Hip hip hoor-aye yay yay.

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

I haven't had sore hips like this since I was pregnant. It's day seven after the second of two half marathons in three weeks that I thought I could easily handle (read: it seemed like a good idea at the time) but the last one seems to have handled me.

My wise physio tells me I have one of the tightest Transport For London muscles she's ever seen. It's really called something entirely different but I can't for the life of me remember that acronym without making up some other shit entirely.

So tight TFL threatens ITB and I hobbled home last Sunday third from the end of the Water of Life half marathon. I was expecting them to ask me to shut the lights out on my way but amazingly there were still people there when I finished. Like, five or six people, but hey I finished a freaking monstrous cross country pain fest. I got my bling. I know what I need to strengthen. And I got my first ever flying feet photo, so there's that.

So while I long to run, I have resorted to stretching and walking one more week til my legs stop protesting and I've convinced them that it's time to really get rocking and rolling for London.

That said, I think I should get hazard points for trying to do crunches with a three year old sitting on my guts. And best you don't even ask how painful foam rolling feels with a 25 pound body laying on top of the working leg. Bursting into flames isn't quite a strong enough analogy - my root canal was slightly less painful.

But bless my son's interest in the whole thing - I must be doing something right. Maybe one day we'll run this race together.

My hopes are high. My goals are lofty. And my foam roller beckons, so keep your ears peeled for an appropriately grisly scream coming right up, just in time for Halloween.

Roll roll roll your butt, gently now we screaaaaaaam.

Merrilly merrilly merrilly merrilly London is the dream!

26.2 for the DSA and my Ru.

#RunningForRukai: Road to the 2016 London Marathon for the DSA 

In April 2016, I'm going to attempt to do something I never dreamed possible for someONE I never dreamed possible - toe the line of the London Marathon and conquer those 26.2 miles in support of the Down's Syndrome Association and my gorgeous son Rukai, who has Ds. Rukai is a boisterous, energetic, engaging and very typical (yes, you read that right: typical!) little boy whose smile could light up Wembley. I wish everyone on earth could spend ten minutes with him, because the world would be better off for it.

Growing up, I never thought I'd need to call on a charity in my lifetime. Today, my gratitude is boundless. The DSA has supported Rukai and our family since day dot. They will continue to support Rukai long after we are gone so I am more than happy to support the DSA while I am able, and I'd be so grateful if you would too. And here, I'll tell you why...

Our little family had a ridiculously negative start. When Rukai was born, we were met with pity instead of congratulations. Whispers instead of smiles. The first interaction with a pediatrician after he was born was a registrar frowning as she said "you know why I'm here..." The clinic where I'd seen a specialist midwife for months was just down the hall, and it was a clinic day so she was probably there. But no one thought to ask her to come, someone I knew and trusted. Instead, we were surrounded by strangers with frowns. No congratulations, no he's beautiful, only "you know why I'm here..."

When Rukai's confirmed diagnosis was delivered a couple days later, I had been lying in the hospital bed holding him when a doctor and four other people (two whom I'd never seen before) paraded into my room, stopped in front of the bed and looked down at us. The doctor failed to notice Rukai's Dad wasn't present and began to speak. I had to stop him after he'd already revealed the news and asked my mother to go out and find my husband. We were later given worse case scenarios about what Rukai 'will need'. Four years on, few of those purported necessities have materialized. This place in which we live is most certainly not THAT place. And what Rukai really needs is love, education, friendship and a happy life, just like any other kid. The rest is periphery.

Sadly, the Down's Syndrome Association has heard dozens upon dozens of these kinds of stories and have cleverly developed a programme called "Tell it right, start it right" to help midwives and other medical people understand the nuances of delivering a diagnosis in a supportive, realistic and positive way, not with outdated facts, labeling, and an overabundance of pity. Now that Rukai is nearly 4, we know the reality of raising a child with Down's syndrome, and let me tell you - it is absolutely nothing like the doom and gloom we were led to believe! Rukai is just Rukai. He is not Down's syndrome.

