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

Wednesday, 12 June 2013


It is not possible to spell the sigh I have just exhaled but 'huuuhhhhhhhhhhhhhhhhhhhhhh' may do it.

First of all I am so triumphant I could spit.  Because the issue at hand on this particular day in the year of our lord 2013 is that my dear boy is going quite swimmingly in the brainbox department.  Developmentally disabled?  Perhaps in the shoulder girdle but not even close between the skull bones, you knuckleheads.  Not even close.

The issue at hand on this particular day is that Master Squidge has the fully functioning developmentally accurate brain of a 16 month old but the upper body physicality of a child half his age.  This, friends, is freaking exhausting me to the point of tears.  But so so many happy ones lately I cannot begin to tell you.

Ok, maybe I CAN begin.  But you better sit down, pour a glass of wine.  Fire up the grill.

Hmmm maybe not the last bit if you're in England.  The weather is pretty developmentally disabled over here.

That said, let us make a list.  These doctor types like order and boxes, so hell, let's throw them a list.  I'd like to throw them a left hook, but a list won't scar my knuckles.

Right.  So in the past two weeks, Rukai has developed so quickly my head is spinning.  We can now clock:

> two teeth finally erupting which means chewing.  Chewing.  Halle-flippin-lujah, pack that sludge away and break out the barbecue ribs.  Ok, maybe not yet, but bread is now on the menu.

So we go to:

> eating a cookie unaided
> sampling a fish finger and going back for more
> sampling water from a cup we are sharing and now flat out tantrum when I give him a bottle
> pulling up on a toy, pulling up on my neck and bouncing in my lap just holding on to my shoulders
> aided steps across the floor
> loading up that ball-tower thingy and rolling those suckers down oneafteranotherafteranotherafteranother
> playing (rolling) catch with me
> jumping up the growth charts (DS and 'ordinary' from 50>75 centile and 9>25 centile respectively)

And he's chucking everything on the floor.  Hide the glass, pocket the phone and don't let his hands near that plate of spagh--- shit, good thing that carpet is red.

I have started calling him Shoe-dini when we go out because footwear just magically disappears wherever he sees fit.  A few weeks ago I was doing a Race for Life training walk en route to the grocery store.  20 minutes in, we walk into the store.  I look down.  The sandal is gone.  We re-traced our steps twice before we found it a block away from the shop on top of a garbage can.  Good samaritan I heart you.

Digress-a-roony yet again.

'Only now throwing things on the floor?  My eight month old did that' you may say.  Indeed.  Imagine my angst. 

Imagine my pride. 

Now imagine my stress. 

Here we have a 16 month old going for it with such gusto he appears to be starting to think he can just go and cook a frittata and win an F1 race just because he's got some pointy teeth buds. He now gets seriously pissed off when he can't physically do something his brain is telling him he's fully able to do.  Because he feels as his parents feel for him.  Good boy, you can do ANYTHING.  Go for it.  He goes for it.  He falls, bashes his head, scrapes his cheek on the rug, can't pull back up, screams blue jesus at me to straighten him back up and does it again with the same result.

The ferocity of the way this child attacks every skill moves me in a way nothing ever has.  He is so determined, so stubborn, so much like me.  I am so proud of him.  I wish you could all have one of him.  You would say as I do: 'A problem?  This child is a problem?'

No.  No he's not.

'What low muscle tone?' says he.  'I can do anything.  My mommy says I can.  My daddy says I can.  I. Can. Do. Anything.'

Yes you can.  Go.  Do.  But please dear god, do it after 12 hours of sleep so I can crack open that bottle of red.


Now back to that huge sigh.  Why?  Daddy is away.  For two weeks.  That may as well be two hundred years.  This single parent thing is enough without looking after a child who thinks he's got the capability of a five year old but the physical ability where he's at.  I'm completely used up, because I cannot rest.  Not a lick.

In the past few months, we have come to the conclusion that due to the level of stimulation Rukai has (and it's pretty constant, 24/7 when he's awake) his brain is developing just fine, despite his physical limitations. When he wants to do something he is physically unable to do, he screams (or becomes Crabapple Joe as I have now named him) until you get him into the right position where he can work on his newest thing.  And he works like a miner.  He grafts like a jobbing actor.  He brings himself to the very limit of his ability, to the point of total exhaustion, like a prima ballerina.  Then he sleeps like the dead for 12 hours a night.  I cannot tell you how much I adore his fire.  His grit.


