Wednesday, 14 December 2016

It's a long way on a donkey.

In much the same way as frost sticks to the windshield of your car in the winter, negativity finds a way to latch on to you whether you like it or not if you spend an inordinate amount of time surrounded by it. In the first three years of Rukai's life - hell, preceding the first three, go back to 'in utero' - down to all the medical guesswork and gleeful tickboxing we were dealing with, there was little which didn't fill my heart with sorrow, didn't strangle my thoughts with worry. Like an overgrown ivy was that fear, that negativity, and as such it led to poor health for us as his parents. A poor mental state, even poorer vision and all too often a terrific lack of perspective.

It's awfully hard to use peripheral vision from within a chasm.

Whereas some parts of society would have you believe that it is our child, born with Down's syndrome, who was doing the suffering across those years, it was actually us, as his parents, in anguish - not from Rukai, he was a joy - but from having to fend off society and bad medicine perpetually marginalizing our beloved son. From all those conversations centered on what 'he can't' do, where we'd consistently be responding 'the hell he can't, shut up and watch him.'

It's exhausting to have to fight all the time. And horrifying that at some point you actually tip over and get used to the challenge. So like a broken record you find a 'party line' that explains why statistics don't define a life. Pretty sure we landed on something like:

A story not yet written cannot be told - particularly one which you do not own.

It was all so bleak.
We were all so fearful.
And I was entirely too angry.

But that was then and this is now.

Much the same as a blast of garden hose clears out the muddle between paving slabs, in the winter of 2014 we enrolled Rukai into a nursery aptly named Sunshine. And these people could not have been more polar opposite to those eternally dark minded interfering medical bods. Not only did they listen to me, but they listened to Rukai. They watched what he could do, then they said 'ok, what next? How do we go onward and upward from here?' And so too did Rukai, onward, upward. No labels. No negativity, just progress.

We went from medicine to education.
From darkness to light.
From fear to joy.
From negative to positive.

And there, that simply, you have it:

Medicine searches for problems and seeks to correct a person's disability.
Education searches for potential and seeks to unlock a person's possibility.

I know where I want to spend my time.

And that Sunshine? Well, it was the very bridge from the one to the other. And just like that, I am not so angry now. Because now, we are HERE. Always moving. Relentless forward progress. Slowly but surely we arrived.

Maybe I'm too tired to be so angry. World-weary it was recently said. Physically knackered. Mentally used up. I'm looking at the calendar ticking off the final days in this year of amazing physical challenges that included hundreds of training miles run and two marathons. I've no idea where the mental tenacity required to get through one of those races came from, let alone two.

Then again, maybe I do...

When Rukai started primary school in September I knew things would be good in 'big school' but I had no idea just how much. A head teacher with practical experience of Down's syndrome. A ridiculously inclusive school with the most amazing staff. And full time one to one support has meant Rukai has enough guidance to help him engage with the other children while progressing in his learning at his own pace. In that his support knows Makaton is an amazing blessing. In that I know she 'gets' him from a very base level is making me cry as I type this. I could not have possibly asked for more.

Yet, still I got more.

Yesterday and today, I was able to watch him in his first school Nativity play, the incredibly sweet 'Born in a Barn'. He stood (and sat and stood and sat) with all his peers, participating in his currently unspoken way, yet bursting with communication via Makaton signing. And he signs like a BOSS.

I wept to see him doing so much more than I was led to believe he would be able, from way back in that frozen hospital room as I tightened my arms around him to protect him from those equally cold, white-coated bringers of misery stood before us. I expect to see him do amazing things now, but that doesn't make it less moving; probably quite the opposite. Every milestone is Everest.

That is my son up there.

My son. My sunshine. My Rukai, in his school play. Included completely.

And the play ended. And they all stood. And in unison, they began to sing We Wish You A Merry Christmas. But they weren't just singing...they were signing. They were all signing. Every last one.

By then, this hard, old, world-weary mom was weeping herself dry.

You see, I also cry when I'm angry. But I'm not so angry anymore.

It's a long way on a donkey.

_____

"It’s a long way on a donkey,
It’s a long way to go,
It’s a long way on a donkey,
It’s a long and winding road."

- From 'Born in a Barn'

Tuesday, 22 November 2016

Die hard.

I have walked in the rain.

Water as drizzle, as mist, as spittle. It merely taps on my skin, only damp, nothing menacing or pressurized, nothing harsh or vigorous. Drip. Drip. Drip.

Hello.

I have run in the rain. Water as torrent. The back end of hurricane, having raced over ocean and mountain range, lashing and whipping its ferocity, rendering eyeglasses so wet they needed removing. Half blinded, soaked, ravaged. I ran.

But the sun...

The sun - oh, it has boiled and roasted and baked and burnt me. Made me faint. Made me freckle. Made me blister. It set. That sun. Our sun.

Our Son.

The Son, he has shone. He has glistened and warmed and enlightened and risen and fallen. That Son. Ours. Everyone's. Life's.

Shining. Shining. Shining.

The earth. She. (Why She?) She has absorbed both water and fire. The planet has embraced and fought off the onslaught, that rush of runoff down gullies and straight back to the sea. That sea of Everyone. Of Everything. That sea of yesterday and tomorrow. The earth. Our earth, from which grows both the flowers and the weeds. Those blossoms feeding the bees which make all of our survival possible. Those weeds which choke.

Those weeds which choke.

The earth. This earth. Our grounding and place and space in time. Mother earth.

She.

Survival of the fittest means, what? Exactly, what?
What is 'fit'?
Is it physical? Mental? Spiritual? Emotional? All of these?

Four and a half decades have taught me that each is heaviest in value to some.
To the athlete, the physical - speed, grace, lift, rise, success. Winning at all cost. Glory.

Glory.

To the scholar, the knowledge - the books read, the history, the supposition of what all the tomorrows mean. The Knowledge.

Glory.

To the priest - the love, the compassion, the stories and learnings. The purity of soul, to repent for sins of the fathers. Of the mothers. Of the ancestors. All of them.

And in penitence, still greater Glory.

To the empath, that understanding. That yearning to wear those shoes. That need to feel. To be. To LIVE.

The greatest Glory of them all.

And we, Humanity, we are all of these. Yet one does not know the other. May not care to know the other.

We, Humanity, are so flawed. So splintered.
We, Humanity, are losing. Because we are against ourselves. And we are against ourselves because we remain too far within ourselves. Too engrossed in 'me'. When you look back at what is the greatest motivation, it most always starts from within.

We are born soft, but we die hard.

Like the pick of an ice sculptor, chipping off shards of the solid to make something which has only risen from her own imagination, we chip away at life until we shape what that meaning is for us and us alone.

And in the end, it really is us. Alone.

I have walked in the rain.
I have run in the rain.
Some days I make the rain.

Some days I am the rain.

The irony of this life is not lost on me. A bullied kid, moved country, became an immigrant, married to an immigrant in that country with whom I created an amazing little boy. This heart on legs, this warrior, this firestarter, this raging flood of possibility. This boy. Our boy. Society's 'problem'.

Our world.

Is it any wonder that we will die hard?

To people everywhere, there are flaws in us all.
Immigrants.
Ginger.
Asian.
Disabled.
But we are life. We are perfectly imperfect.

Our own trinity. Our own story. Our own rain, and sun, and earth, and moon, and stars, and planets and universe and oceans, and life, and history, and future.

"I am a part of all that I have met," said Tennyson.

We are all one, yet so separate.
Soft.
Hard.
Somewhere in between. Ebb and flow. Rain and fire and earth.

Life still rolls, and with it - so too do we.

Friday, 11 November 2016

Liberté, égalité, fraternité my ass.

The world has gone absolutely mad this week. This beautiful video aimed at taking away some of the worry that future parents of kids with Ds may have, has been banned from broadcast television in France. Seems two women who terminated their pregnancies couldn't face up to their choices and have used their guilt in an attempt to quash our ability to express our joy.

And now I'm furious.

There is little that is more offensive to me as Rukai's mother than hearing about people who abort their pregnancies going on to weep about 'losing their baby to Down's'. Because the fact is, unless there was a catastrophic birth defect involved, they did not lose their baby to anything other than fear. To anything other than their inability to cope with the idea of having a disabled child. To be entirely impotent in facing their truth. I find these types of people so weak. So shallow. And this has all just gone well beyond the pale.

Choice is choice and I completely agree we should be allowed to make them. In no way do I judge anyone for having made such a choice. But if you cannot own the choices you make, if you cannot admit that you just didn't want to have a disabled child, you cannot admit that you just can't face putting in the bit of extra time and care and you cannot admit that you just don't want to have to change your path to focus that little bit more on any other human being than on yourself, well then frankly you are a pathetic coward. Own. Your. Bloody. Choice. Done mincing my words. Done. I don't care a dot if you've made that choice. It is yours.

Own it.