I desperately don't want anyone else to have such a negative start. Please help me make sure they don't. Whether you can afford £2 or £20, every penny helps the DSA deliver this and a host of other programmes which support people with Ds, their families and all the professionals who provide support to us all day in and day out.

In the meantime, I will leave you with this thought...

The London Marathon is full of wacky costumed fun runners, most of whom are probably faster than me, even in costume. So I expect I may get passed up by a banana, a phone box, a leprechaun and a pair of testicles but as I live and breathe, I'm going to cross that line in April. For the DSA, for Rukai and for everyone who benefits from this amazing charity.

Now it's time to hit the bricks. I got this.

Please support the DSA here:
http://uk.virginmoneygiving.com/MaxineNapal26.2

Blogging about this marathon journey here:
https://www.realbuzz.com/blogs/u/redheaded2/26-2-for-the-dsa-and-my-ru/

Build it up.

[This post comes from a place of deep anger with a system I find completely broken. If cursing offends you, best avoid. Just a caveat -  in no way an apology.] 

I think those Tickboxes could very well appear in the next Avengers movie. They're like otherworldly antagonists, the pen wielded over them by maybe a doctor, 'Education', hell, maybe an ice cream vendor for all I know, but they are always present.  They're like the freckles on my face, present.  Like the freckles in winter, the boxes fade when we are left to our own devices, they take to the background, we don't think of them until we are placed before them. Like those judges on the Voice, those cowardly fuckers never turn around to square off.

Because we'd win.

And there they loom over us on the scribble pad of a person who is supposed to help us. They live, they breathe, they tear us down. They always fucking tear us down. Every time we lift ourselves up, those Tickboxes tear us down.

What an unkind life. A life trying to be so proud, so bold, so brave. I cannot hold the world on my back indefinitely. If I had my running shoes on right now, I'd do a Forrest Gump and run till my hair grew to my ankles and my skin turned the color of molasses.

There is nothing that will kick you in the face as hard as a doctor stating matter-of-factly that your going-on-four-year-old is developmentally 12 months old in some areas and 15 in others. I never asked her for this number, this neat packaging, same as my Dad, when dying of cancer never asked for that countdown til his last day. And lo and behold his countdown came true. Self fulfilling prophecy and all that. He even stopped turning the calendar pages. Why bother?

Dangerous stuff, those Tickboxes. Those Timings.

As I live and breathe I now know my purpose in this life and that is to refuse to allow The Tickbox and all this tallying and boxing up and ranking and rating and counting to dictate what my son will and will not achieve in his life. Til my dying day I will focus on nothing less. Tear us down and we'll build ourselves back up. You watch. You watch. You just flat out fucking watch.

New house, build it up
Who's gonna help me build it up
Bring me a hammer, build it up
Bring me a saw, build it up
Next thing you bring me
Is a building machine
Build it up. Build it up.

So doctor and The Tickbox kick you in the face with that godawful number you never asked for and though you entirely agree there is global delay, the actual quantifying of said delay is irrelevant because in reality, you go on with your day, every day, without the input of The Tickbox. Some Great Chart, like part of the Permanent Record we are threatened with from childhood, The Tickbox has invited itself in, gone to the fridge, cracked open a beer and planted its feet under our table.

I'm planting some choking vines around those feet, mate. Careful when you try to stand cos you're going to fall flat on that smarmy grin.

There is nothing else in our lives so bold and so irretrievably inappropriate than The Tickbox.
So damaging, so false a measurement of Truth.
So upsetting. Ugly crying upsetting. Beyond Ugly.

I get the your-kid-is-still-an-infant smack and subsequently ask what about his very advanced social skills? His curiosity and engagement with life and the world around him?
'Oh that doesn't matter as much', says she.
My head about fell off.

'To us as his parents it sure does', says I.

