Thursday 25 December
On the twelfth day of Christmas, my Rukai gave to me -
Twelve foam block towers
Eleven wrapped up presents
Ten bites of biscuit!
Nine hours of Crabbo
Eight grins at Santa
Seven posted letters
Six magic cuddles
Five thousand boooooooooooooks!
Four flying cheeses
Three hours of nurs'ry!
Two stinky dookies
And and attitude just like his mommy.
Merry Christmas to all, and to all a good night!
Wednesday 24 December
On the eleventh day of Christmas, my Rukai gave to me -
Eleven wrapped up presents
Ten bites of biscuit!
Nine hours of Crabbo
Eight grins at Santa
Seven posted letters
Six magic cuddles
Five thousand boooooooooooooks!
Four flying cheeses
Three hours of nurs'ry!
Two stinky dookies
And and attitude just like his mommy.
Tuesday 23 December
On the tenth day of Christmas, my Rukai gave to me -
Ten bites of biscuit!
Nine hours of Crabbo
Eight grins at Santa
Seven posted letters
Six magic cuddles
Five thousand boooooooooooooks!
Four flying cheeses
Three hours of nurs'ry!
Two stinky dookies
And and attitude just like his mommy.
Monday 22 December
On the ninth day of Christmas, my Rukai gave to me -
Nine hours of Crabbo
Eight grins at Santa
Seven posted letters
Six magic cuddles
Five thousand boooooooooooooks!
Four flying cheeses
Three hours of nurs'ry!
Two stinky dookies
And and attitude just like his mommy.
Sunday 21 December
On the eighth day of Christmas, my Rukai gave to me -
Eight grins at Santa
Seven posted letters
Six magic cuddles
Five thousand boooooooooooooks!
Four flying cheeses
Three hours of nurs'ry!
Two stinky dookies
And and attitude just like his mommy.
Saturday 20 December
On the seventh day of Christmas, my Rukai gave to me -
Seven posted letters
Six magic cuddles
Five thousand boooooooooooooks!
Four flying cheeses
Three hours of nurs'ry!
Two stinky dookies
And and attitude just like his mommy.
Friday 19 December
On the sixth day of Christmas, my Rukai gave to me -
Six magic cuddles
Five thousand boooooooooooooks!
Four flying cheeses
Three hours of nurs'ry!
Two stinky dookies
And and attitude just like his mommy.
Thursday 18 December
On the fifth day of Christmas, my Rukai made me read -
Five thousand boooooooooooooks! (Wait? that's not how it goes? Dum, dah dumdumdumdum)
Four flying cheeses
Three hours of nurs'ry!
Two stinky dookies
And and attitude just like his mommy.
Wednesday 17 December
On the fourth day of Christmas, my Rukai gave to me -
Four flying cheeses
Three hours of nurs'ry!
Two stinky dookies
And and attitude just like his mommy.
Tuesday 16 December
On the third day of Christmas, my Rukai gave to me -
Three hours of nurs'ry!
Two stinky dookies
And and attitude just like his mommy.
Monday 15 December
On the second day of Christmas, my Rukai gave to me -
Two stinky dookies
And an attitude just like his mommy.
Sunday 14 December
On the first day of Christmas, my Rukai gave to me -
An attitude just like his mommy.
Sunday, 14 December 2014
Saturday, 6 December 2014
Hey Jude, meet Dude.
As you do.
So I hoiked them from the office into the car and delivered to the front of our house, whereby strong hubby-person hoiked them back out and into the house, landing them on the floor with a thump and a fair few grunts. As Rukai and I engaged in the standard evening rituals, and I nursed a sore right shoulder, swollen from all that hoiking of Rukais and runner's water bottles and heavy-ass speakers, there was T, man-caving his way through wires and workarounds for the European plug sent with said speakers (and the cursing was world class throughout for this oversight alone).
But lo and behold there then they were, set up and standing proud and there again out blasts Fleetwood Mac and Tina Turner and loadsandloadsa Michael Jackson and anything additional everso heavy on the bass. (You know you just started singing THAT song but I will spare you here, and now I'll remind you that you will surely find it in your music folder or on YouTube so go watch and come back...we'll still be here.)
Ok, you back now? Right, so to the point.
After all the hoiking and behind and under and around all the thumping and HEE!hee of MJ pumping out of that magical new kit comes the dulcet tones of Sir Paul caressing my very soul.
'Heyyyyy Jude, don't make it bad, take a sad song and make it better...'
And back went my memory to our 20 week scan, when currently hoik-able Rukai was nought but a blob on a screen with an echogenic focus in the top left quadrant and plenty to get medical bods up in arms about.
Sure as the day is long our other intrepid hero, Granny Rainbow Angel, accompanied us from the Great Beyond to that appointment, showing her freckled loving face to me as we turned into the parking lot of that old cement hospital from hell, to that appointment where everything didn't quite CHANGE, so much as it had BEGUN.
There as we curled past yet another sign painted with Granny Rainbow Angel's ethereal, multicolored smile, Sir P crooned out that ridiculously foreshadowing message. Telling Jude not to make it bad.
Crooned it out. To me. Going There. For That. Me, born on the very same day as the feast of St. Jude. Going There. For That. You couldn't write this shit.
(The movement you need is on your shoulder...)
How I knew. Right there and then, how I knew. At week 20. And how they made me fear! It was a long, long scary pregnancy, friends.
So forward now here in our Happy Place, here to our kitchen and to its makeshift man-cave and there comes the tap on the shoulder, the hug, the rainbow from those hoikable, heavy-ass speakers.
Oh, music does make you remember!
To think of how it was that day, the day I knew we were not in for 'ordinary'.
Thank God! Thank Jah! Thank Buddah! Thank Granny Rainbow Angel! Thank Whomever!
I will never un-hear those words of the sonographer 'I'm sorry I couldn't give you better news'. Based on supposition about what he saw, what he thought it could mean. What he expected. What we all expected. And so little true. Every day, less true. We are as lucky as that little dude on the cereal box with the pink hearts, yellow moons, orange stars, green clovers and blue diamonds.
And this life IS magically delicious.
'I'd ask you whether the outcome of an amnio would make any difference to you before I'd suggest it.' says Sonographer Person.
'It would make no difference,' says We. 'This baby is coming into this life whether he's going to stay eight minutes, eight days, or eight decades.'
And he smiled. And he turned. And he ticked some more boxes, wrote some more notes. Notes that included 'declined amnio'. You know, in case.
