The Peddlers of Misery

One of my most vivid childhood memories involves Labor Day weekend. 

Not so much for barbecues and baseball games, but for a three-day telethon in support of the US Muscular Dystrophy Association. My mother was an avid viewer of this annual celebrity-infused fundraiser, and I’ve yet to ask her why (although I’m sure she’ll now tell me, because I know she’ll read this). If I were to hazard a guess, I’d say it was down to the entertainment and the novelty of seeing how shit Jerry Lewis looked after having lost two solid nights of sleep for yet another year. If you’re imagining the Griswold’s Christmas turkey you’ve pretty much nailed the look.

At any rate, the format of the programme meant that over that long holiday weekend, between celebrity appearances, he’d interview a veritable conga line of fundraisers, as they’d introduce one after another person with some gut wrenching backstory, expressing how utterly ‘needy’ and ‘inspirational’ they all were. Tearjerkers galore. It always made my stomach churn.

He’d sing “You’ll Never Walk Alone” to close the show. It touched my mom’s heart. It touched many hearts. It still does apparently, because it seems to still be going on. Despite old JL passing away, it seems to be new host, same show, if Google is to be trusted.

And here I doubt my mother ever called in and donated a dime (money was tight back then), but when those giant checks came out in the loving arms of their fully suited and booted purveyors, who grinned and gurned at all the good deeds they’d done to somehow pull together a donation of twothousandeighthundredseventysixdollarsandfortytwocents to help those poor, troubled, needy, helpless children, I always felt ill at ease, but could never quite put my finger on the reason.

Fast forward to 2002. 

I started a new job here in the UK on the one year anniversary of 9/11, getting stuck in after swabbing away the tears in a conference room with my new colleagues. The work was to do graphic design at a charity aimed at supporting elderly people who were once well off but had come upon hard times. What I mostly remember about that job is that I had to hike up and down four flights of stairs for a cigarette, and I could look out the back window and see Margaret and Dennis Thatcher having tea on their deck every morning. Even got view of the blue suit once. 

But the job itself wasn’t a good fit, and due to the ‘you are on 2 months probation and so are we’ setup I actually let them go, and we parted company. They don’t even appear on my CV, it was that uninspiring. This begging game, ‘be sure to bold face and underline that sentence, and use the picture of the woman frowning, that’s the one…’

Jesus wept. (But I don’t want to.)

My son was born ten years later, on a freezing February day in a freezing hospital which was under the watchful eye of the CQC due to repeat failings. I’ll not repeat the journey carried in my blog from day dot, but I look back now and largely see ableism screaming and glaring at me from every page. That deep-seated need to prove the doctors wrong, to celebrate every triumph with the copy equivalent of an oompah band, to prove to people reading, to all of society, that he has worth. That he isn’t nothing, that his life is deserved and he is someone to be cherished and treasured.

Who has to say that about their child? If you’ve ever, I’m with you. I hear you.

Still, why did I have to demand all that? What in the hell did I have to prove? Don’t all lives have inherent value? Don’t we all bleed red?

47 chromosomes. 47.

Look at that, some combination of number and letters that has the most inordinate power within them. There was a time that number and those letters meant absolutely nothing to me.

Today they are everything.

Join me now in 2022. What a galactic shit show. 

What has always given me the illusion of community has become a giant digital dodgeball tournament, all because a handful of passionate support groups said enough is enough, “the state of affairs is shit, and it’s actually ridiculously easy to support our kids. Let’s work together to shake the tree.” 

And would you believe it? Someone listened.

Someone listened.

This is not the doing of any national charity. 

This is not the result of some specific long-term campaign and politicking. 

This is what it looks like when grassroots activists set out to change the world…

…and get lucky.

The Down Syndrome Bill was the result of a Private Member’s Bill by MP Dr Liam Fox, and largely a result of the luck of the draw. Like, for real, he came up in a ballot. 

A ballot. I can’t even get into the London Marathon on a ballot.