But apparently 'They' (this particular 'They' being 'Education') don't really give two blue squirrelly fucks about how capable someone is at engaging with the world around him if he can't hold a spoon. Who knew?

Shut my mouth and call me a Sherman Tank, I hadn't a clue.

'Isn't an essential part of life being able to socialize and be involved with other people?' says I.
And the answer came again: They don't care. Those Who Design The Lists Of Tickboxes don't care.

I think we are seriously living in the Matrix. I'm afraid to eat a steak lest it taste like a shoe insole now. Shame there really is no spoon cos I'd scoop up a motherload of bullshit with it right about now and fling it all over The Tickboxes.

And then we leave in the pissing rain. Even the sky was crying.

Always those who are most supposed to be helping us bring out those Ugly Tears. Not the stranger in the shop saying something stupid, not the worry about some well meaning mom at the park asking 'what's wrong with him' (never happened but it's my biggest fear) no no, those things don't actually rock our world. It's those who are supposed to help us who draw out the Ugly Tears.

How wrong is that. Just. How. Wrong.

That said, as my skin toughens along this journey when I get that roundhouse to the jaw it now first makes me sad. Don't get me wrong, it still fucks me off considerably but that is a wasted emotion because we have a life to live despite all the roadblocks. (Funny my typo fingers just spelled out roadbollocks).

The big problem I have is this. The system is setting him up to fail. Based upon this latest throttling it's occurred to me that they may not realize this but they sure are, sunny Jim.

Rukai is meant to begin formal education during the term after his fourth birthday. We have already felt a pressure to adhere to this timing. Being a February baby, this means he's supposed to start next September. Going to school with other four year olds, maybe a five or two, most of whom will already run, jump, count to ten, tally off the alphabet.

Use a toilet.
Feed themselves.
Use a cup.
Speak.

(Speak.)

Sing.
Wash their hands on their own.
The list goes on.

We're working on walking. Yes, Rukai is delayed. We don't need a number with which you perennially infantilize our kid to remind us that he's delayed. But now I'm awfully goddamn curious...what exactly do you tell a 45 year old with cerebral palsy when they physically can't walk? That they are walking at a 5 month old level? Or do you only infantilize people with disabilities when it comes to intellectual parameters?

That flat out fucks me off again. And here I thought I'd stopped being fucked off for the day. No, no. Hells no.

The Tickboxes.
The System.
Education.

Whose Box is it Anyway?

So Rukai will go to school and because he has a learning disability with a name it will be more straightforward to provide him help in terms of one to one support. Today I'm told it is because that developmental age is half of his chronological age. Help. One to one support. But wait, you're thinking...that sounds good. So what's the problem?

Throw away the reference to his advanced social skills, write up that report talking about a 12 to 15 month old and Rukai is henceforth sat at a desk in the corner working on spoon holding while his 'age peers' are moving further and further away from him. The risk of someone focusing on his struggle instead of drawing out what he excels at is too high. Those words on paper too heavy.

Treading water. Options...

Though not impossible, it's a gargantuan challenge to get a school to agree to a delayed entry. We have been waffling about it and after today I am once again thrown in a tailspin. But is this one person's forced negativity we are dealing with or is The System married to The Tickbox and procreating like hutched rabbits?

This fear, this panic, this is like disease. This is like the bad Gremlins. It's no bloody wonder I run.

So what then? We start him at five, yes, ideal. One more year to develop, to catch up. Super! Let's go!
Ok, so if they agree, wait...
Then in most cases he would have to skip the next year and go in with his age group peers. I don't know the ins and outs but it's something that sounds about like 'computer says no'.
Stay with age peers and he's instantly behind again.
Delay wins, regardless.

