Monday, 25 January 2021

Because, WE.

There is a threshold at which every human being is tipped over the edge. The edge of patience. Of reason. Of tolerance. Of sanity.

It is safe to say I don't believe I know anyone who isn't currently teetering in some way. Sure people may be pressing back their shoulders, loudly announcing to the world that it's all in hand, I'm good, I got this, I'm still here, I'm still going, but naw, it's cutting deep and we are all wounded. I can see you bleed.

I can't tell you it will all be ok, but -

I embrace you from a (safe, social) distance.

I pass you a sanitised box of tissues to wipe away that dismay careening down your face. It'll stain if you don't wipe it off.

Trust me.

Where are we? Good lord, where on earth.

We are living through what has been a monumental catastrophe for so many but that which is utterly disregarded by their opposites.

This taker of loved ones, this culler of humanity, morbidly viewed as little more than an unnecessary inconvenience, a cancelled holiday, a missed opportunity to go out clubbing, drowning in why can't I watch my football team live? It's. So. Unfair. Why?

Because, WE.

WE.

That we are all in this together is not in doubt. The question is, who is going to smother those at the bottom in their efforts to climb out first? Who will launch themselves ahead, smearing mud across forgotten faces? Who will forget to drop a rope? Who will cry exhaustion when it is their turn to pull?

Because, WE.

I am bemused, to be fair, having had the luxury of years of experience within the Great Big Pity Party, blessed with my son, who is so much the same as his peers, yet always, always, quite markedly different. As a mother, you certainly don't want your life to be so different. But mine is. Hand on heart, some days that absolutely destroys me. Then I pull my head out of my ass and remember I chose to be a mother and my son is the best person I know. I remember that most days I'd take ten of him.

Still, some days I just CAN'T.

How many days spent feeling sorry for myself that my world is not like that of other people, that I have to spend so much time teaching my only child those skills other children just fall into, that I have to decipher, translate, interpret, all manner of body language, attitude, emotional adjustment, as a means of communicating in the absence of the spoken word?

But that is my job. I am his mother. He deserves every minute of my time. 

How many years have I avoided writing some of the feelings for fear of the 'I told you so' posse? 

Here's the rub: I don't give a shit anymore. You can't bring everyone on side. If any time in history has proven that, it is this time.

I pound the pavement and chew up the trails, questioning it all.

I smile, like the great Eliud in grief and pain. 

I grin. I bear it.

I cannot claim it is always easy. 

I CAN claim I love my son with a fervor you would never understand if you hadn't had a love like it. And nobody 'told me so' about that.

Still...

How very normal is this lack of normal? Ridiculously.

We haven't got out as much as other families, not ever. Because, just like celebrity, there is sometimes too much attention and you never know if it will be uplifting or a(nother) stake in the heart. I find myself endlessly more fragile than my toughened exterior may hint at, splintering so easily when someone shocks me out of my idealist positive approach with the reality check that most people think my life is probably less than. Just like they think that of my son. I'm not a fool, I know this.

You reading this, you too may think this. You're allowed. It's ok. Some days I may agree with you. Other days I'd slam the door in your face and curse at you til you were out of sight. 

All about balance, in all things.

A blessing of this pandemic? Odd, but yes, there have been a few. The big one is the lack of encounters has all but eliminated the bad kind of attention. The only people in our lives the past year have been those who love us.

Isn't that bloody marvellous?

Still for us, this new normal is not new at all. This new normal only brings with it the crisis of contagion. 

We are a DS family. We are a SEN family. 

My son is disabled. I couldn't say that for years because I thought it was a dirty word, something to fear. 

I'm not afraid of my son, nor should anyone be. Disability is not disaster. 

What IS a disaster, is that this new normal - in the middle of a pandemic - feels so utterly, totally normal to us. It feels normal to us when everyone else on God's green earth is losing their shit because their world is so far off piste and it feels like it will never right itself. 

My son has been othered for all time. We are isolated, we are separated, this is nothing new. Our world is myopic. Here, pop these lenses on. Welcome to the disability disco.

Isolation so ordinary but what IS new, if not this 'normal'?

What IS new, is the pace in which my ridiculous overabundance of patience is waning.