I'm so tired of playing nice to avoid upsetting other people. I'm upset too. My feelings count too.

Just as much as theirs do.

He's not yet five and I am already sick to the back teeth of constantly fighting society for Rukai's right to exist. I'm fed up with constantly having to live on the defensive. If there is anything tragic about having a disabled child, it is precisely that. The rest is not the disaster most of the rhetoric flying around would lead you to believe. My son is difficult sometimes, true. But he is also a four year old boy. What peer would be a constant angel? None. Zilch. Rhetoric is dangerous, as we've seen so often in the news this year. I've said it before and I'll say it again. Don't believe everything you read.

What people like this pitifully biased council do not realize is that this type of thing only energizes people like me more. We will not quit. We will not back down. We will not go quiet. Try us. Try us. Try us.

In the end, it is you who will lose.

Because despite your every effort to make us cry into our pillows at night instead we smile and play and laugh and dance our way through our day. We argue and shout and discipline our way through our day. We fight and champion and shape and nurture our way through our day. We teach and we challenge and we live without regrets through our day. All day. Every day. How dare anyone try to put a muzzle on our joy? We will talk. We will bark. We will howl at the bloody moon.

You will not shut us up.

The biggest sorrow in my life is actually that there is a huge number of people on this planet who don't have the first clue just how 'typical' - or using their favorite word, 'normal' - this life can actually be. The prospect of it once scared the everloving shit out of me. But the only thing that scares me now is what close-mindedness we are up against, all day. Every day. And what that will mean for Rukai when he grows up. It's not his ability I'm worried about. It's society's.

Liberté, égalité, fraternité my ass.

But fear has yet to stop me from moving forward. Onward we march. Upward we go.

Here's the clip.
Here's an explanation of the decision.

*Opinions in this post are entirely my own and not representative of any other individuals or bodies.


Thursday, 11 August 2016

More than a catch phrase: why real inclusion matters.

"Can I help you with something?" 

I wouldn't have said anything, but I spotted your friend pulling a face before you whipped around to stare at my son for the second time. The tone of my voice was far more reasoned than if you had not been a child. Had you not been a child you may have heard the anger in my heart. But you were only about 12, if that. It really was all I could do to smile, but I didn't want to frighten you. I wanted to educate you.

Pretty sure I failed.

You nervously shook your head, your eyes wide open, realizing you'd been caught out.

"Is there a reason why you're staring?" says I. Same tone. Same smile.

Same response. Then you turned back around and finished your lunch, the table quieter around you now. No more faces, no more words, no questions, no head shaking, nothing. Maybe it surprised you that another demographic who's perennially jeered was standing up to you. This redheaded mom and her boy with Down's syndrome. No, honey. We don't just take it, we address it. So sorry to burst your bully bubble.

I looked down at Rukai. My sweet, innocent little boy, just having something to eat on a sunny summer afternoon. And you had to go and bring in those clouds. I look at him and see only a child; one who is loved by everyone who has the fortune to spend any time with him. A child with quirks, with needs, with emotions (yes, some being anger and frustration). With hopes and disappointments just like any other kid. But you, and so many others like you choose only to see (worse, to define him with) a genetic condition which only makes him learn a bit slower.

This happened a few weeks ago but is still very much on my mind today. I wonder where you go to school. I wonder who your classmates are. Do you have any kids with special needs in your class? In your school? Anywhere you've ever been? Your reaction tells me not many, if at all. What a shame. What a loss. What a missed opportunity.

And here you've been on earth a fair few years. Here you should have had many a chance - like Rukai's preschool mates have had - to interact with a child who learns differently, who moves differently, who acts differently. To engage with him and only know him as Rukai. Because he is Rukai. He is not someone for people to toy with. He is a human being and he has a name. He is Rukai.

I wish you would have replied when I asked you those questions, I really do. I wish you would have actually wanted to know, to understand. But your fear and your reluctance told me otherwise and really made me sad. Because that fear and reluctance would not have existed had you not been mocking him. I know this because there have been so many other kids your age who've approached him, waved and smiled, fist bumped, high-fived, you name it. Those kids get it. Because those kids are not being ripped off by society - those kids are lucky to have inclusion as standard, in their schools, in their clubs, in their neighborhoods, maybe even in their families. They know kids like Rukai because they have been allowed to know kids like Rukai.

And although many in this very strange and skewed world would look at us and feel pity - they of the downward-angled smiles and furrowed brows which say more than their words could possibly define - it is you for whom I feel pity. You are being denied by society the most beautiful of freedoms which is to live and let live. Get to know one another. Share ideas. Share joy. Share love. Grow.

You whipped your head around to stare and as I was reacting I thought of all those who haven't. The restaurant server who brought Rukai an early bowl of chips before a late meal because she didn't want him to be hungry much longer. The retired doctor who stopped for a high five as we were checking out of a hotel, then offered to return our luggage cart so we could be on our way quicker. The little girl your age who stopped to play with him in the sand pit, returning later to introduce him to her friends. The dozens of people in dozens of other restaurants on dozens of other days saying hello, smiling, enjoying his very existence.

I chose to remember them.

I once thought reactions like yours would be in the majority. Ah, but they aren't. And this gives me hope that maybe - just maybe - all the advocacy out in the world is starting to chip away. It's like digging the Channel Tunnel with a teaspoon but we keep on digging. With bloodied knuckles and throats ragged from the constant dust, we keep on digging.

I am so sorry you haven't been given what those other folks have. I hope as you get older you don't continue to be stripped of that opportunity and instead you are allowed to live in the world as it is, rather than the world as it is imagined. Because that ableist, virtual reality where people with disabilities are locked away as something to hide, as someone to fear, is not Truth.

We don't hide around here. And we are certainly not afraid.

I hope that one day inclusion becomes more than a catch phrase.

I hope that one day disabled people no longer have to scratch and claw for equal opportunities to access education. To access all of life, not merely what they are allowed to access by those who choose to live in darkness and pretend we are not a society of mixed ability on every level.

I hope that one day you tell your friend to stop pulling faces. Tell him that we are all different and that bullying is evidence of a dark heart. I hope that you don't whip your head around to stare but you turn around to smile.

And when someone asks if they can help you with something, I hope you say "yes. Educate me."

Sunday, 17 July 2016

It's time to go.

60 minutes. One hour. A solid hour. How can something so solid be made of sand?

There was focus and intent.
There were teeth grinding and spoons and buckets and scooping and pouring. For sixty minutes.

I nearly keeled over.

I knew he loved the sand. I mean, I'd seen a bit of it - we'd bought one of those tables but it kept getting drowned by that weather event they call 'UK Summer' (which looks more to me like pissing down rain, but beggars can't be choosers). That sand was played in, but not like this. Nothing remotely like this.

A fair few months ago yet another woman entered our lives for a different purpose altogether and with no business nor qualification suggested we go test for ADHD because Rukai was 'a bit whiny' compared to his peers and didn't focus well on tasks. But wot hey last time I checked, no child with an attention deficit could sit and engage himself with sand for an hour. So there there lovey, off you go, you of the silly person brigade. Take your suggestion, crumple it up with a slab of toilet roll and flush it away, along with my opinion of you (if it can catch up, because that's long gone).

You, too, were wrong. I see a pattern forming here.

But back to today.

Sixty minutes. I may as well have been invisible. He's never sat in solo attention to anything off screen for so long, always wanting to hang out with me, clinging, looking for direction, for suggestion, for a march or a dance or a different episode of Mister Tumble on the box. And as much as I treasure my time with him, my heart has been desperately seeking evidence of his imagination brewing. Great savory chunks of that magical 'pretend play' have eluded us for so long.

But as the time ticked away, me sat there watching him shine, beneath a golden ball doing the same, high above us, here in this thing they call 'Summer' sure as caterpillars eventually grow wings, he sprouted a pair all his own. They were electric, and glittering and too bright to watch but I stared anyway. Gods be damned, I stared and stared.

I imprinted that slap bang on to my retinas so I could pack away that memory beside the rest.
Those memories which explain 'yes I can...you watch me.'
'Yes I can. Yes I am. Yes I will.'

You watch me.

Sixty precious minutes in another one of these fleeting days. These days which are all shockingly short. These days which are dwindling here within that final countdown to 'Big School'.

There is no one ready for that around here.

My heart is in my throat and at the same time below my feet. I trample it daily. I am so afraid for him, for us - that he is not totally ready, that he may be treated badly, that he may be squashed into a corral when he should instead be set free across a wild, grassy range. That he may be marginalized and underestimated and limited. My son is going to start school in under two months. And here I'm only recently elated he's sat for an hour to play in the sand. I'm elated that I've seen his pretend play hit stellar heights all in the space of a few days. From a stint on a local 'beach' earlier this week to this morning's amazing bit of longer play in a half-assed sand pit before brain said 'holy shit, go get a better one, stat - this is important. Just WATCH him think...'

