Wednesday, 12 February 2014

When dirty water freezes over.

The Dirty Water Pool has frozen over. We continue living above the murk these days, and our story continues here.

Down in front, please.

Saturday, 21 December 2013

I know that thing.

I can hear it.  "Baby!  Bit slow but dang ain't he a smart thang!"

I can hear it.  She's not here, she's up THERE, but if I can't hear it, I'll be a monkey's uncle. 

Since I was pregnant I've felt my grandmother, Rukai's great grandmother (Great Granny Rainbow Angel) just, well...THERE.  Has all to do with rainbows which is a far longer story than I have time for just now but by and large, it's stuck in my head, like this cold I've had over a week and can't seem to get rid of.  She's watched out for me, for him, for us, and she's just there.  When he was very small and giggling at the walls, I knew who he saw.  And as Forrest Gump said, 'That's all I have to say about that.'

But I can hear it, by god, I can hear it.  And today, in some way, I saw what she's seeing.  The wheels.  Turning, turning, rolling and cruising.  Skipping over potholes, doing donuts in the parking lot on a packed layer of snow, burning rubber on a racetrack.  Those wheels, those wheels.  That magical thing they call 'imaginative play' where the child takes a thing and does something with it that is of the child's own imagination, not what the thing is for but what the child thinks the thing can do.  This thing does that?  Bollocks, I say it does THIS. 

Go on my boy.  Tell that thing what it does.  You tell it.  Speak loudly or forever hold your peace.

The child speaks.  The child SPEAKS.  With those brilliantly shining wheels.  'This thing is going to do this now.'  And the rolling of those wheels fills time and time rolls on and with it we roll.  Like a snowball on a mountain, we roll and we grow bigger than even ourselves and we land with a thump and say 'sittin here til the thaw, brother.  Merry Christmas and Happy New Year and dear Life: let's dance, you and me.'  And we dance.

(I hope you dance.  Oh, yes but he dances.)

And shouldn't we all live like this?  More in a 'they said this thing was for THIS but I think it can do THAT so let's rock and roll' way
a 'square peg into square hole, done, let's go buy another Porsche cos I'm such a fecking genius' way.

Take the latter if that's what you want.  Us?  We have a conscience.  We're good.  You go drive that crooked road, but we'll stick around Morality Street and do some donuts for you.

It is my greatest hope that our son just embraces 'that thing'.  I know that thing.  As a child I made crowns out of cardboard and tin foil.  As an adult I've crafted a North Pole out of a cardboard carpet roll, some wrapping paper and a swodge of red ribbon.  I am the 'go to' software geek in the office, because no matter what that THING is, I can bend it to do what is required by me, if there is any remote way it can be done.  I will seek that way and I will make the round peg fit.  As I live and breathe I will make it fit.  And oh my stars, what a comfort it is to know the thing I most want our magnificent boy to excel at - the thing he is proving to be well capable of excelling at - is the thing I do best.  Easy teachins?  With a student like this...BRING IT.

I am loving every second. 

Intellectually disabled?  Tell you what, I've taught dance for years, I've dealt with people in business for years, and I would trade the lot for a thousand more to teach who learn like this. 

It is all I can do some days to withhold my anger at the bods who threw Rukai away just after his birth.  I seriously just don't register where there is a problem, let alone what that 'problem' is. 

Slow does not mean 'never'.  It means 'late'.  BFD.  (You translate.)

Let those wheels roll.  Hit a curb, smash some glass, cripes, collide with a flipping iceberg.  In your time, in your way, as you see fit, you will roll.


The wheel is turning and you can't slow down
You can't let go and you can't hold on
You can't go back and you can't stand still
If the thunder don't get you then the lightning will...

...Small wheel turning by the fire and rod
Big wheel turning by the grace of God
Every time that wheel turn round
Bound to cover just a little more ground

- Grateful Dead

Tuesday, 10 December 2013

They call it the first amendment where I come from.