What IS new, is the fact that everyone, everywhere suddenly understands what our normal looks like. My God, I wish it would stick! I wish they would all FEEL it! Process it! 

Remember it, when you are back in the club, the stadium, the playground with slides that only have steps made of rope. 

And we are here wondering if we will be accosted by disdain on our next trip to Tescos.

Isolation is a reality for families like ours, for kids like mine.

I genuinely can't tell if I feel sorry for everyone on the entire planet who is suddenly feeling so isolated, or if it is actually quite liberating. It may be met with great curiosity as to how I can stay so perennially positive and optimistic during this hideous and difficult time. 

And here, I'll tell you - it's because I learned just about nine years ago that there is no other way you can survive when the world will forever push you aside. Chin up, eyes on the prize. Keep moving. Relentless forward progress.

Today,

In your dismay and your horror,

In your darkened outlook and your fear,

In your desperate hope that one day soon this isolation will end,

I wish that your every dream comes true.

I know others - just like me - will too.

Because, WE.



Wednesday, 25 November 2020

For today, I burn.

I'm laying alongside my son watching him sleep. That need for a bedtime cuddle hasn't waned eight years on. That's ok. In his own time, in all things.

Today it only took some five minutes until his breathing slowed to that comfortable long term rhythm, that one I can trust to allow me to spend time as me. Doing me things. Not looking after someone else. That is a gift I have to steal, to survive the guilt of not mothering someone, and doing something outside what I need, let alone want, to be doing.

Steady rise and fall of his chest and my thoughts along with it, rising and falling. The joy and the pride in having a child who is hands down the most wonderful human being I have ever known. That subsequent fall to know that mine is a life I will now forever spend fighting for him, fending off those who would belittle, discard, ignore, pity.

Fools rush in.

I wept again today thinking of how tragic it is that this beautiful, kind, gentle soul will be forever treated like shit by society. He does nothing but love. So few people give back what he deserves. I know what he brings out of people. I've seen it. 

I've seen it a lot.

It's quite something to see a face light up when they catch his attention and his heart, the light of his soul shining all around him, like a visible aura, that if you were fortunate enough to dip your toe inside it would seep straight on in to you, to light up your days until your dying breath.

If we all could be so lucky. The lucky few, indeed.

I live with this child. I made this child. The pride! You have no idea.

But lately tears coming fast and furious at the ease in which society would turn him off into the wilderness of 'things we don't care about' - God forbid when he is old - and if he had poor health atop that third number 21, (which thank God he doesn't for now) that 3/21 - blasted thing which has 'othered' this remarkable person since he was conceived.

What a true tragedy that people cannot see past physical features. What a true tragedy that people cannot wait and see what a human being is like, who he becomes, before judging him? And who are we to judge anyone, anything but ourselves? We've no right.

The outright arrogance.

I wouldn't have judged anyone before this boy came into my life, but now, yes. Yes I judge. I judge because to some folks that 3/21 combination is so hideous and so aggrieving they'd shrink back in horror and grimace and do anything in their power to avoid welcoming someone like my son into their life. I know they're out there. I know, because I've seen them flinch just looking at him.

Imagine that. Imagine your heartbreak. Your rage. 

"How very DARE you?" You say this. This mantra. Some days it's all you can do to not start swinging.

How?

You want to tell those people who shrink back to open their hearts to something different - to a journey that they didn't expect, something that would be difficult, yes, but slower. Somehow cleansing. They don't even see you, let alone hear.

All this, yet my son has only barely begun to scrub the ableism from my thinking. As I live and breathe it's nearly 9 years of him on this earth and still I don't get it. Still have discomfort around people with that same 3/21 (how funny that is a countdown now I'm thinking of it) counting us down to what? Humanity? Truth? Acceptance?

Fuck this. Really. Fuck it all.

His chest up and down, and I'm watching him, adoring him. The way he looks just like that last scan when I saw his nose and cheeks on some grainy printout and thought 'whatever the heft of the sword I must wield, I will swing it wide and true with you in my thoughts'. The battle since conception rages. And rages. And I rage along with it. It's not letting up, this anger.

At least I have a tribe now. There's that.