Ok, so back to starting him at four.  With the physical ability level of a one year old.  Great.  Cracking idea!!  Then the council has to provide enough support to keep him ticking along until which time he will inevitably fall behind his peers and they will inevitably recommend holding him back a year. Back to the group we thought he should start with from the beginning. Do you see this catch 22?  I cannot understand the reasoning because all it looks like is: 'make the parents not want to bother with all the hassle to go mainstream and settle for putting the child in a special school'. Yes, the alternative is a special school from the get go.

No. No. No Fuckity No. That is not inclusion. The system is offering inclusion yet fights it all the while. This is broken. This is bamboozling.

I cannot find a happy place today. I am entirely at a loss.

Why is he going to be forced to tread that water? Just to mix with kids who...

(get ready)

...don't see anything different whatsoever in Rukai other than he may do things a bit slower. To them, Rukai is Rukai. His mates are his mates. They don't care about The Tickboxes. These kids will be his Life Peers. Don't their observations carry any weight?

All I know is that those who have been most damaging to Rukai's progress are all the services who are meant to help us. They with their Tickboxes. We are not negative in our lives til they enter. And I cannot slam the door in their face. They think they're helping. In some ways they are. In more - the deep, very utterly personal ones - they are doing quite the opposite.

This life is unkind. My son is my world. This unkind life is already trying to tear him down.
Ponder those thoughts at 3 am.

I am in a place where I have no answer. But it's different now then it was at the start, because I have the past.
We have the past. We have each other.

But my shell is cracking today. My head in my hands. I look inside. It churns.

I listen to him sleep over the monitor.
That monitor we use for babies. That monitor I'd use til he's 25 to know he's ok when he's sleeping.
Because my son is my world and this life is unkind.

Fuck your Tickboxes. You do not make our rules. You will not write his story.

Time still rolls. We roll along.
Build it up. Build it up. Build it up.

First steps.

It wasn’t much to say but there he went and said it. “First steps.”

He looked about in his late sixties - one tanned guy full of vitality, pausing from his bicycle jaunt around the beautiful South Devon seafront. We were in the middle of our end-of-summer vacation, strolling along, luckily soaking up the last of the sunshine before the rainy season closes in. Rukai had one hand in mine, one in my husband's, and two feet chasing each other's shadows down the pavement in that gangly, stompy, slightly stiff-legged way all new walkers go forth and conquer.

Toddle, toddle. Pause, look at shoes. Look up at me, grinning. At Dad, grinning. Toddle, toddle.

We'd just been observing the boats moored in the harbor, and turned to find him there - an apparition of hope perched on two wheels, uttering those two magic words.

“First steps.” A huge smile. We all smiled back. But Rukai had more important things to do than to engage in conversation. No time, mama. I'm practicing. He tugged us back towards the path.

Toddle, toddle.

Sweet Rukai had been missing during the past few days, substituted by his secret ornery persona we've lovingly called Captain Crabbo. He wouldn't eat what we gave him, he didn't want to be in the house nor leave it, not in the car, not in the swimming pool. I wasn't allowed to dress him nor help him get dressed. I couldn't brush his teeth, peel a banana the right way, sing along with anything on TV, nor breathe to his satisfaction. Yet we persevered. As you do.

With Down's syndrome and it's delay, the Terrible Twos becomes an entirely new adventure. It's like a triple-length miniseries of Tot Terror. Some days that tunnel-ending light is covered over completely, like east London windows during the Blitz. Keep 'em covered til the danger has passed. He's going on four. This is a long road.

All kids go through Terrible Twos, but unfortunately for us, the longevity of this developmental stage brings with it that old Fear chestnut and its brutal questions: "what if he has a sensory disorder? Why doesn't he talk yet? I wish I could get him to control that spoon better. When will he stop casting?" For days, the sense of being overwhelmed quietly threatened - like those black boiling clouds that precede a hurricane, there it was. That fear which is the monster under my bed. Worse - it's the thing that eats the thing I'm afraid of. It's the Big Fear. The Great Unknown. Ye Olde 'What if?'

