Saturday, 16 December 2017

The one where all the dreams happen.

It took me twenty minutes to stop crying.

Twenty minutes! That's a high school lunch break. That's a 'between meetings comfort and email break'. A drive to the forest. That's how long it takes to finally fall asleep after a day so hard the only way you find dreamland is to think of 'white, empty space' and hope for the best.

Twenty minutes. But it's little wonder it didn't last longer, because this was a moment I'd waited to see for the entirety of my life.

One stage.
One dance performance.
One son.
One lifetime of hoping I'd live this moment.

We have been so blessed to have found the place we live in now, and oh how we found it! Nearly pushed away by a real estate deal gone sour, we somehow stumbled upon our current home 3-1/2 years ago, only five houses east of that lost property. This house has brought us to and kept us in this place, amongst these people, with this dance school, with that amazing human being who has been so welcoming and wonderful to our beautiful boy who wants little more than to share the joy that radiates from within him with everyone in reach. Shaking bum. Grooving to his own beat. 

My son. On a stage. Dancing.

Years ago I prayed that he would dance. They had me so worried he'd even walk. His walking still stilted with poor balance but today the angel that's going to change all that. Because...well, I'm crying again as I write this. Because those deep fears remain ghosts. Those worries, vapor. That was my son up there. MY son. On a stage.


Yes, I later had to carry him to the car he was so knackered, but STILL...

Those who have known me for decades will be reading this with an altogether different totality of heart and may quite likely be stood up and cheering. My life was dance. My only motivator was dance. My soul...for dance. I wish you were all there. I wish you could have seen that live. 

My God.

It all feels too hard to explain, too vast to bundle up into type on a screen. But if you know me you know I was incinerated this afternoon. I stopped filming and fled to the lobby. Absolutely unable to stop the floods of tears. I saw a man standing there and tried to explain what I was feeling, how grateful I was. He happened to be the father of Rukai's dance teacher. It was as beautiful a finish to that beautiful moment as I could have imagined. I thanked him for creating her. And I meant it.

I'd started filming the stage some 60 seconds before Rukai was due on it. I didn't want to miss the curtain stroking past that beautiful face. Not a second to be lost. Not for this. No way.

I said to the air 'come on dude, you can do it'. Not because I didn't think he could, but because I could not believe this moment had finally come. That I was about to see this. And the curtain pulled back and there was my son. On that stage. And it was all I could do to hold the camera still. And exactly as I did the day before while watching him perform in the school nativity, I wept silently, while an epic grin reached the lobes of my ears and quite probably pierced them with joy. A joy that wrapped around my very soul and lifted me straight to heaven to high five the lost family. Those who were seated right beside me while that camera captured it all. They clapped and whistled for all they were worth. We celebrated that magnificent performance.

The one we were threatened with never being able to see, those many years ago.
Oh, we saw it, mate.
We saw it.

And that pride of my pride knows my pride because I told him all about it. After he saw me grinning and waving at him in the finale. And he waved back. And in that room full of our new 'dance family', there was, for that moment, no one but us. Me on the floor filming, him on the stage waving. 

Oh this moment!! How it shines!!!

I'd no doubt he'd blow me away this afternoon but I am still entirely in shreds. And just like I'd rebuilt the cheese all those years ago, I have glued the heart back together again. My pride---

God, there are no WORDS for it!!!!! I have lost all eloquence, the prose gone to gurning. I am equally full of and empty of emotion. Never been so spent in all my days.

This has been a glorious year of personal disaster and equal personal triumph. My plans for the next are larger than anything I've ever pursued, mostly because I need those challenges to build myself into a better me. I am nothing to Rukai unless I am the best me going. He deserves nothing less.

But man alive, that boy--my boy--

Well, if he is supposed to be suffering...
If we are supposed to be 'barely coping'...
If our life is meant to be difficult, and challenging and painful...

Burn the dictionaries.
Go back to preschool.
Teach me all of existence once again.
You are wrong.

My words are the very best I've got to offer, and today these words are clumsy. Disjointed. My mind is in a whirlwind. 

Today, my son was dancing on a stage.

If I should die tomorrow, that alone has made this a life worth living.

Monday, 20 November 2017

Goddamn you, he's a PERSON.

It happened to my Dad once.

As he was dying, it happened to him. His body was riddled with the cancer that would eventually kill him, and he was in so much pain he could no longer walk. Disabled too by time, something which we will all face if we live long enough. That very reason society shits on the elderly. No one has the patience to 'deal with' them, the slowed pace, the grumpiness about physical deterioration going hand in hand with awareness of their own mortality. These all hard won along with the wisdom of the years should earn them respect. But so rarely it does.

Those years forgotten. Achievements forgotten. To an ableist stranger, if you display disability, you are nothing.

We had all gone over for a visit, that last Thanksgiving together, the most melancholy I'd ever known. No joy, no thanks, just fear of what was coming. And the pain was fully in charge of the visit, forcing Dad's pride into his pocket and his body into a wheelchair. On that same trip we'd taken him out for dinner, one of the last we'd ever have with him. As I got Rukai and myself into the car, T started to wheel Pop from our table to the door of the restaurant. But he couldn't get there.

He couldn't get there because some impatient, selfish, ableist fool stood firmly in their way, looked directly in their eyes and wordlessly challenged them to just try to get past him. Oblivious to the scene from my vantage point in the car parked out front, they finally managed to escape and Dad was apoplectic with rage. A record number of F bombs, even for him - and for someone so weakened by disease to be so strengthened by anger told me all I needed to know about the exchange. Funny thing, big emotion. He was like entropy contained by two armrests and four wheels. The message embalmed in all that fury: goddamn you, I'm a person! How dare you disrespect me, merely because I cannot walk! If I were a younger man, I'd...


