On Thanksgiving, I will give thanks. To 2013, thanks.
To this year of problems with no clear solution, thanks. To this raging test of my character, thanks. To the strengthening of old friendships and building of new, thanks.
To remaining on the right side of the dirt, thanks.
The sun rises and it rises again. It is always orange and it always burns if you get too much. Thanks for this sun.
Thanks.
For January. When I was able to go back to work full time, yet keep a day off to spend with my special precious squidge. I'm tired all the time, but I get to be near him five of seven days a week and get to actually hang out with him three of those days. I am seeing him progress. And I have seen some of the 'firsts'. The firsts I thought I'd miss entirely.
Lucky lucky mama. Thanks.
For February. When our beautiful boy turned one. Lively, healthy, thriving, facing all the low expectations. Ignoring them. Destroying them. Proving the doctors wrong.
Yes. THAT. Yes. YOU.
Maybe I didn't need to do it after all. HE will do it. Pay attention.
Thanks.
For March. When I had the fortune to spend the last 11 days of my father's life with him, before he left this life for whatever is beyond it. For the shortening of his torment from that ridiculously evil illness. For the torment through sorrow that reminds me I am alive and gives me gratitude every minute for that life, no matter how challenging. Even when someone opens the cupboards and starts chucking the Le Creuset at my face.
Thank you.
For April when I decided to honor Dad with a charitable tribute and I ran. And ran and ran and ran.
For May when I knew I was ready to make all that running count.
For June when I didn't stop running for that hour. I didn't stop running to keep that promise. To wear that medal and to submit my donations to those who cure, whose love transcends all illness, whose love lifts the spirits of all the worried, whose love embraces the sorrowful in our time of loss.
Thank you.
For July when I celebrated my independence from the most toxic person I know, having been threatened with 'ending'. I wish you healed, but you will not take from me any more. I don't wish to know you. I don't have to. Call whoever the hell you want. You are irrelevant. Goodbye.
Thank you.
For August when there was sun, and there was my son. And the sea and the summer. For August.
I loved August. Thank you August.
For September, when Dad's birthday came and went without me making that annual call. I had to chat with his memory instead. I looked at the card I'd bought, the one I knew I would never give him. For the dinner we had in his honor on that birthday, concluded with a spare Ketel One, served in the Santa Claus mug he'd drunk his coffee out of when we had him here for Christmas. We emptied that mug with a toast to the sky and the mug sat on the table for a month before I could bear to wash it.
Thank you Pop.
For October, when my birthday came and went without that other call. When I failed that ridiculous driving test. When I had the sense to sack the world's shittiest instructor and two lessons later passed that ridiculous driving test. With the world's best instructor.
Thank you, MY friend Glen.
For the offer on our house. The right offer. From the right people. For our offer on the other house being declined, now that I've found out more about that particular neighborhood. For making us keep looking for the RIGHT house.
Thank you St Joseph.
For November, when that old playground bullshit came back with a vengeance from the most surprising of places. For not having Dad to call to draw strength from, yet still he was here, in my heart. For that knowledge giving me the strength that I needed to say bring it on. Try me. Show me your worst. I got this. I am justified. You are blind.
For that attitude Dad (and Mom) either gifted or cursed me with (I have yet to decide) which says 'if you like me, great, if you don't, I don't give a shit. I am ME. I will not change for you.'
And I won't.
For a year fraught with challenges, and for its impending end.
Thank you.
For the ability to rise above it all.
Thank you.
Thank you.
Thank you.
Wednesday, 27 November 2013
Tuesday, 22 October 2013
Hush.
I've been trying all day to find the words to explain this thought. It's a massively important thought, and may I be bold enough to say I haven't seen anyone else write or admit to this thought but I know I am not alone in thinking it. But the damned explanation of it borders 'Rubik's cube'. So here goes nothin'.
According to all the theory, research, statistics, etc., Rukai is what they call 'developmentally disabled'. This classification is based upon what society knows about how ordinary children develop. You learn A, then you can do B, followed by C and so on. He hasn't done these things at the same rate as most ordinary children so therefore, he must be fixed. He must be flawed and he must be fixed to be as close to everyone else as he can possibly be.