I want to bring Rukai to see him.
'Does he look like a problem to you?' I'd ask.
And he'd smile. And he'd say 'No. No, he doesn't.' And he'd know. As I live and breathe, then he would KNOW.
I really should go back. I really should make him know.
But that visit would make us go There. And There is a place that blocks us to no end. It's like kryptonite. It leadens my legs and boils my guts. And me leaden does nothing for my son. So I will not dare. We will look ahead and not behind. And the path ahead has shone remarkably since we severed our connection to There. I could not love this place any more and each day, each interaction, all better than the last.
It is a strange one but this is our life. It is my duty to make it good. I honestly do not care about anything else.
And wa-hey, 'Hey Jude' is one piece of music which brings it ALL back. Like Adele Rolling in her Deep. Every day we are making the sad song a little better.
And for that movement? That movement I need, that is on my shoulder?
Not much on your shoulder when you hoik off the world and just walk into your tomorrow. Leave what blocks you behind and then you begin.
Lost cause? Not hardly.
Hey, Jude. Meet Dude.
Wednesday, 19 November 2014
This is what happens.
This is what happens. Like a boomerang. Like a funhouse mirror screwing up the truth and reflecting back the result. Like flubber.
Bully a child and create an adult with poisoned memories and a huge chip on her shoulder. A chip that says 'you won't do this again. No one will do this again. Do not dare.'
This is what happens.
It doesn't go. It reverberates. It has planted its seed and that seed is decay. That seed is hurt and that seed turns into anger and action and reaction. It turns to peaks and troughs and heights and crashing and burning and sorrow that tears holes in the spirit, filled back in with cold steel. It doesn't go. Lather, rinse, repeat. For forty three years. Bubbles, bubbles all around.
But you adjust. And you function. Yet still you burn. Quietly, you burn.
It is discomfort and ill at ease. It is promise all too often turned into a nightmare. It is 'what have I done NOW' turned into 'I haven't done anything so you can go piss up a rope.'
I was bullied severely as a kid, and I don't take any shit from anyone anymore.
This is what happens.
Right result? Not quite. But here we are.
And the bullies have long forgotten yet this is what they have done. What they have caused. Schoolyard bullshit still poisoning one innocent life after another, for all this time. When it should have been long gone, it has been suppressed and retained and this is what happens. Despite all the work to be rid of it. No amount of scrubbing will wash it off, no soap will dissolve it. I could not boil myself free of it.
Get over it?
If only I could.
But, see here - I want my childhood back. I want it to include childhood. How can you resolve what you cannot return to correct?
We enter this world alone, screaming. A kiss, the stroke of a forehead, a cuddle, a warm blanket. Wrapped up in mother's arms, life won't upset you little one, I've got you, I've got you. There there.
And there.
There is life. There is Life. And with it there is jealousy. And cruelty. And dissonance. And God forbid you have some positive interaction with an authority figure, may as well tattoo a target on your forehead.
And four decades of life later, see what happens. You go from 'wouldn't say boo to a goose' straight across the other side.
To passive-agressive?
Assertive?
Don't take it personally?
Sorry, but 'fraid so - it's all personal. It is my LIFE. It is all personal.
Once upon a time there was a little kid trying to make her way. She went to school, she wanted to learn. She wanted to make some friends and find a way to be happy.
There was winter. And a thaw. There was a slush puddle and a pack of bullies, like wolves, preying on the quiet shy little kid who was just trying to make her way. The quiet kid who ended up covered in slush. Crying her way home, like most days, crying her way home. One more day like all the rest, where home was still so very far away even though it was so close. Thank God home was close. Thank God there was a bedroom with a door to close and music and quiet and no one telling me how shit I was before they were my 'friend' on the next day.
Thank God it ended and thank God I know very well I am not shit. Thank God that school closed. And the next one, and the one after. Like that boomerang, like a pinball, bouncing and ducking and diving til the bullies got lost on the other side of town in the shuffle and everyone suddenly became 'acquaintance'. So much for trust but what the hell, I survived and here I am to write it all down. I know who I can rely on and they know well who they are. Thank God.
Still, the memories burn more than three decades later. But now an adult. Now an adult with a voice. Now an adult with words. An adult with a son at great risk of the same treatment. The more fearful I become for him, the louder those words. Do not try to suppress me now. Do not try to censor. Do not dare.
I speak for my son til he can speak for himself.
I speak for the child I was and the childhood I lost.
I speak for those who are afraid to speak.
I speak for those who cannot speak.
End bullying.
Watch for it. Call the bullies on their behavior. End it.
All of it.
Because this is what happens, and life is too short to hold memories that burn so deeply.
_____________________
Anti-bullying week 2014
_____________________
Bully a child and create an adult with poisoned memories and a huge chip on her shoulder. A chip that says 'you won't do this again. No one will do this again. Do not dare.'
This is what happens.
It doesn't go. It reverberates. It has planted its seed and that seed is decay. That seed is hurt and that seed turns into anger and action and reaction. It turns to peaks and troughs and heights and crashing and burning and sorrow that tears holes in the spirit, filled back in with cold steel. It doesn't go. Lather, rinse, repeat. For forty three years. Bubbles, bubbles all around.
But you adjust. And you function. Yet still you burn. Quietly, you burn.
It is discomfort and ill at ease. It is promise all too often turned into a nightmare. It is 'what have I done NOW' turned into 'I haven't done anything so you can go piss up a rope.'
I was bullied severely as a kid, and I don't take any shit from anyone anymore.
This is what happens.
Right result? Not quite. But here we are.
And the bullies have long forgotten yet this is what they have done. What they have caused. Schoolyard bullshit still poisoning one innocent life after another, for all this time. When it should have been long gone, it has been suppressed and retained and this is what happens. Despite all the work to be rid of it. No amount of scrubbing will wash it off, no soap will dissolve it. I could not boil myself free of it.
Get over it?
If only I could.
But, see here - I want my childhood back. I want it to include childhood. How can you resolve what you cannot return to correct?
We enter this world alone, screaming. A kiss, the stroke of a forehead, a cuddle, a warm blanket. Wrapped up in mother's arms, life won't upset you little one, I've got you, I've got you. There there.
And there.
There is life. There is Life. And with it there is jealousy. And cruelty. And dissonance. And God forbid you have some positive interaction with an authority figure, may as well tattoo a target on your forehead.
And four decades of life later, see what happens. You go from 'wouldn't say boo to a goose' straight across the other side.