People, this shit does NOT happen to our community. Rukai and others like him have perpetually been at the bottom of the food chain. The NHS tests pregnant women to eliminate people like him. No one wants a Rukai. I certainly didn’t want a Rukai. And that kills me now because I know better. My favourite human. No grudges, no bullshit, no ego.

But why? Why didn’t I want a child like him?

Jerry bloody Lewis. Him and his ilk.

What is the point of the great big pity party? How much does that kind of peddling misery inform societal beliefs as to what brings value to a human being?  Answer: zero.

I see someone keep banging on about how it’s not ability that gives a person value, it’s love. Actually, that’s a festering crock of shit. Are abused children lacking in value? Are orphans lacking in value?

Existence gives a person value. Love gives a person comfort.

And despite what we know to be truth about spectra, kaleidoscopes, fucking pinatas, whatever you want to call that great big mix of differentiation amongst people with Down syndrome, they all have worth. Capability doesn’t even get a look in. 

What capability does is to counterbalance that negative pity party shit still so endemic across our society.

Ten years ago I raged against the machine. Hell, I raged against the bloody sun rising every day when my son was younger, “how DARE you think he’s less than?! How DARE you!!” That anger just dissolves your humanity. That serves nothing but your need to rage. Rage is not a positive emotion. And I guarantee you as sure as I live and breathe, shouting someone down will not bring them on side. Demanding people to recognise your issues when they are of zero concern to Everyman, is bloody unrealistic and you are the Grand High Exalted Rainmaker of Cloud Cuckoo Land.

But here’s that weird life Venn diagram rolling in again. I’m an ultrarunner. I’m bloody slow. I run some and I walk some and I train a lot. A LOT.

I have a realistic expectation that 1) I entered the game too late to be an elite but I sure as hell can become the best version of me going, 2) I will likely never win a race, but I’ll be damned if that prevents me from entering the ones I want to take part in, and 3) The only way I will make progress is to be patient and not expect success. Despite how much you feel you deserve success, if you want to finish a race you have to start slow and to keep moving until you reach the end. Sometimes you go alone. Sometimes you have company. There is no entitlement in ultrarunning. There are no guarantees.

Sometimes you are progressing in the daylight and sometimes in the inky and starless void of night.

Oh life!

But lo and behold, it’s that last bit that is the most important, that thing that the modern peddlers of misery refuse to accept. That every forward step is a move towards something better, even when you cannot clearly see where it is you are meant to be going. You go. 

You go. 

That tearing something apart because you don’t see immediate benefit to yourself is not only selfish but it is the surest way to fail completely. We rise by lifting others. Boat analogies welcome.

You can rage against the machine. Or the community. You can cry it’s unfair and why not me, I want it all and I want it now. You can scream about division but in the screaming it is you doing the dividing. There is no entitlement to joy, you have to seek it. 

Sometimes even earn it.

If you choose to peddle misery you will only find yourself surrounded by the miserable.

DNF: education edition.

I will start with this: mainstream education has failed us.

That grand experiment in inclusivity is indeed little more than scientific hypothesis, suggesting that if we mix the two worlds together, each shall benefit from the other. But sometimes the scales tip deeply in the wrong direction. Sometimes mainstream benefits, yet it is the child actually fanning the flames of understanding who gets left behind.

Not for much longer. It's time to go.

Our mainstream primary school has been the most caring, beautiful place on earth for nurturing an inclusive approach. My son, this disabled child who learns more slowly, whose behaviours go well against the grain and whose words are currently best spoken with two palms and ten fingers - this child is no longer learning anything at school.

How hard is that to comprehend, let alone type?

It is important for you reading this to understand that this is not his failure. 

Read that again, I'll wait.

This failure to deliver an effective mainstream education to my son is down to systems which don't fund the appropriate support, the right training, the correct staff, to mingle in with the mainstream - without teachers and LSAs frantically doggy paddling to stay afloat and absorb specialist techniques and knowledge on the fly. That's not to say they didn't throw everything they had at it to support him. My heavens, did they. My heart is so full and I will love them all completely, until my last breath.

