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.

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.