Five Thanksgivings later, here we are in this small town, on the other side of an ocean. Minus one Dad. Plus one inclusive mainstream school which has been amazing, as have all of its parents.

Until today.

Now, Rukai is not a steady walker. We know this so we are always aware of and courteous about space and the speed at which typical kids wish to plow across a playground. We try to keep to the side to keep things flowing. We go at our own pace. Admittedly, sometimes this pace is frustrating even for me, but it's Rukai's so it's ok. He's in charge of that show, I'm just the stage crew - opening and closing the curtains on each day, standing by in the green room making the tea.

Today we crossed the road more slowly than usual, hoping 'that-woman-with-the-pushchair' would pass us by before we could position ourselves on the narrow path. My way of thinking has always been that if you want people to be tolerant and accepting of your needs, you have to work within their norms while maintaining and teaching them your own. It's a bit like going outside to smoke before it was mandated. Courtesy for other people. That flows in my veins, it always has.

Clearly that doesn't work both ways.

Throngs pouring through the school gates, rushing to and fro to avoid missing that 'AM' attendance tick and having to go explain lateness again, I could actually feel the frustration as we hit the bottleneck at the gate, followed by the subsequent draft as people raced past us. After we were nearly rammed by three of them, I considered moving us to the side.

But why should we have to? If there's a roadblock while you're driving a car you don't expect it to move out of your way, do you? Slow the hell down or go around us. We have a right to be here too.

Now approaching the labyrinth of picnic tables, two pushchairs are passing one another. One heading in, one heading out. 'Out' pauses to let the other one through, with a slight smile and nod for 'In' and barely a glance at us. As we begin to navigate the same route, she barges past.

No room for you. Too slow. Get out of our way.

This did not just happen here. Not here.

No mate, you get out of our bloody way.
Goddamn you he's a person. You get out of our way.

I am on fire.
I bring Rukai up the ramp and our amazing TA is there, seeing it all on my face.
'Are you ok?'
No I'm not ok.
This is not ok.
Society is not ok.

I am broken. I am in shreds the past couple weeks and those shreds were just tossed on the fire and set alight. The black dog, the black death, whatever it's called it's got me in a choke hold right now. I completely lost my shit in the car on the way home and screamed it out. It made me feel better. Just. Meanwhile the wheel called 'things-which-are-so-bloody-hard-to-change' is rolling me into the mud again. Oh to break the wheel like that fictional Khaleesi.

It occurs to me that a talk I gave earlier in the year at work which required a bit of research into how society views Down's syndrome has really shaken me to the core. I cannot un-see or un-hear some of the horrible attitudes out there, I cannot take away the misinformation other than to write about it, to rail about it. And again - still, always - it's the external forces and attitudes in our world which cause us distress. Down's syndrome in and of itself does not.

And it never truly has.

We are the lady in the magician's box. Empty box, full of nothing but us, bright and beautiful and shining and full of promise. And then the lid is closed and in comes a blade.

And another: Fear.
And another: Prejudice.
And another: Discomfort with difference.

And that magic man completes the illusion by pulling all the pieces apart and showing you that wot hey! The puzzle no longer fits, it is not linear. It is the outside forces which challenge the wholeness of the lady in the box. Leave the box alone and it's nothing more than 'move along, there's nothing to see here'.

All these blades get jammed in, severing us, twisting us around, preventing us from just living in peace and then as quickly as it happens, out they come - away with the misinformation and fear and prejudice and discomfort. And the lady steps out with a grin and a curtsy, thanking the illusionist for cutting her to shreds. The unaffected watchers of it all sit and applaud, and sip their gin. Again.

No thank you. I'm tired of that box too.

Society is as broken as I am. It's like a never ending barrage of bad news and this next one takes the (urinal) biscuit...

In the past week I've read a great deal about something called Changing Places toilets, following social media commentary about the lack of them in John Lewis and other huge department stores. These toilets are designed to enable people who cannot weight bear to use a toilet or for their carers to change their incontinence products on an adult sized bed, through use of a hoist. These facilities prevent having to lay someone down on a filthy toilet floor to change them. Now, I have seen people recoil in horror when they watch someone enter the toilet on an airplane wearing only socks instead of shoes. Imagine having to lay your loved one on a toilet floor every single time you go out?

Because there are only 1044 Changing Places toilets in all of the UK. 1044.

I have two toilets in my house.
There's two or three sets of them across the road at the doctors.
More at Tesco.
The library and all the caf├ęs down the road in town.
At the park, the firehouse, the church...

I can use any of those. Others cannot. And even though our immediate family doesn't personally require a Changing Places toilet, the fact that others do and they are essentially prisoners to 1044 points on the map is a massive, massive problem to me.

Following this outcry over the lack of facilities for human beings trying to just live their lives, people have still had the rocks to moan about campaigners 'expecting too much' and other such ilk like 'you can't cater for all disabilities'.

Is that right? Ok, imagine waking up one morning and not being able to leave your house unless you mapped out a route via that magic 1044 places in the country where you could use a toilet, or change your child. Imagine that when you have spent ten years asking for a simple solution in more places, a solution which takes up about as much room as a parking space, that a retailer who will freely spend £7 million on a single advertisement will tell you that a) they cost too much and b) there's no room in their stores.

Ikea found room. Try again.

Ten years asking and it's not yet standard for new builds. The law has standardized how high bloody plug sockets have to be from the floor, and there are requirements about how many toilets must be in a bulding to align with number of occupants and even how wide the door to a disabled toilet must be. But a Changing Places toilet is not a disabled toilet. So to hell with you if you need more than standard help - stay in your house or seek out that 1 in 1044. Thank you for calling! Have a nice day!

It's little wonder I threw a wobbly in my car. I am flabbergasted by all this. Every day it's another inequality somewhere. The rich get richer, the poor get poorer and 'the disabled' get shit on. Repeat, repeat, repeat. That wheel is kicking my ass.

