It starts with a visit to a grotty old building, tucked away in the middle of some road on the side of town you aren't interested in visiting now, later, ever. But it is there you go because that's where They tell you to go.
They deny your husband access to the first conversation. Your conversation. About his child. Because he is guilty before being proven innocent. Accused of behavior he would not, could not display. "But he's taken the day off for this," says you. You are rebuffed. For the first time, rebuffed. For the first time, but not the last.
"Sorry, WE run this. You in, him out."
"Oh!" says you. Your eyes meet. There is a chasm of sorrow in his. Enter anger. You turn and step inside. You pay little attention to your conversation because it is missing half of what created the need for it.
Oh.
Minutes, days, weeks, pass and pass and pass. The child grows. The child grows and the worries grow because you are no longer a young mother, but you are of Advanced Maternal Age. You are to be owned because what you have will surely become their Burden. Their Financial Bugbear.
Imagined and foolhardy as this presumption is, they are confident of it, having seen it through their invisible crystal ball, formed of statistics and 20 minute observations. Of small samples and a history that quashed and hid away and ruined each and every possibility.
Those beliefs formed by believing in labels and supposition and to hell with actualities.
They OWN you. Still, they fear what you have. You have the strength and the knowledge and the belief that it is ok now. That it will be ok tomorrow. You have a spine of steel and resolve to match. And you deliver.
You speak the words. "Whether it lives eight minutes, eight days or eight decades, we are going to have this baby."
And oh how They fear you! Because you do not fear them. And you speak, and you speak and you speak, my God how you speak. If you do anything from today into forever it is that thing which you must do and do without hesitation, without reservation.
Speak. Until he can speak, you just go on and SPEAK.
They hand you another form, this a booking form for this blood test, that follow up appointment, two more hours of life wasted away staring at hospital walls with scowling staff who don't have a clue how much love you have for this little bump already. Who don't have the foggiest idea of what his possibilty is. They can't predict this any more than they can tell you he will have his grandpa's hair and his daddy's eyelashes. Just what you wished for.
Just that.
So you wait and you talk and they do their best again to prevent that joy from blossoming because when that joy blossoms, it explodes to the very milky WAY, it is intergalactic, it is nothing they could ever possibly know. They of the scowls and lab coats and tests which prove nothing more than assumptions are nothing. They are 50/50. One assumption tells you "it could be something, it could be nothing." To bleed fear on maybeitismaybeitisn't is the only suffering being done in this entire situation. Despite the gargantuan amount of suffering They tell you the child will face.
This, you will discover, is a nonsense.
One assumption tells you this is a HE. This assumption tells you my SON. It is a son.
But this you knew already. Because that bump lives in you and not in those cold corridors. And you danced around the house cradling that bump. You took the earbud headphone and popped it into your belly button so he could jive to Stevie Wonder and groove to the Grateful Dead. You danced and rejoiced and did your best to find your joy while they rattled your cage with their worry. Their words consistently delivering blows, you dreaded skulking back down the shining white corridor of the negative to get the wind knocked out of you again. Deep breath. Stand up. Stand up. Stand. Up.
This place is like a cloak. This place covers and mashes and smothers and denies.
Joy.
He arrives. They scurry across the room. They who didn't want him to be and there he IS. They didn't want him to be because their crystal ball says he will be unwell. He will need FIXING. Fix him, he's broken, he's wrong, he's not what we want to deal with, he is a predicament. They frown at you, the corners of their mouths poking up in artificial smiles. You cradle him. You love him. He is your joy.
(What you are and what you're meant to be,
speaks his name though you were born to me.*)
They scurry and scurry. Like rats they scurry. Picking at the scraps you leave behind because they cannot have the main course, this is LIFE on the menu. This is joy.
Don't go choking on those bones, you rats. You have been warned, there is nothing for you here. Best you listen to a Mother next time. Learn. Think you know? Learn more. Go.
Years pass. Time is slow. Achievements are enormous. You begin to identify the reality. That he really can dance. That he seeks out the boombox and presses that button. That he grabs your hands so that you can march to and fro and around and around and around to Monster Mash. That fun magical song you loved too. He marches. He watches you like a hawk. You passé and he passés. You jump and he lifts those heels up and down up and down. He DANCES. Weeping, weeping, whirling and twirling, this is magic, this is Love. This is JOY.
Still he doesn't speak. He works on telling you things with his hands. Sign language. This wasn't part of the plan but ok, as long as you've passed the ram it down our throats phase you run with it. You identify what you think he needs. They are in the back seat. You have developed the ability to tune them out. This is your get out of jail free card. Forever.
