World Down’s Syndrome Day #WDSD15 and Sequins in the Bed

Down’s syndrome day

Marlo Love

My tired husband and I crawl into bed and realise that fairies must have dumped their treasure chest of sequins on our sheets during the day. We laugh as we unstick them from our legs.

In a room across the hall we hear two little voices talking partly to each other and partly to themselves. The conversation filled with so many run on sentences and gibberish that it begins to sound like they are talking in tongues.IMG_20140902_204939_resized_1

No matter how tidy our house gets, the evidence that two happy little girls live here is ever present. Glitter glue drawings, finger paints stuck to the carpet, hieroglyphic Crayola on the walls—all made by two loving sisters.

 

One of them happens to have Down’s syndrome. And that really is an after-thought.

 

I am not as politically pro-life as I once thought I was. I can’t get into the mind and…

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A world of Pain

Well the decorations are down, the cards have been packed away and the chocolates have all been eaten. Christmas is well and truly over; and aside from decaying tree in the front garden, it all seems a long time ago.

It’s been a crazy start to 2015. Apart from the wrecking of the Costa Concordia in 2012 I can’t think of a year which had a more destructive start.

There was of course the atrocious acts of violence in France. 12 people dead in a single act of barbarism carried out by Islamic terrorists/fundamentalists. A bomb being detonated outside the NAACP building in Colorado by a lone white man. A Saudi blogger was sentenced to ten years in prison,1000 lashes and a $250,000 fine. And fellow blogger and friend, Adam Pain has hung up his blogging shoes…for now.

I’m glad to say it’s not all doom and gloom.
Paul Golding, Britain First ‘Leader’, has been found guilty of harassment and for wearing a political uniform in public.
David Cameron has insisted that The Green party be invited to a televised party political debate/s in the run up to this years election.
Abu Hamza has been sentenced to life in prison by a court in the USA.

So my thoughts so far for 2015:

Nothing is above mockery. If you feel the need to murder people in the name of your religion then you are seriously deranged. When acts of violence/terrorism occur only the people responsible are obliged to apologize. Freedom of speech, freedom of and from religion are rights we should ALL possess.
A green jacket and a battered army land rover do NOT give you the right to bang on peoples doors and extort money from people.
Whatever David Cameron’s reasons are for insisting the Greens be invited to television debate/s I’m just glad he has spoken out. However my spidey senses tell me they’re insidious. Good riddance to a nasty piece of shit. After living rent free courtesy of the tax paying British public for the last decade or so you’re now free to enjoy the Grey bar motel courtesy of Uncle Sam.

a-world-of-pain

Until next time… Be cool to each other

Sally Morgan would have seen this coming

As my laptop is STILL in hospital I’m rebloging Mr Adam Pain….again.
I can’t help it, the man seems to jump on all my topics and get there before me.

…………………

You are reading this on the morning of Sunday October 12th, my little sister’s birthday. A very happy birthday I hope it is too. I can say happy birthday to her. Unfortunately, as regular readers of the blog will already know, my elder sister, Katy, no longer can. This is a complete bummer, both because it is the one birthday present I’d dearly love for her to receive, and because it has put a monumental downer on this opening paragraph.

This will come as no surprise to chirpy TV psychic, Sally Morgan, who I imagine read this blog post yesterday, before I’d even thought about writing it. Maybe Katy was sat next to her in gas form as she did so, occasionally whispering little secrets to her to exploit for profit, next time she’s passing through this neck of the woods.

I take great comfort in the fact that our deceased loved ones chose to share tittle-tattle with enigmatic pensioners from working class backgrounds. It must be a relief for a family, when their beloved Nana chooses to commune through a stranger stood on a provincial theatre stage, in front of an intimate crowd of a thousand. A huge weight off, when they learn that she doesn’t blame them for the fall down the stairs – it was those bloody slippers she’d insisted on buying from Lidl.