Ok.
This is the same society that feels it needs to put things in boxes, to organize and order things, to make sense of things. The society that believes in God, Jesus, Buddah, Allah, Ganesh, Shiva, Jah, howmuchtimehaveyougotI'vegotawholelistofdeitiesinmyheadandIdon'tcareifIspelledanythingwrong.
What it boils down to is this: People need to make sense of things and children with alternative needs do not fit the mold. And medical bods just cannot bring themselves to say 'we don't know what you're capable of, but damn, won't it be exciting to just learn and discover as we go along'. It's easier to say 'you should be like THIS because most people are like this. If you don't fit what we think you should be like, we'll try our damnedest to ensure we push you into our mold.'
But why?
Big people are supposed to be in charge of little people. We are supposed to know what they need. We have to rate and rank them against their peers. We need to ensure kids who haven't been born with the 'correct' number of chromosomes, or the 'correct' physical abilities, or the 'correct' social skills or the 'correct' sensory reactions are constantly being pushed to absorb what they lack, are constantly being pushed to 'catch up'.
But what the hell for? Catch up to what? Says who? Fuck that. Sorry, but fuck. that.
T and I regularly sense resistance from some when it comes to our attitude and approach to Rukai's learning. We shun 'therapy' and we shun external influence on his life. Why must we introduce strangers to his life to push him to catch up? And here it is:
We are not in charge of Rukai's 'end game'. Rukai is. Rukai doesn't need to 'catch up' to anyone. Rukai will be Rukai. He has his ability. He has his possibility. He has his drive and his motivation and his fire in his belly. He will go as far as he is capable of going in his life, whether anyone intervenes or not. He will be. And he will be AWESOME. And he won't need anyone else to bring that out of him. He won't need anyone else to ensure his 'mental age' and his 'chronological age' match up, or come as close as they can. Because, seriously, what is the point?
Rukai was born as he is because Rukai is meant to reach that particular potential. Not some arbitrary societal potential, but Rukai's potential. He is not flawed. He is not wrong. He is not disabled.
He is Rukai.
The reason people freak out when they have a child with an alternative ability to the 'norm' is because - due to the reaction from the medical people up their asses in the first hours/days - they feel their child will have to spend his/her entire life catching up to what society thinks they should be. They feel they have produced an 'imperfect' person who NEEDS help from outsiders.
And that infuriates me to no end.
Maybe the thing that society doesn't 'get' is that there are some people born to this life who society thinks is missing out, and who are flawed or faulty in some way. But as we all see our own 'God' from a different perspective, so too we should see all human beings from the same viewpoint. We are not the same. Stop trying to put us all in a box.
How dare anyone suggest that we apply any pressure to be a certain way on our kids? Any kid? Not just kids with alternative needs but any kid?
And if you're thinking it, no I'm not saying this to make myself feel better, I'm saying it because it's totally and utterly ridiculous that there is some sort of measuring device judging and EXPECTING things from people. That is a load of hot, smelly, steaming bullshit.
Are we not all individual? Is my son less of a person because he learns a bit slower? No he bloody well isn't.
I cannot say it enough: we do not fit a mold. No one does.
We do not fit weight charts, and height statistics, and developmental rankings. We grow as we grow. I don't give a rat's ass how many years of medical school someone has had, this does not give you the right to rank and pressure my kid to meet your definition of what he should be.
He is Rukai. Nothing more, nothing less. He is fine. We know this and we don't give a shit if you like it.
We know this.
And this is cosmically scary to folks who are paid to know everything. Don't even try it on, you don't.
Folks who are too afraid to say 'I don't know, let's wait and see,' so they try to find order in disorder. How very damaging this is to Rukai, to all the other people in the world with alternative abilities. Perhaps the necessity of this disorder is the point of all of this. Look and see. You don't know what you think you know. Open your other eye. Watch. Learn. Hush. Listen.
Hush.
Rukai is not 'dis' anything.