So we went.
And we bought it.
And we set it up.
And he played for an hour.

Why have I only just jigged this?

What else have I missed?
What else will THEY miss?
How in the hell am I going to keep all the communication open enough to enable identification of the passion points? To know where he wants to go...

...if he still cannot speak?

It is on this point which my heart is skewered, every. single. day.

We came in from the sun to dinner. He ate with fervor and there was his favorite show before him. To entertain while I got some head space. Screen time is a necessity in this house. Some lives must have that offer of head space. No shame in this house. Think otherwise? You try living here.

Then the table is pushed away, and now cleared up he takes my hand. No words, but pulling me to the giant drawing pad he's set on the floor. Looking in earnest at the box of pens, I pull it out and he roots around. We work the cap off together and here I draw a circle. This is maybe replay number three of the circle-drawing thing but it hasn't dulled the shine because we are so very much just getting started. He takes the marker off me, touches it to the paper and then he's off.

Round and round and round. That IS the circle of life. That IS everything.

He's done it before but I'm blown away at the fact that I'm seeing him remember that it's something we've done before...I'm seeing depth of understanding and the attribution of purpose to what he is doing.

And I haven't said a damn thing. I just drew a circle.

But there is meaning. This is not scribble.
There is intellect. This is not clueless.
There is ability. This is not hopeless.

There is Rukai. This is not Down's syndrome.

This is Rukai. Drawing me some circles.

So many suggested he wouldn't.
I want to bring him to face them with a pen, to circle them as if with shame.
Look at me! Look what I KNOW! Look what I can DO! Look who I AM!

Look.
Shut up and LOOK.

My mind today, too, is racing in those circles. Round and round.

School coming.
Late milestones.
So much to plan.
So little time left to be 'just us'.
My heart is breaking yet my heart is soaring.
I don't want the time to take my little boy from me, but then again it's not really time taking him away, it's HIM taking himself away. Ahead. Forward. Upward. Onward. I am just a conduit.

And these feelings, like all those other deep emotional experiences I've lived in these short four point five years, these too are just like everyone else's.

A child is born to a mother.
There is love.
A child grows and develops and learns and thrives.
There is love.
A child becomes. A child exists. A child IS.
There is love.

There are so many wishes I have for my son as these days dwindle and our last summer as 'just us' moves further behind before it eventually drops away.

"It's time to go." They said it at the end of the Night Garden show and I burst into tears.

"It's time to go."

So my son, go. But please always make sure I know where you are, and remember I am always here.
Even one day when I am not.
I am always here.

Rukai, I hope that your life is kinder than the world is.
I hope the goodness in you draws goodness TO you.
I hope you know you are my world.
I hope the world knows you ARE.

And you are Rukai.
In sand and in circles and in my heart.
My son. My every wish. My pride and my morning and night and the flame that lights up my soul.

Fly, little man. You go on and soar. Dream big.
I could not - in any plane of existence - be more proud of you.



_____


Brilliant blog posts on HonestMum.com

Tuesday, 12 July 2016

From that wound, red.

In 1955 there was a bus. And a woman named Rosa Parks. 1955. 61 years ago. There was a bus and a woman who said "stuff your stupidity, I'm tired, and I'm sitting here, and I'm not moving."

Someone put her in jail. For sitting in a seat. Someone forgot that we all bleed red.

In 1963 there was a man named Martin. Martin may have been a white man's name but not this Martin. No. This Martin was a black man with an enormous and beautiful dream. Of equality and brotherhood and peace. A huge loud dream. A simple quiet dream.

Someone was so afraid of equality that they shot him dead for his beliefs.
From that wound, red.

We all bleed red.

A hundred years prior there was a man named Abraham, like that name from the Bible, that great text held up before us as the word of God, the code, the creed to which we should all operate. But this Abraham was called Lincoln, he of the stovepipe hat and the original, yet now dead lost, Republican party. This Abraham said that all men would be equal. That all men should be made free. This Abraham believed too that we all bleed red.

Someone was so afraid of equality that they shot him dead for his beliefs.
From that wound, red.

Those men and those women, they bled.
Those men and those women, they fought for that freedom.
Those men and those women, they rose up and they built lives on the back of oppression. They built lives on the back of hatred and stupidity and cruelty and ignorance.

Those men and those women, they are all my brothers and sisters because we all bleed red.

One of those men became my president.
One of those men has retained his dignity in the face of eight years of abuse.
They call it 'hopey changey stuff'.

He hoped. He tried to change.

But someone was so afraid of equality that they killed his beliefs.
Yet he still believes.
And I'd elect him again if I could.

I am born of white privilege.
I am born of ableist privilege.
I am a woman. With an opinion. With a big mouth, bigger ideas and an even bigger idealism.
I have no room in my life nor my heart for hate.

I too bleed red.
As does my Asian husband.
As does my disabled son.

Red.
Red.
Red.
All red.

And we all weep salt water. Like the oceans between all our hearts and beliefs and fears and disappointments. Salty seas.

But hope floats.

Equality is only a word. Yet some people in this very mixed up, very sad, very traumatized society choose to tangle that word in animosity and scrape it against hope like sandpaper, shredding serenity, scarring righteousness. Without reason, destroying progress.

But still we all bleed red.
Let them feel what they will, and they may never understand anything more than their own hatred and angst.
Born of fear.
Born of self-entitlement.
Born of inability to see the opposite side of the coin and all the red blood flowing through the veins of the world.

There is no cure for the hatred in this world but tolerance.
There is no room for name calling and accusation and hypocrisy. For negativity and pessimism and talk of the sky falling. Unless you see space junk making a beeline for your forehead, the sky is not falling.

Your sensibility is.

We are better than this. Than all of this.
In that there is a need to say 'we must control these weapons because too many innocent people are dying'.
In that there is a need to say 'black lives matter'. Despite our pitiful history, was there ever a doubt? I am so disgusted that there are people on this earth who feel they have to explain their worth. You are my brothers and sisters and on behalf of every white face on this godforsaken blue ball I am so fucking sorry. I wish we could all do so much better.

Some doubt the relevance of that phrase, they try to dilute it with excuses, and that is so pitiful.
Black lives matter. Of course they do. Keep saying it until people get it.
Disabled lives matter. Of course they do. Keep saying it, too, until people get it.
Women's lives matter. Of course they do. Say it. Speak loudly. Roar.

We.
All.
Bleed.
Red.

There is no cure for the inequality in this world but for people to strip themselves bare of beliefs.
Why does it matter the color of someone's skin?

We all bleed red.

Why does it matter the depth of intellect? The number of limbs? A person's mobility?

We all bleed red.

Man or woman?
Man who becomes woman?
Woman who loves woman?
Man who loves man?

Red.
Red.
Red.
Red.

I don't care what toilet you use.
I don't care what God you love.
I don't care whether you wear a bra or a shotgun or steel toed work boots.

I may not agree with you but that doesn't mean you are wrong.
Unless you hate.
Then you are wrong.

Because we all bleed red.

I feel like that Leelu in Fifth Element when I watch the news. The pace, the anger, the horror, the disgust, the fear, the danger, the crisis, the death, the sorrow, it leans and presses and burns and rages and destroys every last bit of serenity I have in my heart. I can't bear to watch the news.

If that's just me, what has it done to you? To us all?

In 1863 an unchaining.
In 1955 a bus.
In 1963 a dream.
In 2008 hope.

In 2016 -

This.

We all bleed red.
Rise.

Please.

Monday, 4 July 2016

Up the hill and into the wind.

As a mother there is probably nothing worse than the fear that you are outright shit at it. I know that fear well. I'm pretty consistently envious of those people who seem to have a special 'mommy' gift - those who instinctively know how to fix everything with a stick of gum, three peppercorns and a paperclip, like MacGyver with mammaries. The ones who make their own paint and teach their kids origami by age 2. The ones whose kids know how to paint the kitchen by 4 and the fecking Sistine Chapel by 6. The theatre-goers, the kite flyers, the lesson driving and duck feeding and paper boat making kind of moms. Not me, I'm pretty sure I'm utter cack at the mom thing. Like I've fallen from the Titanic and just about doggy paddling. But I seem to have on a wet suit so at least I won't freeze. And hell yes, I've got a child to 4.5 without great trauma but...

Then we started potty training.

You can almost hear the game show wah wah wah wahhhhhhhhh sound they save for the big loser. Then again, who's the loser - me or my living room floor? Now endlessly damp and trodden on from me racing to and fro, pottty chair aloft, trying not to spill, racing down the hall to dump it out and back in time with hopes he really WAS finished when he stood up and not just overeager to hit the 436th rendition of the dance routine from the Chessington Penguins of Madagascar Cheesy Dibbles show, all with his bits wafting in the breeze like the day he was born. If I hear 'keep your eyes on the prize' once more I may have to pack out my ears with what's left of the toilet wipes. Then too, if I ever see another toilet wipe again I'll be glad...largely because I keep flinging them to the side like the tape during a Christmas wrapping sesh and can never find the damn things when I need them. And why in the HELL can I not pull one out at a time? It's always a clump of four. And then I tear the packet so it doesn't close properly leaving the next blob of four slightly dried out and useless. I swear someone's hidden a camera somewhere and we're headed for next week's You've Been Framed.