But no. Not today. No What If. Just what is. One life-experienced dude on a bike grinning at a toddler toddling. Two male creatures on either end of the life cycle grooving in the sunshine. The timing of this encounter was impeccable.

We bid farewell to bicycle guy, looked back at each other and smiled. Yes, yes, these days are New. But aren't they all?

He is three. These are indeed First Steps. There will be Seconds. Twentieths. They will all come one after the other, toppling like dominos, that happy click-clacking reminding us that in order to get there we always have to start from here. From somewhere. Tip the first block and every one thereafter will fall into its place. Still, we cannot predict precisely what that place will be. Life's mystery.

"First steps."

Easy does it. Every something new we take as it comes, one foot in front of the other. Our first steps as a family. Our first steps on this unknown journey.

We walk together along the sunny seafront that keeps those crashing waves at bay.

We fly or we fall and that is all.

You there, in the lab coat. Yes you. Put down the pen. 

We need to talk.

You haven't really looked up since we walked in. Last I checked, we were here for you to examine my son, and there you've only been asking leading questions and making notes, rating him against some invisible scale and ticking boxes. It's incredible! That pen hasn't stopped. Your questions haven't stopped. And your paper has received far more attention than Rukai has, which tells me that frankly, you are flat out wasting our time.

Again.

I have to tell you that it's beyond difficult for me to extend the courtesy of calling you 'Doctor'. It's difficult because my son's name is Rukai and in the five minutes since we sat down you have yet to say it. It's difficult because my name is Maxine and you keep calling me 'Mum'. And there's that pen, scribbling. Scribbling. Ticking boxes. Ticking me off.

You HAVE called Rukai 'They'. You HAVE compared him to thousands of other people with a similar condition, but at last check, good sir, these other people are not Rukai and Rukai is not them. And I am not your Mum.

You have an expectation that we will hang on every word and follow your directions to the letter. That we will gladly come back for you to monitor something that's not presenting itself as a problem in reality. But on paper, it MAY. And therefore you have clear guidelines as to what you should statistically be monitoring.

But the thing is, unless there is some secret spare room in our home that you are living in, I'm afraid the scale tips to me when it comes to identifying what we should be monitoring. Just because Rukai has a disability does not mean that we are unable to look after him. If there were no third copy of the 21st chromosome floating around in his blood, you wouldn't even consider his current condition worth monitoring. He is developmentally delayed and that is all. Other than that, we just don't see any issues. But there you all just keep LOOKING for them.

Rukai is a unique individual, just like you, and as HIS Mum, I know him best. If you had spent these first five minutes looking at us and asking me whether I'd noticed any changes, or how his behavior had been recently, If you had spent these first five minutes engaging with your patient -one boy named Rukai - rather than immediately begin comparing him to thousands of other people, you would have his truth before you. I don't care how many patients you have seen over the years, you have not met Rukai until today, and today is when you first learn about Rukai.

Statistics are guesswork. Life is too short to live tunnel-visioned in the grey. Statistically I wasn't supposed to leave America, move to England and marry an Asian man. Statistically, an Ivy League graduate is not supposed to become destitute and die of alcoholism. Statistically you’re not supposed to be able to land a jumbo jet on the Hudson River. Do you now register the falsehood of supposition?

We fly or we fall and that is all.

I find it both comedy and tragedy that society is perennially patting itself on the back for celebrating difference: in religious belief, gender identity, political persuasion, hair color, body shape, cripes how much time have you got? Yet here, where it really matters, when you're talking about the very thing that makes us unique -genetic material, human DNA - you group, box up and throw away. You spout 'They' and tick those damned boxes.

The ridiculousness of it is astonishing.

And now that you've not paid him any attention, you go and run some play based testing. And guess what? Just like any other kid on earth, if you aren't engaged with him, he won't be interested in you. And he won't play. Do not DARE assume this means he cannot.

And you write in terms of how he 'is'. Based upon 60 minutes of a life that has already gone on days, weeks, years without you in it. 60 minutes with your pen inking commentary which would fade and wash away if you left it out in the rain.