It's my life, take it or leave it, set me free
What's that crap papa, know it all?
I got my own life, you got your own life
Live your own life and set me free
Mind your own business and leave my business
You know everything, papa know it all
Very little knowledge is dangerous

Stop bugging me, stop bothering me
Stop bugging me, stop forcing me
Stop fighting me, stop killing me
It's my life

It's my life my worries
It's my life my problems

Do you understand? I live the way I want to live
I make decisions day and night
Show me signs and good examples
Stop telling people how to run your business
Take a trip to east and west
You'll find that you don't know anything

Everyone's getting tired of you
Sometimes you have to look and listen
You can even learn from me
Little knowledge is dangerous, it's my life

It's my life my worries
It's my life my problems

Set me free, so you bed, so you lie
What you see is what you get
Listen to people and sort things out
Things I do, I do them no more
Things I say, I say them no more
Changes come once in life

Stop bugging me, stop bothering me
Stop bugging me, stop forcing me
Stop fighting me, stop killing me
Stop telling me, stop seeing me

It's my life.

- Dr. Alban

Wednesday, 27 November 2013

On giving thanks.

On Thanksgiving, I will give thanks.  To 2013, thanks. 

To this year of problems with no clear solution, thanks.  To this raging test of my character, thanks.  To the strengthening of old friendships and building of new, thanks. 

To remaining on the right side of the dirt, thanks.

The sun rises and it rises again.  It is always orange and it always burns if you get too much.  Thanks for this sun.


For January.  When I was able to go back to work full time, yet keep a day off to spend with my special precious squidge.  I'm tired all the time, but I get to be near him five of seven days a week and get to actually hang out with him three of those days.  I am seeing him progress.  And I have seen some of the 'firsts'.  The firsts I thought I'd miss entirely.

Lucky lucky mama.  Thanks.

For February.  When our beautiful boy turned one.  Lively, healthy, thriving, facing all the low expectations.  Ignoring them.  Destroying them.  Proving the doctors wrong. 

Yes. THAT.  Yes.  YOU.

Maybe I didn't need to do it after all.  HE will do it.  Pay attention.


For March.  When I had the fortune to spend the last 11 days of my father's life with him, before he left this life for whatever is beyond it.  For the shortening of his torment from that ridiculously evil illness.  For the torment through sorrow that reminds me I am alive and gives me gratitude every minute for that life, no matter how challenging.  Even when someone opens the cupboards and starts chucking the Le Creuset at my face.

Thank you.

For April when I decided to honor Dad with a charitable tribute and I ran.  And ran and ran and ran.

For May when I knew I was ready to make all that running count.

For June when I didn't stop running for that hour.  I didn't stop running to keep that promise.  To wear that medal and to submit my donations to those who cure, whose love transcends all illness, whose love lifts the spirits of all the worried, whose love embraces the sorrowful in our time of loss.

Thank you.

For July when I celebrated my independence from the most toxic person I know, having been threatened with 'ending'.  I wish you healed, but you will not take from me any more.  I don't wish to know you.  I don't have to.  Call whoever the hell you want.  You are irrelevant.  Goodbye.

Thank you.

For August when there was sun, and there was my son.  And the sea and the summer.  For August. 

I loved August.  Thank you August.

For September, when Dad's birthday came and went without me making that annual call.  I had to chat with his memory instead.  I looked at the card I'd bought, the one I knew I would never give him.  For the dinner we had in his honor on that birthday, concluded with a spare Ketel One, served in the Santa Claus mug he'd drunk his coffee out of when we had him here for Christmas.  We emptied that mug with a toast to the sky and the mug sat on the table for a month before I could bear to wash it.

Thank you Pop.

For October, when my birthday came and went without that other call.  When I failed that ridiculous driving test.  When I had the sense to sack the world's shittiest instructor and two lessons later passed that ridiculous driving test.  With the world's best instructor.

Thank you, MY friend Glen.

For the offer on our house.  The right offer.  From the right people.  For our offer on the other house being declined, now that I've found out more about that particular neighborhood.  For making us keep looking for the RIGHT house.

Thank you St Joseph.