But this remains a desperately flawed system which tries to jam square pegs into round holes, all with one eye shut, to force fit everyone into a single, inflexible, one-size-fits-all curriculum. It's tragic on every level, really.

It is down to a society infected with ableist beliefs, one which places far too much emphasis on pace and power and money and barely any on empathy and compassion and patience.

This is not his failure. WE are the disappointed party.

The fact remains that we are ecstatic for the opportunity to enter a world of education which actually sees him properly. One which understands where he has come from and where he will go, and at what pace he'll get there. His. Not some generic book of standard pace, but HIS.

We're about to join the costlier of the educative roads. That which people love to call 'special' and mock and pity and feel shame towards, and I would beg to differ but I don't beg. 

It's not special. It's appropriate.

(Best read that twice, too.)

Once again, I sit in stunned silence wondering how we are so fortunate to have been told at such pace, 'yes, we agree he needs more structured and tailored education, so here - there's a place for you at a specialist school...

'THIS autumn term.'

We're visiting a potential school on Monday. The proposed start date is not yet confirmed but fits into 'this autumn term'. Guess what folks, it's autumn and we're four school days away from half term.

This pace is so blisteringly unfamiliar I cannot stop crying from the anxiety of it all. Because, quite simply, we don't do fast here. Ever. With regard to anything.

Still, the delight which I find in not having to draw a sword and go to battle, in being heard, in the fact that my son is being SEEN. Quite probably a few years too late, but our previous attempt at progress was mashed to a pulp in March 2020 just like everything else.

Pace now, is welcome - albeit terrifying.

The lack of control over such an important situation is not only awful but it requires me to free my caged and ravaged heart and dole out great swodges of trust to absolute strangers. This is something I don't do well. I've only ever done it during those epic long trail races, with likeminded people looking after me, seeing me on through the dark night, their own beacon of light joining mine to help guide the way.

Ah and there we have that Venn. Two lights shine brighter than one. Trust is earned but sometimes trust must be gulped down and inhaled and you take that backwards fall or that leap over the edge, expecting the cushion, expecting the arms, expecting the destination to comfort and caress and buy you a coffee or a pint, depending on the time of day.

But really - how do you like that? Another DNF. We made it to year 5, just. Time to put it down. On our terms. Feels familiar.

That mainstream journey hasn't worked out because of those very harsh and scratchy words 'severe learning disability' - only harsh and scratchy because, truth be told, like everyone else I was an ableist dick in my life before Rukai. And he's nearly 10 and I'm still working on it - working hard.

How that shreds my heart. He's my SON for fuck's sake.

But my God in the great beyond, I feel exactly like I did on hearing his diagnosis. But why? This is not his failure. This is not a failure at all. We've decided to move on because they no longer know how to teach him anything. 

Fact.

This. Is. Not. His. Failure. That repetition more for me than you, but do register it. I'm livid that I'm so stressed out about this. It's a lonely old life, mine.

And the pace, that blistering pace, here we'll guide you, go here, do this, go there, see them...

I cannot trust anyone enough to feel comfortable with this. But I know that mainstream has failed to deliver and this is what my son needs.

Special school? No, and that's the rub.

SPECIALIST provision.

See the difference? Words matter so much. That ableism boils beneath most people's skin. It's woven into our sinew. It's not the potential new school and it's students which are special. The people who do the educating and their techniques are beyond the ordinary levels of expertise. What is a specialist after all? A subject matter expert.

Huge knowledge. The right kind of expert.

And I'll wait for you to digest that, too.

I detest my historic thinking, and see it on the faces of those parents during the school run I will probably delight in abandoning, looking at us with a head tilt and an awww, or with abject horror as if we are foaming at the mouth, encased in a neon green fog with horns growing out our heads. Climbing up our heels as we shuffle towards the gate, impatient, churning, palpable frustration just oozing off so many of the folks behind us.

Of these all, so few come up and say good morning. The ones who do truly rock our world. The child having a lovely chat with Rukai - in Makaton - yesterday was enough for me to cling to, for what will soon be forever.