This is entirely for the birds. And there really IS not enough wine.

And there we have young son, that fantastic champion of inclusion and all things equal, who is so utterly typical in this situation it makes me want to cry. And he actually DID make me cry yesterday. But only after he showed he knew he needed a wee, then proceeded to set up the potty, position himself...and piss on my rug. Wa-hey, the glamour is endless! The excitement unstoppable!

The stains, semi-permanent.

But come on now! For the love of all that is good and holy, I've run a bloody marathon! I've done some amazing charitable fundraising. I've been a proud voice for Down's syndrome awareness and disability rights, and equality and progress, yet here I am stagnating on wee. Ah this life, this life this glorious life. This typical life.

Life 1, mommy 0. Life wins. Always, life wins.

I'm knackered just thinking about it. I'm knackered because I've been battling that 'I am utter crap' fear for what feels like forever - that fear which camps out in your head, builds a giant fire pit and starts burning all your achievements, then smears ash about your face and prances around like Keith Lemon taking the piss out of Fearne Cotton. But I stop and look at it and realize I'm not crap. Crap is crap. And everything I am experiencing here is shared, and normal, and typical and every mom from every corner of the world has done this thing...when their kids do their thing.

Aside from feeling like I'm a candystriper who's drawn the short straw and with it, bedpan duty, it's all part of the journey as an old friend once said. The road is truly long and we all share it. Sometimes it's streaming with wee and we can do little but clear up the mess but there we all go forth and by God, we live. We all live the same.

The other day I was out for a run, chugging up a particularly challenging slow incline. I set my tempo and pushed forward, all while pondering this behemoth potty training challenge, and before it the diagnosis challenge, and the family challenge, and my long-ago bullying challenge and all those life challenges that had brought me to that very hill, in that very place on that very day. Those rolling hills, those peaks and troughs, just like life. All of life. I realized that in any life worth living we are always headed up the hill and into the wind. And never will we see what's on the other side unless we dare to make the climb.

Progress. Baby steps. Climb baby climb. But first pass me another packet of wipes, will you?

Thursday, 2 June 2016

Endangered.

In case you've been living in a shoe with umpteen children with whom you didn't know what to do over the past five days or so, you will know that people across the world are up in arms over the Cincinnati Zoo shooting of an endangered gorilla after a toddler fell into its enclosure. It is a 'damn fool shame' as they say in the old south, that this glorious beast was exterminated so quickly. And it was quick. And it was a shame. Let us begin with that.

But only after a child was tossed around like a ragdoll in its enclosure, twice at that, pushed over, head underwater, permanently traumatized. And judging by the very clear video it sure looked to this parental eye like said toddler was about to get throttled and finished off by a gorilla. That boy will never be the same. Seriously, who gives a rat's gnarled ass about what his mother did or did not do? What the zoo did or did not do?

I care about that boy. He was four. Or three. Believe whichever paper you read.

Sue the zoo! Says the mom.
Stupid mom! Say the detractors.
Did what we had to! Says the zoo.

Believe whichever paper you read.

Who to believe? Expert A or B? The lady or the tiger?

As the mother of a four year old, all I believe is that this doesn't remotely register in my 'things that are ok' file. I believe the right decision was made at the right time by the zoo. The mom made a dreadful mistake in thinking her child was actually listening to her, and the world lost one of fewer than eight hundred members of an endangered species as a result.

(Enter screeching brakes sound effect...)

Now stop. "Now hold it now," as my Pops would've said.

Here's the real problem I have with all of this. The thing that doesn't register and why I have such a rigid and furious opinion about it all. And knowing that I don't bloody write about gorillas you may be ready to hear this. If not, sit down, buckle up and listen.

The outcry includes statistics about said endangered status of these silverback gorillas and how the world is minus one more due to the circumstances surrounding the situation. There could very well be half a million people upset by it all. Maybe more. Upset enough to argue. To 'unfriend'. To be hateful and spiteful and...just 'shouty'. About a gorilla.

Hold that there.
Put it in your cookie jar, your bum bag, your kitchen sink to soak. With the forks and the cake tins and the soggy, greasy old sponges. Soak it up.
Hold it.

Now turn around with me and look outside the Cinci gorilla moat back into the real world.

Come on in. Here is the story you should be shaking your fists about. And shrieking and arguing and unfriending. And if you're not, I am the first one to say shame the hell on you.

If you read me, you know my son Rukai has Down's syndrome. You know he is Rukai first, he is not a diagnosis, he is nothing to fear, to be ashamed of, to challenge, to question, to discard.

He is Rukai. He is a boy. He bleeds red. He feels, he learns, he lives, he loves. He is no cabbage.

Nor am I. Nor are you. In fact he bests me because he tries harder. At everything. And I sit back in awe and in some form of shame.

Yet there exists a new, non-invasive 'supersafe!' pre-natal pregnancy test about to be rolled out in the UK (has been around for zonks elsewhere) which is meant to detect Trisomy 21 (Down syndrome) minus the great big scary (risky!) needle prod to the guts. There are all kinds of shiny happy fluffy names for this test which have to do with harmony, serenity, inner peace, om shanti om-ness, you name it. 'This will make you feel glad you won't have anything other than a perfect child!' kind of juju.

'Fill our coffers with your purchase and we'll prevent your fear!! Terminations R Us!!'

I don't believe in the power society gives to statistics so I won't quote percentages (that's what Google is for) but there are plenty of them dotted about, outlining what this means, those stats and papers and talking heads and all such things which will tell you - by any stretch of the imagination - that this will undoubtedly one day entirely eradicate Down's syndrome.

The NHS - funded in part by my tax money - wants to roll out a global test to eradicate people like my son. This test is already being used as standard in other countries around the world, including my home country the USA.

And you are cheesed off about a gorilla?

Priorities.

My own are an abyss and they are all called Rukai. My views have changed since he came along. Before him, I was ridiculous. I was society.

But society is clueless and society is wrong.

That is a bold thing to say but I am bold now because I know my son.
I know 800 gorillas is a shame but 0 Rukais is a tragedy.
This I know.

There is a test.
People are investing huge sums of money into this test.
Uninformed women are desperate to have this test because they are being poisoned by fear.
Private clinics and manufacturers are counting pound signs for offering this test.
Doctors are recommending this test.
To kill off people who have the same condition as my son.

Because they supposedly have no value.

And the only people upset about it are the select few who know what a steaming pile of fearmongering feces it is. There are more people upset about the shooting of a gorilla than there are who care that people like my son are poised to be erased from humanity.

That they are not valued as human.
That they are not expected to contribute to society. Nothing. Not a dot.
That they have such low expectations shackled upon them they are merely boxed into statistics formed back when the "best solution" for people with this condition was institutionalization.

Because they supposedly have no value.

And they are not bloody THEY. They are Karen Gaffney and Oliver Hellowell and Chris Burke and Madeline Stuart and Sarah Gordy and Pablo Pineda. And how long have you got?

Oh they all have value. What have you achieved today? How high have you reached? Top shelf of the fridge?

Never underestimate the power of the human spirit. That doesn't require a chromosome count, my friends.

For so many, my son's life and contribution to the world is worth less than that of a gorilla. You want to free the gorilla and deny others like my son the very right to exist.

You want to light me up? That there is rocket fuel.

Society has a hell of a lot to answer for. Google the meaning of 'Harambe' and you'll see how utterly ridiculous this all is.


Imagine the doctor looking you square in the eye and insinuating that your firstborn will amount to nothing.

Then see what you do about it.

Just imagine.

Wednesday, 27 April 2016

Relentless. Forward. Progress.

#RunningForRukai
http://uk.virginmoneygiving.com/MaxineNapal26.2

I've been having a whale of a time starting this story and worse giving it some type of order because I am now absolutely certain that there really is no clear starting point and in my head it is not remotely linear. This is attempt number seven. Maybe I'll reach the end this time.

Better still, let's start from the end.

I DO know I've finished a marathon. A MARATHON. My God. ME. 26.2 miles. I've flitted between so many emotions in the past few days I cannot pin down which lingers but pride is usually on top. Close second is pain or maybe irritation. I'll get to that.

I am one in a million (or maybe one in the next million if that's how it pans out). That is no small feat and I feel an entire new shade of technicolor coursing through my veins for that and that alone. What a huge achievement. There aren't words.