That stupid television programme and it's insolent, obstinate, obtuse production team believing - either for the party line or in an effort to make themselves feel better about being so outright heinous - copy/pasting their responses to everyone, claiming that it is their 'duty' (of all things!) to show a story line that reflects 'one of life's truths'. That truth that most people whose fetus has an antenatal diagnosis of Down syndrome will terminate the pregnancy. Because of a ghost.

But not really.

They terminate because they want a baby. But not one like THAT.

Fact.

Truth hurts, but it's 2020 and that, friends and neighbours, is where we are.

Truth hurts, but here's another truth - they have no duty but to the almighty pound. 

And another - they are so disgusting and inconsiderate to the awfulness of what they are doing, they stretch a storyline that throws our kind, gentle, beautiful children into the abyss...

...over Christmas.

For ad revenue.

That is most certainly NOT what Jesus would do.

Back to those swell folk who don't want a kid like mine. I know this because I felt like that before we conceived my son. Before I knew any better. Before I had actually ever spent a single meaningful moment in the company of a human being with Down's syndrome.

That feeling lessened when I knew he was coming, yet still I was in denial. I didn't believe he'd have Ds, I didn't want him to have Ds, no way, not us, not him, no no no.

But he did. He does. He always will. 1:119. It could be something, it could be nothing. Upslanting palpebral fissures. Sandal toe gap. Echogenic focus. I'm sorry but...

How can words be so ugly when a person is so beautiful?

And I ask myself today, what the everloving HELL was I so afraid of?

To paraphrase something I read in a piece published in The Atlantic recently, when health care professionals build entire careers on the back of their intellect, it is little wonder they feel a certain way about human beings born with an inherent lesser intellectual ability.

That is near on everything and has shaken my entire approach to advocacy.

Few will come round. Not those who believe that looks are everything. Or earning potential is everything. But especially those who feel that intellect is everything.

But here's the rub - it's plainly not. 

There are countless others who build careers on the back of how they care for people. They are the lowest paid members of society. They are the carers, the religious leaders. They volunteer to work in war zones for the UN. They clean up after raging hurricanes decimate third world countries, tidying things up with paper towels instead of launching them into faceless crowds like footballs for a cheap laugh.

These are my son's people. They are considerably on the fringes in the mind of society but they are actually the skin holding the body of society together, so that the blood and the veins and the guts don't pour out into the sea and drain into the earth's magma never to be seen or heard from again.

Those are my son's people.

This argument against allowing people like my son to even exist, it's fucking old, let me tell you. He's going on nine and it may as well be 89. I'm so tired.

Watching my son sleeping, I was also thinking about how if I had any other child in any other level of this ridiculous plane of existence, I would say 'jeez, I'm exhausted, what a hard day I had today'. And the other mum I'd be speaking to would probably do a bit of subversion, some one-upmanship to illustrate that she in fact was the more knackered of the pair of us. 

But here, in the magical world of 3/21, I dare not say such things. 

I dare not say such things because there is tutting. There is a hidden whisper behind the back of a hand saying 'well why did you HAVE him then? What did you expect? Surely they TOLD you what a mess your life would become...'

But it's not a mess because of my son. He is the only part of this life that is absolutely tidy. 

There is overwhelming societal disdain, whereby instead of deciphering my exhaustion into 'you're a mum - you are meant to be shattered' there is 'I told you so'. Because my kid is DISABLED - there will forever be an unwritten, unspoken, didactic stating that his life has no value. That his mere existence is somehow destroying my own.

That is patently untrue.

What the truth is, is that I am a mum. I am meant to be shattered.

What the truth also is, is that I am shattered because this sword is too fucking heavy and I'm tired of swinging it. But I'll swing it.

I'll bloody swing it, alright.

____

It is important to note, somehow now more than ever before, that this argument for or against certain degrees of choice, timelines in which one could end a pregnancy, or whether they should in fact be allowed to end a pregnancy at all, etc., would force a human being firmly into the category of 'pro-life'. Most people discard the feelings of and challenges to the status quo from mothers like me because they immediately assume that because I 'actually!gave!birth!to!a!disabled!child!' I am rabidly pro-life and as such, anti-choice.

They could not be more wrong. I am anti-discrimination. End of.

