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

Shoe-dini

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.

Him.

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: http://www.raceforlifesponsorme.org/maxinesindanapal

You can donate in eight different currencies, so why not, eh?!  x  (https://justgiving-charity-support.zendesk.com/entries/22562057-Donations-made-in-foreign-currencies-)

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.

Pinch.

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.