According to all the theory, research, statistics, etc., Rukai is what they call 'developmentally disabled'. This classification is based upon what society knows about how ordinary children develop. You learn A, then you can do B, followed by C and so on. He hasn't done these things at the same rate as most ordinary children so therefore, he must be fixed. He must be flawed and he must be fixed to be as close to everyone else as he can possibly be.
Ok.
This is the same society that feels it needs to put things in boxes, to organize and order things, to make sense of things. The society that believes in God, Jesus, Buddah, Allah, Ganesh, Shiva, Jah, howmuchtimehaveyougotI'vegotawholelistofdeitiesinmyheadandIdon'tcareifIspelledanythingwrong.
What it boils down to is this: People need to make sense of things and children with alternative needs do not fit the mold. And medical bods just cannot bring themselves to say 'we don't know what you're capable of, but damn, won't it be exciting to just learn and discover as we go along'. It's easier to say 'you should be like THIS because most people are like this. If you don't fit what we think you should be like, we'll try our damnedest to ensure we push you into our mold.'
But why?
Big people are supposed to be in charge of little people. We are supposed to know what they need. We have to rate and rank them against their peers. We need to ensure kids who haven't been born with the 'correct' number of chromosomes, or the 'correct' physical abilities, or the 'correct' social skills or the 'correct' sensory reactions are constantly being pushed to absorb what they lack, are constantly being pushed to 'catch up'.
But what the hell for? Catch up to what? Says who? Fuck that. Sorry, but fuck. that.
T and I regularly sense resistance from some when it comes to our attitude and approach to Rukai's learning. We shun 'therapy' and we shun external influence on his life. Why must we introduce strangers to his life to push him to catch up? And here it is:
We are not in charge of Rukai's 'end game'. Rukai is. Rukai doesn't need to 'catch up' to anyone. Rukai will be Rukai. He has his ability. He has his possibility. He has his drive and his motivation and his fire in his belly. He will go as far as he is capable of going in his life, whether anyone intervenes or not. He will be. And he will be AWESOME. And he won't need anyone else to bring that out of him. He won't need anyone else to ensure his 'mental age' and his 'chronological age' match up, or come as close as they can. Because, seriously, what is the point?
Rukai was born as he is because Rukai is meant to reach that particular potential. Not some arbitrary societal potential, but Rukai's potential. He is not flawed. He is not wrong. He is not disabled.
He is Rukai.
The reason people freak out when they have a child with an alternative ability to the 'norm' is because - due to the reaction from the medical people up their asses in the first hours/days - they feel their child will have to spend his/her entire life catching up to what society thinks they should be. They feel they have produced an 'imperfect' person who NEEDS help from outsiders.
And that infuriates me to no end.
Maybe the thing that society doesn't 'get' is that there are some people born to this life who society thinks is missing out, and who are flawed or faulty in some way. But as we all see our own 'God' from a different perspective, so too we should see all human beings from the same viewpoint. We are not the same. Stop trying to put us all in a box.
How dare anyone suggest that we apply any pressure to be a certain way on our kids? Any kid? Not just kids with alternative needs but any kid?
And if you're thinking it, no I'm not saying this to make myself feel better, I'm saying it because it's totally and utterly ridiculous that there is some sort of measuring device judging and EXPECTING things from people. That is a load of hot, smelly, steaming bullshit.
Are we not all individual? Is my son less of a person because he learns a bit slower? No he bloody well isn't.
I cannot say it enough: we do not fit a mold. No one does.
We do not fit weight charts, and height statistics, and developmental rankings. We grow as we grow. I don't give a rat's ass how many years of medical school someone has had, this does not give you the right to rank and pressure my kid to meet your definition of what he should be.
He is Rukai. Nothing more, nothing less. He is fine. We know this and we don't give a shit if you like it.
We know this.
And this is cosmically scary to folks who are paid to know everything. Don't even try it on, you don't.
Folks who are too afraid to say 'I don't know, let's wait and see,' so they try to find order in disorder. How very damaging this is to Rukai, to all the other people in the world with alternative abilities. Perhaps the necessity of this disorder is the point of all of this. Look and see. You don't know what you think you know. Open your other eye. Watch. Learn. Hush. Listen.
Hush.
Rukai is not 'dis' anything.
