Friday, 22 January 2016

Bring it.


There is not a snowball's chance in hell I could have even attempted to run a marathon when I was 21. When I was 21, although I'd been a dancer and was still physically strong, I was mentally brittle. I had no steel. I was too afraid to pursue a professional dance career and resorted to teaching. An honorable craft but not my original plan. I was treading water, and not particularly well.

But hey, I was invincible, life was all mine, there was promise and opportunity and tomorrow was a blank canvas. There was certainty and familiarity and surety and calm. There was walk away if it's too hard and there's always tomorrow.

But I was rubber. Pudding. MDF.

I spent so many years without a single goal to see me through the day. Other than those for work of course, those are always present, those which ask 'what did you do to earn that crust today? Why should we pay you? (and it ain't cos of your gleaming white smile, Sunny Jane)'.  Those kinds of goals are there and our hand is forced to draft them, our elbows forced to graft them. But in the absence of those goals for The Man, what do we pursue? When do we seek for ourselves? And what do those of the couch potato and tavern-with-a-beer-soaked-floor persuasion reach for when there is nothing but that blank canvas and a silent apartment at day's end?

I managed to eke out a college degree but around it, for so many years I had no goals. Not a one. I despair when I consider how many years I wasted. (More than I was actually in despair during those years.)

Enter 2012.
A single longed-for pregnancy so hoped for, yet made so miserable, having been tarred and feathered with 'risk'.
Beautiful son born with a condition that made doctors discard his possibility, to my great fury.
Dad diagnosed with terminal cancer.

I was burning.

I was spinning. And still I maniacally spun those plates, yet I circled faster then they ever could. There was nothing I could do about any of these things yet I had to do something. Or risk them all launching away and shattering against the wall.

In March 2013 Dad left us for whatever lies beyond this life and within two weeks I'd signed up for a 5k charity run, to honor his memory. Because I had to do something. And I had to do that something so badly that within three short days I decided that 5k was only 3 miles and goddamnit I was a tougher nut than that, must do more. I had to suffer. He suffered, so I had to suffer. I changed it to 10k. I hadn't run in over 20 years, that last slog forced upon me by some drill sergeant-esque gym teacher and her chrome whistle, but I was going to run. And sure enough, I trained my ass off and raised lots of cash for charity and I ran. My lungs were screaming and my legs in agony on the day but damn it if I didn't stop. I felt Dad running with me. I crossed that first finish line and cried myself clean of water. I toasted Dad with a Corona, then cried that out too.

And when it was all said and done, the first thing I did was look up my next race. I kept running. I kept running because I suddenly had something to reach for. I had a goal that was just for me. It was bliss.

Fast forward to today - three half marathons, maybe a dozen 10ks and hundreds of training miles later. Umpteen injuries later. Plan A now turned to plan QQQ because it all changes, everything changes, like the leaves and our shoes and the color of our hair to steely grey it all changes. And here I train for the big kahuna. That mythical distance called 'Marathon'. 26.2 miles. Like Sir Edmund, because it's there. Because so much more.


And I'll be damned if I no longer feel like the Great Pretender. I feel like a runner. I may take the odd walk break but I am a runner. You can no longer pry my feet from the road when they want and are fit enough to be on it. This is my spiritual bliss. This is my soul's freedom. This is my mind's challenge, and my heart's nurturing, and my 'me time' and my 'just getting out sightseeing in the woods on the weekend'. People who don't run want me to shut the hell up about it. People who run just nod and say 'mmm hmmm, dig those new Asics. Wicked negative splits. How's your heel? Did you get out this weekend?'

Today I'm out on another shortie tempo run, in training for that first marathon. And would you believe this 5k was approaching the utopia of 'a breeze'. Imagine this, imagine me, to run 3 miles and barely break a sweat the first two. I was waiting to fall apart and then suddenly I'd gone 2-1/2 miles and I was circling the last corner for the home stretch. And only just feeling the burn. And I wasn't exactly plodding along.

This is not even in my realm of possibility, right?
This can't happen, right?
Surely I'm not capable of this level of fitness, surely I can't have got this far this fast.


Hang on.
Hang right the hell on.
There is no such thing as 'never'.
There is only I am. I can. I will.

