London granny is on vacation this week, so I find myself juggling working from home with watching Rukai. No small feat. His new treat-everything-like-monkey-bars attitude is equal parts glorious and exhausting. Those parents who experienced this phenomenon far earlier in the child rearing experience will likely not know how good it feels to ease the weight of that particular piano as it slides off your shoulders. It's a heavy, troubling old bastard, and it hasn't exactly been banging out ragtime singalongs for the better part of two years.
And see there - a new grin on his face, a new light in his eyes, as he realizes that piano was weighing him down as well. When he realizes that - with it's departure - oh how he can fly! Lookitmego.
And he goes up up and away.
Eyes in the back of my head seem to have appeared at about the same time. And fortunately, once he summits the sofa I can park myself in front of it and click away at my keyboard while he plays with the random socks, mittens and rubber duck he left up there last time, giggling over my shoulder at the Baby Einstein kids singing 'Head, Shoulders, Knees and Toes' for the 87 thousandth time. (And that's just today's count.)
But since both of us need a break from our work here and there, this time I let the kids on the TV laugh and run off screen, click 'send' on another email and turn to pause and un-cross my eyes, grasping another ten minute window til I must go back in.
On this play break as on most, I let Rukai take the lead in what we play and how we play it. And as long as he doesn't want to chuck plates across the room or knock over the garbage can, this is usually not only acceptable but a great way to encourage him to experiment. To test, to problem-solve, to strengthen pincer grip and hand-eye coordination. It's not 'therapy' or prescriptive. It is letting a kid be a kid.
It is letting a kid belt out belly laughs. And attempted words ("awah mama!"). And kid screams. Auditory diamonds.
So we sit down for a go at his latest game which we shall title 'not-only-can-I-throw-things-but-I-can-knock-them-off-your-head-too-hey-check-me-out!' And this round was played thusly:
We are sat on the floor. Rukai hands me some object which I am supposed to balance on my head so he can grab my hands, pull up to stand, let one hand go (huge move for him just now) and knock said object off. Off goes the object (a food packet in this instance) and he goes for my glasses next. Rules of this game state they either get flung across the kitchen or - another quite recent development - he tries to place them on top of his head and I will then put them on his face. But this time, we fling.
Packet and glasses gone, he grabs my nose with one hammy fist and leaves the other hand free. I remind him it is attached so he cannot pull it off and fling it across the floor. He looks me dead in the eye. His eyes blaze and he grins ear to ear.
And then he lets go.
And then he is standing. I am out of my head. A pride so all encompassing I cannot remember to breathe. My face must reveal this to him because the grin spreads, his eyes positively shine.
1-2-3-4-5. And then he topples into my massive hug.
And then he pushes off, seemingly oblivous to the sheer magnificence of what he has just accomplished - after all this time, what he has just accomplished - and scoots over to the toybox. Out comes a car and the game has vanished. Or has it.
Yesterday, I'd wondered if it was a fluke. Then today, he did it again. Exactly the same. No piano on that back, free flying wings and eyes so ablaze they could have blown a few dozen new holes in the ozone layer.
No, no fluke. We are approaching that new horizon and this is not a test.
26 months old. In your time, as it has been from your first intake of breath. You take your stand, young man. When you are good and ready, you take it.
____________________________________________
Days 56 & 57: #100happydays
Tuesday, 8 April 2014
Wednesday, 2 April 2014
And we kept on walking.
If the interaction hadn't started with "Well HELLO! Aren't you just GORGEOUS!!" there's simply no telling how I would have reacted. She had a shock of dyed red hair - like RED red, not auburn or 'ginger' or 'copper sunrise' or anything by birth or by L'Oreal, but RED red. That hair and that face which could've been foe. Could've been all foe.
But no.
Still knocked the wind out of me, though. Like the 12" softball that took a bad hop and clobbered me in the collarbone back in the day, in my head I stumbled a few steps in reverse and leaned over to compose myself, hands on knees, shoulders slumped. In reality, I was frozen in place. Ironically, I had been studying a rack holding DVDs of the Disney film with that very name, and here I was playing it out in charades.
After a week starting with bad and shuffling its way towards catastrophe, a week in which I thought 'how can it get any worse?' there she was, with that question we'd eluded for nearly twenty-six months falling out of her face as if she was merely asking me the time. That question we hadn't yet heard, but I have expected to hear every. fecking. time. we leave the house.
"Is he a Down's child?"
(Kick) Phoooooooooooooooooooooooo.
And somewhere from maybe behind my lungs (seeing as how they were empty now) or perhaps my left elbow, hell, maybe even from behind my right kneecap where that persistent nagging has been lingering the past few weeks - somewhere - my body delivered up a smile. That grin crept up like the old itsy bitsy spider and curled its way across my face. I wasn't yet sure if olditsybitsy was going to be a tarantula or one of those slow pokes you smash into a pulp with your slipper, but there it lay.