Monday, 30 September 2013
Rebuilding the cheese.
Anyone of a certain age will know that it doesn't matter how many times we fall in life, but rather how often we get back up which truly defines the depth of our character. And nowhere is this better demonstrated than by a small person trying to figure out how to walk.
Next time you want to throw in the towel and give up on something, because it's 'too hard' I dare you to stop feeling sorry for yourself, grow a pair and head on down to the local playground to watch how often those small people fall down and get back up. Sometimes they audibly smack their head. Sometimes they draw blood. Sometimes their face crumbles in a 'boo boo lip' and a simple distraction gets them back on their feet, readying for the next fall. They are steel and you are a soft and mushy banana pudding. You will feel like a complete ass, in the midst of the world's largest pity party. Boo hoo.
We weaken as we age. In so many ways.
Join us here on planet Rukai where witnessing this tough nut-ed-ness gets even better. Because here's a toddler who, through the luck of genetics, has been dealt one 'get-on-yer-feet-later' card, and another 'fall-down-for-a-few-months-longer-than-the-average-bear' card. This, as part of that old 'sorry-but-you're-short-a-couple-synapses' hand, cut from the deck that forcibly made him an honorary member of society's 'we-aren't-going-to-expect-much' club. But, hot damn, aren't you a cutie?!
Bollocks. Infinite bollocks. I expect much. I expect a hella much. And so does he. Of himself. Of the world. He is full of beans. He is full of total, pure, true grit, pilgrim. You may call him the Duke.
So, what cards? These cards? Pfft.
And then - like everything else he gets his chubby little mitts on - he chucks those cards on the floor, flips them the bird and stands ten seconds longer than the last time. Ten seconds longer before the next side-shuffle, the next lopsided balance, the next fall. Giggling at the fun of it all. Just like every one of his peers, in the feat (pun firmly intended) of standing and trying to figure this walking thing out, the fearlessness is astonishing. My pride so all-encompassing I must be on the very top of the hefty sinners list, but them's the breaks. This is my boy.
This is my hero.
He can't stand unaided yet but no one seems to have told him about it. And HANG on. He is supposed to be floppy. And lazy. And weak. Right?
(...take your stats and...you know the song by now)
And the last meeting with the health visitor, foolishly still trying to convince me there are people in the so called medical profession who can draw this ability out of him sooner with their superhero magic powers. Sorry lady there are no X-Men employed by the NHS. No sorcerers. No ancient juju priests with magical walkie walkie spells made of deer antlers and buffalo sweat and corn cobs. Rukai will do it, like he will do everything else: on his timetable when he is ready to, with the aid and stimulation of his family...those of us who know and love him best. That is all the magic he needs. Now, again, please go.
But before you go, bring some cheese. Yes, cheese. Because although they are his ultimate snack of choice, our intrepid hero is a master at pulverizing Babybel wheels. They have no chance. Half shoved in his mouth, chomped on with his eight-teeth-on-top-and-one-on-the-bottom funky Rukai dental configuration, and the rest pulped and unceremoniously hurled on the playmat. But I can't let half of every wheel go to waste, so I pick up the pieces and I rebuild the cheese. I rebuild that cheese and I hand it back to him.
Like I have rebuilt my heart, and my hopes, and my world, and handed those back to him.
After the people who arrogantly positioned themselves as 'in the know' began to prove that they really don't know a damn thing. I can read too, old bean. Nicely played though, if not us, at least you've convinced yourself.
We fall down and get back up. Like Rukai. Just like him. Is he different from 'ordinary' people? No. Is he 'less' in any way than 'ordinary' people? No.
Get up. Get up. Rise up. You rise up.
I could learn a hell of a lot from my son. Can't wait for the next lesson.
Next time you want to throw in the towel and give up on something, because it's 'too hard' I dare you to stop feeling sorry for yourself, grow a pair and head on down to the local playground to watch how often those small people fall down and get back up. Sometimes they audibly smack their head. Sometimes they draw blood. Sometimes their face crumbles in a 'boo boo lip' and a simple distraction gets them back on their feet, readying for the next fall. They are steel and you are a soft and mushy banana pudding. You will feel like a complete ass, in the midst of the world's largest pity party. Boo hoo.