To passive-agressive?
Assertive?
Don't take it personally?
Sorry, but 'fraid so - it's all personal. It is my LIFE. It is all personal.
Once upon a time there was a little kid trying to make her way. She went to school, she wanted to learn. She wanted to make some friends and find a way to be happy.
There was winter. And a thaw. There was a slush puddle and a pack of bullies, like wolves, preying on the quiet shy little kid who was just trying to make her way. The quiet kid who ended up covered in slush. Crying her way home, like most days, crying her way home. One more day like all the rest, where home was still so very far away even though it was so close. Thank God home was close. Thank God there was a bedroom with a door to close and music and quiet and no one telling me how shit I was before they were my 'friend' on the next day.
Thank God it ended and thank God I know very well I am not shit. Thank God that school closed. And the next one, and the one after. Like that boomerang, like a pinball, bouncing and ducking and diving til the bullies got lost on the other side of town in the shuffle and everyone suddenly became 'acquaintance'. So much for trust but what the hell, I survived and here I am to write it all down. I know who I can rely on and they know well who they are. Thank God.
Still, the memories burn more than three decades later. But now an adult. Now an adult with a voice. Now an adult with words. An adult with a son at great risk of the same treatment. The more fearful I become for him, the louder those words. Do not try to suppress me now. Do not try to censor. Do not dare.
I speak for my son til he can speak for himself.
I speak for the child I was and the childhood I lost.
I speak for those who are afraid to speak.
I speak for those who cannot speak.
End bullying.
Watch for it. Call the bullies on their behavior. End it.
All of it.
Because this is what happens, and life is too short to hold memories that burn so deeply.
_____________________
Anti-bullying week 2014
_____________________
Sunday, 9 November 2014
Shiny happy people.
Finally witnessed Rukai serving himself half of his dinner tonight. That with a spoon. Scoop and eat. Still no major chunks of food in the spoon-to-mouth version of 'grub' but he held the damn spoon and served himself. It made me equally happy and sad all the same. Possibly more sad than happy. This is the wheel we are turning on, around, over.
Under.
You will not understand fully if you are not in our shoes but this was bloody enormous. Nearly three years old and it was only today we had this extraordinary gift. Nearly three. Thirty six months. Yes, many hit this milestone at six months. Now add on thirty and welcome to our world. Add on thirty and see why the ability to feed oneself is such an extraordinary gift.
Add on thirty and know why there are dark circles under my eyes. Add on thirty and know why I keep to myself, then release with words, then retreat again. Add on thirty and understand why I have started to run as a hobby. It is seriously fucking lonely here.
Thirty. Months.
It's a hard life, this one. And it pisses me off, but not really how you may think.
It pisses me off because there are people out there in a similar situation who will tell you that this life is NOT hard. That their kid is 'rocking that extra chromosome' or polishing it, telling everyone how wonderful it is, perpetuating the shiny, happy people myth.
Sorry (not sorry) but Down's Syndrome isn't wonderful. It's not shiny, it's delay. It's not happy (and bloody stop thinking it is) it's constant hard work. It is a going-on-three year old with no words. Nowhere near toilet trained. No solo standing. No solo walking. And Rukai is quite healthy as it happens. This is from the 'doing great' perspective.
Yes, you're with me now, right?
We are cruising. In every sense of the word. We'll get there whenever. Mañana. Maybe. Maybe not. Jury's out.
And every time I want to just play with my son there is always a back story, a lesson, a challenge, a milestone to reach, some achievement I want to push him towards.
Goddamn it, I want to just play with my kid. Can I just play with my kid? Why can't I just play with my kid?
(Because he'll become more delayed. Because he'll fall farther behind. Because that would make you a shitty parent.)
The pressure is exorbitant. We aren't rocking anything here. Rock THIS.
There are bad days, and I'm writing this slap bang in the midst of one to remind myself, and anyone reading, and anyone shining and happy and singing Kumbaya that there are bad days and you cannot polish over them, you will be forced to ride them. You will not rock a goddamn thing. You will just about light yourself on fire with worry. You will have a proper shitty day, and then you will awaken in the next, maybe not so shitty. But you know this is a coaster, with loops and giant drops and g-forces to make your cheeks self-Botox.
Ride it. And rock. THIS.
The shiny happy people out there singing how wonderful it is to have a kid with Down's syndrome I'm afraid are really slightly in denial. Don't get me wrong, I wouldn't trade my son for the world. But if someone had a magic wand that took all the extra stress and worry and hard work and 'why-can't-I-just-play-with-my-son's' away, you're goddamn right I'd take that wand and wave it til at age 2 we had food you have to really CHEW. And with it, fork usage. And running, and talking til I couldn't stand to hear another fucking word. Talk to me, somebody please talk to me.
If your toddler talks your ear off, count your blessings, mate. Don't stop counting til you're walking them down the aisle.
Don't stop.
Wave that wand.
Oh? No wand?
Struggle?
Challenge?
But LOVE. Beyond imagination. Love.
It's fucking torment.
But take your blind oblivion and your shinyhappypeople joy and your 'rocking this' thing and keep it away from my ass. Because it's a hard life, this one. Don't kid yourself honey. H-A-R-D.
We had lunch with peers a few weeks ago. I agonized from the second the invite was issued as to whether we should bring the portable booster seat, to save having to seat Rukai in a high chair, on the other side of the table. A place and position that none, nix, nada, zero of them would be in. I said fuck it, he eats in a high chair, we'll use the high chair. We didn't bring the booster. And we may well have been on the other side of the goddamn planet. There were photos we were not included in. Joker me - in denial - left a jovial comment. Then the sad clown nearly drowned in floods of tears that night.
There always are floods of tears. I'm so tired of crying.
It's a hard life, this one.
Who doesn't want their child to mix and mingle? Mine joins in (-ish) but the others are light years beyond. The joy we are able to hold on to is of being sat in the ball pool at the local soft play, mixing with tots nearer in ability. They are likely under 2.
But age is just a number, right?
I am writing this BECAUSE I treasure and adore my son.
I am writing this precisely because I would move mountains for him. With a teaspoon and bloodied knuckles and scabby knees. All of them. Sagarmatha and her courtiers.
Scraaaaaaaaape.
I am writing this because fluffing over the reality of the situation by saying how wonderful it all is, is a giant crock of shit and will serve him nothing.
I am writing this because I am honest to a fault.
Because that honesty has made me enemies.
Becuase that honesty has made me friends.
Because that honesty has MADE me.