And it's occurred to me that I learned this ridiculously important lesson from my son. Me, no longer 21 - that water under the bridge says this girl's no girl. This girl's 44. Twice twenty-one and a bit on top, like a shiny maraschino cherry.

That water under the bridge that carves canyons out of striated rainbow-colored rock.
That water that strokes and soothes away obstructions with time and reason and patience and knowledge and understanding.
And will.
And fortitude.

That water under the bridge full of confidence I gained from time with my son.
From showing him the way and then taking his lead.
I learned patience beyond imagination.
I learned how to dig mental strength out of an empty vessel on an impossibly difficult day.
I learned when to run and when to walk because sometimes you need to catch your breath before you can run faster. And you do run faster.

I learned how to tug on a hat and waterproofs and go chugging through the rain because the rain washes clean the worry and the fear and the negativity. The rain cleanses the earth and clears the way ahead from impurity. That rain we splash through and laugh and revel in. The watery chill that wakes us from our drone-like slumber.

My mind and I have a much greater mutual understanding these days.

I could not have run 26.2 miles in my dreams when I was 21 because I was pudding. Because at that time, I did not have most of what I have today.

With age comes loftier goals that dig into our chests and clasp our hearts, every belligerent sunrise challenging and tempting us to be better than we were yesterday. We stand taller and shield our eyes from the glare and say 'bring it. You just go on and bring it.'

With age comes purpose. Shape-shifting purpose. Without a roadmap purpose. 'Because I can' purpose. 'I don't give a rat's ass what you think about it' purpose.

I am.
I can.
I will.

For Rukai. For Dad. For me. I will.

Today is Tomorrow.
Today I am strong.
Bring it.

Saturday, 16 January 2016

It's all about the Benjamins.

Yesterday's news of the non-invasive pregnancy test poised to be rolled out across the NHS has caused nothing less than a raucous shit storm in the UK Ds community and for good reason. The terms 'genocide' and 'eugenics' are being bandied about and for good reason.

The two questions not asked or answered in any article I've read, questions which I wish some, ANY, reporter would have the balls to ask: "How much money will this test save the NHS?" and "Isn't it true you want to eradicate Down's syndrome because there may be health issues along with it on which you do not want to spend money?"

(Catch that 'may'. That's an important one right there. I'll get back to it.)

As for the questions, I believe no one would dare speak aloud the answers but would rather dance around them with lots of malarkey about helping women to make the right choice. Pretty obvious what they think that 'right' choice is.

Fess up folks, this is eugenics plain and simple. Society does not value my son's life and that flat out pisses me off. I have one child and will not sit back and let you call him 'less than'. Nice try, though. You have been weighed, measured, and found wanting as they say.

When I was pregnant with Rukai I came across the NICE guidelines around pre-natal testing and these so called 'choices'. I don't think I have to tell you what was listed as the first choice to discuss with a prospective mother. And they do love to caress that word 'risk', yet won't admit that the biggest risk to which they are referring is to their financial coffers - fact remains there are plenty of people with Ds leading wonderful lives, going to college, getting married. I saw a wonderful story the other day about a mom and her son, both who had Ds. Life goes on.

All life, if you let it.

Risk? That risk of giving back to society. Not exactly a problem, is it.

It's all about the Benjamins, baby.

Misinformation and fear caused the rise of the Nazis.
Misinformation and fear perpetuates fundamentalist terrorism.
Misinformation and fear created racism and keeps that, too, ticking along.

If you are reading this and believe any of the scaremongering, go spend some time with folks who have Ds, talk to their parents, ask them all what life is really like. Tell you what, your shoulders will drop and you WILL be enlightened. Of this, I have no doubt.

Our own reality: Rukai has no debilitating health issues.

I'll say that one again in case you missed any of it. Rukai has NO debilitating health issues. The only 'suffering' he does is having to live in a world that doesn't value his presence in it.

He had two small holes in his heart at birth, one which many typical folk have throughout life with no ill effect (including, as it happens, the cardiologist we met at Great Ormond Street a few years ago). The other hole closed spontaneously when he was around four months old. This may not be typical in people with Ds but it happens. I doubt people even realize it's possible - we didn't. But it happens.