Place Rukai out in the rain and he will tilt his head back and laugh and flinch and maybe go and stomp a puddle. He will not fade. He will not wash away.

I appreciate your time is limited, so we have to wrap up this meeting. But our time is limited too. So unless we notice a problem, we're going to be a bit more selective about how much of that time is spent with you in the future.

In the mean time, I'd ask you to remember what brought you to medicine in the first place. You wanted to care for people. To serve. To listen and to respect. To advise and to heal. But with years of practice, I'm sure there's monotony, repetition, boredom. Paperwork. I suspect it's become far too easy to categorize people just to get that revolving door of endless patients to cease spinning. It's so much easier to find a common thread and close the chapter than to uncover a new story. But I challenge you to remember why it matters to society that we celebrate difference. Remember why Rukai matters. Because we all have a unique contribution to this life, 46 chromosomes, 47, whatever count, he COUNTS. He has a name, and a story, and unique potential. He has likes and dislikes. He is not 'They'.

Your pen and that notepad will not remember this day but I will. Don't make me remember you as someone who threw away my only child but rather as someone who 'got it'. There is very little I need more from you.

Good day, Doctor.

Just what you wished for.

It starts with a visit to a grotty old building, tucked away in the middle of some road on the side of town you aren't interested in visiting now, later, ever. But it is there you go because that's where They tell you to go.

They deny your husband access to the first conversation. Your conversation. About his child. Because he is guilty before being proven innocent. Accused of behavior he would not, could not display. "But he's taken the day off for this," says you. You are rebuffed. For the first time, rebuffed. For the first time, but not the last.

"Sorry, WE run this. You in, him out."

"Oh!" says you. Your eyes meet. There is a chasm of sorrow in his. Enter anger. You turn and step inside. You pay little attention to your conversation because it is missing half of what created the need for it.

Oh.

Minutes, days, weeks, pass and pass and pass. The child grows. The child grows and the worries grow because you are no longer a young mother, but you are of Advanced Maternal Age. You are to be owned because what you have will surely become their Burden. Their Financial Bugbear.

Imagined and foolhardy as this presumption is, they are confident of it, having seen it through their invisible crystal ball, formed of statistics and 20 minute observations. Of small samples and a history that quashed and hid away and ruined each and every possibility.

Those beliefs formed by believing in labels and supposition and to hell with actualities.

They OWN you. Still, they fear what you have. You have the strength and the knowledge and the belief that it is ok now. That it will be ok tomorrow. You have a spine of steel and resolve to match. And you deliver.

You speak the words. "Whether it lives eight minutes, eight days or eight decades, we are going to have this baby."

And oh how They fear you! Because you do not fear them. And you speak, and you speak and you speak, my God how you speak. If you do anything from today into forever it is that thing which you must do and do without hesitation, without reservation.

Speak. Until he can speak, you just go on and SPEAK.

They hand you another form, this a booking form for this blood test, that follow up appointment, two more hours of life wasted away staring at hospital walls with scowling staff who don't have a clue how much love you have for this little bump already. Who don't have the foggiest idea of what his possibilty is. They can't predict this any more than they can tell you he will have his grandpa's hair and his daddy's eyelashes. Just what you wished for.

Just that.

So you wait and you talk and they do their best again to prevent that joy from blossoming because when that joy blossoms, it explodes to the very milky WAY, it is intergalactic, it is nothing they could ever possibly know. They of the scowls and lab coats and tests which prove nothing more than assumptions are nothing. They are 50/50. One assumption tells you "it could be something, it could be nothing." To bleed fear on maybeitismaybeitisn't is the only suffering being done in this entire situation. Despite the gargantuan amount of suffering They tell you the child will face.

This, you will discover, is a nonsense.

One assumption tells you this is a HE. This assumption tells you my SON. It is a son.

