Wednesday, 7 January 2015

I hope you Dance.

When we first learned that Rukai had Down's syndrome, I delivered myself a crash course in knowledge building - mostly to help him thrive but also to ensure the medical people wouldn't try to steamroll us on the matter of his care going forward as they had tried to do on everything else to date.

T and I have always concurred that the best way to manage people who throw 'scripture' at you on any given subject is to study said scripture, wear it as armor and beat them to the draw. (I bet you thought I was going to say 'beat them with it', which actually is the same thing to an extent...however, not on this occasion.)

So I studied. Napping when the baby naps went out the window because it was far more important to learn more about what was supposedly in store than to sleep. A lifetime to sleep.

Over that first year if we'd had a pound for every time one of us said 'that's bullshit, just LOOK at him!' we'd have a pretty substantial bankroll here on the precipice of age three. Dare to dream.

Although a blood test told us Rukai had been diagnosed with Trisomy 21, I read up on the other two types of DS: Translocation and Mosaic, if only to add to my knowledge base. And despite what commentary, what website, what association or charity I took information from, little was doing me much good because they were already slapping that label around. Box 'em up and send 'em off to the community pediatrician. I desperately wanted to find some hope, someone who told it like it is and said it was going to be ok.

That hope is really hard to find. That truth is really hard to find.

I think I have found some of it now, but at the time I only found a beautiful montage of people who have Mosaic DS on one of the support pages. Hovering that mouseover, I'm thinking yes, this will lift me, this is hope. Click.

Over the slideshow out comes the song 'I Hope You Dance.'

I fell to pieces.

Of all a mother dreams for her child, there is likely one thing that stands light years above and beyond every small hope, every tiny vision, every short story yet to be told. And my ONE THING was Dance. It had been Dance since I was seven years old. It had been Dance when Rukai was a mere thought and it had been Dance when we were minutes from meeting him.

I hope you Dance. I hope you Dance. Please God, let him Dance.

On our NCT group 'delivery day' the lead asked us if there was one characteristic we wanted our child to have. Out of my mouth comes 'his Dad's eyelashes' but the one thing I'd really had hopes for was that I wanted him to be able to dance. I wanted Rukai to dance because I grew up embraced by the amazingly joyful past time of learning and teaching and living the power of movement.

I wanted him to have this. To live this. To be freed by this.

Seventeen years of expressing my thoughts with the flick of a wrist, the tilt of a head. Bounding across stage after stage, launching myself skyward, each movement its own revelation. Spinning and spinning and spinning each new story. Each routine playing another character, from within and from outside myself. Dance was the only way a shy, bullied kid was able to come out of her shell. Entertaining others - the applause, the joy on their faces. To be good at something that defined me, freed me. Saved me. I know how powerful that gift is.

And here I was crushed, those hopes buried in the mud beneath overpowering seeds of doubt. Rotten, moldy seeds mashed into the soil by inconsiderate and thoughtless medical people. In that instant, I went from wanting him to Dance to merely wanting him to BE. Because I'd been led to believe I should expect little more.

How is this not criminal? To dash a family's hopes so severely? To break hearts? To break spirits? On the back of 'what if's and 'maybes'? It is they who should live with the shame they try to smear across the parents of children who are merely different. I will never forget that feeling of leaving the hospital in the dark, like lepers. I do not expect to forgive it either, yet admittedly, these days are still fairly 'early'.

Such a disservice delivered us by those people. And despite how fervently I try, I cannot go back to those minutes, those scenes, that memory without the bitterness doing its own little time step across my tongue and down into my guts.

But hang on! Wait! We are on the precipice of Three!

We are Here. In the New.

This bitterness is short-lived, here as we look ahead and around and beyond. This bitterness is overcome by sweet success (aftersuccessaftersuccess) because when this bitterness dares to fester, Rukai always outshines it. The shine is painstakingly slow to ripen yet every day it is more ripe, and that sweetness - it positively FLOWERS. It paints the air with the scent of IAmICanIWill and here we are. And we ARE dancing.

We went to soft play this morning. Surrounded by throngs of age appropriately mobile kids as per, pouncing on one another, bounding up and down the edge of the ball pit and crashing inside.

There sits Rukai, shying off a bit - nervous of the pace yet entertained by the clatter. Music in the background, he is bouncing his own version of Dance til his core and legs are ready to do their thing. He bounces in time. He's a damn fine bouncer. This doesn't surprise me.

I am propped up against the wall between a rocking horse and a scattering of plastic balls observing Rukai...observing.

I am feeling low as I usually do when I see this - thinking 'please don't be afraid, Rukai! You are strong enough! Go on and play, interact, you will be fine!'


I turn my eyes heaven-ward and think as I've done on so many occasions before, 'please make this easier, please - will you? Won't you? Anyone?' my eyes welling up as I look down, and there suddenly goes Rukai collecting the balls scattered around and dropping them back into the pool.

I smile. I give thanks. I pass him more balls.

The pouncing kids eventually get out, go running to the slide, go running to the crawl tunnel, go running, go running. Running.

Then they are all gone, save one. She goes up and down the slide. 1-2-3-wheeee!

Rukai observes.

It's quiet enough, safe enough, so here he crawls up the foam steps embedded into the ramp which leads to the top. He has yet to go down the slide. And still this is not the time. He turns and shimmies back down the 'ladder', face first, giggling.

Little girl goes up the steps and slides down.
Up and down.
Up and down.

Rukai climbs halfway up and watches.

Up and down.
Up and down.
Up and down.

She explains to Rukai how to do it.

I smile to her mother 'the day he goes down the slide I think I'm going to fall over.'

She smiles and her girl again is up and down.
Up and down.

Rukai returns to me and we deposit more balls into the pool.

And then he's back on the steps.
And then I help him down the slide.

And then he's back up the steps without me.
(I am holding my breath.)
He is bum shuffling over to the slide.
(I am holding my breath. My eyes are popping out of my head.)
His feet go in the chute.
He takes hold of the side rails.
I am saying 'Scooch, Rukai! Scooch!!!' I am smiling. I am crying.
He is remembering 'scooch'.
And there he slides. 1-2-3-Wheeeeeeeeee!
And there he is grinning ear to ear. And he looks at me, with such pride and joy and bliss in the movement that has just freed him.

And I am again in pieces.

And there he goes up and down.
Up and down.
Up and down.

Oh you'll Dance, my son. You'll Dance.