Sure his development is delayed. He reaches milestones late and he stays there longer. But while he's there, he really is just like any other child at that stage of development. That includes late developing motor skills and speech - the learning to walk and learning to speak more difficult but he tries and pushes himself all the same. So don't sit there and tell me my son isn't cognizant of what's going on. He is not a cabbage, despite what the financiers of all these NHS money saving initiatives would have you believe. Yes, we sometimes feel stressed raising him but so do all parents of ALL children. Try again. You will find no valid argument here other than that which relates to money.

Take all those stereotypical images of 'suffering' and other such ilk out of the conversation and all you have is a child who is different being marginalized by a society which is perpetually being fed misinformation. Believe what you read at your peril.

It's all about the Benjamins. Every last bit. Stick your money where the sun don't shine, cos my son SHINES. All the testing in the world will do nothing to change that.

Friday, 15 January 2016

Great expectations.

Bring a 'disabled' child into the world and the most amazing thing happens. You suddenly bear witness to a worldwide underground fitness craze you never knew existed. And that shit is EVERYWHERE. Hospitals, doctors' offices, schools, playgrounds, theme parks, the grocery store, you name it.

It's called Jumping to Conclusions.

It seems everyone but you and a select few clued up people are doing it. And it makes you redden and sweat buckets although you don't practice it. It makes your heart palpitate and the veins in your temples throb in anger and frustration. It makes you heat up straight from your very core even when you're perfectly still, usually with your mouth agape, wondering what child those quasi-athletic wunderkinds are looking at because sure as the sun shines, all that jumping, all that concluding, does. not. apply. to yours.

(No, no, you are delusional, he is entirely limited by his disability and will only go as far as our statistics say.)
(jump, jump)

Bring a 'disabled' child into the world and you will near instantly learn volumes about accepting difference, and still more about how every child really does develop at his own pace, his own journey drawn by him and no one else. And he chases it. By God, he chases it with his arms trying to embrace the sun, the wind blowing his cheeks red, his feet tumbling over one another at whatever pace is called HIS OWN. He chases it with all that he is because it is in him. Because he is being raised to understand that if he wants it, if he works for it, it is his. Just like everyone else. He knows he can achieve and he knows we believe in him and he knows we will not let the detractors drag him down. He knows we entirely have his back.


(But he has Down's syndrome, he can't KNOW. Surely he can't KNOW.)

He KNOWS. Put your tickboxes down and observe our son.

Yet they try to break him, saying no, no. Not you.
You aren't.
You can't.
You won't.

Still all the negativity and erroneous conclusions in the world will not stop him.

Because he IS.

He KNOWS. Do not dare persist in underestimating him. It would be amusing if it weren't so pathetic.

Despite what the Jumpers want to believe, the signposts of goals and achievements for everyone in this life do not match one another. They are not equidistant, and they are all too often not even pointing in the same direction. All human roads bend and loop and sometimes wrap clean around themselves before coming out the other end. Sometimes they come to a dead stop and start back up again. Sometimes the paths meet up along the journey, hinting at similarity, the whisper of a reflection gone as quickly as a raindrop dissipates pond water into concentric ripples.

Yet lo and behold around that next corner, just past that next signpost, they jump til their knees stiffen and their backs ache and their brains bruise from crashing against their skulls. And every once in awhile, they'll fall. They'll fail. They'll break.

Because he will break them.

He will rise and they will fall.
Their conclusions inaccurate, their assumptions flawed, flimsy, lazy.
Their expectations of him miniscule. Sometimes nonexistent. Given with barely a breath.

“But he has a learning disability,” they say. “We don’t expect him to go far.” Flippant pity.

And you reply no.

No. Maybe he’ll go work in a theater company.
No. Maybe he'll go perform in a symphony.
No. Maybe he'll go work in IT.

He will go as far as he works to go. Unless you are the great master of the universe, I'm afraid you and your fortune telling jumping game do not apply.

Sit the hell DOWN and pay attention.

The only conclusion you are allowed to reach is that he is the master of his own fate. You and your statistics are not in charge of him. You will not succeed in underestimating him and cloaking him in your negativity.

If you had your way he'd not even exist. He does. And he will soar. Get used to it.

(jump, jump)

And they frown at you and shake their heads and call you difficult. And obstructive. And in denial. 'Our numbers say here...'