To all those big box retailers making excuses - shame on you. To all those with the attitude of 'get over it'. No. Never. Until society changes we will keep working tirelessly to change it. Because this is not good enough. I salute heartily all the campaigners - disabled people and able bodied parents / carers alike - who are out there fighting day in and day out for their right or their children's right to dignity. They are fighting for their right to exist, when society would find it simpler to lock them away, to prevent them from participating in life.

And that is wrong on every level. Should a human being actually have to prove they have the right to exist? Check your troubles at the door and take that one on, friends. This is Rukai's long term challenge, not bloody Down's syndrome. Down's syndrome is society's excuse to treat my son like a piece of purposeless garbage.

Not on my watch, mate. I know better and you will learn, you best believe it.

This broken society looks past my son and others who have Ds as if they were a problem who shouldn't even exist at worst, or a plaything who can only give hugs and high fives, and keep them smiling at best. He is a boy with a future who will not be mown down by people moving too quickly around him. He will not be a child for the rest of his life (despite what someone said to me when he was born, which five years later still irritates me). He will be a man and if I have anything to say about it the world will be a far better place by the time he has grown up. I eagerly await the days when he will advocate for himself. And I guarantee that I will be the proudest wing man of all time.

Failing that, I will die trying. I would hope to die very old, disabled from time, still caring about all these things.

And so should you.


Twitter: @downinfrontpls

Saturday, 21 October 2017

Age. Less.

I'm sat here staring down the barrel of 46, vividly remembering the climb up this Hill of My Forties. What a slog. What trials and tribulations. What a climb. What a view. This is the top, over which I'm about to fall. Down towards those ages which start with five, only to rise again. Up and down and up and down we all go. Riding this seesaw they call life.

How we live!

Sometimes battered, sometimes shining.
Bruised and beaten one day, then singing to the sky of our glory the next.
How we live.
THIS is how we live.

Those well past 46 will say 'Pah! Child! Wait til you hear what I've lived!'
And I'd answer 'Tell me. Tell me all of it. This life, these days, so few and so full. So wide with possibility and so delicate to balance. Pull up a chair and tell me how you've done yours. And aren't we all so ridiculously lucky to be here!'

Most of the time I don't know what the hell I'm doing. And it all happens anyway. And I laugh my way through mistakes and triumphs, victories and defeats. The more I learn the less I need to know. The older I get, the more particular I become about who and what I let get in. Isn't it all magnificent?!

The beginnings and endings of my own experiences, then insert one husband and one child to make one family and those extra responsibilities piled on and we live in the tornado as a unit. We screech and roar and tumble around these days, sometimes fizzling out over the water and other times picking up houses and hurling them into the next county, screaming 'AIEEEEEEE!!!' And having each other's backs. And hearts. Always that, even when it's sometimes difficult to find, worse - to feel.

To all the days before and to come, I love you.
Even the hateful bits.
Even the drama.
Even the confusion and loss and unrealized expectations.
Even the lost dreams, because out of every darkness there comes light.

Brighter, always. But you do have to look for it.

Hard work, that.

Still, as I age, I only want to age less. I don't want any days to go having been unlived. Having been missed. We either succeed or we learn. The clock ticks through it all and we grab time in a bear hug and squeeze, eyes welling up sometimes as we watch it go.

Here atop Mount Forties, the slope below looks a bit nerve wracking. To see time before you and know the pace at which you will step forward to greet it, well that is something else altogether. In retrospect, all those previous decades didn't really tell me much aside from all that I didn't know.

One more week and my latest trip around the sun will end. It's been one hot ride.


Wednesday, 13 September 2017

The Consequence of Fear.

Maybe it's the hair. Surely that's got to have something to do with it, the fire burning straight out the top of my skull, red filament catching the wind. I have probably burned forever. Like magma, I simmer and pop and simmer again.

But something recently has burnt hotter. It's burnt me to the core and straight back out and luckily like that TV mother of dragons I can burn and live to tell about it. So here, I'll tell you about it.

How would it change you if you knew that swathes of people living and breathing and moving around on this great planet believed - beyond the shadow of a doubt, that your only child would be better off dead? Without knowing him, or you, or anything about your lives, better
off dead.

Chew on that: Better. Off. Dead. Not laughing and dancing and making friends and going to school and cuddling and...well, you get it.


The more of an activist I become, the more I discover what people really think of Down's syndrome, the less I want to absorb from those people, yet the more I seem to stumble upon them. A vicious catch 22 and it's been splintering my resolve. I stand, but only just. I have been entirely frozen and unable to write lately because I just cannot constantly think about this.

But I have to. I haven't the luxury of a choice. Because it's out there, and there's so little I can do about any of it so I do only what I am able.

When you hear in the news that an entire country (Iceland) prides itself on 'eliminating Down's syndrome' when all that they've done is to prevent anyone from being born with it via terminating pregnancies, well...that, folks, is kindling. (It is also Eugenics.) Light 'em up.

My son. My beautiful Rukai, better off dead? Really?

Better off dead because he does things more slowly than everyone else?

Better off dead because he has a greater propensity for acquiring some health problems - most of which a whopping motherlode of other people will acquire anyway?

Better off dead because he struggles to walk, to speak?

Better off dead? No. No he's not.

How would you feel? Would you burn? Would you blaze?

I do.

Rukai takes a longer time than most people to do most things, but he can and will do them, in his own time. Yet people constantly throw him into a box labeled 'incapable', and 'lost cause' and worst of all, 'better off dead'. Three copies of a chromosome and shazam. Better off dead. Clearly I must be imagining all the joy and the progress, all the happiness and the possibility, all the success and the little triumphs. I must be imagining all of it.

Oh you bet I burn.

