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.

Wednesday, 14 December 2016

It's a long way on a donkey.

In much the same way as frost sticks to the windshield of your car in the winter, negativity finds a way to latch on to you whether you like it or not if you spend an inordinate amount of time surrounded by it. In the first three years of Rukai's life - hell, preceding the first three, go back to 'in utero' - down to all the medical guesswork and gleeful tickboxing we were dealing with, there was little which didn't fill my heart with sorrow, didn't strangle my thoughts with worry. Like an overgrown ivy was that fear, that negativity, and as such it led to poor health for us as his parents. A poor mental state, even poorer vision and all too often a terrific lack of perspective.

It's awfully hard to use peripheral vision from within a chasm.

Whereas some parts of society would have you believe that it is our child, born with Down's syndrome, who was doing the suffering across those years, it was actually us, as his parents, in anguish - not from Rukai, he was a joy - but from having to fend off society and bad medicine perpetually marginalizing our beloved son. From all those conversations centered on what 'he can't' do, where we'd consistently be responding 'the hell he can't, shut up and watch him.'

It's exhausting to have to fight all the time. And horrifying that at some point you actually tip over and get used to the challenge. So like a broken record you find a 'party line' that explains why statistics don't define a life. Pretty sure we landed on something like:

A story not yet written cannot be told - particularly one which you do not own.

It was all so bleak.
We were all so fearful.
And I was entirely too angry.

But that was then and this is now.

Much the same as a blast of garden hose clears out the muddle between paving slabs, in the winter of 2014 we enrolled Rukai into a nursery aptly named Sunshine. And these people could not have been more polar opposite to those eternally dark minded interfering medical bods. Not only did they listen to me, but they listened to Rukai. They watched what he could do, then they said 'ok, what next? How do we go onward and upward from here?' And so too did Rukai, onward, upward. No labels. No negativity, just progress.

We went from medicine to education.
From darkness to light.
From fear to joy.
From negative to positive.

And there, that simply, you have it:

Medicine searches for problems and seeks to correct a person's disability.
Education searches for potential and seeks to unlock a person's possibility.

I know where I want to spend my time.

And that Sunshine? Well, it was the very bridge from the one to the other. And just like that, I am not so angry now. Because now, we are HERE. Always moving. Relentless forward progress. Slowly but surely we arrived.

Maybe I'm too tired to be so angry. World-weary it was recently said. Physically knackered. Mentally used up. I'm looking at the calendar ticking off the final days in this year of amazing physical challenges that included hundreds of training miles run and two marathons. I've no idea where the mental tenacity required to get through one of those races came from, let alone two.

Then again, maybe I do...

When Rukai started primary school in September I knew things would be good in 'big school' but I had no idea just how much. A head teacher with practical experience of Down's syndrome. A ridiculously inclusive school with the most amazing staff. And full time one to one support has meant Rukai has enough guidance to help him engage with the other children while progressing in his learning at his own pace. In that his support knows Makaton is an amazing blessing. In that I know she 'gets' him from a very base level is making me cry as I type this. I could not have possibly asked for more.

Yet, still I got more.

Yesterday and today, I was able to watch him in his first school Nativity play, the incredibly sweet 'Born in a Barn'. He stood (and sat and stood and sat) with all his peers, participating in his currently unspoken way, yet bursting with communication via Makaton signing. And he signs like a BOSS.

I wept to see him doing so much more than I was led to believe he would be able, from way back in that frozen hospital room as I tightened my arms around him to protect him from those equally cold, white-coated bringers of misery stood before us. I expect to see him do amazing things now, but that doesn't make it less moving; probably quite the opposite. Every milestone is Everest.

That is my son up there.

My son. My sunshine. My Rukai, in his school play. Included completely.

And the play ended. And they all stood. And in unison, they began to sing We Wish You A Merry Christmas. But they weren't just singing...they were signing. They were all signing. Every last one.

By then, this hard, old, world-weary mom was weeping herself dry.

You see, I also cry when I'm angry. But I'm not so angry anymore.

It's a long way on a donkey.

_____

"It’s a long way on a donkey,
It’s a long way to go,
It’s a long way on a donkey,
It’s a long and winding road."