But it needs to be said (and I expect this will change some opinions of me, and so be it, as I'm beyond worrying about much outside matters of my immediate family in this hideous day and age) I too made a choice thirty years ago, not because I'd have had a disabled child but because I was a selfish young girl who didn't want my life to be disrupted by any child at all. I ended a pregnancy at 19. A few friends know all about it. You know who you are.

I have owned my choice for more of my life than there had been prior to taking it. It was hideous, and tragic, and sad, and a desperate emotional loss. 

But not ever would I suggest I lost that child. I dare not ever be so ridiculously selfish to disrespect those women who have endured actual, true loss by appropriating the language of loss, having consciously chosen to take that path. 

I made a choice. That's entirely on me. I have owned my own choice for thirty years.

This is why I get so angry that these selfish fools are running around waving their hashtags through the air about breaking the silence. You want to break some silence, let's dance. Let's get fucking LOUD, sis. You've no idea what silence looks like until your kid gets shunted into a corner by the society who doesn't want him in it merely because he has a condition they want to eliminate.

(They want a baby but not one like THAT.)

And he won't be silenced. None of us will.

So break this.

This is why I've been raging. And weeping. And seething. And running, and running, and running.

Remember that, next time you see some stupid ignorant woman crying and wringing her hands that she 'lost a baby to Down's syndrome' when the reality is that she's just made a choice to end a pregnancy because she wanted a baby...

(But not one like THAT.)

It didn't take me 38 weeks to make my choice. Nor should it take any other human being 38 weeks to make theirs. As my mother says, with regard to taking a decision and not dawdling around on the fence - 'shit or get off the pot'.

It disgusts me that women will choose based upon disability but as I've said elsewhere if you really don't want a disabled kid I don't want you to have a disabled kid. That kid would have an absolutely terrible life with you as his/her mum.

Yes there's adoption, but that's not the sword I'm holding. There is another warrior who would die on that battlefield but it ain't me.

Down the choice timeline, equality is everything and if you are pro-choice but aren't in support of levelling the timeline across the board to 24 weeks, or up to 'unassisted viability outside the womb', then we are on different channels and you should take the last train to Clarksville. 

If you're pro-life and reading this, I respect your choice to feel that way. That too, is choice.

If you think disabled lives matter less, please just go now.

To choose or not to choose, that is the question. The answer, in my life has been yes, and no.

My son is my world. My choice is my history. 

My words are my voice and my voice is my soul. My soul is presently on fire. 

I'm not sure when it'll go out so for today, I burn.


Sunday, 20 September 2020

Through it all, we keep moving.

Some crazy year, this 2020.

I'm sat here looking at a blank white screen, admiring the silence of it, the truth of it, the possibility of it. It's one of the few things I can control in a world that's completely slid off its axis. You'd have to be a cartoon character, a fictional superhero, above and beyond all that is natural to not be desperately affected by this year. But the question that matters - the only thing that matters - is what are you doing about it?

Is there a point in looking back? In wrapping your brain around the things that have steered us into this day? Always. More often than not it hurts, but this hurt I am looking at is so positive in terms of what I have gained from it. A year starting with tenuous employment in a temporary role, finding renewed belief in myself and my truth. Speaking it to find support navigating my way into a next role that's completely reminded me I am genuine. My truth is not everyone's truth. I dance to my own drum. All I had to do was find the rest of the band. And that has added sparkle.

That awful lockdown, that gut-wrenching fear, that all consuming need for self preservation came in the midst of it all. We circled the collective wagons as a family, a community, a nation, a global population. In these (dare I use the overused) unprecedented times, there we set our own precedent. The one that looked back to Maslow's hierarchy and calmly stated 'you know what you need to do. Go do it.' And so we were home. For a long long long time.

Funny for our family home has never been a prison, more of a place of refuge. To close that door to the outside world and get our game in order. Much of it completely screaming down an imaginary slope, eventually launching us into the atmosphere of panic, and worry, and anger, and fury and all those negative adjectives we try not to use if we mean to keep a positive outlook. I am only positive we kept an outlook because there is no other way to respond to change than to look ahead of it and go after the place in which you want to arrive when you manage to break out of the storm.

The storm raged. No education for our son at home because mum doesn't do school, mum plays and throws him in the air and plays ball and had no extensive input from school to deliver. That's been discussed and addressed and we are moving ahead now. That storm is a drizzle and we have the wellies on and brollies up and the team I thought was there really is. In the absence of the 70+ hour a week work rollercoaster to distract me from my number one, I am on it. And on it and on it. To that exit door we move and we'll get into the sun once again.

