Tuesday, 4 March 2014


I've been doing the countdown of my 100 happy days for three weeks now. And strangely coincidental, the thing which has brought me the most happiness on day 21 has all to do with that old 21st chromosome, which has - for whatever reason - chosen to live in triplicate within our dear boy.

This day 21 has brought with it a plateau and a celebration not unlike that other relevant 21, that one which was a birthday and a rite of passage. This day 21 is catharsis. It is progress, and growth, and momentum.

On a fair few memorable occasions, something has come up in conversation with a random person during my day whereby it is either necessary or appropriate to mention the fact that Rukai has Down's syndrome. This has happened twice now with people at work, where as I hear myself speaking the words and commence holding my breath for whatever the response may be, to my great surprise they have replied that their own child has a disability of some sort.

The air whooshing out of my chest in relief could launch the frippin Goodyear blimp to Jupiter.

Because just like THAT, we instantly have a connection that does not and can not happen with everyone. There is a person right here, right now, who can completely relate to this fear-idea-worry-challenge-THING that lives in my head and my heart, this deep personal level of feeling and being and understanding that tries so hard to pull me out of society and into some netherworld of doctors and therapists and people telling me negative things. And yet, to be in the presence of someone who 'gets it' to such an extent is utterly like coming home.

Oh I most certainly came home today.

It is mind boggling how much bringing the statement to my lips builds up like a pressure cooker and just whistles away once that response comes out. Fear turns to relief in a split second.

What followed on both occasions was a lengthy, heartfelt chat about how exhausting and challenging and difficult it sometimes is to look after a child with special needs. This wasn't a syrupy 'I love my amazing kid' conversation. Because that love is a given and it's printed all over my heart. I am dressed in it. It is braided into my hair and printed across my face like my million and three freckles. That love wasn't necessary to define out loud. That love just IS.

It is that other stuff that creeps up behind me and nips at my achilles and festers in the wounds. It is the other stuff that we are not allowed to feel because we are supposed to have all the answers because if we don't we will be steamrolled. It is the other stuff that itches and burns and blisters.

But this day 21 is a boss.
This day 21 is an ointment. Solarcaine for the soul.
This day 21 washes away the stink of uncertainty like a shower of tomato juice over skunk-sprayed dog.

Because quite simply I don't have to have the answers. And it is ok to feel. And it is ok to say 'this is hard, I am exhausted to the point of tears some days, this is so much work.' It is ok to say 'we are ridiculously amazing at this - yes, us, yes, look there - that child is absolutely content and happy and thriving. That is our doing. We are bleeding and sweating and bubbling over with this love and with it he is so full that it bursts back out as 70% grin and 30% grit and attitude and two speckled arms raised up, reaching for another hug. That wrap-around-like-a-koala-bear hug. That one I live for. That one I'd die for.

Exhausted to the point of tears, yes. But I know now we are doing such a hell of a good job. And we are not alone. After two long years of wandering in the dark, it is becoming clear where we will find the light. And that light is in sharing. That light is in day 21 and 22 and 23, in those conversations where we mention this condition because it is ok to talk about it, and even better to find the other party in the conversation is showering us in their own light.

Open your mouth and let the fear fall out. What's left is a sunny day and a horse called Samurai Sword, still running like his ass is on fire.

So on this, my day 21, I realized that as vital for our family it is to have that unending love for our boy we need to have that camaraderie with like-minded parents. This, a family of strangers, on so many fronts far closer to what we need right now than family of blood. Not to discard one for the other but to prioritize according to the place in which we find ourselves wandering in search of that light.

It is this understanding that lifts us. This is what makes us stronger, and so able to pass on that strength.

Without fear.

So my tremendous joy today is that I have reached this place in my heart, in my life, on my path, where this exchange of ideas and feelings is not only acceptable - it is at long last entirely welcome.

Like all Rukai's milestones I have celebrated so fervently these past two years, methinks I have hit a major one of my own today.

Day 21: #100happydays

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