(jump, jump)

Here on the cusp of age four, we are not blinded by all that head rattling because we are on the solid ground called Reality. Called Ability We've Witnessed, and One Day at a Time. We rise and fall and rise and rise again. We expect so much more of our son than does everyone else because we have seen his intellect and his drive and his passion deliver his progress. We have witnessed him think and process and experiment. Great human beings deserve Great Expectations. We would not dare cheat him with less.

And so our goals for our son are simple: soar. Find your joy and embrace it. Find your passion and deliver it. Find your road and own it. In your time, in your way.

Own it.

We follow his lead. We watch this clever little boy who is taking a little bit longer to stop and smell the roses on his journey. And this is a problem, why? Not in our world.

(jump, jump)

This so-called 'disabled' child is every day fulfilling his unique purpose - a singular and boundless opportunity to be magnificent. Just like everyone else. One day he will look back from his place far ahead in this life and may indeed feel pity upon those who once pitied him. Pity the small-mindedness.

Dare I say I would cheer.

They can jump clear into the sky and conclude til they run out of guesses. We expect our son to blow their minds and we know he will - we've already seen it. Perhaps they should stop jumping now, take a seat, stop concluding and pay attention.

It'll be a wonderful sight to behold.

Wednesday, 6 January 2016

He is your world. You are his mother.

You know you've got a time management problem when you have three toothbrushes dotted around the house because when that five minute window opens, you want to be READY, baby.

You tug on mismatched socks because your dryer is a power eater and the actual pairs are all buried somewhere in those overflowing laundry baskets teetering in the corner. As long as they don't fall over and the tubs blend in with the decor, it's cool. If they stay there long enough, they become invisible anyway. And you're cooler with that. If only some laundry folding fairy could turn up, you'd be positively arctic.

'It's not dirty enough NOT to wear' becomes your mantra. You don't remember the last day you haven't heard the washing machine running. At least it's productive white noise.

And so you live. And you grow. And you thrive. And you teach.

And you mother.

Yet your kid has extra needs and you fulfil them unflinchingly. It is mostly unnoticeable because you just do what you need to do. And you put yourself first only when you are falling. And you rarely fall because that very same kid lifts you and lifts you and lifts you. And he DOES inspire you because that journey is more difficult than it is for a typical kid. He does inspire you because you can see him thinking and watch him when he's pissed off that he's failed at something. And then he goes back and frowns and grinds his teeth and tries again and again and again til he gets it right. And he always gets it right eventually.

He is so driven, and most people nowadays are weak spongy puddings, and so by all that is good and holy, he DOES inspire you.

And that is that.

You know you own an iron, but haven't got a clue where it is. Truth be told, if you found it you may think it better put to use as a door stop. Some part of you is always decorated with food anyway.

Every time you go clothes shopping you end up with four new developmental toys for your son...and another toothbrush. Plus a few for him. Just because. Some of your clothes were bought in the 90s.

You go out for a run to clear your head and find yourself practicing Makaton to your playlist. Even though it gets a bit weird when AC/DC comes on, this still makes you realize how much sign language you can pick up from television. And now you want to get home and practice with him. Maybe without the innuendo-laden hard rock, but still.

Because you live and you grow and you thrive when you mother. As you teach him, he teaches you. The love and the discipline, that greatest Yin and Yang of all, the give and take of this unwavering bond.

The fridge is packed with food for Captain Picky Eater yet you and your husband are on your third takeaway of the week. 'We're out of Weetabix' becomes close to a national emergency. You have bananas in the house but dare not eat one, lest he run out. Same goes for yogurt. The thought that you should shop for yourself as well hasn't crossed your mind in a few months. It usually only does become a thought a couple days before payday when you're eyeing the Ramen noodles at the back of the drawer because the takeaway funds have dried up.

You resolve on New Year's Day that THIS year, I'll get enough sleep. I'll put him to bed and switch off the laptop and rest and rest and rest. But on day one, zero hour, you reach the bottom of the stairs and forget. And you Google, and you blog, and you read, and you shop. Then it's three am. Then you hear him stir on the monitor and you stop everything to be sure he doesn't require you. If he did, you'd leave everything cold and go sleep beside him till he dropped off again. Sometimes the stirring means a nappy change is in order. And you rush up to sort him out asap to ensure he can get a decent sleep. So you can get a decent sleep. And thank God he usually does sleep.