For November, when that old playground bullshit came back with a vengeance from the most surprising of places.  For not having Dad to call to draw strength from, yet still he was here, in my heart.  For that knowledge giving me the strength that I needed to say bring it on.  Try me.  Show me your worst.  I got this.  I am justified.  You are blind.

For that attitude Dad (and Mom) either gifted or cursed me with (I have yet to decide) which says 'if you like me, great, if you don't, I don't give a shit.  I am ME.  I will not change for you.'

And I won't.

For a year fraught with challenges, and for its impending end.

Thank you.

For the ability to rise above it all.

Thank you.
Thank you.
Thank you.

Tuesday, 22 October 2013


I've been trying all day to find the words to explain this thought.  It's a massively important thought, and may I be bold enough to say I haven't seen anyone else write or admit to this thought but I know I am not alone in thinking it.  But the damned explanation of it borders 'Rubik's cube'.  So here goes nothin'.

According to all the theory, research, statistics, etc., Rukai is what they call 'developmentally disabled'.  This classification is based upon what society knows about how ordinary children develop.  You learn A, then you can do B, followed by C and so on.  He hasn't done these things at the same rate as most ordinary children so therefore, he must be fixed.  He must be flawed and he must be fixed to be as close to everyone else as he can possibly be.


This is the same society that feels it needs to put things in boxes, to organize and order things, to make sense of things.  The society that believes in God, Jesus, Buddah, Allah, Ganesh, Shiva, Jah, howmuchtimehaveyougotI'vegotawholelistofdeitiesinmyheadandIdon'tcareifIspelledanythingwrong.

What it boils down to is this:  People need to make sense of things and children with alternative needs do not fit the mold.  And medical bods just cannot bring themselves to say 'we don't know what you're capable of, but damn, won't it be exciting to just learn and discover as we go along'.  It's easier to say 'you should be like THIS because most people are like this.  If you don't fit what we think you should be like, we'll try our damnedest to ensure we push you into our mold.'

But why?

Big people are supposed to be in charge of little people.  We are supposed to know what they need.  We have to rate and rank them against their peers.  We need to ensure kids who haven't been born with the 'correct' number of chromosomes, or the 'correct' physical abilities, or the 'correct' social skills or the 'correct' sensory reactions are constantly being pushed to absorb what they lack, are constantly being pushed to 'catch up'.

But what the hell for?  Catch up to what?  Says who?  Fuck that.  Sorry, but fuck. that.

T and I regularly sense resistance from some when it comes to our attitude and approach to Rukai's learning.  We shun 'therapy' and we shun external influence on his life.  Why must we introduce strangers to his life to push him to catch up?  And here it is:

We are not in charge of Rukai's 'end game'.  Rukai is.  Rukai doesn't need to 'catch up' to anyone.  Rukai will be Rukai.  He has his ability.  He has his possibility.  He has his drive and his motivation and his fire in his belly.  He will go as far as he is capable of going in his life, whether anyone intervenes or not.  He will be.  And he will be AWESOME.  And he won't need anyone else to bring that out of him.  He won't need anyone else to ensure his 'mental age' and his 'chronological age' match up, or come as close as they can.  Because, seriously, what is the point?

Rukai was born as he is because Rukai is meant to reach that particular potential.  Not some arbitrary societal potential, but Rukai's potential.  He is not flawed.  He is not wrong.  He is not disabled.

He is Rukai.

The reason people freak out when they have a child with an alternative ability to the 'norm' is because - due to the reaction from the medical people up their asses in the first hours/days - they feel their child will have to spend his/her entire life catching up to what society thinks they should be.  They feel they have produced an 'imperfect' person who NEEDS help from outsiders.

And that infuriates me to no end.

Maybe the thing that society doesn't 'get' is that there are some people born to this life who society thinks is missing out, and who are flawed or faulty in some way.  But as we all see our own 'God' from a different perspective, so too we should see all human beings from the same viewpoint.  We are not the same.  Stop trying to put us all in a box.