They who thought he should not Be, yet once he arrived They tried for so long to dictate how you should help him Be. And you say "no. No you won't. You didn't want him, do you remember? Do you see? Do you see it now? Open your eyes. We see. This reality is not your house of horrors. You have forfeited your control with your negativity. Too bad, not sad."
Joy. Ours is Joy.
You proceed to ask for help where you think it's necessary. But you only get instructions. Orders. Is help out there? Time will tell. You see what they say they have observed but you know he is far more. He is greater than an A4 sheet of observations. You write and deliver them the truth. The truth that he is infinite, he is telling THEM his story. They will not steal it and attempt to write it for him because he is more than they can ever imagine themselves to be. They are signposts, they are tick boxes, they are not Help. And they will not steal him from himself.
So you read. You learn. You guide. You work. You talk. You write. You share. You analyze. You converse. You ask.
You teach. You teach. You teach.
The music plays and you remember. You remember what your road looked like at the start. The scenery along the sides, the trees and the rain and the smell of the wet moss. You have walked some of it, danced some of it, run some of it. The smell renewed after every downpour. The rain cleanses. The music nourishes. The words your salve. Your salvation.
He is three and a half. The world will soon take him in. Take him ON. You worry if you have done enough.
Yes. Always.
_____
Fare thee well now
Let your life proceed by its own design
Nothing to tell now
Let the words be yours, I'm done with mine
Flight of the seabirds
Scattered like lost words
Wield to the storm and fly.
* Grateful Dead, 'Cassidy'
Tuesday, 11 August 2015
Saturday, 2 May 2015
To the Doctor who Reached Out.
Four medical appointments over 12 days.
Four.
Rukai spots a bit of fluff in the carpeting from twenty paces and goes to retrieve it.
"We must monitor his vision. THEIR eyes are commonly not working properly."
A rattle of keys in the front door turns his head. His eyes go wide and fingers point at the arrival of his Daddy. Down the hall, I open the bathroom door. One door is quickly disregarded for the other and he comes charging down the hallway to interrupt me, his curiosity piqued.
"We must monitor his hearing. THEY commonly have hearing loss."
Pediatrician 1 cannot confirm another issue, off to Pediatrician 2. I tell Pediatrician 2 that over the years, we have left off therapists and unnecessary appointments because Rukai is driving his own development. We don't want his default to change from easygoing, chilled, to pressured, overworked.
He's only 3. A three year old should not be overworked. A three year old should play. A three year old should not sacrifice his daylight to waiting rooms in search of issues which mayormaynotmaterialize.
"Oh yes," says He. "THEY are very happy people."
(Except when he's being a monstrous little shit, Old Mister P2. Come to mine when we've got a new menu item and watch me try to get it down him. If that is happy, then Bozo the Clown got it all wrong and we're living amongst the comedy of Pennywise.)
Saturday comes and we have The Baseline Echo. Two years since discharge from cardiology at Great Ormond Street. Yes, THAT amazing place. Yet here we are having A Baseline Echo. Doctor suggests he may call us in for a follow up and Tiger Mama pounces.
The hell you will. "He was discharged two years ago," says I.
Doctor is calm. Doctor is the very best doctor I have come across in my entire 13-1/2 years living in this country.
Doctor and Tiger Mama smokem Peace Pipe and reach agreement. Daddy sits quietly, watching, listening, asking. Don't poke a stick at this Quiet Man or he will become Tiger Dad and you don't want that tag team in this very quiet hospital this early in the day.
Ever.
Doctor is calm.
Doctor is the very best doctor I have come across.
Heart too, is calm. Heart is fine. As we knew.
Born with two holes in it, today there are none.
No surgery required.
Rukai 1 : Pessimism 0.
Rukai wins.
We leave shaking hands.
We leave shaking heads.
Four appointments. Twelve days. 33% of our time over the better part of a month spent visiting doctors when there is pretty much nothing wrong.
They call it 'health monitoring' but it feels an awful lot like Big Brother.
This is in no way "the life". But this is The Life.
We drop everything, we drive to and fro, we pay, we park. You poke and prod. Rukai thrashes and shouts. Cut it out. Quit poking me. You just weighed and measured me two days ago. Stop shining that goddamn light in my eyes. Get that fucking thing out of my ear. That gel on my chest is cold. I was fine and you are now really pissing me off.
THEY are not always happy.
God damn it, stop suggesting it.
And stop calling my son THEY.
I told the Doctor (because he did drop a 'they' early on in the conversation) that the services were crap where we lived, that those people threw Rukai into a box labeled Down's syndrome and discounted him. So we packed up and moved house to begin again.
"He is our SON. He is our child. He is our world," says I. "He is not THEY."
And this Doctor, he nodded. He smiled and he nodded and he kept scanning for a problem that did not exist. He searched for one acronym and I told him it was the other acronym we were looking for, that the notes were wrong, that it is column B not column A.