Read into this what you will,
Judge as you may,
Know that I have no shame about my son.
Beyond my un-ending love, well past my pride, I have only worry. Gargantuan worry.
I have only sadness that he has to try ten times harder than an ordinary kid to do everything he does.
And still there he DOES. That spoon goes into mush and up to mouth and into mush and up to mouth and some splats on the floor and some goes into hair. Like any other kid learning to feed himself.
Like any kid learning to FEED HIMSELF. What a ridiculously hard thing for some human beings to do. If you do not live this, bear witness to this every.bloody.day. take a breath and put on my shoes and then fling them away because you won't be able to wear them for long.
It's a hard goddamn life, this one.
But still my Rukai DOES. He does, and he does and he does.
He blows my mind. I love him so much I can hardly breathe.
And there, he is not a shiny happy person. He is a boy with a temper. With a path, and a past and a present and a future. He is all too often a whiny, crabby miserable toddler when he doesn't get his way.
Mama's boy.
He is a stereotype slayer. He is not a condition and he is trying so freaking hard every day to learn, to try, to fly. My heart aches for him in every possible way. I wish I could take that struggle and put it in a box and send it out on the jet stream. But I cannot.
When I see him agonize over the inability to do something and then get up and try again, and again, and again. To require nothing from me other than to be beside him. Because he will push himself.
He is staggering up that fucking mountain and he is pushing himself. Show that pediatrician, that stupid nurse, that rude health visitor, all those people, show them that fire. Show them who he is, what he is capable of. Show them.
Yes, dear...it IS my place to prove those doctors wrong. That is precisely why I am not a shitty parent. And why he gets so livid when met with failure. He stands up. Like Tom Cruise's Hollywood Samurai who gets the stuffing knocked out of him in the rain and the mud he staggers up and up and up and keeps on fighting.
Like that horse, he keeps on running.
So I'll hand him a spoon. If he drops it I'll pick it up and give it back. Just like any other kid.
There will be more tears. But one day there will be words. And steps. And Iloveyoumama's.
Today that day feels light years away, like I'll be an old woman by the time it arrives.
But age is just a number.
Put it in the ground where the flowers grow, and rock THIS.
Under.
You will not understand fully if you are not in our shoes but this was bloody enormous. Nearly three years old and it was only today we had this extraordinary gift. Nearly three. Thirty six months. Yes, many hit this milestone at six months. Now add on thirty and welcome to our world. Add on thirty and see why the ability to feed oneself is such an extraordinary gift.
Add on thirty and know why there are dark circles under my eyes. Add on thirty and know why I keep to myself, then release with words, then retreat again. Add on thirty and understand why I have started to run as a hobby. It is seriously fucking lonely here.
Thirty. Months.
It's a hard life, this one. And it pisses me off, but not really how you may think.
It pisses me off because there are people out there in a similar situation who will tell you that this life is NOT hard. That their kid is 'rocking that extra chromosome' or polishing it, telling everyone how wonderful it is, perpetuating the shiny, happy people myth.
Sorry (not sorry) but Down's Syndrome isn't wonderful. It's not shiny, it's delay. It's not happy (and bloody stop thinking it is) it's constant hard work. It is a going-on-three year old with no words. Nowhere near toilet trained. No solo standing. No solo walking. And Rukai is quite healthy as it happens. This is from the 'doing great' perspective.
Yes, you're with me now, right?
We are cruising. In every sense of the word. We'll get there whenever. Mañana. Maybe. Maybe not. Jury's out.
And every time I want to just play with my son there is always a back story, a lesson, a challenge, a milestone to reach, some achievement I want to push him towards.
Goddamn it, I want to just play with my kid. Can I just play with my kid? Why can't I just play with my kid?
(Because he'll become more delayed. Because he'll fall farther behind. Because that would make you a shitty parent.)
The pressure is exorbitant. We aren't rocking anything here. Rock THIS.
There are bad days, and I'm writing this slap bang in the midst of one to remind myself, and anyone reading, and anyone shining and happy and singing Kumbaya that there are bad days and you cannot polish over them, you will be forced to ride them. You will not rock a goddamn thing. You will just about light yourself on fire with worry. You will have a proper shitty day, and then you will awaken in the next, maybe not so shitty. But you know this is a coaster, with loops and giant drops and g-forces to make your cheeks self-Botox.
Ride it. And rock. THIS.
The shiny happy people out there singing how wonderful it is to have a kid with Down's syndrome I'm afraid are really slightly in denial. Don't get me wrong, I wouldn't trade my son for the world. But if someone had a magic wand that took all the extra stress and worry and hard work and 'why-can't-I-just-play-with-my-son's' away, you're goddamn right I'd take that wand and wave it til at age 2 we had food you have to really CHEW. And with it, fork usage. And running, and talking til I couldn't stand to hear another fucking word. Talk to me, somebody please talk to me.
If your toddler talks your ear off, count your blessings, mate. Don't stop counting til you're walking them down the aisle.
Don't stop.
Wave that wand.
Oh? No wand?
Struggle?
Challenge?
But LOVE. Beyond imagination. Love.
It's fucking torment.
But take your blind oblivion and your shinyhappypeople joy and your 'rocking this' thing and keep it away from my ass. Because it's a hard life, this one. Don't kid yourself honey. H-A-R-D.
We had lunch with peers a few weeks ago. I agonized from the second the invite was issued as to whether we should bring the portable booster seat, to save having to seat Rukai in a high chair, on the other side of the table. A place and position that none, nix, nada, zero of them would be in. I said fuck it, he eats in a high chair, we'll use the high chair. We didn't bring the booster. And we may well have been on the other side of the goddamn planet. There were photos we were not included in. Joker me - in denial - left a jovial comment. Then the sad clown nearly drowned in floods of tears that night.
There always are floods of tears. I'm so tired of crying.
It's a hard life, this one.
Who doesn't want their child to mix and mingle? Mine joins in (-ish) but the others are light years beyond. The joy we are able to hold on to is of being sat in the ball pool at the local soft play, mixing with tots nearer in ability. They are likely under 2.
But age is just a number, right?
I am writing this BECAUSE I treasure and adore my son.
I am writing this precisely because I would move mountains for him. With a teaspoon and bloodied knuckles and scabby knees. All of them. Sagarmatha and her courtiers.
Scraaaaaaaaape.
I am writing this because fluffing over the reality of the situation by saying how wonderful it all is, is a giant crock of shit and will serve him nothing.