How dare anyone suggest that we apply any pressure to be a certain way on our kids?  Any kid?  Not just kids with alternative needs but any kid?

And if you're thinking it, no I'm not saying this to make myself feel better, I'm saying it because it's totally and utterly ridiculous that there is some sort of measuring device judging and EXPECTING things from people.  That is a load of hot, smelly, steaming bullshit.

Are we not all individual?  Is my son less of a person because he learns a bit slower? No he bloody well isn't.

I cannot say it enough: we do not fit a mold.  No one does.

We do not fit weight charts, and height statistics, and developmental rankings.  We grow as we grow.  I don't give a rat's ass how many years of medical school someone has had, this does not give you the right to rank and pressure my kid to meet your definition of what he should be.

He is Rukai.  Nothing more, nothing less.  He is fine.  We know this and we don't give a shit if you like it.

We know this.

And this is cosmically scary to folks who are paid to know everything.  Don't even try it on, you don't. 

Folks who are too afraid to say 'I don't know, let's wait and see,' so they try to find order in disorder.  How very damaging this is to Rukai, to all the other people in the world with alternative abilities.  Perhaps the necessity of this disorder is the point of all of this.  Look and see.  You don't know what you think you know.  Open your other eye.  Watch.  Learn.  Hush.  Listen.


Rukai is not 'dis' anything.

Monday, 30 September 2013

Rebuilding the cheese.

Anyone of a certain age will know that it doesn't matter how many times we fall in life, but rather how often we get back up which truly defines the depth of our character. And nowhere is this better demonstrated than by a small person trying to figure out how to walk.

Next time you want to throw in the towel and give up on something, because it's 'too hard' I dare you to stop feeling sorry for yourself, grow a pair and head on down to the local playground to watch how often those small people fall down and get back up. Sometimes they audibly smack their head.  Sometimes they draw blood.  Sometimes their face crumbles in a 'boo boo lip' and a simple distraction gets them back on their feet, readying for the next fall.  They are steel and you are a soft and mushy banana pudding.  You will feel like a complete ass, in the midst of the world's largest pity party. Boo hoo.

We weaken as we age. In so many ways.

Join us here on planet Rukai where witnessing this tough nut-ed-ness gets even better. Because here's a toddler who, through the luck of genetics, has been dealt one 'get-on-yer-feet-later' card, and another 'fall-down-for-a-few-months-longer-than-the-average-bear' card. This, as part of that old 'sorry-but-you're-short-a-couple-synapses' hand, cut from the deck that forcibly made him an honorary member of society's 'we-aren't-going-to-expect-much' club. But, hot damn, aren't you a cutie?!

Bollocks. Infinite bollocks. I expect much. I expect a hella much. And so does he. Of himself. Of the world.  He is full of beans.  He is full of total, pure, true grit, pilgrim.  You may call him the Duke.

So, what cards? These cards? Pfft.

And then - like everything else he gets his chubby little mitts on - he chucks those cards on the floor, flips them the bird and stands ten seconds longer than the last time.  Ten seconds longer before the next side-shuffle, the next lopsided balance, the next fall. Giggling at the fun of it all.  Just like every one of his peers, in the feat (pun firmly intended) of standing and trying to figure this walking thing out, the fearlessness is astonishing. My pride so all-encompassing I must be on the very top of the hefty sinners list, but them's the breaks. This is my boy.

This is my hero.

He can't stand unaided yet but no one seems to have told him about it. And HANG on. He is supposed to be floppy. And lazy. And weak. Right?

(...take your stats know the song by now)

And the last meeting with the health visitor, foolishly still trying to convince me there are people in the so called medical profession who can draw this ability out of him sooner with their superhero magic powers. Sorry lady there are no X-Men employed by the NHS.  No sorcerers.  No ancient juju priests with magical walkie walkie spells made of deer antlers and buffalo sweat and corn cobs.  Rukai will do it, like he will do everything else: on his timetable when he is ready to, with the aid and stimulation of his family...those of us who know and love him best. That is all the magic he needs. Now, again, please go.

