave my head.

Or rather, I will let my 11-year-old son loose on me with the clippers. Which will be an extreme act of revenge for him, as I gave him a very bad buzzcut near the start of the lockdown, which he still hasn’t forgiven me for eight weeks later. I’m started to wish ‘gloating glee’ hadn’t been my go-to demeanour. The words ‘suck it up, baldy boy’ are going to return to haunt me, aren’t they?

I know this is not an original idea. People have shaved their heads for charity since as long as I can remember. 

But what you have to take into account is my big old potato face, which has filled out considerably due to reckless levels of beer as I have inventively interpreted government advice to Stay Home as being Stay Home and Get Pished. (This is making the Stay Alert bit much more difficult, I can tell you).

Mine is not an elfin visage, with delicate features. As much as I would love to end up looking like Sinead O’Connor, I have more than a sneaking suspicion I will bear a far greater resemblance to Varys from Game of Thrones. Or that bald woman out of Total Recall. 

So look, 100 of you, divvy up. £2.50 each. Let’s say £2.60 to tie in with the 2.6 theme.

And you can all have a great big laugh at my great fat head.

Oh God. I’m going to regret this. Share away, you bastards, share away.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is James Brown - Payback

Film clip =  'All work and no play...' - The Shining

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. I love each and every one of you who donated. But I will have a little bit of hate for those of you who contribute in this little last push if you manage to force me to look like an idiot for the next few months. You do realise that if you make me do this, a cure will be found instantly for Covid-19 and millions of people will be getting their hair done by professionals, who would NEVER let me do this.

Day Twenty Four

I just fell through a portal into the past. 

The sight of our newborn baby girl in an incubator in the hospital's Special Care Baby Unit, captured in this photo from 21 years ago, was skin-tinglingly visceral.

I can feel the oppressive heat of the room, hear the competing beeps from the various machines, remember how overwhelmed, how tired, how shell-shocked I was, and how tiny and helpless she looked.

Those early days were hard. The diagnosis of Prader-Willi Syndrome was still a few weeks away. No-one could explain why our girl was so weak and floppy, and was unable to feed without a tube. 

Those little porthole doors gave us access, to hold her tiny fingers, and sit and stare and worry and hope.

The worry and hope has never gone away. We anticipated then that life was going to be different, and it is, and always will be. 

She’s in the next room, talking to me as I write this. She loves to suddenly start speaking to me with no warning from a completely different area of the house. In the spirit of this post, I should tell you that my heart was filled with joy at being able to hold a conversation with the woman this little baby in the picture has grown up to be. I should tell you that, but my actual reply was: “Will you give it a rest? I am NOT having a conversation with you when you’re in a different ROOM!” Don’t judge me, it’s bloody annoying.

Yeah, life is different, just as we expected. But it’s unexpectedly better. Better than we ever thought it could be back then, through that portal, holding her hand, just managing to hold on.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is Nick Drake - Time Has Told Me

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. In those difficult early days, they were there for us. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. Two more days, two more days, we can do it. 

Day Twenty Three

I am used to random queries from my daughter. 

My favourite ever was: “Is Hitler in the school toilets?” The answer, which should come as no surprise to you, was no. Let’s face it, however desperate a time-travelling Hitler was for a fuhrerdumpf he’d never have got past reception, would he?

Today’s question, which has been unravelling nicely over lockdown, like my sanity, wasn’t quite to that standard. 

“If I sleep on my back, I won’t get taller, will I?” my girl asked, several times. Phase 1 was launched.
“No. You won’t,” I replied.

“Mum, if I sleep on my back, I won’t get taller, will I, and that’s good if I don’t get taller, isn’t it?” Phase 2 had been initiated.

“Yes.”

“Mum, if I sleep on my back, I won’t get taller, will I, and that’s good if I don’t get taller, isn’t it, because I can still ride my trike and my feet can reach the pedals.” Boom! Phase 3 was deployed and detonated.