I am writing this because I am honest to a fault.
Because that honesty has made me enemies.
Becuase that honesty has made me friends.
Because that honesty has MADE me.
Read into this what you will,
Judge as you may,
Know that I have no shame about my son.
Beyond my un-ending love, well past my pride, I have only worry. Gargantuan worry.
I have only sadness that he has to try ten times harder than an ordinary kid to do everything he does.
And still there he DOES. That spoon goes into mush and up to mouth and into mush and up to mouth and some splats on the floor and some goes into hair. Like any other kid learning to feed himself.
Like any kid learning to FEED HIMSELF. What a ridiculously hard thing for some human beings to do. If you do not live this, bear witness to this every.bloody.day. take a breath and put on my shoes and then fling them away because you won't be able to wear them for long.
It's a hard goddamn life, this one.
But still my Rukai DOES. He does, and he does and he does.
He blows my mind. I love him so much I can hardly breathe.
And there, he is not a shiny happy person. He is a boy with a temper. With a path, and a past and a present and a future. He is all too often a whiny, crabby miserable toddler when he doesn't get his way.
Mama's boy.
He is a stereotype slayer. He is not a condition and he is trying so freaking hard every day to learn, to try, to fly. My heart aches for him in every possible way. I wish I could take that struggle and put it in a box and send it out on the jet stream. But I cannot.
When I see him agonize over the inability to do something and then get up and try again, and again, and again. To require nothing from me other than to be beside him. Because he will push himself.
He is staggering up that fucking mountain and he is pushing himself. Show that pediatrician, that stupid nurse, that rude health visitor, all those people, show them that fire. Show them who he is, what he is capable of. Show them.
Yes, dear...it IS my place to prove those doctors wrong. That is precisely why I am not a shitty parent. And why he gets so livid when met with failure. He stands up. Like Tom Cruise's Hollywood Samurai who gets the stuffing knocked out of him in the rain and the mud he staggers up and up and up and keeps on fighting.
Like that horse, he keeps on running.
So I'll hand him a spoon. If he drops it I'll pick it up and give it back. Just like any other kid.
There will be more tears. But one day there will be words. And steps. And Iloveyoumama's.
Today that day feels light years away, like I'll be an old woman by the time it arrives.
But age is just a number.
Put it in the ground where the flowers grow, and rock THIS.
Friday, 22 August 2014
Don't believe everything you read.
I hadn't planned on wasting space in my blog commenting on this but it's as good a place as any to capture my thoughts on the recent furore surrounding the very unfortunate Tweet and subsequent half-arsed apology from supposed 'academic' Richard Dawkins. I won't honor it by linking to it, so if you haven't read it and want to, scamper off to Google and search away.
Right. In short, I think he's an utter twat. But I guess I can't let it sit with that.
As the parent of a child with Down's syndrome I find Dawkins' "apology" entirely unapologetic, entirely uninformed and if it can actually be possible, even worse than the original statement and here's why:
He says "I personally would go further and say that, if your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare."
Whereas what he's said there is a big blob of uninformed fearmongering, herein lies the reality: having our son - not "our Down son" but our SON - has increased the sum of our happiness and those whose lives he touches tenfold. Same as any other child would. Moral dilemma? Um, no.
Let's move on.
None of us are suffering in the least, other than from having to listen to misinformed claptrap in perpetuity. In fact, we probably celebrate each day and its milestones far more than parents of a so-called 'normal' child with far loftier expectations and constant pressure to go bigger, better, faster, more. We are allowed to find joy in the miniscule. We are allowed to appreciate a slower pace. I have smelled the flowers time and again. Tell me again how this is a bad life? Thanks, but I'll take our small joys over Dawkins' lofty expectations and loftier disappointments. I'll take our contented child over a screaming tearaway. Go on and run past us. We'll have a seat and laugh at your gangly flailing limbs.
We lived slowly before he came to us. Rukai's pace is a gift. We all FIT. He is our guide, not our burden.
Rukai's future is a big vast unknown - well whaddayaknow, just like everyone else's. He will probably need help getting by in the future but that is what advance planning and education are for.
Try again, Dick.
Now, Dawkins clearly does not know that there is an absolute CHASM between both extremes of affectation from the side effects of this condition. And there hasn't been nearly enough research done to date to determine why this is. But all the general populace seems to be told about and to be aware of is the "worse case scenario" which is not the reality. We know this plainly and our son is only 2-1/2. My friends know this because I make sure I tell them this. If anything, at least I've been able to educate my friends. If that is all I can do, I have done my best.
This is what is so distressing to us and to many families who are railing about the stupidity of this man's flippant statement. It is no different than generalizing about any segment of the population. Perpetuating a lie. You cannot say "all redheads have short tempers", "all English people drink tea", "all Brazilians like soccer" and have it be truth. These are beliefs, not catch-alls. This is the plight of people with Down's syndrome and the apathy of a society which chooses to stay in the dark and to not bother learning anything about an unknown.
I thought we were supposed to learn all our lives. Sad that some choose not to, especially when they are supposed to be the big thinkers of our society.
Because of all the "worse case scenario" we were delivered ante-natally, like many new mothers of kids with DS I was terrified when Rukai was born. In fact, I wailed. I wailed at what I thought I'd "lost".
What a complete and utter ass I was.
Rukai does not sit and stare blankly at the walls.
Rukai is not unable to learn, is not lazy, is not unmotivated.
Rukai has the temper of a dragon when he is cheesed off. Although happy is his default he most certainly is not always happy. He is not happy because he has DS. He is happy because he is content, secure, autonomous, at peace.
Rukai has learned to feed himself finger food, he is working on walking, he loves to read books and play with cars. To stack blocks and to bash those blocks down. To throw a ball across the room, to chase it and throw it again. To splash around in the bathtub and to go on the swings at the park.
He is learning and doing the same things as any other child. He has some slight difficulties (hell, I'll even offer "problems") due to his condition, but they don't cause 'suffering'. They cause him to slow down and work a little harder than the average bear.
Dawkins thinks this process of working harder must surely be synonomous with suffering. Dawkins is wrong. This is called PERSEVERANCE. Grit. Determination. Effort.
People suffer from these things now? Oh woeisme, I am suffering so much from perseverance. Man alive, I am in agony from my determination. This is awful, please someone come save my ass.
Wait! Wait! This is what you academics do.
Dick.