We weaken as we age. In so many ways.
Join us here on planet Rukai where witnessing this tough nut-ed-ness gets even better. Because here's a toddler who, through the luck of genetics, has been dealt one 'get-on-yer-feet-later' card, and another 'fall-down-for-a-few-months-longer-than-the-average-bear' card. This, as part of that old 'sorry-but-you're-short-a-couple-synapses' hand, cut from the deck that forcibly made him an honorary member of society's 'we-aren't-going-to-expect-much' club. But, hot damn, aren't you a cutie?!
Bollocks. Infinite bollocks. I expect much. I expect a hella much. And so does he. Of himself. Of the world. He is full of beans. He is full of total, pure, true grit, pilgrim. You may call him the Duke.
So, what cards? These cards? Pfft.
And then - like everything else he gets his chubby little mitts on - he chucks those cards on the floor, flips them the bird and stands ten seconds longer than the last time. Ten seconds longer before the next side-shuffle, the next lopsided balance, the next fall. Giggling at the fun of it all. Just like every one of his peers, in the feat (pun firmly intended) of standing and trying to figure this walking thing out, the fearlessness is astonishing. My pride so all-encompassing I must be on the very top of the hefty sinners list, but them's the breaks. This is my boy.
This is my hero.
He can't stand unaided yet but no one seems to have told him about it. And HANG on. He is supposed to be floppy. And lazy. And weak. Right?
(...take your stats and...you know the song by now)
And the last meeting with the health visitor, foolishly still trying to convince me there are people in the so called medical profession who can draw this ability out of him sooner with their superhero magic powers. Sorry lady there are no X-Men employed by the NHS. No sorcerers. No ancient juju priests with magical walkie walkie spells made of deer antlers and buffalo sweat and corn cobs. Rukai will do it, like he will do everything else: on his timetable when he is ready to, with the aid and stimulation of his family...those of us who know and love him best. That is all the magic he needs. Now, again, please go.
But before you go, bring some cheese. Yes, cheese. Because although they are his ultimate snack of choice, our intrepid hero is a master at pulverizing Babybel wheels. They have no chance. Half shoved in his mouth, chomped on with his eight-teeth-on-top-and-one-on-the-bottom funky Rukai dental configuration, and the rest pulped and unceremoniously hurled on the playmat. But I can't let half of every wheel go to waste, so I pick up the pieces and I rebuild the cheese. I rebuild that cheese and I hand it back to him.
Like I have rebuilt my heart, and my hopes, and my world, and handed those back to him.
After the people who arrogantly positioned themselves as 'in the know' began to prove that they really don't know a damn thing. I can read too, old bean. Nicely played though, if not us, at least you've convinced yourself.
We fall down and get back up. Like Rukai. Just like him. Is he different from 'ordinary' people? No. Is he 'less' in any way than 'ordinary' people? No.
Get up. Get up. Rise up. You rise up.
I could learn a hell of a lot from my son. Can't wait for the next lesson.
Saturday, 22 June 2013
Just hold on and run, you're on your way.
I should start with: I ran the whole way. At one point I was doing a magnificent scream/growl combo but by god it got me up that hill. Not 'that' hill, mind you - which I last saw at about 5.5k - but an entirely different 'that hill' they chucked at us past 8.
This hill-type configuration wore fangs, and carried a pitchfork and attacked me with snakebites to the calves. I scream/growled the entire way up that bastard, at one point trying to encourage another runner in equal agony that it's ok, this is why we're here, let's kick this hill's ass. I ate up that hill with my lungs screaming and thrashing and banging on my face to stop-please-stop-good-grief-what-must-I-do-to-make-you-stop.
But I didn't stop.
I crested the hill grinning. And I ran the whole way.
10k. Up and down hills, across grass, through mud trying to suck my shoes off. I implored myself to dig. Then to dig deeper. And I passed people. If there is anything that fills me with even more pride than merely finishing having run the entire time, is that I trained hard, I paced smart and I passed people. Lots of people. All those people who started way too fast, thinking they could conquer mountains when they hadn't yet beat the hills. Slow and steady wins the race. Oh yes. And so true when it comes to this battle against the big C.
