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.

Go.

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.

Good.
Don't go.
Stay.

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.

Never.

(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.

Mummy.

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.

Go.
Go.
Go.

Together, we go.


Tuesday, 9 May 2017

Boomerang: Life, challenged.

http://bit.ly/2pp6HfF
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.

Tug.
(Dig.)
Cry.
Tug.

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.

#MHAW17

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.

Pah.

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:

Joy.
Fortune.
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.

#WDSD17


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.