Fact remains, Rukai is just like any other child. I wish like hell people like Dawkins who don't know a goddamn thing about Down's syndrome would quit making assumptions and instead actually go spend some time with someone who has the condition. No, scratch that, spend time with a few people who have the condition, lest you form your opinion on the single person you meet.
Dear society: don't believe everything you read.
I certainly did not know this before Rukai was born but I know now that Down's syndrome is actually classified a learning disability - one with a huge range of 'side effects'. Not everyone with DS is affected by all the side effects. But parents of children with this condition are consistenly told what their kids WON'T be able to do and achieve, due largely in part to so-called academics spouting off about statistics. I don't believe in statistics, because despite the fact that science begs life to be entirely black and white, fact remains we all live in the Grey. And science cannot change this with its desperate need to organize and order everything. Are we not all unique? No one belongs in ANY box.
Statistically, as a white American Catholic woman, I was not supposed to move to England and marry an Asian Mauritian Hindu man. But I did. What are the stats on that?
Don't believe everything you read.
I can also say I know someone who was supposed to soar in life, with a brilliant mind and endless possibility, endless opportunity growing up in a particularly affluent area. This person is now suffering the result of a lifetime of their own bad decisions and living in the bottle. That's not supposed to happen, right? Statistically? And THAT, friends, is what true suffering looks like.
Don't believe everything you read.
Point is, if Dawkins is an academic and wants to very publicly opine about something this important to so many families, he should actually learn about it before only speaking in terms of what HE thinks and what HE believes. Because in the great grand scheme of things, what he thinks doesn't mean squat to anyone other than himself and anyone not clever enough to think up their own ideas about life and all its mysteries.
My Dad always used to remind me there are leaders and followers in this life. I know which I'd prefer to be and feel plainly sad for the rats lining up behind Dawkins' pipe. Open your other eye, people. And if you can't face forming your own opinions, I'm sure there are plenty of other atheists to follow - all plenty easy to find in this wired up age.
I am very much pro choice, but will leave you with this: I haven't really seen it mentioned anywhere, but sometimes those pre-natal tests are wrong and the child is born with no medical condition whatsoever. Where is the morality in terminating that pregnancy?
You started a fire, Dick. Perhaps you should throw the remainder of your arrogant opinions on top.
Right. In short, I think he's an utter twat. But I guess I can't let it sit with that.
As the parent of a child with Down's syndrome I find Dawkins' "apology" entirely unapologetic, entirely uninformed and if it can actually be possible, even worse than the original statement and here's why:
He says "I personally would go further and say that, if your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare."
Whereas what he's said there is a big blob of uninformed fearmongering, herein lies the reality: having our son - not "our Down son" but our SON - has increased the sum of our happiness and those whose lives he touches tenfold. Same as any other child would. Moral dilemma? Um, no.
Let's move on.
None of us are suffering in the least, other than from having to listen to misinformed claptrap in perpetuity. In fact, we probably celebrate each day and its milestones far more than parents of a so-called 'normal' child with far loftier expectations and constant pressure to go bigger, better, faster, more. We are allowed to find joy in the miniscule. We are allowed to appreciate a slower pace. I have smelled the flowers time and again. Tell me again how this is a bad life? Thanks, but I'll take our small joys over Dawkins' lofty expectations and loftier disappointments. I'll take our contented child over a screaming tearaway. Go on and run past us. We'll have a seat and laugh at your gangly flailing limbs.
We lived slowly before he came to us. Rukai's pace is a gift. We all FIT. He is our guide, not our burden.
Rukai's future is a big vast unknown - well whaddayaknow, just like everyone else's. He will probably need help getting by in the future but that is what advance planning and education are for.
Try again, Dick.
Now, Dawkins clearly does not know that there is an absolute CHASM between both extremes of affectation from the side effects of this condition. And there hasn't been nearly enough research done to date to determine why this is. But all the general populace seems to be told about and to be aware of is the "worse case scenario" which is not the reality. We know this plainly and our son is only 2-1/2. My friends know this because I make sure I tell them this. If anything, at least I've been able to educate my friends. If that is all I can do, I have done my best.
This is what is so distressing to us and to many families who are railing about the stupidity of this man's flippant statement. It is no different than generalizing about any segment of the population. Perpetuating a lie. You cannot say "all redheads have short tempers", "all English people drink tea", "all Brazilians like soccer" and have it be truth. These are beliefs, not catch-alls. This is the plight of people with Down's syndrome and the apathy of a society which chooses to stay in the dark and to not bother learning anything about an unknown.
I thought we were supposed to learn all our lives. Sad that some choose not to, especially when they are supposed to be the big thinkers of our society.
Because of all the "worse case scenario" we were delivered ante-natally, like many new mothers of kids with DS I was terrified when Rukai was born. In fact, I wailed. I wailed at what I thought I'd "lost".
What a complete and utter ass I was.
Rukai does not sit and stare blankly at the walls.
Rukai is not unable to learn, is not lazy, is not unmotivated.
Rukai has the temper of a dragon when he is cheesed off. Although happy is his default he most certainly is not always happy. He is not happy because he has DS. He is happy because he is content, secure, autonomous, at peace.
Rukai has learned to feed himself finger food, he is working on walking, he loves to read books and play with cars. To stack blocks and to bash those blocks down. To throw a ball across the room, to chase it and throw it again. To splash around in the bathtub and to go on the swings at the park.
He is learning and doing the same things as any other child. He has some slight difficulties (hell, I'll even offer "problems") due to his condition, but they don't cause 'suffering'. They cause him to slow down and work a little harder than the average bear.
Dawkins thinks this process of working harder must surely be synonomous with suffering. Dawkins is wrong. This is called PERSEVERANCE. Grit. Determination. Effort.
People suffer from these things now? Oh woeisme, I am suffering so much from perseverance. Man alive, I am in agony from my determination. This is awful, please someone come save my ass.
Wait! Wait! This is what you academics do.
Dick.
Fact remains, Rukai is just like any other child. I wish like hell people like Dawkins who don't know a goddamn thing about Down's syndrome would quit making assumptions and instead actually go spend some time with someone who has the condition. No, scratch that, spend time with a few people who have the condition, lest you form your opinion on the single person you meet.
Dear society: don't believe everything you read.
I certainly did not know this before Rukai was born but I know now that Down's syndrome is actually classified a learning disability - one with a huge range of 'side effects'. Not everyone with DS is affected by all the side effects. But parents of children with this condition are consistenly told what their kids WON'T be able to do and achieve, due largely in part to so-called academics spouting off about statistics. I don't believe in statistics, because despite the fact that science begs life to be entirely black and white, fact remains we all live in the Grey. And science cannot change this with its desperate need to organize and order everything. Are we not all unique? No one belongs in ANY box.