I summoned my voice and spoke through it. "Yes, he has Down's."
(Phoooooooooooooooooo)
I don't think I was clenching teeth, or muscles, or fists but possibly only because I was trying to balance an overloaded basket on the stroller handles to prevent our intrepid hero from flipping over like a wayward turtle. Perhaps that overloaded basket was a blessing.
And then she and Rukai went and grinned at each other. My eyebrows peaked and my grip loosened. My boy was cool. Chill mama, chill.
Ok skippy, you're in the driver's seat. Go forth and conquer.
Red pointed her grin at me and went on to tell me how she had done some work with people with DS, and save a few unfortunate stereotypes (among them that "ah they're all so nice and loving" chestnut again, and still not really sure why that bothers me so much but it does) it was a fairly pleasant conversation for something that had started with a kick in the guts.
All in, the duration of that episode of 'as my stomach turns' was about 3 minutes, max. Yet it took me the remainder of my shop to shake it off. And she was NICE. That's all I could think of as I left the store. 'Thank God she was nice. Thankyouthankyouthankyou.'
What will I do when that one comes along who isn't nice? Well that, friends, is for another time. Today we are here. Today we had nice.
One left turn outside and Rukai and I were strolling in the sun towards the house. I found myself feeling a bit small. I realized the ridiculousness of this and rolled my shoulders back. I pressed down these shoulders that sometimes feel altogether too heavy with the world, and I stacked my vertebrae upright again. I felt strangely proud that I'd been able to get through that conversation without disintegrating.
The road is long. The road is unpaved and bumpy. The road trips us up and bloodies our knees and draws tears that streak through the red tinged dirt, leaving us as painted warriors, post battle.
This road is Life. And no matter how many chromosomes we have in our fragile bodies, we travel this road together. Highwaymen and vagabonds, bankers and bin men, children and grandparents and cockatiels and grasshoppers, every one runs the gauntlet which is this road called Life.
I looked at Rukai and thought 'you are Rukai. You have Down's syndrome but you are Rukai.'
And we kept on walking.
But no.
Still knocked the wind out of me, though. Like the 12" softball that took a bad hop and clobbered me in the collarbone back in the day, in my head I stumbled a few steps in reverse and leaned over to compose myself, hands on knees, shoulders slumped. In reality, I was frozen in place. Ironically, I had been studying a rack holding DVDs of the Disney film with that very name, and here I was playing it out in charades.
After a week starting with bad and shuffling its way towards catastrophe, a week in which I thought 'how can it get any worse?' there she was, with that question we'd eluded for nearly twenty-six months falling out of her face as if she was merely asking me the time. That question we hadn't yet heard, but I have expected to hear every. fecking. time. we leave the house.
"Is he a Down's child?"
(Kick) Phoooooooooooooooooooooooo.
And somewhere from maybe behind my lungs (seeing as how they were empty now) or perhaps my left elbow, hell, maybe even from behind my right kneecap where that persistent nagging has been lingering the past few weeks - somewhere - my body delivered up a smile. That grin crept up like the old itsy bitsy spider and curled its way across my face. I wasn't yet sure if olditsybitsy was going to be a tarantula or one of those slow pokes you smash into a pulp with your slipper, but there it lay.
I summoned my voice and spoke through it. "Yes, he has Down's."
(Phoooooooooooooooooo)
I don't think I was clenching teeth, or muscles, or fists but possibly only because I was trying to balance an overloaded basket on the stroller handles to prevent our intrepid hero from flipping over like a wayward turtle. Perhaps that overloaded basket was a blessing.
And then she and Rukai went and grinned at each other. My eyebrows peaked and my grip loosened. My boy was cool. Chill mama, chill.
Ok skippy, you're in the driver's seat. Go forth and conquer.
Red pointed her grin at me and went on to tell me how she had done some work with people with DS, and save a few unfortunate stereotypes (among them that "ah they're all so nice and loving" chestnut again, and still not really sure why that bothers me so much but it does) it was a fairly pleasant conversation for something that had started with a kick in the guts.
All in, the duration of that episode of 'as my stomach turns' was about 3 minutes, max. Yet it took me the remainder of my shop to shake it off. And she was NICE. That's all I could think of as I left the store. 'Thank God she was nice. Thankyouthankyouthankyou.'
What will I do when that one comes along who isn't nice? Well that, friends, is for another time. Today we are here. Today we had nice.
One left turn outside and Rukai and I were strolling in the sun towards the house. I found myself feeling a bit small. I realized the ridiculousness of this and rolled my shoulders back. I pressed down these shoulders that sometimes feel altogether too heavy with the world, and I stacked my vertebrae upright again. I felt strangely proud that I'd been able to get through that conversation without disintegrating.