I burn with the memory of what we were told to fear and so what we believed, and how we were treated, and how every memory of my only son's birth always begins with a billion layers of sorrow cloaked over us by others. In the fog of that sorrow, I cannot go back and easily remember the delight in looking at our new family member, holding him close, enjoying our beginning. That beginning, our enthusiasm, all of it, was ripped away from us by people who didn't have the first clue what Rukai would be capable of. Many linger still. And they always will. There is no escape.

My mind and heart are ablaze. I burn. I know this will not change.

We awaken every day ready to go to battle for him. That, my friends, is what is difficult about having a child with a disability. That we have to fight so hard for the world to just let him in. I'm so bloody tired. I'm so bloody disenchanted.

I'm so bloody.

Because all those who would look at him 'on paper' and immediately think 'better off dead'? They know nothing. They were wrong. He will succeed, in his own time. Do not underestimate him.

He is my son. Don't you dare.


Fast forward to late August 2017. Our mini bus parked up at the foot of the mighty Ben Nevis, tallest mountain in the UK. Stacks of people, mostly strangers to each other, piled out, loaded up with gear. Last minute pitstops behind the bushes and off we went. I was about to undertake the National Three Peaks Challenge: climb the three highest peaks in England, Scotland and Wales over 24 hours.

I'd been training for the hike since January, with a combination of gym work, running and long hill walks. Having completed the Yorkshire Three Peaks in April I was fit and strong and far more ready than the last attempt. And I started out with a bang, even surprising myself at the pace I was keeping with the group into which I'd been placed. As the terrain grew steeper, I slowed but kept my cool, took it down a notch and steady on. Lungs burning a bit but even pacing and uncomplicated terrain made it manageable. The leaders got away but I was still going at a good clip.

I was feeling great until we rounded a corner and now I'm looking up at a steeper, more complicated scramble up uneven steps. If you've climbed anything you know it's easier to stick to a slow incline vs steps so I was trying to pick out the lesser of the two evils. Along the right was a dirt track - perfect terrain, but with a drop straight down the side of the mountain. Just one look and my breathing went to hell - I couldn't move away from that edge quickly enough. I thought of my boy at home, the words of my husband 'if you don't think you can do it, just stop, do what you have to but be safe'. And that path didn't equal 'safe'. In retrospect, I think I may well have been hyperventilating. At that moment, I was fearful. The realisation that I was being rushed up the side of a mountain, this was dangerous, one false step and there's a motherless child at home, well that didn't bear thinking about. Still I kept moving.

As I picked my way up the steps, my breathing grew even more ragged. A sure-footed and far braver friend was climbing with me, and having been well in front came back to check to see how I was. With the warmth of the day I assumed my struggle was down to overheating so she got my bandanna wet and I felt a bit better but still ridiculously uneasy.

Onward I went, still many others passed me. I dug deep and somehow managed to bind up that fear, pack it away and get beyond it. Until a sudden voice in my ear jarred my concentration.

"This pace is ok," said he, "but if you drop any slower we my have to turn you around at the waterfall."

You're too slow. (Better off dead.)

And there was the turning point. That subconscious memory. That box. That box. Throw away that goddamn box. Piss off with your low expectations.

I said "ok" (like hell you will) put my head down (here we go again) and got moving. Underestimated, just like Yorkshire. I couldn't believe it was happening. Again.

In my head 'this is so dangerous, please don't fall' was at raging battle with 'you must hurry, they want to bloody stop you again. Go go go.'

I pushed myself to the absolute limit, til at least an hour later I spotted the group of people stood opposite the waterfall I had been chasing. Don't make that checkpoint, they take my summit. They'll stop me. The fear in my guts fell over the side of that mountain and I absolutely launched myself across those slippery stones.

"Have I made it?" Gasping. Red faced from exertion and anger.
"Oh yes, plenty of time."

You rotten, heartless sons of bitches.

(Better off dead.)
(Why do you bother? Go ride your sofa. You're too slow.)

As it happens, we made that summit. But the way down was full of those very same steps, and that fear came back with a vengeance. Don't slip, don't slip. Be careful. Yet there was no time to sustain it, we had to keep moving. I found myself taking risks I had no business taking, at one point actually barging past people who were just out there to enjoy the mountain. I hated myself at a few points for being so brash, so hurried, so agitated. A long sandy stretch and now we're actually jogging down. I looked around, this perfect sunny day, views up to forever and I'm running down a mountain. This was certainly no way to see Ben Nevis. At one point, I fell over. Cursing. Cursing, all the while. Stood up, brushed off, kept racing down, down.

My final clock time was about 5 hours 19 minutes. I'd climbed Ben Nevis in 5 hours and 19 minutes. Still that wasn't good enough, I was supposed to do it in 5. Was I? Ok then.

I wouldn't finish that challenge. I was slower than most everyone else.
I wouldn't finish that challenge. I was put in the box titled 'non-finisher'.
I wouldn't finish that challenge. I was underestimated.

To hear 'DNF' announced in your ear at the end of the day isn't pleasant. But it came with an asterisk: I did not finish because I wasn't allowed to do my own thing.

That fear of being timed out for the duration, of being excluded, of failing, all piled up together cost me my challenge. A hard landing down a step on a right knee already weakened by the tiniest of injuries weeks prior finished my hopes. 20 minutes up Scafell Pike they stopped me from continuing to the point I'd requested to stop myself. The detail now so far in the past, that anger now so pointless, I've thrown most of it into the wind, but I will say I heard over the radio this statement by a 'guide':

"Take those steps at a good pace, so if the three in the back fall behind, you can turn them around."

Set them up to fail.

(Better off dead. Go back home, you aren't fast enough.)

Light 'em up.


For at least two weeks after that 24 hour period, I burned with a fervor. And I couldn't pinpoint why the experience upset me to the very marrow. But it did. And now I know why. And now, so do you.