But this you knew already. Because that bump lives in you and not in those cold corridors. And you danced around the house cradling that bump. You took the earbud headphone and popped it into your belly button so he could jive to Stevie Wonder and groove to the Grateful Dead. You danced and rejoiced and did your best to find your joy while they rattled your cage with their worry. Their words consistently delivering blows, you dreaded skulking back down the shining white corridor of the negative to get the wind knocked out of you again. Deep breath. Stand up. Stand up. Stand. Up.

This place is like a cloak. This place covers and mashes and smothers and denies.

Joy.

He arrives. They scurry across the room. They who didn't want him to be and there he IS. They didn't want him to be because their crystal ball says he will be unwell. He will need FIXING. Fix him, he's broken, he's wrong, he's not what we want to deal with, he is a predicament. They frown at you, the corners of their mouths poking up in artificial smiles. You cradle him. You love him. He is your joy.

(What you are and what you're meant to be,
speaks his name though you were born to me.*)

They scurry and scurry. Like rats they scurry. Picking at the scraps you leave behind because they cannot have the main course, this is LIFE on the menu. This is joy.

Don't go choking on those bones, you rats. You have been warned, there is nothing for you here. Best you listen to a Mother next time. Learn. Think you know? Learn more. Go.

Years pass. Time is slow. Achievements are enormous. You begin to identify the reality. That he really can dance. That he seeks out the boombox and presses that button. That he grabs your hands so that you can march to and fro and around and around and around to Monster Mash. That fun magical song you loved too. He marches. He watches you like a hawk. You passé and he passés. You jump and he lifts those heels up and down up and down. He DANCES. Weeping, weeping, whirling and twirling, this is magic, this is Love. This is JOY.

Still he doesn't speak. He works on telling you things with his hands. Sign language. This wasn't part of the plan but ok, as long as you've passed the ram it down our throats phase you run with it. You identify what you think he needs. They are in the back seat. You have developed the ability to tune them out. This is your get out of jail free card. Forever.

They who thought he should not Be, yet once he arrived They tried for so long to dictate how you should help him Be. And you say "no. No you won't. You didn't want him, do you remember? Do you see? Do you see it now? Open your eyes. We see. This reality is not your house of horrors. You have forfeited your control with your negativity. Too bad, not sad."

Joy. Ours is Joy.

You proceed to ask for help where you think it's necessary. But you only get instructions. Orders. Is help out there? Time will tell. You see what they say they have observed but you know he is far more. He is greater than an A4 sheet of observations. You write and deliver them the truth. The truth that he is infinite, he is telling THEM his story. They will not steal it and attempt to write it for him because he is more than they can ever imagine themselves to be. They are signposts, they are tick boxes, they are not Help. And they will not steal him from himself.

So you read. You learn. You guide. You work. You talk. You write. You share. You analyze. You converse. You ask.

You teach. You teach. You teach.

The music plays and you remember. You remember what your road looked like at the start. The scenery along the sides, the trees and the rain and the smell of the wet moss. You have walked some of it, danced some of it, run some of it. The smell renewed after every downpour. The rain cleanses. The music nourishes. The words your salve. Your salvation.

He is three and a half. The world will soon take him in. Take him ON.  You worry if you have done enough.

Yes. Always.

_____

Fare thee well now
Let your life proceed by its own design
Nothing to tell now
Let the words be yours, I'm done with mine

Flight of the seabirds
Scattered like lost words
Wield to the storm and fly.

* Grateful Dead, 'Cassidy'

To the Doctor who Reached Out.

Four medical appointments over 12 days.
Four.

Rukai spots a bit of fluff in the carpeting from twenty paces and goes to retrieve it.

"We must monitor his vision. THEIR eyes are commonly not working properly."

A rattle of keys in the front door turns his head. His eyes go wide and fingers point at the arrival of his Daddy. Down the hall, I open the bathroom door. One door is quickly disregarded for the other and he comes charging down the hallway to interrupt me, his curiosity piqued.