- From 'Born in a Barn'

Tuesday, 22 November 2016

Die hard.

I have walked in the rain.

Water as drizzle, as mist, as spittle. It merely taps on my skin, only damp, nothing menacing or pressurized, nothing harsh or vigorous. Drip. Drip. Drip.

Hello.

I have run in the rain. Water as torrent. The back end of hurricane, having raced over ocean and mountain range, lashing and whipping its ferocity, rendering eyeglasses so wet they needed removing. Half blinded, soaked, ravaged. I ran.

But the sun...

The sun - oh, it has boiled and roasted and baked and burnt me. Made me faint. Made me freckle. Made me blister. It set. That sun. Our sun.

Our Son.

The Son, he has shone. He has glistened and warmed and enlightened and risen and fallen. That Son. Ours. Everyone's. Life's.

Shining. Shining. Shining.

The earth. She. (Why She?) She has absorbed both water and fire. The planet has embraced and fought off the onslaught, that rush of runoff down gullies and straight back to the sea. That sea of Everyone. Of Everything. That sea of yesterday and tomorrow. The earth. Our earth, from which grows both the flowers and the weeds. Those blossoms feeding the bees which make all of our survival possible. Those weeds which choke.

Those weeds which choke.

The earth. This earth. Our grounding and place and space in time. Mother earth.

She.

Survival of the fittest means, what? Exactly, what?
What is 'fit'?
Is it physical? Mental? Spiritual? Emotional? All of these?

Four and a half decades have taught me that each is heaviest in value to some.
To the athlete, the physical - speed, grace, lift, rise, success. Winning at all cost. Glory.

Glory.

To the scholar, the knowledge - the books read, the history, the supposition of what all the tomorrows mean. The Knowledge.

Glory.

To the priest - the love, the compassion, the stories and learnings. The purity of soul, to repent for sins of the fathers. Of the mothers. Of the ancestors. All of them.

And in penitence, still greater Glory.

To the empath, that understanding. That yearning to wear those shoes. That need to feel. To be. To LIVE.

The greatest Glory of them all.

And we, Humanity, we are all of these. Yet one does not know the other. May not care to know the other.

We, Humanity, are so flawed. So splintered.
We, Humanity, are losing. Because we are against ourselves. And we are against ourselves because we remain too far within ourselves. Too engrossed in 'me'. When you look back at what is the greatest motivation, it most always starts from within.

We are born soft, but we die hard.

Like the pick of an ice sculptor, chipping off shards of the solid to make something which has only risen from her own imagination, we chip away at life until we shape what that meaning is for us and us alone.

And in the end, it really is us. Alone.

I have walked in the rain.
I have run in the rain.
Some days I make the rain.

Some days I am the rain.

The irony of this life is not lost on me. A bullied kid, moved country, became an immigrant, married to an immigrant in that country with whom I created an amazing little boy. This heart on legs, this warrior, this firestarter, this raging flood of possibility. This boy. Our boy. Society's 'problem'.

Our world.

Is it any wonder that we will die hard?

To people everywhere, there are flaws in us all.
Immigrants.
Ginger.
Asian.
Disabled.
But we are life. We are perfectly imperfect.

Our own trinity. Our own story. Our own rain, and sun, and earth, and moon, and stars, and planets and universe and oceans, and life, and history, and future.

"I am a part of all that I have met," said Tennyson.

We are all one, yet so separate.
Soft.
Hard.
Somewhere in between. Ebb and flow. Rain and fire and earth.

Life still rolls, and with it - so too do we.

Friday, 11 November 2016

Liberté, égalité, fraternité my ass.

The world has gone absolutely mad this week. This beautiful video aimed at taking away some of the worry that future parents of kids with Ds may have, has been banned from broadcast television in France. Seems two women who terminated their pregnancies couldn't face up to their choices and have used their guilt in an attempt to quash our ability to express our joy.

And now I'm furious.

There is little that is more offensive to me as Rukai's mother than hearing about people who abort their pregnancies going on to weep about 'losing their baby to Down's'. Because the fact is, unless there was a catastrophic birth defect involved, they did not lose their baby to anything other than fear. To anything other than their inability to cope with the idea of having a disabled child. To be entirely impotent in facing their truth. I find these types of people so weak. So shallow. And this has all just gone well beyond the pale.