Here is a little boy. This little boy is better off with us. In life, and very much alive. Still I know that when he gets older people will be afraid of him - and they won't quite know why. I've seen pregnant women look at my son and wince. Just the same as I've seen people pity clapping me over finish lines, telling me to keep going, you'll get there! And when I do, the bunting is down, the band has packed up and everyone has gone home. And they're always out of bananas. But Rukai and I have something very much in common, and that thing is what drives my every breath: there will always remain a line that we both seek, a point 'out there' to which we run and crawl if we have to, a line that is always ridiculously hard to capture. But that line will always be crossed one way or another. In good time.

Because you see, as it happens, life is not actually about speed.

Life is about conquering those fears, challenging that status quo, attempting things that you are not good at just because you're not good at them. It's about smashing challenges you are terrified of and trying again when you need more work than most to succeed...whether it's climbing a mountain, finishing a marathon, or giving birth to a child whom society will view as 'broken'.

The true consequence of Fear is unfinished business. It is separation. Impatience. Fury. Angst. Sorrow. It is broken societies with impossible expectations and the inability to care for its most vulnerable members. It is eliminating people from existing because you don't know anyone else like them, and that lack of knowledge scares you deeply. We fear that which we do not understand.

The consequence of Fear is a slow slog up a dangerous path. Pointing our feet towards the top of a mountain that some people would never have us reach. But one day we WILL summit. We will fly our flags and raise our arms in victory. We will look down at those who follow behind and together we will lift them up that hill.

Until then we will keep climbing, unafraid.

Light 'em up.

Friday, 2 June 2017

For I am not finished adoring you.

Oh morning, how I do sometimes despise you. This one possibly more cathartic than most, this one with a door creaking open, quietly, quietly now, don't wake him up. He's tired. From all that fun and play and half term holiday, tired.

From all that "I couldn't possibly go to sleep now, we're in a hotel and my mummy's just beside me" tired.

From all that "What is this ten pin bowling lark, and let's ride roller coasters and half term shenanigans and sightseeing on great ships with stories of great warriors" tired.

(There had been mama, hoping against hope that her great warrior was paying close and careful attention. How to shine. How to command. How to lead. How to triumph.)

Ah, but he is no follower! We follow. We all follow. Go son.


Now today there he lay, pre-sunrise, a similar golden ball of light in waiting, this perfectly imperfect boy (like us all) oblivious to the fact his mother was silent and enamored and treasuring him from the doorway. Oblivious to the fact that she was thinking 'my God, when did he fill that bed? Why is there no space around him?' A glance to the moses basket in the corner, now stuffed with teddies when years prior it had been full of baby and baby's grunting and random cries, "come get me, cuddle me, I need you".

I need you.

That very tiny moses basket now only near his feet. Holding his baby doll when it once held his mama's baby. When did you get so big? Sure, you are larger than life, but when did you get so big?

I blow a kiss and he stirs. As if he feels it land and stroke his cheek, it pushes him to turn over. His hand floats up to rub that cheek, now his forehead, now to scratch that toddler pot belly which just won't go.

Don't go.

You stay. Let's hang out here for a little short while, for I am not finished adoring you. I will never finish adoring you.

Don't go.
(Go. Fly! Go!)
Don't go.

I close the door and go to dress and brush teeth and tie shoes and ready myself for my day. It is now that I'd typically leave for work but that beautiful little boy won't be back in that bed til Saturday night and I just can't go. Not yet. I turn back for one more look. I can't close the door, can't pull away. To hear his breathing is like a symphony, the song of life that brings me life. This boy. This beautiful boy. My pride in having actually made him. What a miracle.

My boy.

This hand on the door holds me still, watching one boy, my boy, life's boy, our boy, stir and snore and scratch and roll and be. Oh the blessing of this child! The love! There has never been such love. I am sure of it. Nevernevernever.


(And when did you get so big?)

I have been suffering lately behind my eyes, that darkness has seeped into my guts, embalmed my soul, clouded my spirit, rained on my hope. I have been unable to decipher why, but yesterday maybe at long last I knew. I realized that my beloved sweet baby Rukai, my heart, my world, had gone. There came little boy Rukai, with a new attitude, often crabby, feisty, frustrated, annoyed. Where did my sweet boy go?

Where? Out. He went out.

Into the world is where he went. And not that this isn't a good thing, but when he went out I seem to have forgotten to give him the map to find his way home. I forgot to watch him go and I forgot to pack him a lunch and I forgot to wait for him at the door. Because I never thought he'd be going so soon. We had planned to wait another year. We weren't allowed that year.

And so I wasn't entirely paying attention to the fact that there was a huge part of this brave new world which required me. Which will always require me. I forgot how much he needed me, but perhaps how much more I need him. I forgot. And here he's been reminding me and here I've been frustrated and stressed and confused by his behavior because, quite simply: I've not been paying enough attention. The tug marks on my trouser leg, apparent. Chocolate stained fingerprints. Sticky with despair. Mummy? Mummy? Please mummy. Come here mummy. Please.


I need you. Don't go.
We used to always be together. Don't go.
Where have you gone?
Don't go.

And there my world has felt empty but my world has really just been right before me, tugging at my sleeve, pressing my cheek to turn my gaze in his direction. Bringing me the remote and signing 'again mama'. Clasping my hand beneath his arm, walking me to the sofa and signing that I should sit. Sit to watch him dance. To cheer him on. To smile. To laugh. To love.

To not forget.
To mother.

As if life isn't complicated enough here it has tried to cleave us apart.
But I know the glue.
It is called Love. Patience. Respect. Pride. Anticipation. Joy. Light. Tomorrow.

The glue is called Rukai. As it was and as it always will be.
The glue is called Us. As we are and always will be.