But before you go, bring some cheese. Yes, cheese. Because although they are his ultimate snack of choice, our intrepid hero is a master at pulverizing Babybel wheels. They have no chance. Half shoved in his mouth, chomped on with his eight-teeth-on-top-and-one-on-the-bottom funky Rukai dental configuration, and the rest pulped and unceremoniously hurled on the playmat. But I can't let half of every wheel go to waste, so I pick up the pieces and I rebuild the cheese.  I rebuild that cheese and I hand it back to him.

Like I have rebuilt my heart, and my hopes, and my world, and handed those back to him.

After the people who arrogantly positioned themselves as 'in the know' began to prove that they really don't know a damn thing.  I can read too, old bean.  Nicely played though, if not us, at least you've convinced yourself.

We fall down and get back up.  Like Rukai.  Just like him.  Is he different from 'ordinary' people?  No.  Is he 'less' in any way than 'ordinary' people?  No. 

Get up.  Get up.  Rise up.  You rise up.

I could learn a hell of a lot from my son. Can't wait for the next lesson.

Saturday, 22 June 2013

Just hold on and run, you're on your way.

I should start with: I ran the whole way.  At one point I was doing a magnificent scream/growl combo but by god it got me up that hill.  Not 'that' hill, mind you - which I last saw at about 5.5k - but an entirely different 'that hill' they chucked at us past 8.

This hill-type configuration wore fangs, and carried a pitchfork and attacked me with snakebites to the calves.  I scream/growled the entire way up that bastard, at one point trying to encourage another runner in equal agony that it's ok, this is why we're here, let's kick this hill's ass.  I ate up that hill with my lungs screaming and thrashing and banging on my face to stop-please-stop-good-grief-what-must-I-do-to-make-you-stop.

But I didn't stop.

I crested the hill grinning.  And I ran the whole way. 

10k.  Up and down hills, across grass, through mud trying to suck my shoes off.  I implored myself to dig.  Then to dig deeper.  And I passed people.  If there is anything that fills me with even more pride than merely finishing having run the entire time, is that I trained hard, I paced smart and I passed people.  Lots of people.  All those people who started way too fast, thinking they could conquer mountains when they hadn't yet beat the hills.  Slow and steady wins the race.  Oh yes.  And so true when it comes to this battle against the big C.

It is entirely why we were there.

I hadn't trained on the route they took us across, so good new sightseeing all around, particularly on the bit where they mis-directed us some 200 metres.  I smiled through it because there I was.  It was the day.  I worked so hard for this day and there I was.

Nearly choked on my tears then, and a few more times thereafter, but then a great line in whatever song was playing would grab my feet and pull them on.  One particular burst of energy I owe expressly to Big Head Todd, '...just hold on and run, you're on your way...'  Thanks man, I did.  I dug deep, I climbed, I scream/growled, and once I hit that magical 9k marker - the all time farthest I'd ever gone - I asked Dad to run with me.  I asked that young Dad, that soldier, that strong healthy 19 year old to run with me.

Oh and he did.  We rounded that final corner to the awesomeness that is Peter Gabriel's 'Shaking the Tree', just impeccably timed.

The next song started.  I saw '500 metres to go'.  I was already fist pumping the air, so seriously jacked up that I'd done it.  500 metres and I'd done it.

I saw people cheering.  I saw it through the tears welling up in my eyes.  My legs saw to it to provide me with my best sprint and we ran like we had wings.

We did.  Dad's.

I am so grateful for the support of all my friends who have cheered me on and sponsored me on this adventure.  I will never be able to repay the gratitude to my niece and brother in law who not only watched Rukai while I trained and while I ran but managed to capture what are very very precious moments for me on film.

A few months ago I saw Cancer's horrendous power take my Dad.  This morning I ran my ass off to try and help take just a little bit of that power away. 

As they say, there is strength in numbers.  Between hundreds of us there that day maybe, just maybe, we will have done just that.


*Cancer Research UK's Race for Life 2013, Finsbury Park, North London