Choice is choice and I completely agree we should be allowed to make them. In no way do I judge anyone for having made such a choice. But if you cannot own the choices you make, if you cannot admit that you just didn't want to have a disabled child, you cannot admit that you just can't face putting in the bit of extra time and care and you cannot admit that you just don't want to have to change your path to focus that little bit more on any other human being than on yourself, well then frankly you are a pathetic coward. Own. Your. Bloody. Choice. Done mincing my words. Done. I don't care a dot if you've made that choice. It is yours.

Own it.

I'm so tired of playing nice to avoid upsetting other people. I'm upset too. My feelings count too.

Just as much as theirs do.

He's not yet five and I am already sick to the back teeth of constantly fighting society for Rukai's right to exist. I'm fed up with constantly having to live on the defensive. If there is anything tragic about having a disabled child, it is precisely that. The rest is not the disaster most of the rhetoric flying around would lead you to believe. My son is difficult sometimes, true. But he is also a four year old boy. What peer would be a constant angel? None. Zilch. Rhetoric is dangerous, as we've seen so often in the news this year. I've said it before and I'll say it again. Don't believe everything you read.

What people like this pitifully biased council do not realize is that this type of thing only energizes people like me more. We will not quit. We will not back down. We will not go quiet. Try us. Try us. Try us.

In the end, it is you who will lose.

Because despite your every effort to make us cry into our pillows at night instead we smile and play and laugh and dance our way through our day. We argue and shout and discipline our way through our day. We fight and champion and shape and nurture our way through our day. We teach and we challenge and we live without regrets through our day. All day. Every day. How dare anyone try to put a muzzle on our joy? We will talk. We will bark. We will howl at the bloody moon.

You will not shut us up.

The biggest sorrow in my life is actually that there is a huge number of people on this planet who don't have the first clue just how 'typical' - or using their favorite word, 'normal' - this life can actually be. The prospect of it once scared the everloving shit out of me. But the only thing that scares me now is what close-mindedness we are up against, all day. Every day. And what that will mean for Rukai when he grows up. It's not his ability I'm worried about. It's society's.

Liberté, égalité, fraternité my ass.

But fear has yet to stop me from moving forward. Onward we march. Upward we go.

Here's the clip.
Here's an explanation of the decision.

*Opinions in this post are entirely my own and not representative of any other individuals or bodies.


Thursday, 11 August 2016

More than a catch phrase: why real inclusion matters.

"Can I help you with something?" 

I wouldn't have said anything, but I spotted your friend pulling a face before you whipped around to stare at my son for the second time. The tone of my voice was far more reasoned than if you had not been a child. Had you not been a child you may have heard the anger in my heart. But you were only about 12, if that. It really was all I could do to smile, but I didn't want to frighten you. I wanted to educate you.

Pretty sure I failed.

You nervously shook your head, your eyes wide open, realizing you'd been caught out.

"Is there a reason why you're staring?" says I. Same tone. Same smile.

Same response. Then you turned back around and finished your lunch, the table quieter around you now. No more faces, no more words, no questions, no head shaking, nothing. Maybe it surprised you that another demographic who's perennially jeered was standing up to you. This redheaded mom and her boy with Down's syndrome. No, honey. We don't just take it, we address it. So sorry to burst your bully bubble.

I looked down at Rukai. My sweet, innocent little boy, just having something to eat on a sunny summer afternoon. And you had to go and bring in those clouds. I look at him and see only a child; one who is loved by everyone who has the fortune to spend any time with him. A child with quirks, with needs, with emotions (yes, some being anger and frustration). With hopes and disappointments just like any other kid. But you, and so many others like you choose only to see (worse, to define him with) a genetic condition which only makes him learn a bit slower.

This happened a few weeks ago but is still very much on my mind today. I wonder where you go to school. I wonder who your classmates are. Do you have any kids with special needs in your class? In your school? Anywhere you've ever been? Your reaction tells me not many, if at all. What a shame. What a loss. What a missed opportunity.