His support network is a fixed number yet it is endless.  Because there is always someone to interact with him, to show him, to teach him, but more importantly to let him teach them.  And believe you me, Rukai is the teacher here.

But he is not slowing.  And he will not stop.  And nor will we.

Friday, 12 April 2013

Racing for life.

I saw an ad for Cancer Research UK's Race for Life about an hour before I registered. The people in it were pretty much telling cancer to piss off. That is how I feel.

That is how I was inspired.

I was inspired to do this in memory of Dad. No better time? No. None.

Yes, Race for Life is a girl only event. No, Dad is not a girl (although he did dress like one in a play way way back in the day but that's a different story altogether).

But Dad DID help make me the girl I am. Take no prisoners. Say what you mean and mean what you say.

And I say this: Cancer, watch your back. You took a special one and I don't forgive you. Too bad. Don't let the door hit ya.

Let's run.

Support me and Cancer Research UK here:

You can donate in eight different currencies, so why not, eh?!  x  (

Sunday, 7 April 2013

I was that joyful day.

It was exactly one year ago today. The elder's long journey over the water just concluded, the younger's mere two months' experience in this thing called life, they gathered in my kitchen and eyeballed one another, truly, madly, deeply for the very first time. Dad, that generation who created me and Rukai, that who I created, saying their first 'how do'.

We stood between them and marvelled.

I burned me a big memory that day. Golden and shiny and wrapped up in Dad's 79 years of waiting to say, 'well shut my mouth and call me Gordie Howe, THAT is my grandson'.

How do, little man, how do.

He waited long and long and long for that day. I have loved few days as much. And here, one year on, that day pinches me across the face like an out of town aged aunty with cellulite and blue hair and halitosis.

Hello. Remember me? I was that joyful day. Do not forget me. Never forget me. I have gone and so has he.


One year ago today. And here we are now, three days from the 9th of April. Three days from 'damn, my father has been dead a month.' It is all I can do to just keep breathing.

I am so thankful for my beloved boy, not only because he continues to be magnificent but also because to care properly for him means I do not have time to sit and think too much. It is the thinking that leaves me helpless, that does me in, for it is then that I am unmoving. Left congealing like cold gravy. So I move, and I mommy, and I live, because it is we who are left behind, to find the way back towards our own 80 years.

Less of this pain, though, eh God? I am weary of burning.

Yet losing Dad has also strangely provided the opposite distraction, in that the ongoing saga of incompetent boobs calling themselves medical practitioners and trying to dictate how we will live has just hopped right on over to the back burner for the first time since late 2011.

To that end, perhaps the greater gift is that now I know just how much strength I have. I hauled it up out of the deepest chasm in my very guts, and my palms bled and I screamed in agony and I wept till I was empty. I had to hurt like hell to earn it, but by God, it is within me now and it will never go.

Thank you. Daddy. Angel.

And still here we have new marvels. Fine motor skills improving at pace and now my dear boy is flipping me the bird some 27 times a day. Old Charlie and his Baby TV numbers are not only totally recognizable to him, but Rukai is trying to copy me counting on my fingers every time the song comes on, looking back at my hands, at the TV, at my hands, at my face. Laughing. 'I get it!' he's thinking. 'They go together!'

Yes, those stats did say he would suck at numbers too. Throw me another gauntlet, I may end up enjoying this.

Dad would be so proud.

Wednesday, 20 March 2013

Thank you Daddy Angel.

Now on my own sofa, tipping back a beer out of my fridge.  The inferno has dwindled but my heart still burns.  There is no Solarcaine for this.  No Neosporin.  Only time, and she is vicious.  I know this.  She has stung me before.

My husband is asleep next to me and the monitor tells me Rukai is his mirror image upstairs.  There are some photos I can look at and others I can not.  Most of them make me bawl.  All of them make me sad.  My Dad is gone.  My heart is broken.  His likeness goes on everywhere.  My son has his exact hair - even looks like a rooster sometimes - and in him I will always see grandpa.  Blessings, blessings all around.

Following what was positively the saddest days of my life, I have had a complete 180 - albeit brief - in a hugely triumphant Rukai-ism this afternoon.  This caused me to cry in equal buckets as last week, but happy tears.  Are they chemically different?  Who knows.  They are wet and they leave trails.  Strange that we have the same reaction to utter devastation and pure unadulterated joy.  What are these emotions?  Why do I feel them so soundly and my other half can give or take them in what seems at will? 