The road is long. The road is unpaved and bumpy. The road trips us up and bloodies our knees and draws tears that streak through the red tinged dirt, leaving us as painted warriors, post battle.
This road is Life. And no matter how many chromosomes we have in our fragile bodies, we travel this road together. Highwaymen and vagabonds, bankers and bin men, children and grandparents and cockatiels and grasshoppers, every one runs the gauntlet which is this road called Life.
I looked at Rukai and thought 'you are Rukai. You have Down's syndrome but you are Rukai.'
And we kept on walking.
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. ______
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.
(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
21.
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
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
Thursday, 13 February 2014
This is two.
Riding the waves, we are now on the crest of two. Froth and foam roiling around us. We paddle, we pop up, we ride. Sunny sunny day and we ride.
This is two. We are here now.
This is two.
He is sleeping. Twelve and a half hours from now is two years to the minute that we first saw him. Outside, in the world. Fists clenched in rage. Face in full boo boo. Pissed off. Cold. He didn't cry for ages. When he finally did cry, so did I. No tears painted T's face but I could see them in his heart. I could feel them, warm and salty, the joy and the agony of the experience. The fear so deep, the moment so intense, and now he is here.
"The baby is born," said the doctor. Like something holy. The oddity of that particular statement was not lost. It resonates, still.
Rukai waited so long to cry. And he cried so little. Still cries so little. Yet for two years, in many ways, I haven't stopped.
Some of these tears sorrow. Too many. Too many in fear. But far, far more in total bliss. Pride. Disbelief. Shock and awe and awwwww.
And pride.
And pride.
And pride.
They tell you "he CAN'T."
They tell you "he WON'T."
They tell you what he ISN'T and what he IS.
They tell you what they think and what they suspect.
And you think "go away with all your grey, we are living for TODAY."
And he grows. For two years he grows. And he thrives. And he replies.
I can. (Try me.)
I will. (Watch me.)
I am NOT Nothing, No One, Problem, Flaw, Fault, Defect.
I AM. (Amazing.)
I AM. (Rukai.)
I AM.
They tell you what they tell you and yet you know from the get that they know so little. Because you are Mama. You just know.
And here we are two years hence. The fear is not a blaze today. The fear has dwindled to a drip, to a minor irritation like a leaky tap. A tiny muffled croak like a frog hiding in a wheat field. Of rain as spittle. This is no longer a torrential downpour.
We humans fear the unknown, and for all intents and purposes we should be consumed with fear. Fear from the "what ifs" and the "maybes" and the "mosts" and "we thinks".
But we are not afraid because, simply, he IS.
And he is Rukai.
And he is ours.
And he is amazing.
And he is two.
I bid him goodnight earlier and found myself not saying 'sweet dreams', but rather 'dream big'.
Dream big.
Yes. Sunny sunny day and we ride.
This is two.
This is two. We are here now.
This is two.
He is sleeping. Twelve and a half hours from now is two years to the minute that we first saw him. Outside, in the world. Fists clenched in rage. Face in full boo boo. Pissed off. Cold. He didn't cry for ages. When he finally did cry, so did I. No tears painted T's face but I could see them in his heart. I could feel them, warm and salty, the joy and the agony of the experience. The fear so deep, the moment so intense, and now he is here.
"The baby is born," said the doctor. Like something holy. The oddity of that particular statement was not lost. It resonates, still.
Rukai waited so long to cry. And he cried so little. Still cries so little. Yet for two years, in many ways, I haven't stopped.
Some of these tears sorrow. Too many. Too many in fear. But far, far more in total bliss. Pride. Disbelief. Shock and awe and awwwww.
And pride.
And pride.
And pride.
They tell you "he CAN'T."
They tell you "he WON'T."
They tell you what he ISN'T and what he IS.
They tell you what they think and what they suspect.
And you think "go away with all your grey, we are living for TODAY."
And he grows. For two years he grows. And he thrives. And he replies.
I can. (Try me.)
I will. (Watch me.)
I am NOT Nothing, No One, Problem, Flaw, Fault, Defect.
I AM. (Amazing.)
I AM. (Rukai.)
I AM.
They tell you what they tell you and yet you know from the get that they know so little. Because you are Mama. You just know.
And here we are two years hence. The fear is not a blaze today. The fear has dwindled to a drip, to a minor irritation like a leaky tap. A tiny muffled croak like a frog hiding in a wheat field. Of rain as spittle. This is no longer a torrential downpour.
We humans fear the unknown, and for all intents and purposes we should be consumed with fear. Fear from the "what ifs" and the "maybes" and the "mosts" and "we thinks".
But we are not afraid because, simply, he IS.
And he is Rukai.