Nana still loves you, but I’ve got to go now – Gandhi’s about to start calling the bingo numbers out, and I’m due a bit of a lucky streak.

I’m joking, of course. It’s a fucking offensive trick played by charlatans purely for money. Sally already knows this, with or without precognition. I’m going with without.

But I’m not going to spend another five hundred words putting the boot into stage psychics, as much as I’d gleefully do so. Besides, the problem would be stopping my metaphorical leg from swinging. But it would certainly provide no hope.

I was out of hope last week, as you may remember. But as the saying goes, hope springs eternal.

I don’t really believe in the idea of eternity from a personal perspective. I do believe in Eternal, and hope one day they’ll put their differences to one side and do one last tour with Louise Redknapp. Get BeBe Winans out of his box for the big finale too – that would be epic. But I do believe in providing hope, even when all hope seems lost. So, I’ve decided to let you in on an idea that brings me comfort almost every day I continue to bumble around on this space rock we call home. An idea rooted in the physical that tickles the belly of the numinous.

Here goes.

Every decision, every turn, every mistake, every triumph, every laugh, every salty tear tasted, informs us. Every one of those things is likely to have been informed in turn by somebody you love. Therefore, our lives are truly intertwined in a way only the most well resourced hermit orphan could refute. And not just humans – as anyone who has felt a profound connection with a pet will tell you. That moment you connected with a tiger, as it peered at you through bullet proof glass in the zoo, informed you too. (It annoyed him, of course. Imagine constantly seeing a tasty looking sandwich appearing in front of your eyes, trapped in a plexiglass bubble.)

Every bit of life is input data – like a tiny little satnav update. It might take a while for your system to register it properly, but if handled correctly it can make your own little map of the world more useful and precious. It will help guide you home, no matter how lost you may feel. The only downside is you must constantly remind yourself where home actually is. This is why spending time with the people and places you call home is so vital. You’re filling up your tank with homing information.

When the people we love die, I believe their map dies with them. They don’t need it anymore. But by which point, their data is shared around thousands of other people, places and animals. Their input can be seen in every tree they once climbed, every garden they sowed, every path they trod, every mouth they reared. For good or for bad, they left their gigantic fingerprints all over the chip shop, for all the world to see.

So when I miss my sister, as I so often do, or long for my mum’s kind eyes to twinkle at me when I’m feeling lost, I can always find something that will bring them home. It really isn’t hard to find. They live behind me eyes, and in my fingertips. They hang on my walls, they grow in my garden and they spring up in my children’s most colourful memories. They are bloody everywhere, those impish scamps.

All of life boils down to a simple choice – do you actively spread good data or bad data? Like all systems, bad data tends to end up getting rejected, whilst good data sticks around for as long as it is useful – so the smart money long term is on good data. But it must be conceded that bad data sometimes offers a good return in the short term.

I like to think of my mum as being someone who provided an overwhelming amount of good data to a vast number of people. Their own little maps have been made better as a result, making their own journey through life a tiny bit less bumpy. Perhaps they’ll pass that good data on. Who knows when it will stop, or if it ever will.

The bad guys spend their lives propagating bad data. They steer many good people off-road, making them lose sight of home. Scared and lost people without a sense of home are prone to driving like complete twats. Some may even start to view their off-road existence as their real home, and blame the original road for letting them down. It doesn’t occur to them that it might all just boil down to them accepting bad data in the first place. By the time the bad guys have pulled them off the map and washed, wiped and waxed their memories clean, they won’t remember where home ever really was. This is how you end up clutching a machine gun in a desert, convinced a massacre can lead to martyrdom.

Every cult, terrorist cell and shady member’s club trades on bad data – it keeps the funds coming in. It’s why so many ‘modern’ churches have such expensive AV equipment, why modern terrorists aren’t armed with blunt sticks and why you’ll still occasionally receive a funny handshake and a shifty bit of eye contact at swanky cocktail parties. The profits of bad data are as gaudy as they are superficially impressive.