I don’t know where to start with the flaws in her logic. Quite how choosing to sleep on her back could affect her height is beyond me. And wouldn’t it be getting shorter, not taller, that would make reaching the pedals a problem? There's also the small matter of her being 21, so her growing years are over, let alone the fact she had spinal fusion surgery at the age of 10.

But pointing this out would be a dangerous plan. Best not to get sucked in. A Prader-Willi person on a questioning jag reminds me for some reason of that quote from The Terminator, you know the one...

"That terminator is out there. It cannot be bargained with. It cannot be reasoned with. It doesn't feel pity, or remorse, or fear. And it absolutely will not stop, ever, until you are dead.".

Actually, on second thoughts, that's a bit extreme. A PWS person would stop when it was teatime. But you get the picture; they can go on a bit. The best tactics in this situation, is to agree, firmly, and leave the room quicker than Adolf jettisoning his kampf.

The only problem today was the Second Front. Running away from one child only put me in the line of fire from the other.

My boy had decided early on that this Monday would be an ‘appalling, anarchic attitude and backchat during his home school lessons’ kind of Monday. 

Attempting to supervise him on a piece of work that should have taken just a few minutes saw me eventually resort to several embarrassing clichés, including: “It’s your own time you’re wasting.”

But the smart little bastard can always burst my bubble. Right when my emotion level was bubbling around ‘abolutely livid’, I warned him: “Don’t laugh. If nobody else is laughing then it’s not funny,” I said.

He didn’t miss a beat: “Tell Uncle Ian that.”

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is Johnny Nash - There Are More Questions Than Answers

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. You've got three more days of this and then I'll stop, I mean that's worth something, isn't it?

Day Twenty Two

I’ve been thinking about shields.

This may be because my son and I are up to Captain America: Civil War in our marathon watching of the Marvel films in chronological order of narrative. The little nerd.

Or it could because the most vulnerable have been asked to obey a ‘shielding’ strategy and not leave the house for 12 weeks to protect themselves from the risk on contracting Covid-19.

But I understand shielding. 

Never mind this current madness, in normal times all I want to do is protect my daughter from the dangers and risks of everyday life. And for that I have a shield.

My shield is invisible. It’s not made up of vibranium (Note to self: have Ann Summers released a Marvel Pneumatic Universe tie-in edition of the Rampant Rabbit called the Vibranium? If not, why not?).

No, my shield has been constructed out of every little piece of my Prader-Willi Syndrome experience painstakingly stockpiled over the last 21 years.

It’s every fragment of knowledge, every mistake I’ve learned from, every tip and trick I’ve been told. Bonded together, these pieces give me the power to deflect most of the missiles life bombards us with.

I’m no superhero. I think I’ve proved this with the way this lycra skin-tight Avengers costume is disappearing up my bumcrack.

No, all I’m saying is I’ve been armed. I’ve been given PPE. 

The Prader-Willi Syndrome Association has distributed Personal Protection Equipment to me and thousands like me over many years. Knowledge. Advice. Shared Experience. Love. That’s the shield they’ve given me.

I would have preferred Thor’s hammer but you can’t have everything. And yes, that is a euphemism. 

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is The Breeders - Divine Hammer

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. Finally, a quick message to Jacqueline Gold, CEO of Ann Summers. If you introduce The Vibranium to your range the PWSA UK needs to get 50% of all profits, luv, or I'll sue the arse off you.

Day Twenty One

I have discussed my daughter’s fascistic tendencies before. I am convinced if we lived in different times that her love of rules would have seen her indocrinated into the Hitler Youth in a flash. There’s little doubt she would have sold me and her dad down the river, the little Nazi.

We get told off. For doing things we shouldn’t. For not doing things we said we should. For not doing things we said we should when we said we would. You get the picture.

We have a labrador. A patient, well-behaved, 11-year-old labrador. He’s only lived with us for nine months, but he’s part of the family.