And he is ours.
And he is amazing.
And he is two.
I bid him goodnight earlier and found myself not saying 'sweet dreams', but rather 'dream big'.
Dream big.
Yes. Sunny sunny day and we ride.
This is two.
Friday, 7 February 2014
Today is a good day to rise.
The puck races past. Past the guy blocking our view. I hear my father shouting 'down in front!' A few choice words punctuate, but these are not necessary here.
This memory delivered Dad's latest gift. "Put it down," says he.
"Put it DOWN. You know what that anger brought to me. Lost time. Don't waste any more time because it is precious. Put down those people who suck your life away from you with their uninformed accusations and false assumptions. With their jealousy and desperate need to control you. Put them down and out of your life. Leave in it nothing more than the love you give, and those YOU love.
And the Blackhawks. Leave in the Blackhawks."
And just like that, one memory rescued my water-treading self out of the Dirty Water Pool and froze that sucker over. Turned that murky pool to ice, and the memory of a long ago hockey game. Me and my Dad watching my brother and his wicked slap shot from the red line. Still you give, Dad. More than you know.
Down in front, please.
Dad is just under a year gone. A year before he left, Rukai came. Rukai came, and Rukai has Down's syndrome. Rukai has Down's syndrome but Down's syndrome does not have Rukai. Don't believe it? Don't know Rukai then.
Dad gone a year, Rukai here for two. Life rolls.
Rukai's tomorrow is full of Dad's past, is full of our present. We have shared our family's first two years at the Dirty Water Pool. Two years with way too much helplessness and hopelessness and angst and anger churning around in the muck, all which we will try to put down. We will try to put it down and rise. Because it is time.
Today we ask something so little from so many. So little but so difficult to achieve.
Down in front, please, because frankly you are blocking Rukai's view. Sit down in front so he can catch sight of that magical puck racing by and laugh and wonder when he can try on some skates and fly on after it.
Sit down in front so he may clearly see his path.
Sit down in front so he can visualize his journey and bring us along with him.
Sit down in front so you do not prevent his progress. If you do, he will climb over you. He will do it his way. Just like grandpa.
Sit down in front of him before you judge. Before you assume. Before you throw him away.
Sit down in front of him and watch and listen and learn. It is only then that you may opine.
Stop towering over him and forcing him into your shadow. He's not fond of darkness, for he is light.
Sit down in front, please.
Sit down and let him feel the sun on his face. Like Dad did on his last outing. The sun that clears our vision, and dries the rain and raises freckles and delivers us our summer. The sun that warms our tired aching bones.
Sit down in front, please, and watch him rise.
This memory delivered Dad's latest gift. "Put it down," says he.
"Put it DOWN. You know what that anger brought to me. Lost time. Don't waste any more time because it is precious. Put down those people who suck your life away from you with their uninformed accusations and false assumptions. With their jealousy and desperate need to control you. Put them down and out of your life. Leave in it nothing more than the love you give, and those YOU love.
And the Blackhawks. Leave in the Blackhawks."
And just like that, one memory rescued my water-treading self out of the Dirty Water Pool and froze that sucker over. Turned that murky pool to ice, and the memory of a long ago hockey game. Me and my Dad watching my brother and his wicked slap shot from the red line. Still you give, Dad. More than you know.
Down in front, please.
Dad is just under a year gone. A year before he left, Rukai came. Rukai came, and Rukai has Down's syndrome. Rukai has Down's syndrome but Down's syndrome does not have Rukai. Don't believe it? Don't know Rukai then.
Dad gone a year, Rukai here for two. Life rolls.
Rukai's tomorrow is full of Dad's past, is full of our present. We have shared our family's first two years at the Dirty Water Pool. Two years with way too much helplessness and hopelessness and angst and anger churning around in the muck, all which we will try to put down. We will try to put it down and rise. Because it is time.
Today we ask something so little from so many. So little but so difficult to achieve.
Down in front, please, because frankly you are blocking Rukai's view. Sit down in front so he can catch sight of that magical puck racing by and laugh and wonder when he can try on some skates and fly on after it.
Sit down in front so he may clearly see his path.
Sit down in front so he can visualize his journey and bring us along with him.
Sit down in front so you do not prevent his progress. If you do, he will climb over you. He will do it his way. Just like grandpa.
Sit down in front of him before you judge. Before you assume. Before you throw him away.
Sit down in front of him and watch and listen and learn. It is only then that you may opine.
Stop towering over him and forcing him into your shadow. He's not fond of darkness, for he is light.
Sit down in front, please.
Sit down and let him feel the sun on his face. Like Dad did on his last outing. The sun that clears our vision, and dries the rain and raises freckles and delivers us our summer. The sun that warms our tired aching bones.
Sit down in front, please, and watch him rise.
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