And this doctor, he smiled and he nodded and he GETS it.
My goodness, he GETS it. I wish for the world, that they all could GET IT. I explained at length why Tiger Mama pounced initially and he GETS it.
"You just want a normal life. If nothing is wrong, you just want to get on with things," says he.
Thank you. My faith is restored. And so we agree to a suggested check up five years hence - 'suggested' being the operative word, no 'mandatories' here.
Thank you for hearing us.
Thank you for listening to us.
Thank you for understanding us.
I told him where we came from and to where we've gone.
I told him how bad it was there and what we endured.
My words did not ricochet off. They nestled in and had a cuppa.
We turned to go and Rukai turned towards him.
We turned to go and there was a high five.
We turned to go and Rukai reached out. To the Doctor who Reached Out.
Rukai delivered a cuddle.
Rukai is the world's greatest bullshit detector and that cuddle was there for the giving.
To the Doctor who Reached Out.
This is The Life. But we are now very firmly in the driver's seat.
Thank you Doctor.
Four.
Rukai spots a bit of fluff in the carpeting from twenty paces and goes to retrieve it.
"We must monitor his vision. THEIR eyes are commonly not working properly."
A rattle of keys in the front door turns his head. His eyes go wide and fingers point at the arrival of his Daddy. Down the hall, I open the bathroom door. One door is quickly disregarded for the other and he comes charging down the hallway to interrupt me, his curiosity piqued.
"We must monitor his hearing. THEY commonly have hearing loss."
Pediatrician 1 cannot confirm another issue, off to Pediatrician 2. I tell Pediatrician 2 that over the years, we have left off therapists and unnecessary appointments because Rukai is driving his own development. We don't want his default to change from easygoing, chilled, to pressured, overworked.
He's only 3. A three year old should not be overworked. A three year old should play. A three year old should not sacrifice his daylight to waiting rooms in search of issues which mayormaynotmaterialize.
"Oh yes," says He. "THEY are very happy people."
(Except when he's being a monstrous little shit, Old Mister P2. Come to mine when we've got a new menu item and watch me try to get it down him. If that is happy, then Bozo the Clown got it all wrong and we're living amongst the comedy of Pennywise.)
Saturday comes and we have The Baseline Echo. Two years since discharge from cardiology at Great Ormond Street. Yes, THAT amazing place. Yet here we are having A Baseline Echo. Doctor suggests he may call us in for a follow up and Tiger Mama pounces.
The hell you will. "He was discharged two years ago," says I.
Doctor is calm. Doctor is the very best doctor I have come across in my entire 13-1/2 years living in this country.
Doctor and Tiger Mama smokem Peace Pipe and reach agreement. Daddy sits quietly, watching, listening, asking. Don't poke a stick at this Quiet Man or he will become Tiger Dad and you don't want that tag team in this very quiet hospital this early in the day.
Ever.
Doctor is calm.
Doctor is the very best doctor I have come across.
Heart too, is calm. Heart is fine. As we knew.
Born with two holes in it, today there are none.
No surgery required.
Rukai 1 : Pessimism 0.
Rukai wins.
We leave shaking hands.
We leave shaking heads.
Four appointments. Twelve days. 33% of our time over the better part of a month spent visiting doctors when there is pretty much nothing wrong.
They call it 'health monitoring' but it feels an awful lot like Big Brother.
This is in no way "the life". But this is The Life.
We drop everything, we drive to and fro, we pay, we park. You poke and prod. Rukai thrashes and shouts. Cut it out. Quit poking me. You just weighed and measured me two days ago. Stop shining that goddamn light in my eyes. Get that fucking thing out of my ear. That gel on my chest is cold. I was fine and you are now really pissing me off.
THEY are not always happy.
God damn it, stop suggesting it.
And stop calling my son THEY.
I told the Doctor (because he did drop a 'they' early on in the conversation) that the services were crap where we lived, that those people threw Rukai into a box labeled Down's syndrome and discounted him. So we packed up and moved house to begin again.
"He is our SON. He is our child. He is our world," says I. "He is not THEY."
And this Doctor, he nodded. He smiled and he nodded and he kept scanning for a problem that did not exist. He searched for one acronym and I told him it was the other acronym we were looking for, that the notes were wrong, that it is column B not column A.
And this doctor, he smiled and he nodded and he GETS it.
My goodness, he GETS it. I wish for the world, that they all could GET IT. I explained at length why Tiger Mama pounced initially and he GETS it.
"You just want a normal life. If nothing is wrong, you just want to get on with things," says he.
Thank you. My faith is restored. And so we agree to a suggested check up five years hence - 'suggested' being the operative word, no 'mandatories' here.
Thank you for hearing us.
Thank you for listening to us.