Statistically, as a white American Catholic woman, I was not supposed to move to England and marry an Asian Mauritian Hindu man. But I did. What are the stats on that?
Don't believe everything you read.
I can also say I know someone who was supposed to soar in life, with a brilliant mind and endless possibility, endless opportunity growing up in a particularly affluent area. This person is now suffering the result of a lifetime of their own bad decisions and living in the bottle. That's not supposed to happen, right? Statistically? And THAT, friends, is what true suffering looks like.
Don't believe everything you read.
Point is, if Dawkins is an academic and wants to very publicly opine about something this important to so many families, he should actually learn about it before only speaking in terms of what HE thinks and what HE believes. Because in the great grand scheme of things, what he thinks doesn't mean squat to anyone other than himself and anyone not clever enough to think up their own ideas about life and all its mysteries.
My Dad always used to remind me there are leaders and followers in this life. I know which I'd prefer to be and feel plainly sad for the rats lining up behind Dawkins' pipe. Open your other eye, people. And if you can't face forming your own opinions, I'm sure there are plenty of other atheists to follow - all plenty easy to find in this wired up age.
I am very much pro choice, but will leave you with this: I haven't really seen it mentioned anywhere, but sometimes those pre-natal tests are wrong and the child is born with no medical condition whatsoever. Where is the morality in terminating that pregnancy?
You started a fire, Dick. Perhaps you should throw the remainder of your arrogant opinions on top.
Monday, 4 August 2014
This place is New.
I'm sat in what is still a new house, empty save for me and a few wayward silverfish. Lulled by the hum of a cooker hood watching over a pot of lentils that doesn't want to finish boiling, a small fan creaking cool air across a still-unfamiliar living room, a humming dehumidifier blotting the moisture out of the air. When I wonder if it's working, it deposits a slurpy dribbly splashy thing into the reservoir and I remember that sound from our old leaky kitchen tap. Before we left that place and all it's black memories in the past.
This place is new. This life is new. We are new, fresh, beginning again.
Nine days to 2-1/2. A lifetime from that Birth Day. A world away from how can we do this? and slap bang in the midst of HERE'S how we do this. We are always on the verge: of succeeding, of learning, of doing, and with each trip out and into the rest of the world, Rukai succeeds. Rukai learns. Rukai does.
This place is new.
New life has bloomed out of big noise. And my God, life has been loud. Deafening. Life has been, for all intents and purposes, borderline unbearable. These past few months had us all teetering on the precipice of this-could-go-either-way-so-close-your-eyes-jump-and-hope-for-the-best. We held each other and jumped. And here we are flying again.
This place is new.
I cannot speak for my husband- nor have I ever-but I have reached this place by shedding nearly all of the old one. That place was like a frozen cocoon, like the Iron Mask in that Leo DiCaprio film. He wore the damn thing so long he grew to love it. And then it was peeled back and clamped on to the rightful wearer and he was free and he no longer needed the mask.
I call that mask Denial. That mask is a dangerous piece of work - it fits and caresses and leads to false hopes. But I wore it. And then, here this butterfly comes out and it flies, and there are massive wings and there is realization and belief and reality.
This place is new.
Now, this Denial isn't that Rukai has Down's syndrome. It isn't that his development is delayed. It isn't anything that has anything directly to do with our son. This Denial has always been that 'The System' and 'Society' and everyone else 'Out There' will just let us live. Here. In The New.
But they won't. They won't and I hate it. I still hate it.
Hate? Why? (But this place is NEW.)
This place is new because I have come to accept it. I accept that it IS. I accept that it probably will not change.
But I do not have to back down and let it roll over us. Here in this new place, I have now learned how to Begin.
I have now learned that this life is not going to be our own, despite what we want and have tried to protect. There is a label.
I have now learned that this life will be full of intrusion and interference and forms and paperwork and people-who-think-they-know-our-son-better-than-we-do. There is a label.
I have now learned this, and I have come to accept it. I accept that there is a label.
But friends of the medical persuasion, of the education system, allow me to firmly invite you to understand that although there is a label, you are in no way, shape or form going to use it to box in our son when we have merely asked your help in ensuring he seeks his heights. The quicker you understand this, the better we'll get along.
Take your label. Place it in your book of boxes to tick. Set it down on the table and look Rukai in the eye. Look ME in the eye. Take your label, for your label may not take our son.
I spoke the other day to friends about the weight of 'extra'. Introduce special needs to the search for a nursery and it is no longer merely about 'can we afford it, what are the hours, is it good enough, will he be safe'. It is that, plus 'is mainstream the right decision, should we even consider special needs nursery, will he be allowed to mix with his peers, will it cost more because he needs more help, how much more help does he need, will they actually provide it, if it costs more can we get financial assistance, will his peers accept or bully him, at what point will he really start to fall behind, which forms do I have to fill out, where do I find the forms, are there really 48 pages on this form, who do we need to speak with, who will lead us astray?' In my heart of hearts, I fear for him, so much sometimes it renders me entirely unable to think about anything else. The worry is a personal Armageddon.
Rukai will be assessed and they will tell us things we don't want to hear. They will tell us things we don't want to hear because we have been tucked safely away in that place called Denial, where we have done a fine job of raising our son to develop at a pace called 'Rukai' and that development is just fine for us and for our expectations. But those people will demand they have a chance to push him harder, to make him catch up and lo and behold there we are again on that 'what is he catching up to?' choo choo.
Damn it, can't they just let him grow?
Can't they ask us what we THINK?
What we BELIEVE?
What we WANT?
For him? For our son?
Please if there is a higher power, let them ASK. Let them bloody ASK. Do not let them try to TAKE because this continues to not register in my allow list and things will go back south on the express train faster than you can say 'it's his life and you do not own him'.
We are in this new place, and we are yet to meet those people but it is looming. It is looming and I have never been so nervous to meet someone in my life. More so than getting on an airplane and flying 4000 miles to meet for the first time the man who would become my husband. More so than meeting Rukai himself on that cold February afternoon that should have been all Dream and those people tried to turn straight into Nightmare.
Sorry folks, we hung on to Dream. And you are no longer seated in the audience.
Because this place is new.