The problem is that bad data is so easily jumbled up with good data. It’s a minefield we all wander through constantly. A quick flick through any newspaper with a critical eye will show this to be true. Even ‘The Sun’ has some good data – it’s just buried, out of context, amidst a cloud of pernicious bad data designed to knock you off course.

The aim is to get good at spotting bad data and prioritising the good bits. This is much harder than it may appear, so you must be comfortable knowing that you will often confuse the two – and stop beating yourself up if you do. We all make mistakes. Sometimes, more than once. I saw both Joel Schumacher ‘Batman’ movies, for instance.

The home button will hopefully get you back on the right path. That’s the hope, anyway. Sure, there will be bright lights and distractions along the way, and some of them will be worth the detour. Others really won’t.

The next time you see a poster for a stage psychic, be it Sally Morgan, Derek Acorah, or any other fraud in a Peacock’s jacket, let a little alarm go off in your mind. A blinking, red light, furiously burning into your consciousness. Warning, warning – bad data.

Then go home.

 

For more information on why I take such exception to stage psychics, click here to read The Independent article that inspired the post –  or watch Derren Brown’s brilliant ‘Infamous’, available on 4OD.

Laptop ER

As my laptop is in the hospital I’ve decided to reblog a post from fellow musical blogger, Adam Pain.
You can find him at

http://www.aworldofpain.co.uk

When I was a child, I was full of hope. Soda-Stream American ginger ale, crisps and hope. I foresaw a world where starvation, disease, nuclear weapons, global wars, religious bigotry, bad boy-bands and movie tie-in videogames were a thing of the past.

I dreamt of enormous screens that would fill our vision like the night sky, where the best bands and artists from around the world would play music so full of passion, truth and tasteful virtuosity, the world would unite in communion. In D Major.

I dreamt of the day where we partied on the streets, as AIDS was pronounced officially eliminated. Where every child on Earth was given a fighting chance of a long life at birth through immunisation, sophisticated irrigation, space age food production and International goodwill. The world felt like it was getting small enough for it to be the garden we could all call home.

I dreamt of a time when a new spiritual awareness would sweep over the world like an electric blanket, hugging us into peaceful submission. Where we could stare awe struck into the galaxy and know that we are tiny, fragile and insignificant, whilst simultaneously being part of something huge, powerful and uniquely privileged. Where the tribal differences of the desert were finally laid to rest, in the hope we could look to the universe for the next step forward. To boldly go wherever Sir Patrick Stewart went in a maroon body-stocking.

I foresaw a world where the threat of global nuclear conflict seemed like a hangover from the past, buried deep with the rest of the cold war rubble that Rocky IV had saved us from. Apollo Creed had not died in vain.

I believed Robocop 2 & 3 would only ever make the franchise better.

I believed that the soulless saccharine of ‘New Kids on the Block’ would die.

I believed I could fly and that R. Kelly was one hell of guy.

And what did we get?

We’ve got a nation obsessed with peering into tiny little oblongs of space age super glass, watching home videos of family pets falling off coffee tables.

We’ve got a super-bug sweeping through Africa, eating everything in its wake, adding a horrific new edge to the already apocalyptic cocktail of AIDS, malaria and hepatitis C.

We’ve got tens of thousands of disenfranchised, angry jihadists in a depressingly familiar desert, about to be bombed into a thousand tiny ideological hate groups by an even angrier set of fighter jets with superior weapons and a never ending budget.

Yet we’ve got foodbanks in the UK, desperate for donations. We’ve got £1.3 trillion of national debt. We’ve got a system that penalises people for having a spare bedroom. We’ve got children in Primary Schools being reported as suffering from acute malnutrition.

We’ve got a boyband with 8 members on the telly-box, like the Manchester United of three part harmony. We’ve got Tulisa doing her very best Jodie Marsh going to a Michael Jackson themed fancy dress party, being taken seriously as a voice of cultural taste and decency. We’ve still got Louis Walsh, doing whatever it is Louis Walsh does.