Thank you for understanding us.
I told him where we came from and to where we've gone.
I told him how bad it was there and what we endured.
My words did not ricochet off. They nestled in and had a cuppa.
We turned to go and Rukai turned towards him.
We turned to go and there was a high five.
We turned to go and Rukai reached out. To the Doctor who Reached Out.
Rukai delivered a cuddle.
Rukai is the world's greatest bullshit detector and that cuddle was there for the giving.
To the Doctor who Reached Out.
This is The Life. But we are now very firmly in the driver's seat.
Thank you Doctor.
Tuesday, 31 March 2015
Out like a lion.
Bluster and gust. Rain and splutter. Like me, this week has done nothing in whisper.
They say March arrives as lion and tiptoes away as lamb. Not in this life, friend, not in this one.
In this life, there are times I find myself with no words. Speechless at the wonder of what I've seen, felt, realized, done. There are times I have no words, and then they come, and they bubble and froth and boil over and rush forward as tsunami and then I am free of them, I am released. Usually this release is a black and oily thing. This is a why us? and a how come? and an oh no! and a my God! And there is a hugging of knees and a rocking and a wailing and a running away and a digging myself out, and a covering up my head and wishing the day away.
But oh no. Not today.
Today the wave is Joy.
Today the wave is Pride.
Today the wave is Progress.
Today the wave is I am. I can. I will.
Today the wave is I DID.
Today the wave is steps. Steps to. And steps fro. Without support, steps. With a laugh and a grin so wide it could embrace the world. With salty tears. With a room full of people who have seen it a million times, yet still gone silent, turned, focused on one little boy.
Walking.
Red eyes. Lumped throats. Beat-skipping hearts.
Today the wave is love and friendship. TRUE friendship. Fist pumping the air friendship. Thankheavensyougotherewethoughtmaybeyouweren'tcoming friendship. Not contrived, organized, hoped for, but TRUE. Tomorrow friendship.
Last June we moved to a new place in the hopes that the wave would follow, would sweep away all the sticky sorrow that held us all back, would free us from the past. Last June we came here to find our tomorrow. Last June was the proverbial first day of the rest of our lives. The days that have piled on top of each other like sand in a castle that goes so high it blots the sunset. The wet kind of sand that sticks and does not falter. The days that tower. The days that lay a foundation. That castle fit for a king.
Of his own destiny.
No, son. No. No one here will deny you this as long as I have your back. And I have your back. I have never had anything like I have your back.
We are sailing. All together, sailing.
Because there really ARE no words for the place we are. In every aspect of life, this place has delivered what we need in bucket loads. Blustered and gusted. Cleared the cobwebs. Parted the clouds. Painted us blue skies again.
Today the wind has toppled bins.
Today the wind has lit up the motion sensored light onandoffandonandoff like a panting phantom.
Today the wind has blown away the guesswork and the statistical suspicion.
Today the wind has erased the 'he will need..., he will require..., he will not...'
Because today he WALKED. A few steps only but he WALKED.
Unsupported by a walker.
Unsupported by his mother's hands.
Unsupported by his father's hands.
Unsupported by his nursery key worker's hands.
Unsupported by a physio.
Unsupported by the naysayers.
Unsupported by the box-tickers.
Today he walked. And tomorrow he will keep walking.
He will bluster and gust and fly and roar. And he will keep walking.
On his terms, in his time, he will keep walking.
They say March arrives as lion and tiptoes away as lamb. Not in this life, friend, not in this one.
In this life, there are times I find myself with no words. Speechless at the wonder of what I've seen, felt, realized, done. There are times I have no words, and then they come, and they bubble and froth and boil over and rush forward as tsunami and then I am free of them, I am released. Usually this release is a black and oily thing. This is a why us? and a how come? and an oh no! and a my God! And there is a hugging of knees and a rocking and a wailing and a running away and a digging myself out, and a covering up my head and wishing the day away.
But oh no. Not today.
Today the wave is Joy.
Today the wave is Pride.
Today the wave is Progress.
Today the wave is I am. I can. I will.
Today the wave is I DID.
Today the wave is steps. Steps to. And steps fro. Without support, steps. With a laugh and a grin so wide it could embrace the world. With salty tears. With a room full of people who have seen it a million times, yet still gone silent, turned, focused on one little boy.
Walking.
Red eyes. Lumped throats. Beat-skipping hearts.
Today the wave is love and friendship. TRUE friendship. Fist pumping the air friendship. Thankheavensyougotherewethoughtmaybeyouweren'tcoming friendship. Not contrived, organized, hoped for, but TRUE. Tomorrow friendship.
