Saturday, 26 May 2018

Pilgrimage.

Seven hours in the car, alone, uninterrupted, gives a girl plenty of time to think.

It's only the second time I've left Rukai for a few days to do 'something important'. The last was a flight overseas to that epic march in Washington, but this one was much closer to home and has made me far more introspective. Why on earth is it so pressing for me to get back to the Lake District, to summit a mountain which in the view of many isn't much of a mountain at all? Yet Scafell Pike is the highest peak in England, one of three compressed into an event I left incomplete just about nine months ago; to the day as I write, in fact.

I drove through torrential rain, trying to see through the water spitting up off the back of the lorries, trying to see through my heart and its reason for taking this pilgrimage up north. Alone. I was singing along to Led Zeppelin's 'The Battle of Evermore':

I hear the horses thunder, down in the valley below. 
I'm waiting for the angels of Avalon, waiting for the eastern glow...

You bet I'm waiting. Coincidentally, I've waited the same number of months as it takes to bring a new life into the world, desperately needing that sunrise and summit to deliver new life from me. To put this down. To close the book on another set of bullies. Because in retrospect, that's exactly what they were.

I've done this sort of thing so many times before, and my husband just nods and supports what I need to get done. 17 years together and he's become pretty aware of the fact that I am comprised of 60% water and 40% 'need for closure'.

As I'd been looking at routes up the mountain I bounced the idea off him that maybe I'd take the longer more scenic route to the top. He just looked at me, waiting for me to answer my own question, which I did: 'no, if I don't go exactly the same way up, it won't feel finished.' So tomorrow will steer me to that same parking lot. The one I'd last seen with eyes red from tears of angst and anguish and anger so deep it boiled my bile. Those fetid strangers telling me I couldn't. You cannot because we think you aren't able. Now please be quiet so our van drivers can get some sleep (on top of my kit bag as it happens)...

I know exactly what I'm capable of. So why on earth do those words and those actions light me up just remembering them? Why can I not rest until I finish this thing?

_____


Rukai finally learned to jump while we were at a theme park a couple of weeks ago. He's six years and three months old and he's finally learned to jump. The first attempt so self-led, so out of the clear blue, it gives me that sly 'I-told-you-so' smile every time I recall it. Climbing off a rollercoaster, he took my hands, bent both knees and launched himself onto the floor, very nearly effortlessly.

"Well done, buddy!" said I, beaming. Another milestone. They all come late but still they come. I remember hearing how he wouldn't be able to do ABC without this-or-that-therapist and there he does. With love. Only love.

Life is learning. Love is therapy. Rukai is not a medical problem, he is a boy learning how to do things. In time, in time.

As we reached the exit steps, he decided to jump down them all. My cheeks were about to burst from the joy streaming across my face. I told the ride operator he'd never done this before, still her lack of interest was palpable. Every day we are out there clocking milestones and winning battles while she lives inside her ordinary, wearing it like a cloak.

And there we took our joy out into the sun.

As do all new-things-that-kids-figure-out, the cycle continued for the better part of an hour. Off this ledge, off that ride, off another wall, he took my hands and jumped. And then there was a ramp. I was stood behind him, still holding his hands, so I could not see a furrowed brow thick with concentration, I could not see an epic grin of achievement, I could only see knees bend followed by the distinct sound of two feet slapping the floor in unison. And again. And again. And I cried out "Rukai! Have you just jumped all by yourself?!"

It was a question, yet I already knew the answer. He has. He can. He will.

_____


Yesterday's seven road hours, in all their rainy darkness, took me back to the shine of that magical day of jumping. To the first moment of standing. To the day he figured out where his feet are. To the first grin, the first laugh, the first babble. Words are out there. Words will come too. Patience is a virtue. Patience is everything in this life.

It's ok to go slow, as long as you go.

At the beginning of life with Rukai, we started logging milestones in one of those baby books before we realised that it would be too painful to watch the dates go by without a milestone tagging along. And then one magical day we realised the milestone books are a total nonsense, and they only allow medical professionals who really know so little about what Rukai can and cannot do to gain information and pretend they know so much. Medicine is meant to work along with us, not pat us on the head and say 'shhh, let the experts handle this.'

I've said it before but I'll say it again because it's important: the expert on Rukai is Rukai. I am just the tour guide.

Yet there are so many people back through those 6 point three years who would deny all of it and imagine there is no hope for a journey, there is no success to be seen in the invisible crystal ball he has been shackled with round the ankle. He can still jump with that shackle on so they'd best think through those theories once again. We'll wait.

Because patience is everything in this life.

Like our progress, those memories are relentless. And they always yank my chain. Because I feel as if I could have defended him better. I feel as if there is a magic switch to throw which will open their eyes and take away the misinformation. I cannot go back and fix everything I didn't do well enough so now what? Perhaps that's the theme for the journey home on Monday.

Still those seven road hours were a serum, a balm. They provided the missing puzzle pieces. And somewhere in the midst of a jaunty, drizzly loop around a silent lake, while breathing in country odors and bleating sheep song, I figured out exactly why I am up here again. Why I have to finish this challenge, even when it's no longer the same challenge. Why I have to prove to people who couldn't care less - just like that ride operator - whether I've done it or not.

Lake Buttermere

I love to run. I love to do athletic challenges which may look on paper like they are far beyond my reach. But as long as you keep moving, nothing is beyond your reach. That is what goals are for. Aim high. Draw the bow. Fire the arrows. Learn when you miss. Draw the bow again. ("Sing as you raise your bow, shoot straighter than before.")

I fight so hard for people to stop marginalizing my own ability because every.single.day. I see how many people marginalize Rukai's ability. I get it. I know what that looks like. I know all too well how it feels to be on the receiving end of pity and low expectations. People who don't know either of us from a bar of soap take one look, whether on paper or in person, and make every last assumption about capability and drive and determination. But what they fail to realise is that having the ability to endure such staggeringly low expectations makes the pair of us stronger than they ever will be. Those who endure, and survive, and continue after they fail, and eventually succeed, are going to change the world.

Don't throw baby in a corner. Don't throw mama off a mountain.

You just try.

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