I cannot understand human beings - more so after last week's family drama I will not repeat here - but mystery wrapped in an enigma sandwiched between two nuclear warheads perhaps can define it clear enough.

But back to Rukai, because after all he is what this blog is all about.

I bought him a birthday present for his big day, now what seems a billion years ago.  It's this tower thing with balls you jam into the top and they whirl and twirl down a ramp til they fall into a hole.  When I left, he wasn't sitting comfortably, still.  I wondered how long it would be before he would be able to play with this toy.  I showed him a couple times and he didn't seem interested.  He wanted to lie down, or try to stand.  But sit - no way.

Then I got home.

Late afternoon, work done for the day, I sat on the floor with him in front of me.  He is now very comfortable sitting this way, doesn't seem to be falling over in any direction which is a triumph in itself.  But oh no, it gets better.

I take a ball.  I jam it in the top of the tower.  It whirls.  It twirls.  It drops.  I hand it to Rukai.

He leans forward and tries to jam it into the hole.

First try.

Open the faucet in my head and step back from the pride explosion.

"Oh Rukai, Rukai mommy is SO proud of you!!  Oh my boy!!  Oh my God!!"  I squeezed him, and passed him the ball again.  He lathered, rinsed and repeated.  Grinning ear to ear.  Enjoying it as much as I was.  I nearly keeled over.  And again, and again, and again and you get the picture.

A new angel has entered Heaven and is geared up and ready to watch over our boy.  If there is nothing else that is keeping me from crumbling into a ball and crying myself empty, it is this.

Thank you Daddy Angel.

Friday, 15 March 2013

When goodbye is Goodbye.

I flew home on the 27th of February to visit my terminally ill father and to say goodbye.  An hour before I was to leave for the airport, while I was at his apartment, he passed away.  Today we buried him.  This is his eulogy.

I began writing this while seated in the dark, after the power went out at our hotel.  I was surrounded by unfinished business.  On my left was a stack of blank CDs waiting to be burned with the appropriate music.   On the right was a bible waiting to reveal the appropriate verses.  I was juggling vast pieces of the great puzzle I have found myself working this past few days.

This puzzle is called 'The Life of Gene Sinda'.

I was wondering how on earth I can tell the story of a man's eighty years when I have only been privy to forty one of them?  And I honestly do not know.  But I will tell you what I can.

Mom was quietly snoring, having exhausted herself working this puzzle with me.  A couple nights ago I saw her dance with the memory of Dad, her arm on an invisible back, twirling around and around the floor in that awkward quirky way he used to dance.  We laughed ourselves weeping.  To Dad.

Anyone whose seen him dance knows that Dad was a terrible dancer.  Despite the fact that he used the illusory nickname of Gene Gene the Dancing Machine, Dad was just a horrendously bad dancer.  But Dad was an awesome dancer.  Because Dad always did that great thing they call 'dancing like no one is watching'. 

For a numbers guy, his ability to count time to music was abysmal.  But he always just moved how it felt right.  I got to experience this on more than one occasion - and as a child the safest way to do this meant I stood right on top of his feet and held onto his hands for dear life.  This really was the only way you could follow him on the dance floor.  Of course in later years, it occurred to me that this task was much easier if you had a beer or two in you.  Live and learn, as they say.

I think Dad's character traits that will most stick with me are that he was eternally young at heart and that most of the time, he just didn't care what anyone thought of him.  This of course brought him his share of trouble but it also meant that he was one of the most free spirited people I have ever known.  High strung like a thoroughbred and stubborn like an old mule, he plowed through the bulk of his life living each day like it was his last.  He just went for it.  And this too is how he died.

There is a passage in a booklet given to us by the amazing Rainbow Hospice that talks about how a person's approach to death mirrors their approach to life.  And this was so true of Dad - he just got straight down to business.  When he was truly ready to go he didn't dawdle.  He wanted to go to God's home from the comfort of his own home.  He wanted to go his way.  And he sure did.

 I was so blessed to have eleven days - one for every year I've been away - to enjoy his company one last time.  And an hour before I was due to head back to my own home he decided it was time to hit the big dance floor in the sky.  I was doubly blessed to be there with him as he left this life.  I like to think he did that intentionally for me, one last father's gift to his daughter.  My heart will forever be full with that gift.