Last June we moved to a new place in the hopes that the wave would follow, would sweep away all the sticky sorrow that held us all back, would free us from the past. Last June we came here to find our tomorrow. Last June was the proverbial first day of the rest of our lives. The days that have piled on top of each other like sand in a castle that goes so high it blots the sunset. The wet kind of sand that sticks and does not falter. The days that tower. The days that lay a foundation. That castle fit for a king.
Of his own destiny.
No, son. No. No one here will deny you this as long as I have your back. And I have your back. I have never had anything like I have your back.
We are sailing. All together, sailing.
Because there really ARE no words for the place we are. In every aspect of life, this place has delivered what we need in bucket loads. Blustered and gusted. Cleared the cobwebs. Parted the clouds. Painted us blue skies again.
Today the wind has toppled bins.
Today the wind has lit up the motion sensored light onandoffandonandoff like a panting phantom.
Today the wind has blown away the guesswork and the statistical suspicion.
Today the wind has erased the 'he will need..., he will require..., he will not...'
Because today he WALKED. A few steps only but he WALKED.
Unsupported by a walker.
Unsupported by his mother's hands.
Unsupported by his father's hands.
Unsupported by his nursery key worker's hands.
Unsupported by a physio.
Unsupported by the naysayers.
Unsupported by the box-tickers.
Today he walked. And tomorrow he will keep walking.
He will bluster and gust and fly and roar. And he will keep walking.
On his terms, in his time, he will keep walking.
Sunday, 22 March 2015
On this Day of Days.
I posted this on my Facebook page yesterday and the warmth I was given in return from my wonderful friends astonished me and has lifted me like nothing else. My opinion may not be popular with everyone but it is what I believe, and belief can move mountains.
Just ask Rukai.
_________________________________________________________________
Today is World Down Syndrome Day. 3/21, which represents those magical 3 copies of the 21st chromosome which has made our lives slightly more complicated than the average bear. But worse? Are you joking? Thatwouldbeabigfatno.
Today I'm supposed to sing about inclusion, and provide people with information. To rally up awareness and talk about wearing odd socks as a means to open the conversation. This thing they call 'lots of socks' can be Googled. I'm not going to elaborate here.
What I will say is piffle and balderdash on the odd socks. I think the whole odd sock thing is flipping ridiculous. Although it is not the purpose behind it, I just won't pursue an avenue which allows people to compare Rukai to an odd sock. That the Shiny People don't comprehend this, I do not see. But I'm not shiny, I'm Chicago. I'm 43. I'm a realist. I'm not naive enough to hope people don't jump to negative knee jerk conclusions on the sock thing. They will. So we'll stick to our two matching socks around here.
So that said, on this Day of Days I have two things to 'sing' about...
I am most looking forward to drumming up awareness of the DS association here in the UK next weekend in the Vision Wild Run - getting muddy for my buddy. Not asking a soul for sponsorship. Just for friendship. Just for the knowledge that you all maybe have a different perspective about DS from all my harping on. That you all know my son is the bees knees and I wouldn't trade him for all the pizza in Chicago. That people with DS are people. They are not DS. That maybe you'd tell someone off if you heard them calling a person 'a Down Syndrome'. If you ever get to that place and have that chance, let me know how it went down. I will buy you dinner and think of you as a hero til my dying day.
That is how important it all is to me. That is why I harp on about it. That is why there is a hide button on FB. But if you're still with me, you are still with Rukai and that says more than a bunch of odd socks.
If you don't already know, I will share with you the fact that DS has a gargantuanly vast spectrum of affectation and lo and behold Rukai is holding his own. That magic number three is still not presenting insurmountable challenges for us in our lives.
But you know what is?
The terrible twos. Followed by the screamy threes. Toddlerhood trumps DS in this house. Lays it flat or sends it screaming. Toddlerhood. Just like you did it. Just like I did it.
We all bleed red no matter how many chromosomes float around in that blood. And on this Day of Days that is all I want you to be aware of.
Much love from us all, my friends xxx
MSN 21 March 2015
Just ask Rukai.
_________________________________________________________________
Today is World Down Syndrome Day. 3/21, which represents those magical 3 copies of the 21st chromosome which has made our lives slightly more complicated than the average bear. But worse? Are you joking? Thatwouldbeabigfatno.
Today I'm supposed to sing about inclusion, and provide people with information. To rally up awareness and talk about wearing odd socks as a means to open the conversation. This thing they call 'lots of socks' can be Googled. I'm not going to elaborate here.
What I will say is piffle and balderdash on the odd socks. I think the whole odd sock thing is flipping ridiculous. Although it is not the purpose behind it, I just won't pursue an avenue which allows people to compare Rukai to an odd sock. That the Shiny People don't comprehend this, I do not see. But I'm not shiny, I'm Chicago. I'm 43. I'm a realist. I'm not naive enough to hope people don't jump to negative knee jerk conclusions on the sock thing. They will. So we'll stick to our two matching socks around here.