Together, we go.

Tuesday, 9 May 2017

Boomerang: Life, challenged.
How do I write this? I've been trying to write this for weeks but it won't be written. How do you describe a void? How do you illuminate a mask? The perfect mirror of comedy and tragedy? Brothers. Twins. Yin, Yang. Life, challenged.

I will make it start by saying that right now, I am broken.
I will make it start by saying that in November 1999 I threw a boomerang which has since returned.
I will make it start by saying that I caught the bastard.

This boomerang is coated with a greasy, oily thing called 'stigma'. This stigma is the thing that's making it hard for me to write this, because what I'm talking about is officially classified as 'mental illness' but because I hate labels we will just call it 'feeling despondent and miserable for so long I'm going for help. Again.' Tomorrow. If you feel that is a weakness, scroll on. You have no place in my world. Otherwise, you get me. Here we go.

It's currently some form of mental health awareness week, which in and of itself is a bit of a ridiculousness, as we should always be aware of our mental health and in particular when it's gone down the shitter. And I know this old fool called Depression because she and I used to hang out and we even had someone formally called 'Doctor' to whom we went for some offloading and some medication for many months, many moons ago. Eighteen years, in fact. Back when I fired Depression off on that boomerang, thinking it was a slingshot but I was wrong and here I am holding it in my hand again and it burns like blistering fuck. One minute I'm laughing at how unbelievable it is that I'm back in this horrendous place, the next bawling, the next shouting at someone, everyone, anyone. And I pity myself.

And I hate pity. But God, who should feel this low? This high? This messed up? This lost?

And the worst thing about it all is how deeply I've been feeling that this is something I must not reveal. Because the cause of my depression centers around caring for my beautiful son. I'm inside out lately at the great mountain we climb as a family every single day. At the struggles he faces, at what extra we must add to our day to support him to make a small hint of progress. At the sheer frustration he expresses at that pace. Don't you DARE tell me he doesn't understand. He does a plenty, and he is livid when he can't do something he wants to do. Every step is over such a chasm. And what in God's name is going to happen to him when we are gone. My heart splinters every day. It cannot break anymore, because there won't be anything left, and what would I be to him then?

But I AM revealing it because it is a simple fact that just because you struggle with a situation does not mean that you wish it away.

Read that again, I'll wait.

My son is five and does not speak.
He cannot always tell me what he wants, only what he does not want.
I try so hard to decipher every sign, every shout, every attempt at language.

I try. He gets frustrated and shouts. So do I.

It's all such an oversimplification of everything that's going on right now, but the bottom line is, I need help. I have done everything possible I can do to manage the stress but it's not working. I need help.

But on no plane of existence do I wish he wasn't here.
In no way do I wish he were not mine.

I adore my son as much as any other mother adores hers.

And that is why I AM seeking help. He deserves better.

I see jokes about how much toddlers talk. They destroy me. My world for an 'I love you mama.' He mirrors it with sign. He hugs and cuddles. But words! Words! I had no idea how much I need words til I heard none. And no one out in 'the world' is doing enough to make them come, barring his TA. Speech therapy has abandoned us for administrative overhaul (as if there were anything there from the off). I want to fix it all but I don't know what to do. I want to control it all but it is all out of control. He progresses a little every day but he is not allowed 'a little every day' in life. Life has taken him off me and me away from him.

Life. Life is a four letter word. The very king of them all.

Life will pass him by and I can only sit and watch him, furious and pissed off and determined, try to catch up. He will bust his ass because he is Rukai. He is mini-me. I can do nothing more to help him reach his potential. And that potential is huge.

But I cry because it kills me that he has to struggle for every bloody thing he does. I die a little every day. I want hope. I see so much hope tiptoe in the frame but it doesn't break bread with me or hang about in my lounge and then I lose it again. And then this darkness owns me and I can run til the cows come home but it's never enough. The boomerang lands in my palm again. And I fling it. And catch it.

And fling it.
And catch it.

This road is so slow. If you really know me you know I live for slow but this - THIS is no road, it is quicksand. I have struggled in silence for five years because the very same people to whom I would turn for help are those who would prefer that he did not exist at all. And I won't give over control of any of this to them. Push. Pull. Tug of war. Tug of love.


Rukai doesn't belong to you, he belongs to Rukai.

A couple days after Rukai was born, I found myself wailing in the shower. Not because he has Down syndrome, but because I loved him from seeing those two words on a stick '2 weeks'; I loved him totally from his absolute beginning. And there looming over us, with all their dictatorial instruction and off the cuff nonchalance were those people who would try to own him and tell me what he would need. They who would tick boxes and make note of how we 'appeared to have bonded with our son.'

In spite of WHAT? Of course we bonded with him, he is our son. Our blood. Our firstborn boy.

Yet I am still broken.
He needs me whole.
I'm going for help.

There is no shame in asking for help. So I ask.

So I ask.

And there I throw that boomerang again.


EDIT:  If you have read this and feel anything, please say something. I don't write to make people think, I write to foster change and change starts with conversation. Don't be afraid to talk about this. I'm not.

Saturday, 18 March 2017

I cannot do this alone. | World Down Syndrome Day 2017

The wheel has turned round for a fifth time since Rukai joined humanity and here we are on the cusp of another World Down Syndrome Day - this coming Tuesday, March 21st. 'Yeah, rah rah, so what?' says you. 'What on earth can you tell me that you already haven't?'

AHA!! There's the rub...

I can't tell you a thing.

I can't tell you a thing, because just as I predicted five years ago, Rukai is pretty much exactly like any other kid, and there's only so much clinical jargon I can hurl about when it comes to the condition which is supposed to make him a gargantuan anomaly.

But (and you know where this is going) he's still not. He's a kid. A five year old boy called Rukai. He is no monster. He is no one to fear, nor to pity, nor to discard.