My girl is in charge of his food. Boy, oh boy, is she in charge of his food. He receives a cup of dried dog food in the morning, meticulously measured to the line, and the same again in the evening. Once every three days, he is allowed a small treat. 

If my daughter hears the cupboard being opened and the rustle of the snack packet (which she can do from several rooms away), her accusatory voice rings out: “Jazz is NOT allowed a treat today. He WILL NOT get overweight.”

People with Prader-Willi Syndrome have to have their food intake strictly controlled, to prevent them becoming morbidly obese. Their bodies don’t convert fat to muscle efficiently, so have to be on less calories than average, which is especially challenging as they never physically feel full up. 

I think my PWS daughter, whose own mealtime and snack regime is so rigid, is enjoying being in control. She has no real agency over her food, so she’s channelling her inner frustration to take a controlling interest in the dog’s diet.

Today, Jazz, being a labrador, rebelled. At lunchtime, my son had a slice of bread cut up into soldiers sitting next to his soup bowl - a little too close to the edge of the table. The dog spotted his chance, and snaffled a finger of bread.

He got told off, in no uncertain terms.

“It’s just not good enough. You will be banned from the house for a day for this behaviour,” my girl informed him.

Harsh. So very harsh.

(I let him back in. I’m not a monster).

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is The Fall - Who Makes The Nazis?

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. If you don't do it, my daughter might report you to the SS or something. A huge thank you to the anonymous donor who I'm half convinced might have made a mistake with the amount yesterday. Get in touch if this is the case!  

Day Twenty

Once a biker, always a biker.

I first wrote about The Sons & Daughters Of Anarchy (East Bedfordshire Division) on this blog a few years ago (See the bottom photo).

There’s been a few tattoos and meths busts since then, and Knuckles and Pugface have had their share of beefs with the West Bedfordshire Division (splitters!)

Now my girl has some new wheels, the gang have got a bloodthirsty new attack dog, Fang, and today they were ready to hit the mean streets of... our small market town.

Their biker gang is so intimidating, people actively cross the street to avoid them. Well, they do at the moment, but that’s probably got something to do with Covid-inspired social distancing. 

But there’s no doubt they are dangerous. My boy’s levels of insouciance leave previously confident passers-by feeling strangely inadequate. And my daughter - who gets easily distracted by someone in her periphery and then unthinkingly steers that way as she turns her head to be nosy - has a good chance of mowing down anyone who steps within the 2m zone.

Today there were no hit and runs, and no run-ins with the law. I suppose I should be disappointed, seeing as I am the the gang’s leader, Bad Ass Mother Drake (number of tattoos - one; number of kills - at least three goldfish; time taken to squeeze into leather trousers - 45 minutes including 5 minutes of actual passing out).

I should protect my rep, and not get soft. But watching my girl on her trike, sorry, hog, makes me very happy. Due to her Prader-Willi Syndrome, her weak muscle tone and poor balance means cycling is a problem, but the three wheels gives her the solid base she needs. She’s a bit heavy on the braking, and you have to occasionally move like lightning to direct her towards the middle of a drop kerb, but once she’s on a safe flat path, she can pedal along in her fiercely determined way.

It makes me fiercely proud.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is The Supernaturals - Motorcycle Parts

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. And if you can't, Mama Drake will send the biker gang round to persuade you, just as soon as I do up these leather trousers.

Day Nineteen

Being in a household with a Prader-Willi person means you do learn to filter stuff out.

I can wilfully, skilfully ignore a level of background blatherings that would cause a random visitor (remember them?) to remark: “How can you hear yourself think?

When my husband and I do our unspoken tag team thing - otherwise known as when I sidle out of the room just after my daughter corners him in a particularly repetitive conversation cycle - I still vaguely register the conversation, but unconsciously filter it out to a background hum.