And here you've been on earth a fair few years. Here you should have had many a chance - like Rukai's preschool mates have had - to interact with a child who learns differently, who moves differently, who acts differently. To engage with him and only know him as Rukai. Because he is Rukai. He is not someone for people to toy with. He is a human being and he has a name. He is Rukai.

I wish you would have replied when I asked you those questions, I really do. I wish you would have actually wanted to know, to understand. But your fear and your reluctance told me otherwise and really made me sad. Because that fear and reluctance would not have existed had you not been mocking him. I know this because there have been so many other kids your age who've approached him, waved and smiled, fist bumped, high-fived, you name it. Those kids get it. Because those kids are not being ripped off by society - those kids are lucky to have inclusion as standard, in their schools, in their clubs, in their neighborhoods, maybe even in their families. They know kids like Rukai because they have been allowed to know kids like Rukai.

And although many in this very strange and skewed world would look at us and feel pity - they of the downward-angled smiles and furrowed brows which say more than their words could possibly define - it is you for whom I feel pity. You are being denied by society the most beautiful of freedoms which is to live and let live. Get to know one another. Share ideas. Share joy. Share love. Grow.

You whipped your head around to stare and as I was reacting I thought of all those who haven't. The restaurant server who brought Rukai an early bowl of chips before a late meal because she didn't want him to be hungry much longer. The retired doctor who stopped for a high five as we were checking out of a hotel, then offered to return our luggage cart so we could be on our way quicker. The little girl your age who stopped to play with him in the sand pit, returning later to introduce him to her friends. The dozens of people in dozens of other restaurants on dozens of other days saying hello, smiling, enjoying his very existence.

I chose to remember them.

I once thought reactions like yours would be in the majority. Ah, but they aren't. And this gives me hope that maybe - just maybe - all the advocacy out in the world is starting to chip away. It's like digging the Channel Tunnel with a teaspoon but we keep on digging. With bloodied knuckles and throats ragged from the constant dust, we keep on digging.

I am so sorry you haven't been given what those other folks have. I hope as you get older you don't continue to be stripped of that opportunity and instead you are allowed to live in the world as it is, rather than the world as it is imagined. Because that ableist, virtual reality where people with disabilities are locked away as something to hide, as someone to fear, is not Truth.

We don't hide around here. And we are certainly not afraid.

I hope that one day inclusion becomes more than a catch phrase.

I hope that one day disabled people no longer have to scratch and claw for equal opportunities to access education. To access all of life, not merely what they are allowed to access by those who choose to live in darkness and pretend we are not a society of mixed ability on every level.

I hope that one day you tell your friend to stop pulling faces. Tell him that we are all different and that bullying is evidence of a dark heart. I hope that you don't whip your head around to stare but you turn around to smile.

And when someone asks if they can help you with something, I hope you say "yes. Educate me."

Sunday, 17 July 2016

It's time to go.

60 minutes. One hour. A solid hour. How can something so solid be made of sand?

There was focus and intent.
There were teeth grinding and spoons and buckets and scooping and pouring. For sixty minutes.

I nearly keeled over.

I knew he loved the sand. I mean, I'd seen a bit of it - we'd bought one of those tables but it kept getting drowned by that weather event they call 'UK Summer' (which looks more to me like pissing down rain, but beggars can't be choosers). That sand was played in, but not like this. Nothing remotely like this.

A fair few months ago yet another woman entered our lives for a different purpose altogether and with no business nor qualification suggested we go test for ADHD because Rukai was 'a bit whiny' compared to his peers and didn't focus well on tasks. But wot hey last time I checked, no child with an attention deficit could sit and engage himself with sand for an hour. So there there lovey, off you go, you of the silly person brigade. Take your suggestion, crumple it up with a slab of toilet roll and flush it away, along with my opinion of you (if it can catch up, because that's long gone).

You, too, were wrong. I see a pattern forming here.

But back to today.

Sixty minutes. I may as well have been invisible. He's never sat in solo attention to anything off screen for so long, always wanting to hang out with me, clinging, looking for direction, for suggestion, for a march or a dance or a different episode of Mister Tumble on the box. And as much as I treasure my time with him, my heart has been desperately seeking evidence of his imagination brewing. Great savory chunks of that magical 'pretend play' have eluded us for so long.