No. Bullshit - there are too many goddamn words. Maybe that's been the problem. How to be succinct when you are trying to describe something that really and truly does mean everything to you? When you want to describe every second because you dare not let any of them escape your heart? I want to hold them all. I don't ever want to forget any of them. I want to feel them and live every minute as I lived those six hours nine minutes and eight seconds. Even the pain and the irritation.

Even that.

There aren't words and there are too many words. Which to choose? I will try and only begin with what I know.

I have finished a marathon.
I know there is a man who fell trying to do the same. I know this has made my own story feel so small and I thought about not telling it.
I know when I can run again, I will honor his memory by running 3.2 miles in tribute.
I know that is all I can do.

I know I still want to tell this story because it had a beginning and it had a middle so it has to have an end.

So here is that end. But you know it will only be another beginning. Still. Turn and turn. Skate and loop and begin like spring begins. New life from a void.

I know barring the finish, my favorite moment of that race was rounding the corner somewhere around mile 12 and seeing that beautiful Tower Bridge, clasping my Chicago-flag-covered-head with my hands and saying 'Oh my God, this is so f-ing amazing' the entire way across. I know I kept that up til the bitter(sweet) end.

I know I felt honored and moved for the full 26.2 miles last Sunday. From the minute I woke up, those steps through Greenwich with all the other foot soldiers ready to go to personal war on those streets. From the reception afterwards, the warmth from fellow charity runners and employee friends, gratitude for the fundraising when it is I who am most grateful for the opportunity. The chance of a lifetime to have the time of my life.

To support that charity with those words ringing through my head for the duration - speak of power and intensity and something that drives your feet forward and I will share with you that story. "Tell it right. Damn it, tell it RIGHT". Once I wept when those words came to my thoughts, and then the glory of the moment captured me again and with that renewed purpose sent my feet soaring along down the next curve.

I know the closer I got to the finish, the more my body weakened yet oddly my mind grew stronger and my will more purposed. It was the damnedest thing to actually feel personal power and mental endurance rising. It's as if every footfall was a power charge, revving up my mind for the rest of the battle.

I know I wrote on my arm that day what a dear runner friend suggested I remember: Relentless. Forward. Progress. And I know I had to ponder it well over a dozen times.

And I know just how much those three words helped me.

I know I wanted to stop cold and lie on the floor. Often.
I know I did not.

I know when I finally made that finish line I cried floods of tears in relief for all those days and months I'd feared I'd not make the start, but more so for all the hours in the midst of that 26.2 miles when I feared I'd not make the finish.

I know I did make the finish.

But let's back up.

I know I found an American quarter in my bag the night before and was thereafter without question that my Spirit Pops would run it with me. I know that moment cleared my entire body of tears and I found it hard to stop them falling.
I know hearing Frank Sinatra's 'My Way' over the PA next to the bag check took my breath away and nearly made me lose it again. Dad's all time favorite song then? There? You cannot be serious.
I know I ignored a call from the last possible person on the planet I wanted to talk to the night before my first marathon. I know how glad I am that I did.

I know I screwed up my taper by accepting the offer of a TV interview that never materialized - that full day's worth of house cleaning, on my feet instead of feet up.
I know I'm still livid about that. I know I will probably always be livid about that.
I know me.

(Relentless. Forward. Progress.)

I know I further screwed up my taper by dragging luggage half a mile to and from a hotel the night before and morning of the race.

I know that may have been the proverbial straw. Pop goes the calf at mile 20. Game over?

No.

Relentless. Forward. Progress.

I know I finished that race with a seriously strained calf which felt like two ticks away from a serious tear every time I tried to keep running. I didn't want to lose London but I sure as hell wasn't going to risk losing Chicago. I hated that I had to walk the final six miles.

I do NOT know how I kept going. But walking didn't hurt as much so I did.
Even with the double vision that kicked in, I kept going.
As you do.
I was surrounded by people in worse shape who were still moving.
Such collective power at the back of the pack.
Such human dignity back there.
Such intensity and strength and conviction.
I know I was on my feet three times as long as the guy who won the race.
I may be slow but how bloody tough am I.

I know Blackeyed Peas 'Boom Boom Pow', Coldplay's 'Clocks' and Charlotte Churches 'Crazy Chick' are damn fine power walking songs. Even when you put them on repeat 17 times apiece.
I know I had a perfectly paced top 19 miles until that injury took over and that fills me with ridiculous pride and confidence that my training wasn't wrong. I lost five weeks and I was still well on pace for my original target til the calf went boom.

I know seeing that 'on a yard' sign and receiving those magnificent Realbuzzer hugs below it at mile 22 was nearly as beautiful as the sight of Tower Bridge ten miles prior.

So I finished.
Me and that injury, we made it home. I'd called it cramp but knew it was worse. But worse may have made me stop. Cramp is treatable mid-race. Lies lies and damned lies.

(What if I can't finish?)
That started building in my head.

I required a St John's Ambulance stop, a vicious calf massage and a 20 minute mile. All those people tracking me wondering why I had stopped moving.
(What if I can't finish?)
I required a stern talking to myself.
(What if I can't finish?)
I required angry lip syncing while power walking.
(What if I can't finish?)
I required a whopping motherload of gels.

I am deeply pissed off about all of that.
Because although I had been saying 'I just want to finish, that will be good enough.'
It's just...not. It's nowhere near good enough. I wanted more. I trained for more.
I bloody EARNED more.

(Relentless. Forward. Progress.)

I gritted my teeth and kept moving.
I never did recognize a 'wall'. I may have smashed it to crumbs with anger. Maybe I didn't see it through my double vision.
And the kettle boiled and the steam built up until there appeared an angel tapping me on the shoulder on the Embankment. My fellow Team 21-er, who had also worried in the dark of winter that she too would not make the start due to injury. We'd promised one another we'd walk together if we needed to.

We needed to.

She saved me from my own head and we laughed our asses off all the way down the Embankment. When all else fails, throw jazz hands. Stop and photobomb at six hundred metres.

And then we were at Point-Two where we agreed we'd run. Even that was excruciating.
And we crossed the line side by side. Two in a million. My hands shot up into the air and I threw my head back thinking I did it! I did it! Pops, I did it! I bloody DID it!!
Out of my throat comes this glorious tribal whooping and wahoooing, wild as the crowd at a Blackhawks game, every last ounce of joy escaping before I nearly suffocated on my sobs. Two million more tears.
Never such joy.
Never such pain.
The Yin and Yang of the journey returns for a curtain call at the most perfect of moments.

I will never again have a first marathon and I loved it all. Even the parts I hated - which was only the pain, because I really loved it ALL.

My mind has been a blank sheet for days. I am utterly spent.

I know this all happened but it feels like a dream.
I know I now have a grudge match with 26.2 miles.
I know I will now heal and train even harder for Chicago.
I will figure out what went wrong and banish it forever.
I will run in my home town this fall with pride beyond imagination.
I will run better because I will prepare better.
I will prepare smarter.

(Relentless. Forward. Progress.)

I know I am today equally proud and equally disappointed.

I know I am today a marathoner.
I know I will never be the same.
I know beyond the fundraising, that those two things are exactly what I was after.

Who says you have to descend the mountain once you've reached the pinnacle? I think I'll find a higher mountain and keep on climbing. With Relentless. Forward. Progress.

Like I do everything else.

Wednesday, 20 April 2016

And so it begins.

#RunningForRukai
http://uk.virginmoneygiving.com/MaxineNapal26.2

I said it aloud as I exited today's London Marathon Expo, but I wasn't entirely convinced it was an accurate statement.

"And so it begins."

It. It, being the final journey to that start line and that grand tour of this big, beautiful, old city, on foot. For 26.2 miles.

It, being the first time I've road tested this ridiculous mental iron that has somehow built up inside my head. But I've now thought it through and 'It' didn't actually begin at today's expo. 'It' began in October.

Not the most recent one with those base training miles, either. This particular October happened in 1971.

My mom says I was the loudest baby in the hospital nursery. Yeah, I can see that. I can hear that. It comes out of the mouth of my son when he's on Captain Crabbo mode. For me, that noise has materialized in a fair few different ways over the years. In performing on stage as a kid, those dancing days. In my university degree art classes, just empty the noise in my head, spill feelings from guts on to page and it's *out there* and you can move on from it. Noise, noise, everywhere noise. I revel in expelling noise from my head.

Sorry to all you quiet folks out there.

In the absence of ballet, I silenced that noise with golf for a while. That's some sport, golf. I found it strangely similar to ballet - dead quiet internally, focused on one miniscule thing at a time, and that exasperating ball which never seemed to fly far enough. I kept smacking the crap out of it, had one hell of a drive at one point too. The golfing days.

Still those stopped and that silence was grating. As if someone had taped my soul closed and the noise was about to blow. And the purpose which didn't exist. But the purpose returned and with it came running. Years upon years upon years led to that first run, that first race, that first medal. It's not on display because it's saved with the 'Dad things'. I have a box of those, three years plus on from the day he left us, and I still can't bear to open it. I can't sort through it.