So that said, on this Day of Days I have two things to 'sing' about...
I am most looking forward to drumming up awareness of the DS association here in the UK next weekend in the Vision Wild Run - getting muddy for my buddy. Not asking a soul for sponsorship. Just for friendship. Just for the knowledge that you all maybe have a different perspective about DS from all my harping on. That you all know my son is the bees knees and I wouldn't trade him for all the pizza in Chicago. That people with DS are people. They are not DS. That maybe you'd tell someone off if you heard them calling a person 'a Down Syndrome'. If you ever get to that place and have that chance, let me know how it went down. I will buy you dinner and think of you as a hero til my dying day.
That is how important it all is to me. That is why I harp on about it. That is why there is a hide button on FB. But if you're still with me, you are still with Rukai and that says more than a bunch of odd socks.
If you don't already know, I will share with you the fact that DS has a gargantuanly vast spectrum of affectation and lo and behold Rukai is holding his own. That magic number three is still not presenting insurmountable challenges for us in our lives.
But you know what is?
The terrible twos. Followed by the screamy threes. Toddlerhood trumps DS in this house. Lays it flat or sends it screaming. Toddlerhood. Just like you did it. Just like I did it.
We all bleed red no matter how many chromosomes float around in that blood. And on this Day of Days that is all I want you to be aware of.
Much love from us all, my friends xxx
MSN 21 March 2015
Wednesday, 7 January 2015
I hope you Dance.
When we first learned that Rukai had Down's syndrome, I delivered myself a crash course in knowledge building - mostly to help him thrive but also to ensure the medical people wouldn't try to steamroll us on the matter of his care going forward as they had tried to do on everything else to date.
T and I have always concurred that the best way to manage people who throw 'scripture' at you on any given subject is to study said scripture, wear it as armor and beat them to the draw. (I bet you thought I was going to say 'beat them with it', which actually is the same thing to an extent...however, not on this occasion.)
So I studied. Napping when the baby naps went out the window because it was far more important to learn more about what was supposedly in store than to sleep. A lifetime to sleep.
Over that first year if we'd had a pound for every time one of us said 'that's bullshit, just LOOK at him!' we'd have a pretty substantial bankroll here on the precipice of age three. Dare to dream.
Although a blood test told us Rukai had been diagnosed with Trisomy 21, I read up on the other two types of DS: Translocation and Mosaic, if only to add to my knowledge base. And despite what commentary, what website, what association or charity I took information from, little was doing me much good because they were already slapping that label around. Box 'em up and send 'em off to the community pediatrician. I desperately wanted to find some hope, someone who told it like it is and said it was going to be ok.
That hope is really hard to find. That truth is really hard to find.
I think I have found some of it now, but at the time I only found a beautiful montage of people who have Mosaic DS on one of the support pages. Hovering that mouseover, I'm thinking yes, this will lift me, this is hope. Click.
Over the slideshow out comes the song 'I Hope You Dance.'
I fell to pieces.
Of all a mother dreams for her child, there is likely one thing that stands light years above and beyond every small hope, every tiny vision, every short story yet to be told. And my ONE THING was Dance. It had been Dance since I was seven years old. It had been Dance when Rukai was a mere thought and it had been Dance when we were minutes from meeting him.
I hope you Dance. I hope you Dance. Please God, let him Dance.
On our NCT group 'delivery day' the lead asked us if there was one characteristic we wanted our child to have. Out of my mouth comes 'his Dad's eyelashes' but the one thing I'd really had hopes for was that I wanted him to be able to dance. I wanted Rukai to dance because I grew up embraced by the amazingly joyful past time of learning and teaching and living the power of movement.
I wanted him to have this. To live this. To be freed by this.
Seventeen years of expressing my thoughts with the flick of a wrist, the tilt of a head. Bounding across stage after stage, launching myself skyward, each movement its own revelation. Spinning and spinning and spinning each new story. Each routine playing another character, from within and from outside myself. Dance was the only way a shy, bullied kid was able to come out of her shell. Entertaining others - the applause, the joy on their faces. To be good at something that defined me, freed me. Saved me. I know how powerful that gift is.
And here I was crushed, those hopes buried in the mud beneath overpowering seeds of doubt. Rotten, moldy seeds mashed into the soil by inconsiderate and thoughtless medical people. In that instant, I went from wanting him to Dance to merely wanting him to BE. Because I'd been led to believe I should expect little more.
How is this not criminal? To dash a family's hopes so severely? To break hearts? To break spirits? On the back of 'what if's and 'maybes'? It is they who should live with the shame they try to smear across the parents of children who are merely different. I will never forget that feeling of leaving the hospital in the dark, like lepers. I do not expect to forgive it either, yet admittedly, these days are still fairly 'early'.