"We must monitor his hearing. THEY commonly have hearing loss."

Pediatrician 1 cannot confirm another issue, off to Pediatrician 2. I tell Pediatrician 2 that over the years, we have left off therapists and unnecessary appointments because Rukai is driving his own development. We don't want his default to change from easygoing, chilled, to pressured, overworked.

He's only 3. A three year old should not be overworked. A three year old should play. A three year old should not sacrifice his daylight to waiting rooms in search of issues which mayormaynotmaterialize.

"Oh yes," says He. "THEY are very happy people."

(Except when he's being a monstrous little shit, Old Mister P2. Come to mine when we've got a new menu item and watch me try to get it down him. If that is happy, then Bozo the Clown got it all wrong and we're living amongst the comedy of Pennywise.)

Saturday comes and we have The Baseline Echo. Two years since discharge from cardiology at Great Ormond Street. Yes, THAT amazing place. Yet here we are having A Baseline Echo. Doctor suggests he may call us in for a follow up and Tiger Mama pounces.

The hell you will. "He was discharged two years ago," says I.

Doctor is calm. Doctor is the very best doctor I have come across in my entire 13-1/2 years living in this country.

Doctor and Tiger Mama smokem Peace Pipe and reach agreement. Daddy sits quietly, watching, listening, asking. Don't poke a stick at this Quiet Man or he will become Tiger Dad and you don't want that tag team in this very quiet hospital this early in the day.

Ever.

Doctor is calm.
Doctor is the very best doctor I have come across.
Heart too, is calm. Heart is fine. As we knew.
Born with two holes in it, today there are none.
No surgery required.
Rukai 1 : Pessimism 0.
Rukai wins.

We leave shaking hands.

We leave shaking heads.
Four appointments. Twelve days. 33% of our time over the better part of a month spent visiting doctors when there is pretty much nothing wrong.

They call it 'health monitoring' but it feels an awful lot like Big Brother.
This is in no way "the life". But this is The Life.

We drop everything, we drive to and fro, we pay, we park. You poke and prod. Rukai thrashes and shouts. Cut it out. Quit poking me. You just weighed and measured me two days ago. Stop shining that goddamn light in my eyes. Get that fucking thing out of my ear. That gel on my chest is cold. I was fine and you are now really pissing me off.

THEY are not always happy.
God damn it, stop suggesting it.

And stop calling my son THEY.

I told the Doctor (because he did drop a 'they' early on in the conversation) that the services were crap where we lived, that those people threw Rukai into a box labeled Down's syndrome and discounted him. So we packed up and moved house to begin again.

"He is our SON. He is our child. He is our world," says I. "He is not THEY."

And this Doctor, he nodded. He smiled and he nodded and he kept scanning for a problem that did not exist. He searched for one acronym and I told him it was the other acronym we were looking for, that the notes were wrong, that it is column B not column A.

And this doctor, he smiled and he nodded and he GETS it.

My goodness, he GETS it. I wish for the world, that they all could GET IT. I explained at length why Tiger Mama pounced initially and he GETS it.

"You just want a normal life. If nothing is wrong, you just want to get on with things," says he.

Thank you. My faith is restored. And so we agree to a suggested check up five years hence - 'suggested' being the operative word, no 'mandatories' here.

Thank you for hearing us.
Thank you for listening to us.
Thank you for understanding us.

I told him where we came from and to where we've gone.
I told him how bad it was there and what we endured.
My words did not ricochet off. They nestled in and had a cuppa.

We turned to go and Rukai turned towards him.
We turned to go and there was a high five.
We turned to go and Rukai reached out. To the Doctor who Reached Out.
Rukai delivered a cuddle.
Rukai is the world's greatest bullshit detector and that cuddle was there for the giving.

To the Doctor who Reached Out.

This is The Life. But we are now very firmly in the driver's seat.

Thank you Doctor.