But as the time ticked away, me sat there watching him shine, beneath a golden ball doing the same, high above us, here in this thing they call 'Summer' sure as caterpillars eventually grow wings, he sprouted a pair all his own. They were electric, and glittering and too bright to watch but I stared anyway. Gods be damned, I stared and stared.

I imprinted that slap bang on to my retinas so I could pack away that memory beside the rest.
Those memories which explain 'yes I can...you watch me.'
'Yes I can. Yes I am. Yes I will.'

You watch me.

Sixty precious minutes in another one of these fleeting days. These days which are all shockingly short. These days which are dwindling here within that final countdown to 'Big School'.

There is no one ready for that around here.

My heart is in my throat and at the same time below my feet. I trample it daily. I am so afraid for him, for us - that he is not totally ready, that he may be treated badly, that he may be squashed into a corral when he should instead be set free across a wild, grassy range. That he may be marginalized and underestimated and limited. My son is going to start school in under two months. And here I'm only recently elated he's sat for an hour to play in the sand. I'm elated that I've seen his pretend play hit stellar heights all in the space of a few days. From a stint on a local 'beach' earlier this week to this morning's amazing bit of longer play in a half-assed sand pit before brain said 'holy shit, go get a better one, stat - this is important. Just WATCH him think...'

So we went.
And we bought it.
And we set it up.
And he played for an hour.

Why have I only just jigged this?

What else have I missed?
What else will THEY miss?
How in the hell am I going to keep all the communication open enough to enable identification of the passion points? To know where he wants to go...

...if he still cannot speak?

It is on this point which my heart is skewered, every. single. day.

We came in from the sun to dinner. He ate with fervor and there was his favorite show before him. To entertain while I got some head space. Screen time is a necessity in this house. Some lives must have that offer of head space. No shame in this house. Think otherwise? You try living here.

Then the table is pushed away, and now cleared up he takes my hand. No words, but pulling me to the giant drawing pad he's set on the floor. Looking in earnest at the box of pens, I pull it out and he roots around. We work the cap off together and here I draw a circle. This is maybe replay number three of the circle-drawing thing but it hasn't dulled the shine because we are so very much just getting started. He takes the marker off me, touches it to the paper and then he's off.

Round and round and round. That IS the circle of life. That IS everything.

He's done it before but I'm blown away at the fact that I'm seeing him remember that it's something we've done before...I'm seeing depth of understanding and the attribution of purpose to what he is doing.

And I haven't said a damn thing. I just drew a circle.

But there is meaning. This is not scribble.
There is intellect. This is not clueless.
There is ability. This is not hopeless.

There is Rukai. This is not Down's syndrome.

This is Rukai. Drawing me some circles.

So many suggested he wouldn't.
I want to bring him to face them with a pen, to circle them as if with shame.
Look at me! Look what I KNOW! Look what I can DO! Look who I AM!

Look.
Shut up and LOOK.

My mind today, too, is racing in those circles. Round and round.

School coming.
Late milestones.
So much to plan.
So little time left to be 'just us'.
My heart is breaking yet my heart is soaring.
I don't want the time to take my little boy from me, but then again it's not really time taking him away, it's HIM taking himself away. Ahead. Forward. Upward. Onward. I am just a conduit.

And these feelings, like all those other deep emotional experiences I've lived in these short four point five years, these too are just like everyone else's.

A child is born to a mother.
There is love.
A child grows and develops and learns and thrives.
There is love.
A child becomes. A child exists. A child IS.
There is love.

There are so many wishes I have for my son as these days dwindle and our last summer as 'just us' moves further behind before it eventually drops away.

"It's time to go." They said it at the end of the Night Garden show and I burst into tears.

"It's time to go."

So my son, go. But please always make sure I know where you are, and remember I am always here.
Even one day when I am not.
I am always here.

Rukai, I hope that your life is kinder than the world is.
I hope the goodness in you draws goodness TO you.
I hope you know you are my world.
I hope the world knows you ARE.

And you are Rukai.
In sand and in circles and in my heart.
My son. My every wish. My pride and my morning and night and the flame that lights up my soul.

Fly, little man. You go on and soar. Dream big.
I could not - in any plane of existence - be more proud of you.



_____


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