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 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!

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.


Tuesday, 12 July 2016

From that wound, red.

In 1955 there was a bus. And a woman named Rosa Parks. 1955. 61 years ago. There was a bus and a woman who said "stuff your stupidity, I'm tired, and I'm sitting here, and I'm not moving."

Someone put her in jail. For sitting in a seat. Someone forgot that we all bleed red.

In 1963 there was a man named Martin. Martin may have been a white man's name but not this Martin. No. This Martin was a black man with an enormous and beautiful dream. Of equality and brotherhood and peace. A huge loud dream. A simple quiet dream.

Someone was so afraid of equality that they shot him dead for his beliefs.
From that wound, red.

We all bleed red.

A hundred years prior there was a man named Abraham, like that name from the Bible, that great text held up before us as the word of God, the code, the creed to which we should all operate. But this Abraham was called Lincoln, he of the stovepipe hat and the original, yet now dead lost, Republican party. This Abraham said that all men would be equal. That all men should be made free. This Abraham believed too that we all bleed red.

Someone was so afraid of equality that they shot him dead for his beliefs.
From that wound, red.

Those men and those women, they bled.
Those men and those women, they fought for that freedom.
Those men and those women, they rose up and they built lives on the back of oppression. They built lives on the back of hatred and stupidity and cruelty and ignorance.

Those men and those women, they are all my brothers and sisters because we all bleed red.

One of those men became my president.
One of those men has retained his dignity in the face of eight years of abuse.
They call it 'hopey changey stuff'.

He hoped. He tried to change.

But someone was so afraid of equality that they killed his beliefs.
Yet he still believes.
And I'd elect him again if I could.

I am born of white privilege.
I am born of ableist privilege.
I am a woman. With an opinion. With a big mouth, bigger ideas and an even bigger idealism.
I have no room in my life nor my heart for hate.

I too bleed red.
As does my Asian husband.
As does my disabled son.

All red.

And we all weep salt water. Like the oceans between all our hearts and beliefs and fears and disappointments. Salty seas.

But hope floats.

Equality is only a word. Yet some people in this very mixed up, very sad, very traumatized society choose to tangle that word in animosity and scrape it against hope like sandpaper, shredding serenity, scarring righteousness. Without reason, destroying progress.

But still we all bleed red.
Let them feel what they will, and they may never understand anything more than their own hatred and angst.
Born of fear.
Born of self-entitlement.
Born of inability to see the opposite side of the coin and all the red blood flowing through the veins of the world.

There is no cure for the hatred in this world but tolerance.
There is no room for name calling and accusation and hypocrisy. For negativity and pessimism and talk of the sky falling. Unless you see space junk making a beeline for your forehead, the sky is not falling.

Your sensibility is.

We are better than this. Than all of this.
In that there is a need to say 'we must control these weapons because too many innocent people are dying'.
In that there is a need to say 'black lives matter'. Despite our pitiful history, was there ever a doubt? I am so disgusted that there are people on this earth who feel they have to explain their worth. You are my brothers and sisters and on behalf of every white face on this godforsaken blue ball I am so fucking sorry. I wish we could all do so much better.

Some doubt the relevance of that phrase, they try to dilute it with excuses, and that is so pitiful.
Black lives matter. Of course they do. Keep saying it until people get it.
Disabled lives matter. Of course they do. Keep saying it, too, until people get it.
Women's lives matter. Of course they do. Say it. Speak loudly. Roar.


There is no cure for the inequality in this world but for people to strip themselves bare of beliefs.
Why does it matter the color of someone's skin?

We all bleed red.

Why does it matter the depth of intellect? The number of limbs? A person's mobility?

We all bleed red.

Man or woman?
Man who becomes woman?
Woman who loves woman?
Man who loves man?


I don't care what toilet you use.
I don't care what God you love.
I don't care whether you wear a bra or a shotgun or steel toed work boots.

I may not agree with you but that doesn't mean you are wrong.
Unless you hate.
Then you are wrong.

Because we all bleed red.

I feel like that Leelu in Fifth Element when I watch the news. The pace, the anger, the horror, the disgust, the fear, the danger, the crisis, the death, the sorrow, it leans and presses and burns and rages and destroys every last bit of serenity I have in my heart. I can't bear to watch the news.