This happened yesterday, but my filter gradually failed as my daughter’s voice grew more panicky, and my husband’s started to sound as if his teeth were being well and truly gritted. I flipped my ear switch from ‘ignore’ to ‘earwig’, as I detected potential entertainment.

Her dad seemed to be explaining to her what ‘pixellating’ meant. He sounded like he was coming to the limit of the number of times he was prepared to answer the same question. I surmised this was what the last 15 minutes of ‘background hum’ had been about, but I couldn’t work out the context.

“I’m not going to tell you again, because I’ve already explained it, A LOT,” he said firmly, his exasperation clearly audible. “If you want me to watch ‘The A Word’ with you, you need to stop asking me that and PLAY the programme!”

Cue another anxious barrage of questions from her about ‘pixellating’. I started heading towards the door, motivated by a combination of nosiness, support, and the desire to take the piss. And just as I got there, the mystery of where the question had come from was solved.

“But it says in the listings that Joe is pixellated on his teacher!” said Josie, the confusion clear in her voice, possibly because she was trying to understand why Joe’s face would need to be disguised.

“All this time you didn’t think to tell me it’s in the listings?” came my husband’s accusatory voice, followed first by a pause as he located the remote and checked the programme synopsis, and then by a very large sigh.  “No,” he said, in the voice of a soldier, tired of war, “it doesn’t say that. It says Joe is fixated on his teacher. Fixated!”

"Oh!" came her unabashed reply. "Well, I know what that is."

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is Céu - Amor Pixelado - if you watch the video, you'll see she starts off well with the social distancing, but lets herself down by the end. Where's your 'common sense', woman?

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. I know I keep banging on about it. You could say I'm pixellated on it.

Day Eighteen

The amount of forward planning that goes into these blogs ranges from negligible to non-existent.

But I did actually think about today’s subject in advance, noting that it would be particularly appropriate for International Nurses Day. Yep, the International Nurses Day that was yesterday.

I’ll blunder ahead anyway.

It’s a simple story, about one encounter with one nurse. It’s not about the palliative nurse who took such care to explain everything when my mum was dying. It’s not about the nurse that helped distract my daughter as she had to fast for a morning when doctors tested her growth hormone levels. It’s not about the nurse that put her arm around me as my girl went in for her spinal operation and I almost crumpled. It was a definite crump, but not a full crumple. 

No, it’s this one.

Seven years ago, I spent five hours in a waiting room on a busy Saturday morning, hoping  a consultant paediatrician was covering what seemed like half the wards in the hospital could hold good on his promise to squeeze my daughter into his list. It was at a time when my girl had started going through bouts of sleepless nights, culminating in hallucinations, outbursts of laughter, anger, and even swearing. For f***’s sake, no-wonder I was worried - she hates swearing. Yes I do know it’s hard to believe with her being the daughter of Potty Mouth McGrew here. The sudden, terrifying, and totally uncharacteristic behaviours had me desperately worried that she might have a brain tumour. Spoiler alert: she didn’t. It turned out to be a mood disorder, which has since been managed fantastically well with medication.

Soon after we arrived, exhausted from four nights without any real sleep, feeling pretty hallucinatory myself, I asked to speak to a nurse in a side room, away from my daughter, so she couldn’t overhear. I told her what had been happening, and everything hit me and I broke. I absolutely broke. I’m not certain if I actually fell, but if I did the nurse caught me, because I ended up being held up and hugged tight. I couldn’t speak, she didn’t offer any platitudes, she just held me and waited. It took a while.

That’s it. There’s no spectacular ending for you. She didn’t perform a life-saving operation. She didn’t discover a hitherto unknown medical disorder. She just did exactly what was needed. Then got me a cuppa.

And that’s why nurses are f***ing awesome.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Song is Etta James - Something's Got A Hold On Me

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. The PWSA UK works with medical professionals, you know, to help them know exactly what do when it's a little more specific to Prader-Willi.