All the while, the ship of fools running this crazy world around us, failing to protect us all, failing to instruct us all, failing to support us all. The problem with politicians is they are people. They are human. And human beings are not faultless and are not flawless. People screw up. The trouble is we have to elect some of them. Choose badly and the shit is going to hit that fan and we'll be scraping it off for generations. I need not elaborate on the current state of affairs then. Go get in the shower. With a chisel. It's going to be a long time before you'll be clean again.

Me, I'd rather be caked in actual mud. Fortunately the global catastrophe delivered one particularly amazing gift in the sense that I had to do everything I could possibly do to avoid coming into contact with other people. But how do I run when there are so many people around? Because for me, if I don't run, I die a little inside every day. This is where I'm at with the sport. I run for freedom. I run for head space. I run for self actualisation. I run for pride in accomplishing something. I run to be able to have one small thing in life in which I can control every variable. Even when injury or pain comes in, I can decide what to do about it. I can take the action or I can sit still. I know which I'd choose until I'm six feet in the ground (or dust in a jar, or bony sand in the bottom of the sea). I certainly don't run for exercise. I don't run to lose weight. I don't run to look good. That said, these are all quite pleasant side effects. I certainly don't run to race other people. Life provides enough competition that I don't really need to add any more thankyouverymuch.

I looked on a map of some of my local running routes early on in the lockdown to see where I could go that was less people-y and soon found myself in another world, void of contact. Little-used bridleways, quiet back roads, snaking across hilly farmlands. Safe. Socially distant. It occurred to me over lockdown that I genuinely prefer social distancing. I'm not by nature a social person and deep down don't particularly care for the company of people. And that's ok. Me, I want to hang out with the wind screaming in my ears, reddening up my face, blowing my hair out of the elastic band. Me and the sky have a fantastic relationship, even when she is crying. Water that ground beneath me to mud, sis. Splatter it up the back of my legs, trip me up and pull me down into the long grasses, that is the only way I truly feel alive. While society was dying, I was living. I found a way to live after all. 

On the cusp of a second national lockdown of sorts, I am not afraid of what that means because I am generally on lockdown anyway. It's a bit of a meh. I consider myself extremely fortunate to have that outlook. I also consider myself fortunate that my son is content with me out running, but also that he takes great interest in me out running. Who are you inspiring? This is everything. We will run together some day. I cannot bloody wait.

During the time frame between 1 May and 31 August I took the opportunity to sustain my sanity and realise some form of achievement by attempting to move myself forward 1000 miles as part of Lazarus Lake's Great Virtual Race Across Tennessee. It's a ludicrous distance for someone who normally runs and walks an average of 100 miles a month unless I'm training for something huge to up that monthly distance by 150%. But there wasn't much else going on, and there were those magic, new, tucked away, people-free routes. I pushed myself hard. I achieved something absolutely epic. In this year when life has been shaken to its core, and normality has been cancelled, I went out and kicked its ass. It's all I could do when time had come to a halt. It's all I could do to attempt to get the world turning again, to move along it's centre line (quite actually - some of my regular route was along the Greenwich Meridian Trail) and hope the momentum under me would help give it a push. When we feel most helpless it's only natural to find something to give. Even if it's just to ourselves. The pride I feel in this achievement is nothing compared to the gift that achievement has given me where it counts. I am so much stronger in the mind. In the heart. 

Despite the fact that 2021 will usher in 50, this is not a mid-life crisis. What it really is, is self-actualisation. There's old Maslow again. Bit out of order, but...2020.

2020.

There is not the slightest indication as to what will happen next this year. Frankly I don't want to know. Like Tom Hanks in Castaway said we have to just keep breathing. Like Nemo has to just keep swimming. We too need to just keep moving. Forward. Relentlessly. 