If that's just me, what has it done to you? To us all?

In 1863 an unchaining.
In 1955 a bus.
In 1963 a dream.
In 2008 hope.

In 2016 -


We all bleed red.


Monday, 4 July 2016

Up the hill and into the wind.

As a mother there is probably nothing worse than the fear that you are outright shit at it. I know that fear well. I'm pretty consistently envious of those people who seem to have a special 'mommy' gift - those who instinctively know how to fix everything with a stick of gum, three peppercorns and a paperclip, like MacGyver with mammaries. The ones who make their own paint and teach their kids origami by age 2. The ones whose kids know how to paint the kitchen by 4 and the fecking Sistine Chapel by 6. The theatre-goers, the kite flyers, the lesson driving and duck feeding and paper boat making kind of moms. Not me, I'm pretty sure I'm utter cack at the mom thing. Like I've fallen from the Titanic and just about doggy paddling. But I seem to have on a wet suit so at least I won't freeze. And hell yes, I've got a child to 4.5 without great trauma but...

Then we started potty training.

You can almost hear the game show wah wah wah wahhhhhhhhh sound they save for the big loser. Then again, who's the loser - me or my living room floor? Now endlessly damp and trodden on from me racing to and fro, pottty chair aloft, trying not to spill, racing down the hall to dump it out and back in time with hopes he really WAS finished when he stood up and not just overeager to hit the 436th rendition of the dance routine from the Chessington Penguins of Madagascar Cheesy Dibbles show, all with his bits wafting in the breeze like the day he was born. If I hear 'keep your eyes on the prize' once more I may have to pack out my ears with what's left of the toilet wipes. Then too, if I ever see another toilet wipe again I'll be glad...largely because I keep flinging them to the side like the tape during a Christmas wrapping sesh and can never find the damn things when I need them. And why in the HELL can I not pull one out at a time? It's always a clump of four. And then I tear the packet so it doesn't close properly leaving the next blob of four slightly dried out and useless. I swear someone's hidden a camera somewhere and we're headed for next week's You've Been Framed.

This is entirely for the birds. And there really IS not enough wine.

And there we have young son, that fantastic champion of inclusion and all things equal, who is so utterly typical in this situation it makes me want to cry. And he actually DID make me cry yesterday. But only after he showed he knew he needed a wee, then proceeded to set up the potty, position himself...and piss on my rug. Wa-hey, the glamour is endless! The excitement unstoppable!

The stains, semi-permanent.

But come on now! For the love of all that is good and holy, I've run a bloody marathon! I've done some amazing charitable fundraising. I've been a proud voice for Down's syndrome awareness and disability rights, and equality and progress, yet here I am stagnating on wee. Ah this life, this life this glorious life. This typical life.

Life 1, mommy 0. Life wins. Always, life wins.

I'm knackered just thinking about it. I'm knackered because I've been battling that 'I am utter crap' fear for what feels like forever - that fear which camps out in your head, builds a giant fire pit and starts burning all your achievements, then smears ash about your face and prances around like Keith Lemon taking the piss out of Fearne Cotton. But I stop and look at it and realize I'm not crap. Crap is crap. And everything I am experiencing here is shared, and normal, and typical and every mom from every corner of the world has done this thing...when their kids do their thing.

Aside from feeling like I'm a candystriper who's drawn the short straw and with it, bedpan duty, it's all part of the journey as an old friend once said. The road is truly long and we all share it. Sometimes it's streaming with wee and we can do little but clear up the mess but there we all go forth and by God, we live. We all live the same.

The other day I was out for a run, chugging up a particularly challenging slow incline. I set my tempo and pushed forward, all while pondering this behemoth potty training challenge, and before it the diagnosis challenge, and the family challenge, and my long-ago bullying challenge and all those life challenges that had brought me to that very hill, in that very place on that very day. Those rolling hills, those peaks and troughs, just like life. All of life. I realized that in any life worth living we are always headed up the hill and into the wind. And never will we see what's on the other side unless we dare to make the climb.

Progress. Baby steps. Climb baby climb. But first pass me another packet of wipes, will you?