My Dad was never a general in the Army.  Nor was he president of the banks he worked in.  Dad was never voted father of the year with a four page spread in People Magazine.  But he served.  And he worked.  And did the best he could to be a good father.  And for one beautiful year, a good grandfather to my son, Rukai.  He was so worried that his grandson wouldn't know him because he'd be gone before Rukai grew up.  I told him more than once during our last days together that there is absolutely no way his grandson won't know him.  I expect this teaching to be one of my life's greatest joys.

A few days before he passed, Dad said 'you never know how many people love you until you get into this position.'  And those last few days firmed up my belief that there really are angels on this earth.  Angels called Glenn, and Patty, and Wally.  Called Brian the landlord and Doctor Schwartz and Father Collins.  Called Anna and Carolyn and Kim and Regina and Kevin. There is a pot of gold at the end of this Rainbow and that gold is called Love.

Every man has his share of flaws and regrets and joys and sorrows.  Yet every man is loved.  At some point there will be love.  In that we are all here celebrating Dad today is proof of that love.  On this day of one of my life's greatest sorrows, I express to you one of my life's greatest hopes in that Dad and the love we feel for him today will live forever in all of our hearts. 

Rest in peace Pop.  I love you big time dude.

Friday, 8 February 2013

Samurai Sword.

I remember it was a Thursday. There was a gym, and a treadmill, and four TVs. I was on incline setting eight and there were burning quads.

On TV number three, there was a race ready to post. There was a horse. Horse number ten. I remember ten because it is so significant in our family. That we once were ten, then we lost our ten and became nine and then Rukai made us ten again.

Horse ten was called Samurai Sword.

Samurai Sword. Rukai's name has something to do with the Samurai. Too long to explain here but know this made my thighs burn less and my heart race and my brain decide it was dead cert our horse, the hero of this particular tale, was going to blow away the field. Our ten horse, our Samurai horse, would win because Rukai will win in life and that is that.

I remember this is what I decided, on that Thursday, on that treadmill, up that incline to nowhere watching that TV as if I had a fortune riding on Samurai Sword winning that lone race on a sandy track on the other side of the world.

In a way, I did.

I remember post time arrived, and as I powered up that lonely incline, old Samurai Sword, well he just chugged out of the blocks like he had been sat on the crapper engrossed in a copy of Readers Digest and missed the gun. Then it struck him, they're getting away from me here, and he put down his head and he ran like his ass was on fire. But the field pulled away. So far away that our intrepid hero fell clean off the TV screen.

And even though I kept leaning to the right, trying to will him back on screen, Samurai Sword stayed in the caboose end of that race to the bitter end.

But, by god, that boy kept running.


We are tucked in for the night. Rukai is 6 days shy of a year old. Rukai's huge triumph today was grabbing my fingers and pulling up to stand, then bouncing - or as his paternal grandma calls it 'doing the bum shake' - before his knees gave out and he plonked down onto said bum, grinning with glee at what fun it all is. To grow. To progress. To shake bum. To keep on running. Like his ass is on fire.

To fall behind but damn it, that boy keeps on running.

Our little Samurai. Our little dragon.

You go on breathing your fire, my boy. You burn a hole clean through that box they packed you in that cold February day a year ago and you keep right on running.

I fear one day I will positively suffocate on my love.

Happy birthday my son.

Saturday, 5 January 2013

It's just water, dude.

Baby flu.  I haven't cleaned this much puke up since...well...ever.  I thought earlier we may have to lay a tarp across the living room floor.  And the bouncer.  And the cot.  And the...ok, well, we will just have to coat the house in plastic and be done with it.  Coat Rukai too.

Wait, no, no, never mind that, we'll just set him up in the tub for a few days. 

Damn, that's right, the tub brings too much drama.  More later.

Why in the name of all that is good and holy did we lay carpeting in this house?  Oh yes, that's right.  We didn't have a child yet.  But since we want to move we will now be sure to move to a place with laminate floors.  Any carpeting in the new place is doomed, since we will unceremoniously rip it out and chuck it out the window.  Even if it's new carpeting.  Even if it's a balcony window.  On the twenty-sixth floor of a skyscraper.

I've done that with pizza waaaaaaay back in the day but that's an altogether different story.

So I guess I'll need to buy a megaphone.  Then again, maybe I can just precede the carpet toss with a few long shots off the five iron and shout 'fore!' really loudly to any wandering passers by.  Fair warning and all.  That surely must be set rule number four hundred and eight in the carpet toss health and safety manual, fifth edition, for insane puke cleaning parents only.