I've got a real, socially-distanced marathon coming up next month. I do hope it stays on because it takes me over one of my loves, the Seven Sisters on the south coast. Those blissful challenges before me, spending hours virtually alone with my thoughts, climbing up and careening down. Looking to one side to take in the rise and fall of the glorious countryside. Green entwined with full autumn brilliance. Maybe shining with sun, or belting with rain. To the other side, the sea kisses that mysterious line across the sky which whispers, taunts: 'you'll have to come this far if you mean to see what's further.' My friend the wind, pushing me back, pulling me forward, delivering its roar to my ears and its red to my face. 

Through it all, we keep moving. However we do it. Whatever it takes.

No fear. Keep moving.






Tuesday, 2 July 2019

Trailblazing.

It's one thing to take a look at a personal situation and say 'No, I'm not going to accept that...'

It's quite another to finish the thought with '...and neither should anyone else.'

I ran a Google search this morning in search of a definition for the term 'trailblazer': a person who makes a new track through wild country.

Appropriately, when the trail you wish you blaze is a literal trail, you sign up for a 100 k race and train until you're ready to blaze. Me, I'm going to burn up some terrain in just under two weeks' time. Yes, of course I'm doing it for me, but it occurred to me the other day that I also want to do it for my Rukai. And to do that, I need to pass on some really important information.

(If you're still with me, thanks.)

Trailblazing. New tracks. Wild country.

How wild is the trail that navigates through the lost world of medical misinformation about possibility when it comes to disability? What if the trail about which I'm writing is one bordered in thorny opinion, cobbled with unforeseen pitfalls? What if it's always been unmarked and unnoticed?

What if one important day, someone said 'I'm not going to accept that' and began to map out that journey?

The result: Positive About Down Syndrome (PADS) - an online community written by families for families which has set out to draw back the curtain and expose the true wizard of Down syndrome - by sharing stories from that strange and amazing place called 'Lived Experience' which has eluded most professionals for decades merely by omission from the literature.

Leaflets full of facts and figures and symptoms and medical prognoses were thrust in my hands when Rukai was born. The folk wearing stethoscopes may have thought I was well equipped for the journey. But theory does not laugh. Statistics don't dance. Paper doesn't hug. Truth matters. The whole truth and nothing but...

I've no idea if I've written of this before but it matters here: I shudder to think what may have happened in our lives had I known before Rukai was born that he would have been born with Down syndrome, largely due to the total imbalance of the information available to me at the time. I live with that knowledge every day and it's wrapped a piece of my heart in those thorns. But I know that in retrospect, had I been given full and balanced information back in the day, if society weren't so pathetically misguided about the realities of life for someone with Ds, my personal picture would look dramatically different. That fear, nothing more than a blip on the radar. But it scarred. I simply don't want that to happen to anyone anymore.

I've written for years about my Rukai's possibility and have always tried so hard to not let the negativity in the ether bring us down. Nicola Enoch and that group of amazing PADS advocates have taken this to another level. Down that new track, through that wild country. Blazing, blazing.

What I wanted when Rukai was born is what I imagine what everyone would want at such a worrying time - someone to tell me it's not a disaster. Life is different, but life is fun. Life can be challenging but everyone's life is challenging. Life is life, and we are most certainly ALIVE.

I feel most alive when I'm blazing those forested and mountain trails.

PADS is blazing that other trail, giving life and hope and positivity to people just like us. People who should not be coerced into fearing the unknown.

But the website is only the tip of the iceberg and there is yet to be much more amazing work to come, so here's my ask:

Take a look at the website and read other lived experience from families who are also feeling Positive About Down Syndrome.

Check in with me on the weekend of July 13-14 when I'm running the Action Challenge Peak District 100k, when I'll be live streaming updates from the run when I have a signal, and sharing a few bits and bobs about exactly what else Nicola and everyone at PADS are achieving as they blaze this trail.

Consider making a small donation to their crowdfunding page (https://tinyurl.com/y4er87ja) so they can fund more projects like getting the language about Ds changed on websites like Bounty and the NCT, getting leaflets into hospitals so families like ours can go forth and blaze their own trails.

If you can't afford to donate, please share the website (http://www.positiveaboutdownsyndrome.co.uk/) or this post in full. Awareness is everything.

Burn baby burn.



Wednesday, 12 June 2019

Faster now.

How do I write when I can't think? The stuff I want to say is like that pile of crap underneath my bed as a kid, shunted there by a flurry of hands when Mom told me to clean up, retrieved later by a hockey stick when I was found out. I hadn't the patience and the ordered thought to clear it at the onset, how the hell could I do it now?