But Dad runs with me. From 'up THERE' he runs. We talk. He's a good running companion, my Spirit Pops, the best there ever was. I picture him hanging out with everyone else I've cared about and lost - family, old friends, ex boyfriends even. They're all there every time I crest this one hill. Sitting at some heavenly bar, Sinatra on the juke box, or maybe Barry White, shot-and-a-beer at the ready, the shot always Ketel One, the beer, if he's thinking of me, Old Style. Gnat piss of a beer to coin the phrase of a great Realbuzzer, but it's Chicago fizz and that's my original home town and so it always appears in this story.

So there I feel them all hanging out, watching, urging me onwards, urging me across the line, raising arms victorious with me, together we rise, we rise, we rise.

We all go on and rise. Life turns.

That life which is a funny old story. Every time you think you know where you will end up you round that last corner and find you are only at another beginning. This beginning says I am four days away from my latest goal, that first marathon.

That first MARATHON. Oh my lord, when, where, how did we get to MARATHON. Pride is a vice but damn it, I am proud. I am proud of myself for not only surviving the journey but embracing it. Enjoying it. Running with a smile on my face. Looking forward to all those miles which hurt but if they didn't make me so much better a human being for having endured them, well then I am a flat out liar and you may slap me around the head with a frozen trout.

I am proud of having those five weeks off ill and charging back into a return long run of 10 miles, two longer than I had planned. Start as you mean to go on. And man alive, so I did. Just like I did in that nursery in that 70s October, screaming until I couldn't scream anymore.

I started loud and I'll finish proud.

Proud of myself, indeed, but mostly proud of the boy for whom I am running. My son Rukai. This wonder of creation who is becoming such a magnificently independent, fierce, extraordinary human being. He came into this life screaming without sound, yet his voice is growing louder each day. I run every single inch for that child. I do not know how I came to be lucky enough to become his mother but my God, aren't I the lucky one.

My Rukai roars, and so too will I come Sunday.

Lace 'em up.
Eyes on the prize.
Dig. Dig. Dig.

And so it begins.

Tuesday, 5 April 2016

And I could not love you more.

To my beautiful son. My best boy.

I'm not sure where I put it but I know there exist a few paragraphs of a letter I started writing you when you had yet to be born. You were growing in my belly, I was playing you Stevie Wonder via headphone in the navel and things were rosy until they weren't anymore. I stopped writing when They started frightening me. I couldn't do anything else but read up. Get ready. Stand tall. Worry.

Love you.

I should've kept writing then, but I guess all of that came out afterwards eventually, and still is. And that's a good thing. It's a good thing because somewhere on this big blue ball hurtling through the universe there is another woman going through the very same. As I type, she types. "What is an echogenic focus" into Google. "Nuchal translucency measurements" into Google. And she reads up and looks for stories like ours. Real stories. True to life stories. Not the ones in the science books filled with old stats. Stats used back when it was the norm to lock people away from society just for being different. No, not that outdated book-learned theory, but actual Fact. She may find a few stories out there.

I hope she finds this.

I stopped writing that letter to you, but I'm going to tell you now what I was going to say then. For four years now I've been telling you to your face, mid-cuddle, at the dinner table, in the car, on the carousel at the theme park, oh I've been telling you. But there's so much I haven't said.

You were and still are my heart. You were growing beneath my heart but you consumed it completely and it beat for you, with you, because of you. It always will. I did not know your face then but I loved it still. I couldn't wait to see it. To inspect your fingers and toes, to listen to you breathe while you sleep. To watch you dream as I was dreaming for you. To watch you imagine the angels watching over you. I saw that all, in my mind's eye. I saw every bit.

I imagined you taking a book up and climbing on to the sofa to sit beside me. But as it happens, you take that book, you climb up and you get into my lap. And we read not side by side but over your shoulder. And that, my son, is where I will always be, whether on this earth, in this life, or wherever it is that we go when it ends. I will be over your shoulder and inside your heart as you are inside mine.

I pictured you walking and jumping and running and laughing. For the most part I have indeed seen all these things. You laugh with wild abandon - a sound that could un Grinch the big green dude up in those frosty mountains, a smile that would melt those snowbanks into a misty river. You are light. You are a star. You are made up of elements like we all are and you are to be gazed upon and adored and wished on, same as any unearthly thing we spot out in the galaxy, out beyond those wildest of dreams. You are. You just are.

I'm not sure what those dire predictions made me expect but I have to tell you, dear precious boy, that you are all I expected before anyone said a word. You just are.

(And can. And will.)

My dreams for who you are, and who we will be together, and as a family with your Daddy, well, those are coming together too. Because there really is nothing that different about you as a son, as a child, as a person who I wanted to have in my life, which is anything other than what I wanted. You are all I could have imagined, all I didn't imagine, and every last bit in between.

You are. You will be.

As it was then in terms of today, there is nothing I can see beyond the here and now other than that which I can only imagine for you. But I see you. Who you are. Who you want to be.

I see your friends embrace your difference, not feel shame because of it but celebrate you.

I see your teachers tell me that you - a boy who does not yet speak - have a great sense of humor. I mused over this for a while because who knew it was possible? No. No - you don't actually need an audible voice to display humor, you just need a light. And my boy, you are light. You shine every minute. The naysayers have not dulled you. They haven't the ingenuity nor the power.

And you, who would have been set aside...you wouldn't feel any grudge. You'd brush it off, like you'd brush off a kid taking a ball off you, like someone bumping you out of the way on the slide because you're moving a bit slower than they are. You take life at your pace. You take life in stride. You walk. You dance.

You soar.

And I could not love you more.

With everything that I am, and will always be - all my love forever.

Mama

Friday, 1 April 2016

Of rice and men.

#RunningForRukai
http://uk.virginmoneygiving.com/MaxineNapal26.2

Mini Coach is out cold in bed, gifting us a 7:30 surrender after leaving the witching hour until just before midnight yesterday. He's usually stellar at the bedtime routine so this was particularly inconvenient, being placed on that special and important day called 'two days before long ass run when you CAN sleep because the night before said run you CANNOT.' Some coach. I want a refund.

He even made off with my resistance band round his ankle (he's probably doing more reps than I am these days) so I had to go back in after Daddy put him to bed.

Yes, BACK IN the toddler's room after he'd been put to bed. (Don't do it! Turn back! Turn baaaaaack!!)

This could have led to disaster but lookielou here, it got my band back and bubba into the land of nod. So that midnight rambling may have paid off in the end.

And now here I sit, happily digesting a plate full of what I'm calling 'deconstructed stuffed peppers' which involves lots of vegetables and tomato sauce and a Cho Oyu sized mountain of rice. Carbs is carbs and unfortunately pasta just doesn't crank up my engine. There I tested this same meal last Friday and lo and behold broke my 1 km, 1 mile and half marathon records on the next day's long run. The long run that was supposed to be 'only' 10 miles (oh my actual God did I just say that?) but I felt I had 14 in my legs (or that?!) These legs which got that unexpected February Fizzle but as I live and breathe, I think that was a total blessing in disguise. To hell with illness, this was niggles-be-gone! Fresh legs that got me through 104 miles during the month of March. That hundred another record. I'm on FIRE, and long may I burn.

And here we are at tomorrow...at long last looking down the barrel of 20. There is a two in that number! Hello you beauty, where have you been all my life? On 2 April 2016 as it happens.

I got a most excruciating 18 in a few weeks ago some way, some how, my innards having been full of some weird quick bug that made the previous night's sleep non-existent. Tossing and turning and waking up feeling hungover does not a good quality 18 miler make. But I programmed that sucker on to a Sunday and wouldn't you know it - there were no other days left in the weekend to make up for it. I had to go. No backing out. I went. It hurt like a bastard.

As it happens, that bug turned that run from 'some walking' into 'if I don't lay down in a minute I will dissolve into a pool of half digested gels and they will have to chisel my sorry iron arse off this path'. I actually felt so rubbish at one point after I'd just finished walking up the 'big climb' in the middle that I had to sit down on a bench and rest my leaden legs. I still had 5 miles to go. So I turned on the mental psychobabble and pretended it was that last 6 miles on the day. Plus I couldn't stop at the top of a hill in the middle of a cycle path, I had to get home. So I got up. I got moving. And I got home...

...to find hubby napping on the sofa with Mini Coach sat beside him, starkers but for a nappy. I opened the door and immediately knew said nappy was FULL and thank all that is good and holy that's where it stayed. Later discovered young son's top in the bin and a box of cotton buds in his potty. Had I been out longer he may have been ordering pizzas and we'd have reinstated our subscription to Sky Sports. So hubby jumped up, scowling at the fumes, and attended to Sir Stinky Bottom while I keeled over on the floor, not to move for a solid 10 minutes. I'm not sure if I was even breathing - not due to the stench, mind you, but because I had zero in the tank going out so was firmly in triple digit deficit when all was said and done. It was all so collectively un-pretty. But damn it all, I covered those 18 miles. And there wasn't carnage all over the living room. Result. And result.

