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.
Tuesday, 31 March 2015
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.
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.
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