Ah yes and there are them tears. Rolling in the deep, still a fire starting in my heart. I'll need a bit of salt later - been some few days around here, what with all this emotion.

But alas, we were part of that world once. For five and a bit years, we were there. We did not finish - they couldn't do enough for him.

This is not his failure. 

It's time to go - so we're going.

Remember him.
Remember what you learned.
Remember what he taught you.
Remember how he shines.

Remember him.

Bacon and age.

(Originally posted on Realbuzz community)

My head, when writing about running, has been as blank as the race calendar I'd planned in 2020. What an odd place to be, where I've done more mileage, more training, than I'd ever done in my life, for no reason other than to not wither up and die of boredom? Some 1200 miles on the Strava clock last year, and the start of this one containing over 600 miles and 60,000 feet of elevation already. The only way is up, indeed.

But dear God, tell me I'll use it. I'm seeing the sparkle of an imminent race, but like that magic trick that goes wrong where they pull the carpet away and the tower comes tumbling down, this time, this madness, jumps up and nips us in the achilles right as we're readying for the starting gun. I am expecting the worst. Tell me I'm wrong. Just do it.

That joy of digging out the box of race shit! The hustle and bustle of a registration tent, teeming with adrenaline, big dreams and lurking nightmares. Broken personal records, and racks soon to sink under the weight of new bling. 

It all went the way of the dodo didn't it? Please let it not anymore. Please. 

Please.

Good lord, what a long and arduous year, that 2020.

I bid it farewell with a load of training on my legs and an elevation challenge taking the place of the regular December Marcothon. Unfortunately what I'm calling 'not-Covid' struck me down for a month (I think it was but the test/s didn't, so there ya go) and after a stint in A&E and some emergency tablets to get asthma under control in December, I re-commenced the training plan in January. 

Now this has gone the greatest of guns up until a couple weeks ago when ye olde peroneal seems to have contributed to a new foot injury after I found some glorious new hills in Epping Forest to call a playground. Sure, maybe it's not clever to go belting up and down 18-20 miles of hills more than once a week but I've now morphed into something of an an ultrarunner so this has become the new normal.

The only part of the new normal I like, mind, yet still, running long is the blood and breath that keeps me vertical. While all of life is falling down like a toppled tower of cards, mine is in a tumble dryer and I'm spinning, spinning, trying hard to rescue that mad sock before it disappears into wherever those mad socks go. Without these miles, my mind would have broken long ago.

Now. 2021.

I'll start with 'at present, my shortest race is 50 miles'. 

That's mental. I really must book in a few shorties, but that's where I'm at. My time has suddenly become severely limited and when time is limited I go long and long and long.

But in that 2021 is a continuation of what didn't manage to happen in 2020, that's where we make up the lost races.

This is also the year I turn 50.

Good lord. Did I just write that?

Of course, this, being me, means I have to now go out and do some mental things because that is what I do to feel alive nowadays.

This also being me means I'm doing it for a cause, and this would be for the most important other human in my world and that is my gorgeous boy Rukai. So I'll be waving the fifty flag to raise awareness of the new All-Party Parliamentary Group for Down Syndrome and raising a few bob here and there for the Down Syndrome Policy Group, which consists of grassroots campaigners representing those agencies who are doing all the legwork to ensure policy is in place to support people like my son into adulthood. 

Because you see, his journey to 50 should not be fraught with exclusion and poor health care. It shouldn't be met with societal disregard and inequality. The DSPG will go the extra mile to make it happen and so will I.

I thought I'd get a bit creative in naming the challenges I'm going after, because - me. So herein lies the plan:

1. The Hills Are A Lie

With a chapeau to Instagram's Ultra Running Memes and the known known that 'vert's not real', I am attempting my second ever 100k in Ultra Challenge's Lake District Challenge on the weekend of 12-13 June. I keep reminding myself that 100k is 62 miles in new money, because 62 is smaller than 100 and I don't think so much that I will die. In the midst of the 'Great Big Lockdown Running Spree of 2020' I did go out and undertake an unsupported 50 miler I lovingly named 'Sadistic Saturday' so I'm one longo closer to that 62. But still. First and last one was in July 2019, which feels like a hundred years ago. See? No escaping that hundred. Bloody three digit number.