We got the big screens. We brought back SodaStreams. Robocop got rebooted.

Be careful what you wish for

Thank god!

A friend of mine was sadly diagnosed with cancer just over a year ago. He’s in his mid 20’s, is married and he and his wife have a son. I have only met him once when he and his band toured the UK, from America, a few years ago and I played on the same night as them. We shared a few drinks after the show and chatted about cultural differences, namely that it’s socially acceptable to start drinking in the early afternoon in the UK. I kept in touch with the band via Facebook and kept up with their goings on.

It’s always a shock to hear that someone so young is hit with cancer. But after a year of treatments and therapies he has been given the all clear which is absolutely wonderful news. Not only has the disease been kicked squarely in the bollocks but he and his wife and son will enjoy many more happy years together. Which is the most important thing.

But there was something that rubbed me the wrong way, it’s only a minor niggle but it’s a niggle none the less. I’ve written the next sentence a dozen times and there is no way of writing it without me sounding like a sanctimonious arse hole, so here it is.

After the news that he was given the all clear his Facebook wall lit up with comments of well wishing and congratulations. The vast majority praising God for his ultimate wisdom, compassion and grace. “God is good” seemed to be the favourite. This is where the niggle comes in, and there is more that one I’m afraid to say.

From my understanding of the world I would have to say that our medical advancements over the last 100 years are our greatest achievements. Our adventures into space are truly amazing and our expeditions to bottom of the sea are staggering, but they were borne from curiosity rather than necessity. We have eradicated small pox, cornered polio and walked cancer to the edge of the plank. All this was achieved from countless medical professionals working diligently into the long good night. Before them human beings succumbed to diseases and viruses, rotting teeth and gangrene. Even a splinter or the common cold could turn deadly.

So it does upset me when an unproven, unverifiable celestial deity gets all the credit for one man’s victorious cancer battle. Not one mention to the hard working, diligent team of doctors, nurses and therapists. Because let’s face it, without them it could have been a very different outcome. But I must reiterate that the most important thing is one man is cancer free.

Every few months we hear stories of parents denying their children of medical care, opting instead for prayer and trusting the life of their child in the hands of the lord. More often that not, tragically the child dies, the parents are put on trial and subsequently go to jail. So my point is this. Maybe, just maybe, your prayers were answered. The lord provided you with a cure, a helping hand and a miraculous recovery. But instead of white light coming from the heavens or bearded man walking on water and doing tricks with wine you got a mid 30’s woman with a PhD from the university of wherever, armed with a vast knowledge of ‘whatever it is you are suffering from’. I admit that these kind of prophecies don’t look as good as your Jesus fellow, but maybe these people are the answers to your prayers and they deserve the recognition, they deserve the praise and they deserve all the thanks.

I said there was more than one niggle and here it is…if God cured you of your ailments then surely it stands to reason that God gave you those ailments in the first place. Why? To make you a stronger person? To make you thankful for the life you have? What about the people who spend their day getting high on PCP and thieving from good, honest, hard working people, why aren’t they struck down with cancer? What about the numerous people who molest, torture and rape children in every country on the planet and yet somehow manage to evade the wrath of god? What about the people who strive to be good and value life and yet still fall prey to Cancer? There are two answers.

1. God can intervene, but he decides not to. Which makes him some kind of misanthropist 

2. God doesn’t have the power to intervene, which doesn’t make him omnipotent and therefore no more special than the turd that I just flushed down the toilet.

The power of prayer has also undergone scientific scrutiny with groups of hospital patients. Not surprisingly the tests conclude that people who were prayed for didn’t recover any quicker than the people that were not prayed for. To me it is painfully obvious why.

The truth is, is that there is no God. Never was, not one….ever. But I must reiterate that the most important fact is that a man is cancer free, a woman has her husband in good health and a son has a strong father.