That elephant has taken too many bites to eat. I am full. I have indigestion. I fucking hate elephant.

I have used an analogy to describe what it has felt like of late to be at work, there in the midst of this life which surrounds that work, and that is where I will start and perhaps pause again. Because in all desperation, you have to start somewhere. Every journey starts with a single step, every story with a word. Every finish with exhaustion. If you are not exhausted you have not done enough.

But my good God I'm tired of this story. There I said it.

Imagine you are an expert skier, positioned atop the highest, most technical mountain going. Perfect clear weather, great snow conditions, you strap on your left ski and smirk at the prospects of attacking the latest challenge set before you. Crouched down, you position your foot into the right ski and just as you begin to secure it, a boot at your back sends you hurtling down the mountain.

You are flailing and slightly panicked, but the snow is in front, the boot is behind and you are only trying to not crash and burn. Your goal is to survive.

That is all.

Still, you are an expert skier. You know how to attack this hill. Even when the hill is attacking you. Crouch. Steer. Focus.

Conditions have become less than ideal and you are careening and flailing and panicking but lo and behold, you keep skiing.

You keep skiing. You keep skiing so long you start to hate skiing.

Somewhere in the middle of the hill, you hit a dodgy edge and fly head over heels, skis launched into oblivion despite how secure or insecure they really are, and you crash into that orange plastic net fence so hard it leaves a bruise with a fair bit of depth. As you creak to vertical, observers applaud that you are, in fact, not dead, which doesn't matter a bit when you drop your head so far below your shoulders you obliterate those delicate muscles in the neck that allow you to hold it high.

It will be days before you can. Months? Years?

Not soon.

You skulk down, down, down. To the base of the hill. Dragging the skis and your courage behind you.

And then you look up. Beyond the fence, up.

Past the crashing place, up.

Beyond the clouds, up.

Because the beginning of the bad run is not visible to the eye, it is fogged in and buried in mist and roiling and blowing and you won't see the same again until the next time you fall.

Because you will fall.

But.

You massage your bruise. Your bruised ego. Your bruised psyche. As purple fades, resilience falters.

But.

Relentlessness does not die. Faith is genetic, impenetrable.

The echo in your head is part crowd, part disappointment, part mind egging you on to try again.

Mind wins. You go back up.

Faster now.

The mountain is high. You go back up.
Faster now.
The conditions are variable. You go back up.
Faster now.
The ski is never secured properly.

Still, you go back up.

Faster now.

You go. Because that is what you do.


Wednesday, 3 April 2019

The child for whom I was so afraid.

If you are the new parent of a child with Down's syndrome and are worried about how he or she will be accepted in this life, I want to tell you a little story... My son Rukai is now 7 and in year 2 of a mainstream primary school. He's non-verbal and has his challenges but is mighty capable with Makaton. So is his TA. The school is generous with inclusivity and encourages all the children to learn at least a few signs. They sign every year in the Nativity. They celebrate World Down Syndrome Day. We are lucky we found them and ever so grateful for the advocates and activists who've paved the way for society to get this far. Every little helps and you have all been warriors of a different class to fight your way through the mire. Each Wednesday morning is reading morning at the school. Fortunately I work from home so rarely miss it. Rukai lost interest in books once his mobility improved enough to allow him to dance and has only recently has decided that he loves Dr. Seuss' Green Eggs and Ham, so that's become a nightly treat to my great delight. It's more theatrics than reading but we are working very hard on pronunciation and have a whale of a time together. Progress is slow but progress is progress.
A few weeks ago Rukai's TA was telling me how the children have been enjoying sitting with him to read a story called The Old Tree Stump. It's a Biff, Chip and Kipper book (common here in the UK, if you're unfamiliar), and full of many sign-able words, so a real winner of a story. Sure enough about a month ago one of the little girls who reads with him during the school day brought out the book and told me again how much he likes it. Next thing I knew there were about 4 others who took a seat and joined us. Laughing away, signing with glee, loving the story and time with my son. That child for whom I was so afraid, just like you may be feeling right now. Today the crowd around Rukai - totally engaged and gleefully signing its way through that book - had to have grown to at least 10. It was standing room only around the desk. There were even a few boys this morning. It was something I thought I'd never see those seven years ago. Sure, life has since hinted that this is the true way forward, but a cold hospital room on a blustery February morning, staring down an unknown journey are most certainly the bogeyman. And we know the bogeyman is not real. But what is? Hope is real. Progress is real. Friendship is real. Curiosity is real. Children are malleable and the future is real. Don't be afraid of the world, help the world lose its fear. Go be amazing. Your child will be amazing, this is all I know for sure. There is no crystal ball, there is just you and them and one single day at a time. As I looked up at all those kids this morning I laughed and smiled 'this is a reading party today!' and the response I got back from one of the children rang so loudly and beautifully in my ears: 'Rukai has a lot of friends!' Yes. Yes he does. Life.