So that 18 was the longest I've ever gone. Til tomorrow, that is. Tomorrow has a 2. What comes after that 2 will be decided at the junction to my road. Turn left for the 20. Keep going for just that little confidence boost and another half or so. Earlier this week I mapped out a route consisting of three familiar legs - approximately 13.5, 5.5, 1+. I've rehearsed and know my fueling regime. I know my pacing. I know the music I need for impetus. I've had a good loosening up massage today. Riced up. Kid sleeping. Kit washed and just about laid out.

I tell you, if I still had any lingering doubt as to whether I have the resolve to get 'er done, this is no longer going to be a problem. Come hell or high water or stomach bug or niggle I will start and I will finish. My February setback firmly in the past, my confidence building each day. I didn't expect to feel like this going in, but man alive I am so glad I do. I'm not scared, just excited. I couldn't ask for more...

But there actually IS more!

A while back I'd sent in the story of why I'm running VMLM and they've only gone and selected us as one of their 'runner's stories'! So a huge place of pride in the PDF of the same name (sitting on the 'media resources' page of the marathon website) and if you have a copy of the race mag, we are first listed in the story starting on page 184. There is a photo of me and my boy grinning next to Dame Kelly Holmes. Honored is not the word. What a grand adventure this has all been!

And there we have it.

15 minutes of fame!
5 - 6 hours of pain!
A lifetime of gain!

I wouldn't trade any of this experience for the world. T minus 22 days.

Tuesday, 29 March 2016

Running the wall. | #TransatlanticTuesdays

#TransatlanticTuesdays is a collaboration between me (in the UK) and Kera who blogs at The Special Reds (in the US) - sharing our journeys in the form of letters to one another.

Links to play catch up are at the end of this post.

_____________________

Dear Kera

The irony of your last letter about walking on eggshells has not been lost on me - by missing out a week you've hit Easter right on the noggin. Impressively timed, my friend!

But hang on - those eggshells you're talking about aren't exactly of the colorful hide-and-go-seek variety, are they? No. These block your path and scratch and poke and draw blood. They crackle underfoot and awaken the monster in the cave. I feel you. It's a jagged old pitted road some days and all the head shaking and tutting outsiders throw at you neither stops the issues that cause it, nor helps you around the difficult situation. Sometimes humankind leaves out the 'kind' part and I wonder how much 'human' is left in its absence.

Despite that stranger shade coming your way, I have never seen you in action but from what I can tell I expect that you handle those situations with grace and serenity, even when your insides are churning round like a tsunami. And on occasion, if you're like me, you get home and bawl your eyes out. And that's ok too. Tears cleanse.

Anyway, not only are those eggshells causing us a bit of bother but so too are the walls we hit. You've laid out a great question for me: "I talked about how I hit a wall last year. Have you hit your wall? Have you ever felt spent as a mother? What helps, (or helped) you overcome this?"

Because I'm training for a marathon, the first wall I thought of on reading that question is that which you hit as a runner when your body is empty of fuel. I recently had such a ridiculously difficult run that I'd felt as if I hadn't just hit that proverbial wall, but that I'd actually been running along it. And that leads me back to your question - I think I can say the same holds true in my life and role as a mom - I haven't run into a wall, I run along the wall.

Man, even typing the phrase 'my role as a mom' - well, I've just paused and looked hard, and thought 'really? I'm someone's mother?' Because in the same vein in which I used to feel like a great pretender when it comes to running, I often feel pretty substantially crap as a parent. I question if I'm getting it right, more often than not feel as if I could have done something better than I have. Did I miss an opportunity? Should I have involved other people in Rukai's development? Would he be farther along than he is?

Shoulda
Coulda
Woulda

We cannot go back and change our decisions, but some days after clinging to the positive and holding it all together for the outside world to see, I lie in my bed and unravel. And still there are knots that just don't go. In sleep I gather all the threads and begin to weave tomorrow's leg of the journey. Sometimes I need to tie a grappling hook to that rope and hoist myself back on the wall, but I run it, I run it, I run it.

I try not to look down.

I run along that wall every day, and the only thing that determines which side of that wall I come down on each night is the progress I've seen. I need to know Rukai is moving. I need to know he's learned something, he's registered growth. That is my job as a mother, and nothing else I do matters more.

Like you, the writing helps me work through it but it works in tandem with all the running. The stronger I feel mentally and physically the better I am for my son. I have to be my best me so I can help him succeed. Is this not why we have kids in the first place? The commitment to ensure they dream big and live life to the full. Their personal full, not someone else's.

I run along that wall but there's a hell of a view from up here.

Now it's your turn again. In one week, two, three, down to you - still no pressure!

Because he's presently nonverbal, we don't have a full picture of Rukai's knowledge and comprehension but time after time he blows us away and does something we had no idea he understood how to do (such as changing the DVD and getting it running - chins on floor all around, let me tell you!)

I'm curious to know what was the one success any of your kids has had which has surprised you the most? Is there anything you didn't expect from any of them and then they've gone and done it and you thought 'whoa, wasn't expecting that!'

I look forward to hearing from you, friend. Until then, it's time to get a portable leaf blower and blast those eggshells out of your path. Cos 'ain't nobody got time for THAT!'

Best to you all and hope you had a wonderful break.

Maxine x



Tuesday, 8 March 2016

Life at the speed of Rukai | #TransatlanticTuesdays


#TransatlanticTuesdays is a collaboration between me (in the UK) and Kera who blogs at The Special Reds (in the US) - sharing our journeys in the form of letters to one another.

Links to play catch up are at the end of this post.









Dear Kera

Has it been a week? Tuesday to Tuesday doesn't seem so close until it is upon me and suddenly I think, my word, if I don't get cracking our Transatlantic Tuesday will soon become Waterlogged Wednesday and you may wonder was it something you said? Ah, not hardly, but this life does run and race and jet and duck and dive and we chase it like kids on a farm racing after the chickens. Time slips and we dance along best we can to keep up with it.

Your letter last week really grabbed my heart. The friends thing. Friends are the truest family in my life to date, aside from a select few. The strongest of shoulders, the hanky in hand to swab the tears, they are present, they are permanent, they are ALWAYS. I could not do without my true friends. I lost many of the dearest of them for a while and ever so glad to have them back now but this is for another time. Another Tuesday.

Today belongs to your last question which despite the hectic pace of the week, those long drives into work give me plenty of time to ponder: What have you learned from being Rukai's mom that you didn't know before? How have you changed?

Perhaps the most important thing I've learned from being Rukai's mom is this - most people don't really give two monkeys about something if it doesn't directly affect them. It's a bit out there and a bit beyond Rukai but I think in terms of the reality of life trying to do your best by a kid with alternate needs from 'The Norm' that this is probably the most significant thing. It is a block and a hurdle and a mountain and a pit all the same. I have realized that you can halve humanity into 'those who care about other people' and 'those who care about themselves'. Take that horrible 'reality star' (yeah right) who keeps on taking selfies of her naked backside for instance, versus the charities who support our kids. People who work day in and day out to better OTHERS. 

The Self.
Humanity.
Society.

What matters most? On what should we focus to provide the right framework of the world in which we live for our children? 

Since Rukai has come into our world, the big has got smaller and the small has got bigger and everything meets in the middle in a place called 'What Rukai Needs.' I have found a new ability to not care much about what others think, especially people who have no serious impact on 'What Rukai Needs'. Because he really IS my world, like I wrote a while ago. He is. There is nothing else that actually matters but earning a crust. For him.

Always for him.

So as life tumbles past us like a dust storm I have also sharpened my focus on watching where his lead takes us and just going at whatever pace that may be. Because he has delayed learning this is usually a much slower pace. And the damnedest thing of all (which is something that I realized on one of those long drives home) is about all this marathon training I've been doing. I was wondering why on earth I actually like long distance running, never having been a runner, when some people find the long slow distance so utterly mind-numbingly boring they'd rather have their teeth drilled than negotiate another two mile incline.

The fact is, I live my LIFE in marathon. I like to take the long road, to stop and examine the wildflowers, to wait for the last car to pass before crossing the street. I enjoy the countryside and loathe the city noise. I wait for everyone to board the train and then get on. If it's too crowded I will sit out till an empty one comes along. I adore the mental space of a slower pace. To go out to explore with the sole purpose of just exploring. When Rukai came along we were told it'd be a slower pace. 

And this is a problem, how?