A kid with possibility. A future. Feelings, and emotions and a distinct, raging lack of opportunity lain before him because he has a learning disability.

That is what is to be pitied.

But I digress...

Of Rukai, I can't tell you a thing, other than to ramble on about what he has learned, how he's developed, how much more deeply he's embedded himself into my heart - a heart which in size is quite pathetic in comparison to his own. That little, huge heart which begins at 'delight' and ends at 'joy'. That heart which loves first, questions and answers all in one breath and has only one demand which is to light up. To elevate. To soar.

Rukai does not do self pity.
Rukai does not do jealousy.
Rukai does not do hatred, or envy, or malice.

He sure does crabby and stubborn and annoyed, but the real dark stuff? No. There is only light here.

And this is a problem, how?

Today I saw a clip of some televised interview where the subtitle still referred to my child as a subspecies of humanity ('Down's baby') - those poor dejected uneducated little editors or producers or whomever's job it is to categorize human beings throwing that phrase out as they'd throw my boy out, without any inkling of what they're missing. The presenters' discomfort palpable, no idea where to look or what to say other than 'he's so cute!' while desperately clock-watching for the ad break to kick in.


But I know better.
So many of us know better.
And as God is my witness, I hope that with all my nattering for half a decade, with all my angst and anger and fear and upset and triumph and compromise and adjustment, with all those things...

I hope YOU know better, too.

Unless you want a full run-down on every milestone Rukai's hit,
Or every holiday we've taken,
Every party we've attended,
Every school day we've enjoyed,
Every dance class we've loved,
Every friend we've made,

I can't tell you a thing.

Because what I'd say would be so typical, so ordinary, so NORMAL, that it would bore you to tears. But out there in society, there is such an undertow about this condition, the misinformation churning, threatening, sucking people under the mire of falsehoods, of confusion, of gut-wrenching fear.

Lies, lies and damned lies.

Yet here I sit, pounding away on keys that have so many stories hidden within them. I know the past year has been difficult for the Ds community, in terms of political tides, so-called medical 'advances', those things which, prior to having Rukai, I would have welcomed with open arms. A non invasive pregnancy test which would have detected his Down's syndrome so early I'd have had LOADS of time to make a horrendous choice.

Just over five years ago I may have taken it. Because I only heard what Medicine was saying: 'Problem.'

I only heard what Society was saying: 'Disaster.'

I only heard what Fear was saying: 'You can't handle it.'

And today, five years on, I answer them all:

Stronger than you think.

I won't kid you. Life is HARD.
But I won't kid you. Before Rukai, life was harder.
Because before Rukai I didn't have unconditional love.
I didn't have someone who was like a sponge, eager to learn and sharp as a tack.
Although he takes longer to learn, he does learn. But more importantly, I learn.

More still, you learn.

So now that you've heard me for that half decade,
Now that I've written those words which stick in your craw,
Which jab you like a sharpened elbow in a shopping mall,
Which poke you in the eye like a wayward airborne cotton seed,

Take them.

Take them in,
Pack them up,
Wrap them in a tight bow,

And give them away.

Go ahead and teach someone else. Tell them. Help them see. Help them understand.

Down's syndrome is not a disaster. It is a difference.
People with Down's syndrome are people. They are not a malfunction. They are not a flaw. They are not a problem.

They are not 'They'.

Rukai is my son.
Rukai is my heart.
Rukai is my world.
Rukai is a person. He is not 'Down's syndrome'.

Since the day he was born I made a promise to him, in that cold hospital room, listening to Adele singing about a fire starting in her heart, mine was blazing too.

'I've got your back,' I whispered. 'Welcome to the world, little man.'

If you're reading this,
If you're feeling this,
If you care about this,

Take it and TEACH. Welcome him to the world once and for all.

I cannot do this alone.


This post also appeared here on The Mighty and here on The Huffington Post.

Sunday, 22 January 2017

Let it snow.

Funny - aside from the newly sworn in president and his press secretary creating imaginary crowd sizes and moaning to the CIA, I didn't see anyone crying yesterday.

I didn't see anyone whimpering, saying woe is me, it's so UNFAIR! SAD!

In fact, where I was stood during the Women's March was so crowded that I saw little else than a sea of humanity in front of me, behind me, on all sides. Amidst those buildings and monuments which stand proudly as the central focal points of my first country's great capitol city, surrounded by men, women, children, grannies and grandpas of all colors and social standing, from countries around the world and cities around the country, speaking loudly or forever holding their peace, there we stood, there we rallied. There we marched.

We special snowflakes, not crying. Determined.

Not crying. Focused.
Not crying. Optimistic.

Let it snow.

Without animosity towards one another.
With renewed hope for the work that lies ahead.
With fierce determination to stand up for what we believe in.

Let it snow.

I traveled a hell of a long way to be there but was immensely pipped by one of the magnificent women I met on leaving the hotel. As I bounded out the hotel door armed with all my supplies, a giant poster, and deep belief in the importance of what I was about to do, I waved a fleeting good morning to three women in those ubiquitous pink pussy hats who looked as if they were waiting on a taxi. "Have a great day today!" Everyone smiled, and I kept going.

The doors closed behind me and I got about four paces, then thought what the hell am I doing? I turned heel and went back in. "If you're waiting on transportation to the march, I've got a rental car outside with just me in it - want a lift?" Next thing you know we're all in the car chatting away and I learn one of my new friends has come in from Japan to join her mom and sister, from Oregon, in the march. Yes, I've found my tribe for the day. And what a day.

We parked across the river and made our way on foot. The approach to the rally point took us past the Iwo Jima Memorial, Arlington National Cemetery, the Lincoln Memorial, the Washington Monument. Past purpose. Past history. The thought "what the hell am I doing in Washington?" never crossed my mind. We met people on the way, exchanged stories, home towns, reasons for being there. Mine usually ended with a smile followed by "I couldn't stay home and do nothing."