But carpeting will meet window will meet pavement.  Of this I am certain.  Because as I live and breathe, it is bloody hard to clean puke out of carpeting and I have had enough dry heaving the past 36 hours to last me till I hit the big 5-0.  Thank God I bought all that upholstery cleaner before Rukai was born.  It's the gift that keeps on giving.

Good news is at least I think he's stopped.  Dioralyte, you goddess you.  The blandness of baby rice and porridge.  The calpol/calprofen one two punch.  A cold washcloth draped over his head like a babushka followed by a hefty nap and we are back in the wonderful land of ninety-eight-point-six.

I refuse to translate fever to celsius even IF I live in England.  It's the principle of the thing.


Back to the tub.  Bub snubs the tub.  The tub has consistently scared the shit out of bub.  The tub is one of the hugest stressors in my life.  You'd think I filled it with itching powder.  Or hot lava.  The way he squirms and slipslides away on the gallons of E45 churning through it like a white oil slick.

It's just water, dude.

'Just water,' he thinks.  Then flips me the baby black panther salute and commences the squirmscream combo.  'Take that you washer woman,' he thinks.  'You just TRY and hold me.'

It's not fun.

Bathtime should be fun and it just has not been fun.  And don't even get me started on trying to get that first nappy on while he's damp.  Or wrapping him up in a towel.  When you get one arm in the leg pops out.  The leg in, the head cover falls off.   This is why they invented wine.  I'm sure of it.

They didn't say anything about this in all those baby books.  But hell, at least I know the freaking out is just cos he's just a baby who likes being supported and warm in the tub and not because he's got every sensory issue on the planet.  I know this because it's 2013 and in 2013 I am no longer afraid of what might be.  I am committed to fixing the problems and not over egging the cause because some numpty doctor studied a sheet of stats and puked them out at us.

He's a baby.  That is all.  Pukeity puke puke.  (Take your stats and shove them up your ass!  Lalala.)

So I have been working on finding the solution.  Over time this has meant we now own:

- One adult sized bathtub that scares the crap out of him.
- One newborn bathtub that he no longer fits into but actually seemed to like until about age 4 months.  Damn.
- One newborn plastic bath support that jammed up against his bum and made him cry.  Wouldn't you?  Now don't lie.  Yes, yes, I thought so.
- One bath seat / bath mat combo that he can't sit up in and has ripped, respectively.  And guess what?  It made him cry.
- One chaise lounge-style bath support that was too low in the water to fill the tub high enough to keep him warm.  So he froze every bath and lo and be-flipping-hold -

It made him cry.

So then I'm on Amazon the other day, shoe shopping in the sales. As you do. And I think, 'must find a better bath support to get him stabilized in the tub so he stops freaking out.'  Typey typey type and whaddayaknow I manage to find the very same tub as the first one he liked, in a bigger size.


Are you joking?!  Where were you hiding this when I bought all that other shit?!  It's even made by the same manufacturer.  It's even the same shade of blue.  It even goes well with the little fish bath mat I bought to keep him from slipping.

Hey hey!  It arrived!  I put him in it!  He wasn't freaking out!  In fact he was splashing his arms and having a whale of a time.  But damn it all to hell, he keeps slipping. So one useless hand of mine holding him up and the other doing the one hand miracle wash while eating a sandwich and doing the online grocery order combo I learned back in month one and we are rocking and rolling. 

Just hope he doesn't puke in it.

In other news, baby's first Christmas has come and gone.  We nearly needed a U-Haul to bring everything home but managed to get it all in a giganto-box shoved in the back seat of the car once we removed the seventy-two tons of cardboard and other packaging.

But alas, such a spoiled little man.  Spoiled and utterly and completely deserving.  His smile lit up the room brighter than the lights on the tree.  The videos are priceless.  The blurted laugh on seeing his mister man 'Mr Happy' sleepsuit took the biscuit.  Because when he is in a good mood, he IS Mr. Happy.  So we laughed with him.  We always do.  He is such a light.  Such a shining star.  Such a schmooshy squidge.

Baby's first Christmas followed swiftly by baby's first big honking flu.  Just over one month til baby's first birthday.  Time still rolls. 

Let it roll baby roll.  As long as it's not a roll of carpet.