Such a disservice delivered us by those people. And despite how fervently I try, I cannot go back to those minutes, those scenes, that memory without the bitterness doing its own little time step across my tongue and down into my guts.
But hang on! Wait! We are on the precipice of Three!
We are Here. In the New.
This bitterness is short-lived, here as we look ahead and around and beyond. This bitterness is overcome by sweet success (aftersuccessaftersuccess) because when this bitterness dares to fester, Rukai always outshines it. The shine is painstakingly slow to ripen yet every day it is more ripe, and that sweetness - it positively FLOWERS. It paints the air with the scent of IAmICanIWill and here we are. And we ARE dancing.
We went to soft play this morning. Surrounded by throngs of age appropriately mobile kids as per, pouncing on one another, bounding up and down the edge of the ball pit and crashing inside.
There sits Rukai, shying off a bit - nervous of the pace yet entertained by the clatter. Music in the background, he is bouncing his own version of Dance til his core and legs are ready to do their thing. He bounces in time. He's a damn fine bouncer. This doesn't surprise me.
I am propped up against the wall between a rocking horse and a scattering of plastic balls observing Rukai...observing.
I am feeling low as I usually do when I see this - thinking 'please don't be afraid, Rukai! You are strong enough! Go on and play, interact, you will be fine!'
Observing.
I turn my eyes heaven-ward and think as I've done on so many occasions before, 'please make this easier, please - will you? Won't you? Anyone?' my eyes welling up as I look down, and there suddenly goes Rukai collecting the balls scattered around and dropping them back into the pool.
I smile. I give thanks. I pass him more balls.
The pouncing kids eventually get out, go running to the slide, go running to the crawl tunnel, go running, go running. Running.
Then they are all gone, save one. She goes up and down the slide. 1-2-3-wheeee!
Rukai observes.
It's quiet enough, safe enough, so here he crawls up the foam steps embedded into the ramp which leads to the top. He has yet to go down the slide. And still this is not the time. He turns and shimmies back down the 'ladder', face first, giggling.
Little girl goes up the steps and slides down.
Up and down.
Up and down.
Rukai climbs halfway up and watches.
Up and down.
Up and down.
Up and down.
She explains to Rukai how to do it.
I smile to her mother 'the day he goes down the slide I think I'm going to fall over.'
She smiles and her girl again is up and down.
Up and down.
Rukai returns to me and we deposit more balls into the pool.
And then he's back on the steps.
And then I help him down the slide.
And then he's back up the steps without me.
(I am holding my breath.)
He is bum shuffling over to the slide.
(I am holding my breath. My eyes are popping out of my head.)
His feet go in the chute.
He takes hold of the side rails.
I am saying 'Scooch, Rukai! Scooch!!!' I am smiling. I am crying.
He is remembering 'scooch'.
And there he slides. 1-2-3-Wheeeeeeeeee!
And there he is grinning ear to ear. And he looks at me, with such pride and joy and bliss in the movement that has just freed him.
And I am again in pieces.
And there he goes up and down.
Up and down.
Up and down.
Oh you'll Dance, my son. You'll Dance.
T and I have always concurred that the best way to manage people who throw 'scripture' at you on any given subject is to study said scripture, wear it as armor and beat them to the draw. (I bet you thought I was going to say 'beat them with it', which actually is the same thing to an extent...however, not on this occasion.)
So I studied. Napping when the baby naps went out the window because it was far more important to learn more about what was supposedly in store than to sleep. A lifetime to sleep.
Over that first year if we'd had a pound for every time one of us said 'that's bullshit, just LOOK at him!' we'd have a pretty substantial bankroll here on the precipice of age three. Dare to dream.
Although a blood test told us Rukai had been diagnosed with Trisomy 21, I read up on the other two types of DS: Translocation and Mosaic, if only to add to my knowledge base. And despite what commentary, what website, what association or charity I took information from, little was doing me much good because they were already slapping that label around. Box 'em up and send 'em off to the community pediatrician. I desperately wanted to find some hope, someone who told it like it is and said it was going to be ok.
That hope is really hard to find. That truth is really hard to find.
I think I have found some of it now, but at the time I only found a beautiful montage of people who have Mosaic DS on one of the support pages. Hovering that mouseover, I'm thinking yes, this will lift me, this is hope. Click.
Over the slideshow out comes the song 'I Hope You Dance.'
I fell to pieces.
Of all a mother dreams for her child, there is likely one thing that stands light years above and beyond every small hope, every tiny vision, every short story yet to be told. And my ONE THING was Dance. It had been Dance since I was seven years old. It had been Dance when Rukai was a mere thought and it had been Dance when we were minutes from meeting him.