Let it snow.

As the crowd grew and the cell phone service fell into the rabbit hole, it became apparent that this was no ordinary rally. On our initial approach we'd heard Gloria Steinem, later Michael Moore, and later particular thrills for me were Tammy Duckworth and the immense Van Jones. But Tamika Mallory's poignant and jarring "welcome to our world" along with the exquisite six year old Sophie Cruz...oh we heard you. Loud and clear.

Then they announced that we'd started marching and we're all looking at one another stood in place as one more speaker after another took the mic, no marching to be seen aside from us dancing from foot to foot. My back was starting to stiffen up from all the milling around so I did a bit of a do si do with the woman next to me to the beat of a drum somewhere near us as the crowd starts chanting "March! March!" and we shuffled a couple steps then stopped again.

Must have repeated this about three or four times before we finally got moving and paused at one of the giant screens when the impromptu Madonna curse fest and concert began. As we discussed how horrendous it would be for the media coverage of this amazing event to focus on her, we turned to catch up with the tail end of the crowd that had started moving, some 50 meters from the end of the road. There may have still been fifty to a hundred thousand people still to follow. Chanting everything from "Tell me what Democracy looks like? This is what democracy looks like!" to "Keep your tiny hands out of my underpants!" There were people climbing trees to get a better view of the crowd, folks passing up their cameras to capture that moment on film. We are HERE. We are EVERYWHERE. Hate loses. Love wins.

Let it snow.

As we rounded the corner I caught glimpse of just how enormous the crowd was and broke out in goosebumps from head to toe. By that point we'd been on foot for about five hours. Spotting a gap in the gates, we made our way towards the Washington Monument. Crossing the grass we turned to look, once again absolutely flabbergasted at the enormity of the crowds filling up the roads and pathways in every direction. We took some pictures then headed up the path.

A crowd had gathered around the Washington Monument, so I peeked through the wall of legs up on the elevated grassy area. There lain out was a giant canvas replica of the Constitution adorned with signature after signature. It reminded me of the Cubs wall in Chicago. I asked a boy to help hoist me up on the bank, found a Sharpie and made it known that the Sindas had come. Over an ocean to protect what future awaits my very special son, I had come.

Let it snow.

It's now the day after the night before. Flight leaving in about ten hours, I've come and done what I had to do and I'm leaving with a full heart and zero regrets. I needed to come here and be surrounded by that wall of people who feel equally horrified by what's happening in this country and who will now get to work on doing something about it.

As for me, I will most certainly start making the necessary phone calls when called upon to better support those back home who are fighting for us. As I'm headed back over the ocean, I'll do what I do best - keep talking. My words are my best sword and my son is the 'king' for whom I wield them. My votes are my beliefs and I will continue to cast them in both home countries for politicians who don't gloat in victory, who don't discount people's real fears, who don't de-value and marginalize entire demographics. People who work to make the world a kinder place. A fairer place. An equitable place.

These are certainly dark days for America, and so for the rest of the world with such an alarming America. But yesterday, a blizzard fell across the planet. Long may the winds of righteousness blow.

Let it snow.

Friday, 20 January 2017

Winter is coming.

I'm sat here in a relatively tattered hotel room drinking red wine and unsubscribing from a slew of social media accounts belonging to the current President of the United States. This point-and-click session is oddly cleansing and comforting, knowing there is nothing to come from the next one that I'll want to see on a regular basis - you see, I have one child at home already. He, too, can be petulant and think everything he wants but doesn't get is just NOT FAIR!

But mine's 4. Equally small hands, tho.

And mine's got Down's syndrome. Mine will probably never be President, but with his perfect pure soul, his innate empathy and complete lack of hate and self-absorption, he sure as hell should be. He is half American after all. He works hard, he's clever, and people who aren't hostile to one another truly adore him. He'd have my vote, but then again, I'm entirely biased.

Hours ago, I left work after Skyping my husband and that beautiful son, signing "good night, I love you" through a computer screen when otherwise I'd have been doing this in person, next to his bedroom door, arms still warm from the last blissful cuddle of the day. I haven't been apart from my sweet Rukai for more than a single night since he was a year old, when I went back home to the place where I was born, home to do something important. There hasn't been anything that important until now.

But tomorrow I'm going home to march. Not during the inauguration, oh no, avoiding that like the plague. But for Saturday's Women's March on Washington, you can count me IN.

Because a country's leader should not be talking about grabbing women by the pussy and trying to pass it off as 'locker room banter'.

Because a country's leader should not be mocking disabled people and gaslighting detractors when that behavior is challenged.

Because the leader of a country made of immigrants should not be building walls and alienating entire religions to keep immigrants out.

Because hatred and racism and misogyny are not American values.

Because confrontation is not what brings people together.

Because referring to oneself in the third person is not NORMAL. Because none of this is. And I will not normalize it.

Not my President.
Not my America.
Not my values.
So I'm going home to march. I'm flying from London to Washington, from one home's capitol to the other, to stand shoulder to shoulder with my fellow patriots. To remind that new government that the world IS watching.

The day I found out about the Women's March from a friend's Facebook post, I immediately turned to my husband and said 'I'm going.' He didn't even flinch. Because he knows. And were he the marching type he'd be there too.

As for those supporters of his calling us snowflakes? Well it's snowing alright. Plenty of beautifully special snowflakes on the move now, crystalline originality, now gathering, gathering, falling down the roads and lanes across America. Across the planet. Taking to the skies and the sidewalks, past those monuments to real leaders named Washington, Lincoln. Working their way to a great gathering. Stirring life's passions and focus and purpose into one HELL of a nasty blizzard.

Here, too, Winter is coming.

Get ready for the storm.