It is entirely why we were there.
I hadn't trained on the route they took us across, so good new sightseeing all around, particularly on the bit where they mis-directed us some 200 metres. I smiled through it because there I was. It was the day. I worked so hard for this day and there I was.
Nearly choked on my tears then, and a few more times thereafter, but then a great line in whatever song was playing would grab my feet and pull them on. One particular burst of energy I owe expressly to Big Head Todd, '...just hold on and run, you're on your way...' Thanks man, I did. I dug deep, I climbed, I scream/growled, and once I hit that magical 9k marker - the all time farthest I'd ever gone - I asked Dad to run with me. I asked that young Dad, that soldier, that strong healthy 19 year old to run with me.
Oh and he did. We rounded that final corner to the awesomeness that is Peter Gabriel's 'Shaking the Tree', just impeccably timed.
The next song started. I saw '500 metres to go'. I was already fist pumping the air, so seriously jacked up that I'd done it. 500 metres and I'd done it.
I saw people cheering. I saw it through the tears welling up in my eyes. My legs saw to it to provide me with my best sprint and we ran like we had wings.
We did. Dad's.
I am so grateful for the support of all my friends who have cheered me on and sponsored me on this adventure. I will never be able to repay the gratitude to my niece and brother in law who not only watched Rukai while I trained and while I ran but managed to capture what are very very precious moments for me on film.
A few months ago I saw Cancer's horrendous power take my Dad. This morning I ran my ass off to try and help take just a little bit of that power away.
As they say, there is strength in numbers. Between hundreds of us there that day maybe, just maybe, we will have done just that.
_________________________________________________
*Cancer Research UK's Race for Life 2013, Finsbury Park, North London
This hill-type configuration wore fangs, and carried a pitchfork and attacked me with snakebites to the calves. I scream/growled the entire way up that bastard, at one point trying to encourage another runner in equal agony that it's ok, this is why we're here, let's kick this hill's ass. I ate up that hill with my lungs screaming and thrashing and banging on my face to stop-please-stop-good-grief-what-must-I-do-to-make-you-stop.
But I didn't stop.
I crested the hill grinning. And I ran the whole way.
10k. Up and down hills, across grass, through mud trying to suck my shoes off. I implored myself to dig. Then to dig deeper. And I passed people. If there is anything that fills me with even more pride than merely finishing having run the entire time, is that I trained hard, I paced smart and I passed people. Lots of people. All those people who started way too fast, thinking they could conquer mountains when they hadn't yet beat the hills. Slow and steady wins the race. Oh yes. And so true when it comes to this battle against the big C.
It is entirely why we were there.
I hadn't trained on the route they took us across, so good new sightseeing all around, particularly on the bit where they mis-directed us some 200 metres. I smiled through it because there I was. It was the day. I worked so hard for this day and there I was.
Nearly choked on my tears then, and a few more times thereafter, but then a great line in whatever song was playing would grab my feet and pull them on. One particular burst of energy I owe expressly to Big Head Todd, '...just hold on and run, you're on your way...' Thanks man, I did. I dug deep, I climbed, I scream/growled, and once I hit that magical 9k marker - the all time farthest I'd ever gone - I asked Dad to run with me. I asked that young Dad, that soldier, that strong healthy 19 year old to run with me.
Oh and he did. We rounded that final corner to the awesomeness that is Peter Gabriel's 'Shaking the Tree', just impeccably timed.
The next song started. I saw '500 metres to go'. I was already fist pumping the air, so seriously jacked up that I'd done it. 500 metres and I'd done it.
I saw people cheering. I saw it through the tears welling up in my eyes. My legs saw to it to provide me with my best sprint and we ran like we had wings.
We did. Dad's.
I am so grateful for the support of all my friends who have cheered me on and sponsored me on this adventure. I will never be able to repay the gratitude to my niece and brother in law who not only watched Rukai while I trained and while I ran but managed to capture what are very very precious moments for me on film.
A few months ago I saw Cancer's horrendous power take my Dad. This morning I ran my ass off to try and help take just a little bit of that power away.
