Tuesday 8 April 2014

You take your stand.

London granny is on vacation this week, so I find myself juggling working from home with watching Rukai. No small feat. His new treat-everything-like-monkey-bars attitude is equal parts glorious and exhausting. Those parents who experienced this phenomenon far earlier in the child rearing experience will likely not know how good it feels to ease the weight of that particular piano as it slides off your shoulders. It's a heavy, troubling old bastard, and it hasn't exactly been banging out ragtime singalongs for the better part of two years.

And see there - a new grin on his face, a new light in his eyes, as he realizes that piano was weighing him down as well. When he realizes that - with it's departure - oh how he can fly! Lookitmego.

And he goes up up and away.

Eyes in the back of my head seem to have appeared at about the same time. And fortunately, once he summits the sofa I can park myself in front of it and click away at my keyboard while he plays with the random socks, mittens and rubber duck he left up there last time, giggling over my shoulder at the Baby Einstein kids singing 'Head, Shoulders, Knees and Toes' for the 87 thousandth time. (And that's just today's count.)

But since both of us need a break from our work here and there, this time I let the kids on the TV laugh and run off screen, click 'send' on another email and turn to pause and un-cross my eyes, grasping another ten minute window til I must go back in.

On this play break as on most, I let Rukai take the lead in what we play and how we play it. And as long as he doesn't want to chuck plates across the room or knock over the garbage can, this is usually not only acceptable but a great way to encourage him to experiment. To test, to problem-solve, to strengthen pincer grip and hand-eye coordination. It's not 'therapy' or prescriptive. It is letting a kid be a kid.

It is letting a kid belt out belly laughs. And attempted words ("awah mama!"). And kid screams. Auditory diamonds.

So we sit down for a go at his latest game which we shall title 'not-only-can-I-throw-things-but-I-can-knock-them-off-your-head-too-hey-check-me-out!' And this round was played thusly:

We are sat on the floor. Rukai hands me some object which I am supposed to balance on my head so he can grab my hands, pull up to stand, let one hand go (huge move for him just now) and knock said object off. Off goes the object (a food packet in this instance) and he goes for my glasses next. Rules of this game state they either get flung across the kitchen or - another quite recent development - he tries to place them on top of his head and I will then put them on his face. But this time, we fling.

Packet and glasses gone, he grabs my nose with one hammy fist and leaves the other hand free. I remind him it is attached so he cannot pull it off and fling it across the floor. He looks me dead in the eye. His eyes blaze and he grins ear to ear.

And then he lets go.

And then he is standing. I am out of my head. A pride so all encompassing I cannot remember to breathe. My face must reveal this to him because the grin spreads, his eyes positively shine.

1-2-3-4-5. And then he topples into my massive hug.

And then he pushes off, seemingly oblivous to the sheer magnificence of what he has just accomplished - after all this time, what he has just accomplished - and scoots over to the toybox. Out comes a car and the game has vanished. Or has it.

Yesterday, I'd wondered if it was a fluke. Then today, he did it again. Exactly the same. No piano on that back, free flying wings and eyes so ablaze they could have blown a few dozen new holes in the ozone layer.

No, no fluke. We are approaching that new horizon and this is not a test.

26 months old. In your time, as it has been from your first intake of breath. You take your stand, young man. When you are good and ready, you take it.

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Days 56 & 57: #100happydays

Wednesday 2 April 2014

And we kept on walking.

If the interaction hadn't started with "Well HELLO!  Aren't you just GORGEOUS!!" there's simply no telling how I would have reacted. She had a shock of dyed red hair - like RED red, not auburn or 'ginger' or 'copper sunrise' or anything by birth or by L'Oreal, but RED red. That hair and that face which could've been foe. Could've been all foe.

But no.

Still knocked the wind out of me, though. Like the 12" softball that took a bad hop and clobbered me in the collarbone back in the day, in my head I stumbled a few steps in reverse and leaned over to compose myself, hands on knees, shoulders slumped. In reality, I was frozen in place. Ironically, I had been studying a rack holding DVDs of the Disney film with that very name, and here I was playing it out in charades.

After a week starting with bad and shuffling its way towards catastrophe, a week in which I thought 'how can it get any worse?' there she was, with that question we'd eluded for nearly twenty-six months falling out of her face as if she was merely asking me the time. That question we hadn't yet heard, but I have expected to hear every. fecking. time. we leave the house.

"Is he a Down's child?"

(Kick) Phoooooooooooooooooooooooo.

And somewhere from maybe behind my lungs (seeing as how they were empty now) or perhaps my left elbow, hell, maybe even from behind my right kneecap where that persistent nagging has been lingering the past few weeks - somewhere - my body delivered up a smile. That grin crept up like the old itsy bitsy spider and curled its way across my face. I wasn't yet sure if olditsybitsy was going to be a tarantula or one of those slow pokes you smash into a pulp with your slipper, but there it lay.

I summoned my voice and spoke through it. "Yes, he has Down's."

(Phoooooooooooooooooo)

I don't think I was clenching teeth, or muscles, or fists but possibly only because I was trying to balance an overloaded basket on the stroller handles to prevent our intrepid hero from flipping over like a wayward turtle. Perhaps that overloaded basket was a blessing.

And then she and Rukai went and grinned at each other. My eyebrows peaked and my grip loosened. My boy was cool. Chill mama, chill.

Ok skippy, you're in the driver's seat. Go forth and conquer.

Red pointed her grin at me and went on to tell me how she had done some work with people with DS, and save a few unfortunate stereotypes (among them that "ah they're all so nice and loving" chestnut again, and still not really sure why that bothers me so much but it does) it was a fairly pleasant conversation for something that had started with a kick in the guts.

All in, the duration of that episode of 'as my stomach turns' was about 3 minutes, max. Yet it took me the remainder of my shop to shake it off. And she was NICE. That's all I could think of as I left the store. 'Thank God she was nice. Thankyouthankyouthankyou.'

What will I do when that one comes along who isn't nice? Well that, friends, is for another time. Today we are here. Today we had nice.

One left turn outside and Rukai and I were strolling in the sun towards the house. I found myself feeling a bit small. I realized the ridiculousness of this and rolled my shoulders back. I pressed down these shoulders that sometimes feel altogether too heavy with the world, and I stacked my vertebrae upright again. I felt strangely proud that I'd been able to get through that conversation without disintegrating.

The road is long. The road is unpaved and bumpy. The road trips us up and bloodies our knees and draws tears that streak through the red tinged dirt, leaving us as painted warriors, post battle.

This road is Life. And no matter how many chromosomes we have in our fragile bodies, we travel this road together. Highwaymen and vagabonds, bankers and bin men, children and grandparents and cockatiels and grasshoppers, every one runs the gauntlet which is this road called Life.

I looked at Rukai and thought 'you are Rukai. You have Down's syndrome but you are Rukai.'

And we kept on walking.