My gauntlet going down now: goals are gold: sub 18, silver sub 20, bronze, finish in the face of some random catastrophe. 8600 feet of elevation in the books. Bring. It. On. (FWIW, my 100k PB is 22 hours and change. I thought I was dead but I didn't die. And Em was there! Magic.)

Oh and I'm camping. Ha! That's another thing I've only done once in my life. Because you only live through the year you turn 50 once so why not make everything you do totally unfamiliar and uncomfortable?! Why not, indeed.

2. Good Things Come to Those Who Wait

Not only because I like Guinness, but this really is a good thing that I've waited for. And waited, and waited and...well, you get the idea. The Shropshire Way 80k was meant to happen last year in April. Then it was happening last year in September. Now it is happening on August 14-15 (are you sensing a trend with the two day thing, here?) I expect to be reunited with a Buzzer or two on that weekend which is why I haven't postponed as a 50 mile / 8200 feet event two weeks before 'TheBigOne' is not as totally insane as it sounds. (Ok, it is, but Sir Bolty said he thought I could do it, so I'm doing it.)

3. Operation 86

Provided I don't die in the Shropshire Hills, I will toe the line for the longest.event.of.my.life. the Ridgeway 86, on Bank Holiday weekend, 28-29 August. This was meant to be the be all, end all event of last year, and has a special double meaning.

In the US, 'to 86' something is to get rid of it. What my intention is/was for this race is to get rid of my own fear of going such a massive distance, but to also encourage other people to get rid of their own fears and undertake an activity they're afraid of to challenge themselves. 

The other intention is/was to raise awareness of the fears people have around Down Syndrome, the condition my son has, and to offer public conversation with honest answers about real lived experience so that people don't go through their lives perpetuating myths and stereotypes. I have been surprised for the past 9 years at how easily those have been proven wrong in my own life and I want to help others see how much potential kids like my son have. To give them a chance. To 86 their own fears. 

I expect that finish line will be grinning and teasing me. I don't know if my legs will have the right stuff on the day but I'll deliver what I always deliver. And if I don't get to the finish line in the cutoff, I'll get to the finish line outside the cutoff. Provided there aren't any bones sticking out of my leg. You know, as per.

Now it must be noted that I'm debating pushing the envelope and trying to stagger to 100 miles (you know, once again if I'm not dead at this point), but I'd need a 14 mile route and some crew. All goers welcome if you think I'm nuts and strong enough to pull it off! Failing that, the final challenge of the year is the Great Big Birthday Run and I'm calling it...

4. Bacon and Age.

This is the Joker of the diary and it is most certainly wild and will most certainly be a bit of a pig for reasons of duration. Wild in that I've no real idea of what it's going to look like yet, aside from I'm going to start running at 6:58 pm on October 27th and conclude running at 6:58 pm on October 28th, which is the precise moment I was born and so turn the calendar over to officially old geeze. Why not run in the new decade?

I'm not sure where I'll go, other than I want to do some varied loops in a beautiful place in the UK, going back to the same start point in between so I have a base camp and lots of food. Hopefully some bacon as that is the nectar of life (aside from Guinness). If I don't swing the 100 mile thing in August I may try in October. Or I may say hell with it and run a mile an hour. Jury's out. All I know is when I leave this decade and enter the next, it's going to be at pace. Because, me.

After all, relentless forward progress is the name of the game. 

In between all this, it must be said that my actual personal life is in a huge amount of chaos but it is because of all this that I know I will come out a winner there, too. I will reach the finish line, because that is what I do. Stopping just gets you stiff and cold and short of your destination.

To all you Buzzers old and new (but not the CBD spammers, you can collectively go do one) I wish you miles and miles of joyous running. May we all meet again soon enough.

There's nothing like a Buzzer hug and my well's run dry.

Go forth and...

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.

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.

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.