Friday, 21 March 2014

Because we all bleed red.

Today is World Down Syndrome Day. This video made me sob my eyes out just now, thinking of how little we knew when we had that first pre-natal test with all it's 'soft signs' and hinting. How little we knew when we chose not to have a second because of what decision people would then be pressuring us to make. They set that pressure up very early on by labeling me 'high risk'.

I sobbed my eyes out because maybe then we wouldn't have Rukai.

That is a tremendously harsh reality and I will admit it today, right here, right now because it is important to me that everyone reading this knows the reality is not what you think. Unless you have a child with Down's syndrome, the reality is NOT what you think. Nothing to fear. Till my dying day, I will swear by that.

Nothing. To. Fear.

So today, please do our family the favor of not merely being 'aware' of Down's syndrome, but make a pact with yourself to go forward and work really hard to be accepting of people with DS as individuals. Stop labeling, stop generalizing - they are not all happy all the time. They are not all the same. Neither are you and me.

Accept their ability, their possibility, their beauty and the fire in their belly to achieve, just like any 'ordinary' kid. My son is not a sickly, inanimate lump with no drive and no intellect, as I was led to expect he would be. He is very healthy. He is immensely powerful in his deliberation. I see more passion in my son than I have ever seen in someone so small. I did not expect this. None of us did. Yet this is the reality.

Here is another reality: In the UK, 90% of pregnancies with a DS diagnosis are terminated. 90%.

How many Rukais have been lost? Because of fear based on statistics? I have sobbed buckets over that, too. Before we had Rukai, I never knew there are people who are looking specifically to adopt a child with Down's syndrome. Something else I picked up in the past two years. Why would they, you ask? I need only look at our son to find my answer.

We are so uncomfortable with differences that we rarely know how to act or what to say when confronted by them. I'm asking you to dig deep, just be you. Find words. Enrich your life.

Because we all bleed red.


Thursday, 20 March 2014

All has never been more found.

In preparation for Rukai's birth, I put together a great play list of songs on my iPod that I planned to listen to during labor to keep my mind occupied. As luck would have it, a few weeks before I went off on maternity leave I dropped my iPod down in the Tube tracks and even though it was in plain sight they wouldn't retrieve it during operational hours. Naturally it had been stolen by the next morning, so I had to buy a new one and tried very hard to replicate that play list. I also bought an iPod dock to plug it into so I had a mini sound system with me. I had it all mapped out. The night before he was born, I thought the exercise to turn him may fail and I could very well end up having a baby the next day, so I downloaded Adele '21' and Tina Turner's greatest hits, thinking I may want to hear the odd song on one or the other if I was going to be there for a while.

(It is only - literally - just now that I can see how very ironic it was to have downloaded an album called '21' on that occasion.)

Anyway, as history directed us, so he was born that day indeed, by cesarean. In my quiet private room, with my docile sleeping angel beside me, as I lay stitched up and unable to do much more than push buttons and drink water, I docked that new iPod and played overandoverandover that Adele album. It was about as perfect a backing track for that experience as I could have chosen.

To this day when I hear that album, every emotion comes back and I am straight back in that room. I can smell it. I remember fear, and sorrow and anger but more than anything else, love.  I adored Rukai from the minute I knew he WAS, way way back on Father's Day 2011, in my Chicago hotel room, visiting Dad.  But that couldn't hold a candle to how much I was bowled over with the most astounding love I have ever known from the minute I saw his face.

Clenched fists. He was PISSED off. I will never un-see that. I was proud of him immediately.

And Adele sang 'finally I can see you crystal clear...' all through the first night, and the second. I did not allow a third.  I wanted to be home with my son, and my husband and my mother.  In our house, not in the house of those doctors, those people who didn't care, didn't want to know.

I wanted to turn my back to them and let them watch us leave with our heads high and our hearts full.

'There's a fire starting in my heart,
Reaching a fever pitch, it's bringing me out the dark...'

Fast forward two years and some days. I continue to do this 100 happy days exercise. I am finding more joy in my life than I realized I had, far, far more so now that I've eliminated the negatives from it, each and every one. No love lost. My love lives under the same roof as I, and the remainder over an ocean.

'Don't underestimate the things that I will do...'

I am driving to work now, in a vehicle that has no iPod dock, just a CD player. I am listening to 20 year old music and so am reminded of 20 year old memories, when it's those from these past two years that I'd much rather have to keep me company along that gridlocked journey.

So I went to go find my portable iPod dock, unused since those early days of comforting that fragile new person at stupid o'clock in the morning. And find it I did, beneath a stack of other 'pregnancy stuff' in a box that had been carelessly and hastily stuffed with all the scattered detritus of life we had to hide in order to better show our house to its next owners. I unburied it, and hoped the batteries hadn't done the dirty in their spring loaded hold. But sure enough, I popped the lid and found that white crusted gunk that usually kills electronics.

'Ahhhhh, hope it's ok -' says I, and it dawned on me there and then that I'd said that thing before, I'd whispered those words before.

After that scan.
After those tests.

'Ahhhhh, hope it's ok.'
'Ahhhhh, hope HE'S ok.'

There was something which should've been a huge problem.
(Hope it's ok)
A deal breaker.
(Hope it's ok)
A game changer.
(Hope it's ok)

But in the same way that a doctor long ago got our son out, polished him all clean, dressed him in new clothes -

I got those crusted batteries out. Those batteries which looked for all intents and purposes as if they'd ruined, destroyed, damaged everything around them, because that is what was supposed to happen, right?

I got those crusted batteries out, wiped down the innards of that iPod dock, popped a few new batteries in and wot hey, would you know it...

It works just fine. I popped that iPod on and pressed play and then Adele was rolling in the deep again, and that dock was working just fine.

And I know someone else who works just fine. That crust of fear scraped away by two years of simply BEING. When we had been set up to think that all was lost, as we stand here with the past...PAST, we know that really, all has never been more found.

That someone else who works just fine looked up at me, thrust his arms out in expectation, and I scooped him up. I scooped him up exactly like I had dreamed I would scoop him up. I scooped him up just that same way and I wrapped one arm around his waist, and took his hand with my other and we danced.  We danced just like I'd swayed around the kitchen cradling that bump and all its possibilities.  And here the wonder who was that bump held my hand and grinned at me and we danced to that song that we'd heard on that first night overandoverandover.  That night when it was just him and me in that cold room, lying there, breathing, wondering what was next.

But here, now (scraaaaape) we were smiling, we were laughing, we were dancing.

'Turn my sorrow into treasured gold...'

We were rolling.

Day 37: #100happydays

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