Tuesday, 26 March 2019

The height of the mountain we climb.

Long day’s work done, I step into the tube station.

Tall guy with a crutch and an uneven gait passes through the disabled ticket machine. I notice because I always notice now, then keep going to board the train.

Up ahead a woman in a white top is stood up next to her seat, swaying slightly, muttering to herself. She’s grasped the bottom hem of her top with the tips of her fingers. I walk by with a glance and move forward.

I always notice now.

Guy with the crutch boards shortly thereafter. He’s tall, wearing glasses, I can see that one of his eyes is focusing entirely to the side. None of this is terrifically important or memorable until he stops immediately in front of me and starts shouting back down the carriage. I can’t hear what he’s saying over my headphones, so press mute.

“…you can’t expose yourself here! There are children here! What the hell…”

I look back in the direction from which I came and the woman who’d been muttering has pulled off her top and is now stood in her bra and skirt. She slowly tugs another top on and resumes the zoned out swaying. I don’t think she’s all present but this is London, this is not all that uncommon. I don’t pay much notice but the man in front of me is now gawping at her, and starts muttering aloud until I hear “…ah now I feel bad for her…” and off he goes to grab the attention of a train employee.

She’s still swaying.

Employee steps on the train, as the woman now turns away and saunters down the carriage in the opposite direction, leaving her bag on the seat.

Alarms ringing in my head now, you don’t do that shit on a tube these days. Should I stay or should I go. I sit frozen for a minute and decide I don’t believe she’s dangerous but also that I don’t want to be close enough to wake up in a hospital knowing how wrong I was. I move down the train and sit behind a few barriers…you know, in case something explodes.

This is London. I hate living with that background fear.

Back to the man who alerted the staff member – now he comes by and starts talking to me about how he’s never seen anything like that on a train.

“I’m gonna have a seat…”

“I’ve never seen anything like it either,” says I.

Dude’s now talking about how unfair it is that society lets people suffer with mental issues, and he glances over “…she’s clearly got something wrong,” he says. “Why don’t they fix problems like that? If there’s something wrong with someone’s brain, why don’t they scan the brain, find what is wrong and fix the problem…”

He’s going on and I’m liking the conversation. The injustice for atypical people is apparent every day for me now and it’s surprisingly pleasant to engage in a conversation about it with a total stranger. My thinking is different, my situation is different. I care for someone who will forever suffer from injustice. I like this guy. I’m very much in the moment until out of his mouth comes:

“…why don’t they just fix it instead of letting them just mong out...”




(I hear nothing but red noise in my head. It may well have been an explosion because there was nothing but red noise in my head.)

This guy is disabled.

This guy will have been the focus of those dreadful disdainful attitudes, thrown away, uncared for at a glance of that crutch, those glasses. I would imagine that probably on this very day he’s been treated badly by someone and there and then out he comes with…

“…letting them just mong out…”

Has he forgotten his own situation? Does shit roll that far downhill that there is nothing left to do but roll it further? Find an underdog society views even more…under? No. Not today, man. No.

This man dug up that word and I stopped listening. That disabled man is no ally of my son. That man threw my son under the broken bus. I probably should have called him on it but it was late. I was on the train. And I was in total shock.



I expect this attitude from the uneducated bulk of society in general but to hear it from someone who I try to fight for every. stupid. day…

I don’t know what to feel but rage, nor what to see but the height of the mountain we climb. It’s fucking huge.

This is what we are up against.