I hope you Dance. I hope you Dance. Please God, let him Dance.
On our NCT group 'delivery day' the lead asked us if there was one characteristic we wanted our child to have. Out of my mouth comes 'his Dad's eyelashes' but the one thing I'd really had hopes for was that I wanted him to be able to dance. I wanted Rukai to dance because I grew up embraced by the amazingly joyful past time of learning and teaching and living the power of movement.
I wanted him to have this. To live this. To be freed by this.
Seventeen years of expressing my thoughts with the flick of a wrist, the tilt of a head. Bounding across stage after stage, launching myself skyward, each movement its own revelation. Spinning and spinning and spinning each new story. Each routine playing another character, from within and from outside myself. Dance was the only way a shy, bullied kid was able to come out of her shell. Entertaining others - the applause, the joy on their faces. To be good at something that defined me, freed me. Saved me. I know how powerful that gift is.
And here I was crushed, those hopes buried in the mud beneath overpowering seeds of doubt. Rotten, moldy seeds mashed into the soil by inconsiderate and thoughtless medical people. In that instant, I went from wanting him to Dance to merely wanting him to BE. Because I'd been led to believe I should expect little more.
How is this not criminal? To dash a family's hopes so severely? To break hearts? To break spirits? On the back of 'what if's and 'maybes'? It is they who should live with the shame they try to smear across the parents of children who are merely different. I will never forget that feeling of leaving the hospital in the dark, like lepers. I do not expect to forgive it either, yet admittedly, these days are still fairly 'early'.
Such a disservice delivered us by those people. And despite how fervently I try, I cannot go back to those minutes, those scenes, that memory without the bitterness doing its own little time step across my tongue and down into my guts.
But hang on! Wait! We are on the precipice of Three!
We are Here. In the New.
This bitterness is short-lived, here as we look ahead and around and beyond. This bitterness is overcome by sweet success (aftersuccessaftersuccess) because when this bitterness dares to fester, Rukai always outshines it. The shine is painstakingly slow to ripen yet every day it is more ripe, and that sweetness - it positively FLOWERS. It paints the air with the scent of IAmICanIWill and here we are. And we ARE dancing.
We went to soft play this morning. Surrounded by throngs of age appropriately mobile kids as per, pouncing on one another, bounding up and down the edge of the ball pit and crashing inside.
There sits Rukai, shying off a bit - nervous of the pace yet entertained by the clatter. Music in the background, he is bouncing his own version of Dance til his core and legs are ready to do their thing. He bounces in time. He's a damn fine bouncer. This doesn't surprise me.
I am propped up against the wall between a rocking horse and a scattering of plastic balls observing Rukai...observing.
I am feeling low as I usually do when I see this - thinking 'please don't be afraid, Rukai! You are strong enough! Go on and play, interact, you will be fine!'
Observing.
I turn my eyes heaven-ward and think as I've done on so many occasions before, 'please make this easier, please - will you? Won't you? Anyone?' my eyes welling up as I look down, and there suddenly goes Rukai collecting the balls scattered around and dropping them back into the pool.
I smile. I give thanks. I pass him more balls.
The pouncing kids eventually get out, go running to the slide, go running to the crawl tunnel, go running, go running. Running.
Then they are all gone, save one. She goes up and down the slide. 1-2-3-wheeee!
Rukai observes.
It's quiet enough, safe enough, so here he crawls up the foam steps embedded into the ramp which leads to the top. He has yet to go down the slide. And still this is not the time. He turns and shimmies back down the 'ladder', face first, giggling.
Little girl goes up the steps and slides down.
Up and down.
Up and down.
Rukai climbs halfway up and watches.
Up and down.
Up and down.
Up and down.
She explains to Rukai how to do it.
I smile to her mother 'the day he goes down the slide I think I'm going to fall over.'
She smiles and her girl again is up and down.
Up and down.
Rukai returns to me and we deposit more balls into the pool.
And then he's back on the steps.
And then I help him down the slide.
And then he's back up the steps without me.
(I am holding my breath.)
He is bum shuffling over to the slide.
(I am holding my breath. My eyes are popping out of my head.)
His feet go in the chute.
He takes hold of the side rails.
I am saying 'Scooch, Rukai! Scooch!!!' I am smiling. I am crying.
He is remembering 'scooch'.
And there he slides. 1-2-3-Wheeeeeeeeee!
And there he is grinning ear to ear. And he looks at me, with such pride and joy and bliss in the movement that has just freed him.
And I am again in pieces.
And there he goes up and down.
Up and down.
Up and down.
Oh you'll Dance, my son. You'll Dance.
Sunday, 14 December 2014
The twelve days of Rukai. Er...Christmas.
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.
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.
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.
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