He is your world.

You are his mother.

You take care of yourself just enough to ensure you can help him soar. You lean on your spouse, your friends, your family for support when you need to switch off, but fact remains he is your world.

You wouldn't trade him for anything. The only trade in is time for you, which you put aside because, frankly, he is entirely worth it. That he is a joy to be around is merely a bonus prize. Except when he is Captain Crabbo. Then you want him to go to sleep and leave your ears in peace for a while. And then you only go and miss him, Crabbo or not. You check on him in the night and you linger. Just to watch him sleeping, you linger. Even when you can at long last go to sleep...

You linger.

You look after yourself by measuring his progress today, since yesterday, and know you are doing a good job. Despite the naysayers, you just know. This grows you.

You look after yourself by capturing joyful moments and knowing you are raising a happy boy. Your favorite pastime (aside from actually finding time to brush your teeth) is watching him think. You soar when he succeeds at ANYTHING those long ago doctors told you 'he won't...' Yes he bloody WILL. This grows you.

You look after yourself by marching with him to 'The Grand Old Duke of York', and 'I Want a Hippopotamus for Christmas' and the intro to 'Gigglebiz'...hell, you march to the food chopper and the vacuum in this house. Anything and everything that makes him smile. You march for minutes, then hours, til your calves cramp and your feet ache and you can't kick once more or your leg will actually fly off. He watches himself in the mirror marching, and you grin at him 'good boy, look at you go!' and he grins back and launches those knees virtually to the ceiling and you wish you had champagne to celebrate.

Alas, you grow tired of marching and sit. He complains.

You get up and march. Because.

The grand victory hidden in the minutiae. The leap masked in the small step. These all massage your mind. These all smooth the worry from your forehead. As he grows, so too do you.

He is your world. You are his mother.

Monday, 4 January 2016

And in with the new.


Oh the running the running. I'm back to the running. Ok, well not this past weekend but still - over the Christmas break there were nonstop 5ks galore, there was a 'trending faster' on Strava, there was a pain free over-10-k. There was a glance at the Garmin during a comfortable stretch to learn the pace was for me a blistering 10:12. And here I thought I was an 11+ minute miler. It's so fantastic to see your pace speed up, particularly post injury. I'm glad to have had a few days off but still champing at the bit to get out this week.

Why off? There's been a break from work which means DIY calls.

But I'm sure I can get fitness points from the distraction in question: 48 hours of painting the kitchen. Up the ladder, down the ladder, wipe wayward paint off the floor, wipe forehead, wipe wayward paint off forehead, grab a beer, discard can, repeat, repeat, repeat. And surely inhaling paint fumes is cardio, right? Aren't my lungs learning to work around toxins in the air? So in effect, the running of 26.2 miles through the streets of London and all it's diesel, stale beer and waft-of-wee should be a doddle. Or so I hope.

If that doesn't cut it for the weekend workout, I've surely covered at least 10k worth of marching through the lounge to the festive magnificence that is 'I want a Hippopotamus for Christmas' with my best boy. "Surely you jest!" you say. "That's not runnin', that's funnin'!" Ah, mais non. This gives high knees an entirely new lease on life. Better still, if there was any question whether the workout was finished once the song ended, Mini Coach simply retrieved the remote, planted it in my hand, stared me down and got shouty until the music started up again. But then again we already knew who's in charge. In fact, last time I foam rolled, old MC stood watch for a minute before he decided I wasn't applying enough pressure so just climbed on to my back. Ye Olde Transport for London muscle didn't have a chance. Tell you what, the boy's small but he's built like a brick shit house. True story.

Tomorrow it's back to work and back to the regime de rigueur. Operation Iron Arse is going swimmingly. I know this because I no longer have a frog ass. It's magnificent! If only everything were that simple. I've also incorporated to the routine the jelly-legged person's version of pistol squats, which I've named 'Pistol Squats in Principle'. That being balance on one foot in a slight squat for a minute until your kneecap blows out of your leg, you fall over, or Mini Coach returns, demanding another round of marching. And you do what you're told. And you'll LIKE it.

Oh I like it alright! Roll on April, but not too fast. Slow and steady finishes the race.