I have taken that as the truest blessing of all. In this day and age of bigger, better, faster, more, I've got a boy after my own heart. One who lives in the now. Taking the long road. Looking around more. Finding joy in the miniscule. Finding greater joy in the HUGE. The scope of his interest, the bounds of his imagination, why these are beyond anything I may have had with a 'typical' child. So this is the Tiger Mom dilemma on the point of the needle: how many times have we been steered to find a problem in his journey, his pace, his existence, when here as his mom I am entirely comfortable at his pace!

Talk about being in the right place at the right time, with the right boy for the right mom. 

What have I learned and how have I changed? I've learned that we are all 'normal'. I've stopped worrying about what everyone else thinks (well and truly stopped) and I love - more than there are words to explain - living life at the speed of Rukai.

So sayeth Simon and Garfunkel back in that slower time...

'Slow down, you move too fast
Got to make the morning last
Just kicking down the cobblestones
Looking for fun and feeling groovy.'

That's what I've learned.
That's how I've changed.

Thank heavens.

So now it's time to hand that baton back to you, and I know you are by day growing busier than ever but here should be an easy one...

Hints of spring are scooting around these shores and I know there's been a shortage of the white stuff on the ground over there as the weather settles. With the warmer weather on the horizon I'd ask what your biggest concerns or worries are when you get out and about, outside the confines of the safe space of 'Home'. I'm always worried I'll bump into some horrible person who says something for which I'm unprepared and I won't stand up for my son as well as I should. I don't want to be caught off guard. What are those worries for you? How do you prepare to face them?

Until we type again, I'm off to bed for a 6 am start and a quick few miles before hubby goes to work and I'm on my off day with my best boy. Have a great week and look forward to hearing from you.

Signing off from (as my Dad used to say 'Jolly old Englannnnnnnnd!')
Maxine x






With great power comes great responsibility.

It all begins exactly the same, and I'm not sure whether that makes me want to laugh or to gnash my teeth to cracking point. To snicker or curse, thrust two fingers in the air with vigor or shake my head in disbelief.

All. Exactly. The. Same.

It's that magic two lines on a plastic stick, or - hey! better! - real words like '3 weeks'. And it is then that you KNOW. Just like everyone else since Proctor & Gamble or Asda or Bob's Testing Kitz developed a means to identify it, you know there is someone growing in THERE. It is precisely the same bliss, an identical uplift, an equivalent joy - when you are about to burst from every pore with every imaginable emotion at once. You are about to become a parent! You're having a baby!

The very same.

That someone in THERE, for the most part, he grows the same. He affects you the same as any other. You wake up one day and feel so knackered you cannot see straight. You cannot eat anything that doesn't contain ginger, or peanut butter, or chili sauce or jellybeans or whatever your slowly bloating stomach demands. Your nose becomes bionic. Your muscles pudding. You find yourself walking to the tube after work with your eyes closed, shuffling down the side of an A road to the station, visionless because you know the route and you know the number of steps and you know that once you finally get to that platform you can pretty much fall straight into a seat, whack on your headphones and keep those eyes closed still for a solid hour. If you sleep, you're magically out cold until the stop right before yours - it seems the mommy intuition begins at the same time as well. Because precisely at your very own stop, like magic, you awaken but still only partially, because you cannot function properly - there is a new life in there, for whom your body weakens because you must sacrifice your entire strength for 'it' to become 'him'.

The same.

The first few months of this whosebodyisthiscosIcannotpossiblybethisknackered gig and and one day you wake up and lo and behold you find you're feeling better until you actually try on your jeans. Then you feel like utter shite. You won't be able to wear them again until much later, so get to the shops and you'll feel even better. Everyone does. I promise.

But really the main reason you feel good is because you're not in those early days anymore, you're in a place where 'new baby' is no longer settling in and sucking every last ounce of strength from you, because you have hereafter made an unspoken mutual agreement. This one says 'hey kid, I will love you and nurture you and cherish you and treasure you until both our dying days so ease up already, hey?' And you already 'get' him, because he is your SON. Already your son. That love, too, is the same.

Precisely the same.

Then you go on vacation - that last one before he formally comes into life, because you know there will soon be a time when your adventurous his'n'hers explorations are no more, that you are now three-to-be and when you have a kid to look after your time will never again be your own. And you will have to babyproof shit. Like EVERYTHING. Right down to the rental car. Bungee jumping and hang gliding are to stay on the bucket list. Hell, you even feel a bit soggy on the Roger Rabbit ride in Disneyland. You're pregnant. It's the same.

But just before you left, it all went tits up.

They ran some tests. They found something that made you and your experience suddenly become 'different'.

And they took it all away.
Until recently, this life, this progression, this expectation, well these things were all identical to every other pregnancy. The ones that become routine.

But.

There came some tests.
There came some results.
Some frowns.
Some statistics.
Some numbers.
Some labels.
Some things which made this pregnancy, YOUR baby, no longer routine.

And they took something from you. They took your Joy and replaced it with Fear.
Like a home invasion.
Ripped from you like a gold chain from your neck.
Broke into the safe and crept off with everything you had locked away and protected.

They took something you can never retrieve. They took it robotically, from behind spectacles made of Whatif. Charts, and graphs and measurements that said 'femur x, nasal bone y'.

And from that point, that very minute, that phone call where she says 'oh lots of people have that 'risk' figure, I'm sure there's nothing to worry about'.

Are you?
Are you really?
Care to join me in my bed til 3 am from here to eternity?
And please tell me when did 'son', 'child', 'baby' turn to 'risk'?

Stole it. Snap.

Then everything you were feeling, wanting, hoping, expecting, is speared through with negativity. Perhaps not with their direct intent but as luck would have it, the science got in the way of the humanity and then suddenly your baby, your child, your SON, became a 'problem', a 'risk'. Pregnancy, parenthood, joy, became faint memories. And you stopped taking bump selfies but only wanted it over. You wanted nothing more than to have your child and to get the hell away from the thieves of your happiness. You continued to value him despite what you were told. You grew fangs. Tiger mom was born long before your son joined her.

You were ripped from your plans so severely that the letter you began writing to your unborn son would never be completed.
You were put off all the home redecoration until the bitter end because you would never again believe that there would even BE a child, let alone a healthy child. There was 'risk'. Surely there would be 'disaster'.

(There wasn't.)

The nursery would remain half decorated and slightly cluttered until that child, that son, was here and was home and was yours. You could not rewind the time. You would never get that back. Like throwing a stone into an abyss, it wouldn't even give you the satisfaction of echo.

(And that nursery would not be 'right' until you moved home and your son had lived a full three years.)

But then he was born and he was amazing.

(Wait...what?)

Then he has grown and thrived and been such a complete opposite to the predictions.

(No...really?)

Then he has returned to you what they took - not because he had taken it back from them per se, but because they could not take what was IN him, and who he actually is.

Yes. Yes. Yes.

They never did know who he actually is. Perhaps that is the greatest tragedy of all. Perhaps more so that they never will.

(Here it is. Learn. Please.)

Four years later, these memories still burn.
Like a stick jammed into a hornet's nest. A magnifying glass on an ant hill. They scar and they fester and they do not go.
Because they have taken a moment we cannot have back.
They have stolen an experience we are never going to be able to re-live. Our first. Our only. Stolen.

Doctor, why did you take our joy and tar it with sorrow, based on 'maybe'?
Doctor, why did you determine that a genetic difference completely negated the pleasure and the essence of our entire journey?
Doctor, why did you turn our expected new child from some ONE into something to fear?
Doctor, why did you ask whether we would rather risk losing him to an invasive test than to continue knowing he may be (in your opinion, not ours) 'flawed'?

Different, yes. Flawed, not on your life.

Do you know, doctor, the damage you can cause with the weight of your words?
Do you know, doctor, that despite your budgetary constraints and your paper trails and your revolving door of 'normal' pregnancies to look after, we remained human, we remained feeling, we remained in love with our unborn son?
Do you know, doctor, that your heavy words crushed a piece of our hearts?

Do you care?

It is said that with great power comes great responsibility. And there you had the greatest of power. In a place where we as prospective parents were feeling vulnerable and weak, nervous and excited all the same. Desperately lucky to have finally conceived a child after trying for so long. There you had a chance to find and present positivity in this strange new world we were facing.

But you blew it. Doctor, you really screwed up.

You had an opportunity to help us rejoice in this new life. We were doing that already but you took it away from us with your frown and your supposition. You stole it. You blew it.

You should have started by asking us how we were feeling.
You should have looked at us and seen the glow in our eyes.
You should have asked us what we would name him.

Rukai. Rukai. Rukai.
He is Rukai. He will be Rukai. Know him.

He is Rukai.
He is four now.
He is mighty. He is not Fear. He is not Problem. He is not Worry.

He is Rukai.

In the very same way as was for us, as long as you practice medicine you will meet other expectant parents for whom you can either be a guiding light or the memory of darkness. There is no second chance at welcoming new life.

With great power comes great responsibility. Own it. Earn it.

He is Rukai.

#WDSD16