I have never been so nervous because I want so desperately for them to respect us as our son's parents, his caregivers. To work with us and agree the course, not to ignore our wishes and try to take ownership of our son's wellbeing. Assign a label and suddenly parents are no longer capable of making the right decisions for the health, wellbeing and protection of their own child? Ludicrous.
I no longer want to be constantly fighting off intrusion and patronization. I do not express such arrogance in my own work so I simply cannot fathom why others do. I want so desperately for them to understand that Rukai is a person and not a diagnosis. He is not a label, and we are not uninformed and unable to act in his best interests. The others whom we left behind could not register that no, they did NOT know better.
But this place is NEW.
This place is called HOPE.
We are bum shuffling and furniture cruising and stair climbing our way into tomorrow. We have stepped into our armor and raised our shields. We have sheathed our swords for now but believe you me, if invited we will do the necessary battle to protect our son. His right to be heard. His right to BE.
We have left the tick boxes behind.
Show us your promise.
Show us your partnership.
Show us your relevance.
Show us your support.
Show us your thoughts about tomorrow.
Open your ears.
Open your hearts.
Know him. Respect him.
He is Rukai.
This place is new. This life is new. We are new, fresh, beginning again.
Nine days to 2-1/2. A lifetime from that Birth Day. A world away from how can we do this? and slap bang in the midst of HERE'S how we do this. We are always on the verge: of succeeding, of learning, of doing, and with each trip out and into the rest of the world, Rukai succeeds. Rukai learns. Rukai does.
This place is new.
New life has bloomed out of big noise. And my God, life has been loud. Deafening. Life has been, for all intents and purposes, borderline unbearable. These past few months had us all teetering on the precipice of this-could-go-either-way-so-close-your-eyes-jump-and-hope-for-the-best. We held each other and jumped. And here we are flying again.
This place is new.
I cannot speak for my husband- nor have I ever-but I have reached this place by shedding nearly all of the old one. That place was like a frozen cocoon, like the Iron Mask in that Leo DiCaprio film. He wore the damn thing so long he grew to love it. And then it was peeled back and clamped on to the rightful wearer and he was free and he no longer needed the mask.
I call that mask Denial. That mask is a dangerous piece of work - it fits and caresses and leads to false hopes. But I wore it. And then, here this butterfly comes out and it flies, and there are massive wings and there is realization and belief and reality.
This place is new.
Now, this Denial isn't that Rukai has Down's syndrome. It isn't that his development is delayed. It isn't anything that has anything directly to do with our son. This Denial has always been that 'The System' and 'Society' and everyone else 'Out There' will just let us live. Here. In The New.
But they won't. They won't and I hate it. I still hate it.
Hate? Why? (But this place is NEW.)
This place is new because I have come to accept it. I accept that it IS. I accept that it probably will not change.
But I do not have to back down and let it roll over us. Here in this new place, I have now learned how to Begin.
I have now learned that this life is not going to be our own, despite what we want and have tried to protect. There is a label.
I have now learned that this life will be full of intrusion and interference and forms and paperwork and people-who-think-they-know-our-son-better-than-we-do. There is a label.
I have now learned this, and I have come to accept it. I accept that there is a label.
But friends of the medical persuasion, of the education system, allow me to firmly invite you to understand that although there is a label, you are in no way, shape or form going to use it to box in our son when we have merely asked your help in ensuring he seeks his heights. The quicker you understand this, the better we'll get along.
Take your label. Place it in your book of boxes to tick. Set it down on the table and look Rukai in the eye. Look ME in the eye. Take your label, for your label may not take our son.
I spoke the other day to friends about the weight of 'extra'. Introduce special needs to the search for a nursery and it is no longer merely about 'can we afford it, what are the hours, is it good enough, will he be safe'. It is that, plus 'is mainstream the right decision, should we even consider special needs nursery, will he be allowed to mix with his peers, will it cost more because he needs more help, how much more help does he need, will they actually provide it, if it costs more can we get financial assistance, will his peers accept or bully him, at what point will he really start to fall behind, which forms do I have to fill out, where do I find the forms, are there really 48 pages on this form, who do we need to speak with, who will lead us astray?' In my heart of hearts, I fear for him, so much sometimes it renders me entirely unable to think about anything else. The worry is a personal Armageddon.
Rukai will be assessed and they will tell us things we don't want to hear. They will tell us things we don't want to hear because we have been tucked safely away in that place called Denial, where we have done a fine job of raising our son to develop at a pace called 'Rukai' and that development is just fine for us and for our expectations. But those people will demand they have a chance to push him harder, to make him catch up and lo and behold there we are again on that 'what is he catching up to?' choo choo.
Damn it, can't they just let him grow?
Can't they ask us what we THINK?
What we BELIEVE?
What we WANT?
For him? For our son?
Please if there is a higher power, let them ASK. Let them bloody ASK. Do not let them try to TAKE because this continues to not register in my allow list and things will go back south on the express train faster than you can say 'it's his life and you do not own him'.
We are in this new place, and we are yet to meet those people but it is looming. It is looming and I have never been so nervous to meet someone in my life. More so than getting on an airplane and flying 4000 miles to meet for the first time the man who would become my husband. More so than meeting Rukai himself on that cold February afternoon that should have been all Dream and those people tried to turn straight into Nightmare.
Sorry folks, we hung on to Dream. And you are no longer seated in the audience.
Because this place is new.
I have never been so nervous because I want so desperately for them to respect us as our son's parents, his caregivers. To work with us and agree the course, not to ignore our wishes and try to take ownership of our son's wellbeing. Assign a label and suddenly parents are no longer capable of making the right decisions for the health, wellbeing and protection of their own child? Ludicrous.
I no longer want to be constantly fighting off intrusion and patronization. I do not express such arrogance in my own work so I simply cannot fathom why others do. I want so desperately for them to understand that Rukai is a person and not a diagnosis. He is not a label, and we are not uninformed and unable to act in his best interests. The others whom we left behind could not register that no, they did NOT know better.
But this place is NEW.
This place is called HOPE.
We are bum shuffling and furniture cruising and stair climbing our way into tomorrow. We have stepped into our armor and raised our shields. We have sheathed our swords for now but believe you me, if invited we will do the necessary battle to protect our son. His right to be heard. His right to BE.
We have left the tick boxes behind.
Show us your promise.
Show us your partnership.
Show us your relevance.
Show us your support.
Show us your thoughts about tomorrow.
Open your ears.
Open your hearts.
Know him. Respect him.
He is Rukai.
Tuesday, 8 April 2014
You take your stand.
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
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
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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