As they say, there is strength in numbers. Between hundreds of us there that day maybe, just maybe, we will have done just that.
_________________________________________________
*Cancer Research UK's Race for Life 2013, Finsbury Park, North London
Wednesday, 12 June 2013
Shoe-dini
It is not possible to spell the sigh I have just exhaled but 'huuuhhhhhhhhhhhhhhhhhhhhhh' may do it.
First of all I am so triumphant I could spit. Because the issue at hand on this particular day in the year of our lord 2013 is that my dear boy is going quite swimmingly in the brainbox department. Developmentally disabled? Perhaps in the shoulder girdle but not even close between the skull bones, you knuckleheads. Not even close.
The issue at hand on this particular day is that Master Squidge has the fully functioning developmentally accurate brain of a 16 month old but the upper body physicality of a child half his age. This, friends, is freaking exhausting me to the point of tears. But so so many happy ones lately I cannot begin to tell you.
Ok, maybe I CAN begin. But you better sit down, pour a glass of wine. Fire up the grill.
Hmmm maybe not the last bit if you're in England. The weather is pretty developmentally disabled over here.
That said, let us make a list. These doctor types like order and boxes, so hell, let's throw them a list. I'd like to throw them a left hook, but a list won't scar my knuckles.
Right. So in the past two weeks, Rukai has developed so quickly my head is spinning. We can now clock:
> two teeth finally erupting which means chewing. Chewing. Halle-flippin-lujah, pack that sludge away and break out the barbecue ribs. Ok, maybe not yet, but bread is now on the menu.
So we go to:
> eating a cookie unaided
> sampling a fish finger and going back for more
> sampling water from a cup we are sharing and now flat out tantrum when I give him a bottle
> pulling up on a toy, pulling up on my neck and bouncing in my lap just holding on to my shoulders
> aided steps across the floor
> loading up that ball-tower thingy and rolling those suckers down oneafteranotherafteranotherafteranother
> playing (rolling) catch with me
> jumping up the growth charts (DS and 'ordinary' from 50>75 centile and 9>25 centile respectively)
And he's chucking everything on the floor. Hide the glass, pocket the phone and don't let his hands near that plate of spagh--- shit, good thing that carpet is red.
I have started calling him Shoe-dini when we go out because footwear just magically disappears wherever he sees fit. A few weeks ago I was doing a Race for Life training walk en route to the grocery store. 20 minutes in, we walk into the store. I look down. The sandal is gone. We re-traced our steps twice before we found it a block away from the shop on top of a garbage can. Good samaritan I heart you.
Digress-a-roony yet again.
'Only now throwing things on the floor? My eight month old did that' you may say. Indeed. Imagine my angst.
Imagine my pride.
Now imagine my stress.
Here we have a 16 month old going for it with such gusto he appears to be starting to think he can just go and cook a frittata and win an F1 race just because he's got some pointy teeth buds. He now gets seriously pissed off when he can't physically do something his brain is telling him he's fully able to do. Because he feels as his parents feel for him. Good boy, you can do ANYTHING. Go for it. He goes for it. He falls, bashes his head, scrapes his cheek on the rug, can't pull back up, screams blue jesus at me to straighten him back up and does it again with the same result.
The ferocity of the way this child attacks every skill moves me in a way nothing ever has. He is so determined, so stubborn, so much like me. I am so proud of him. I wish you could all have one of him. You would say as I do: 'A problem? This child is a problem?'
No. No he's not.
'What low muscle tone?' says he. 'I can do anything. My mommy says I can. My daddy says I can. I. Can. Do. Anything.'
Yes you can. Go. Do. But please dear god, do it after 12 hours of sleep so I can crack open that bottle of red.
___
Now back to that huge sigh. Why? Daddy is away. For two weeks. That may as well be two hundred years. This single parent thing is enough without looking after a child who thinks he's got the capability of a five year old but the physical ability where he's at. I'm completely used up, because I cannot rest. Not a lick.
In the past few months, we have come to the conclusion that due to the level of stimulation Rukai has (and it's pretty constant, 24/7 when he's awake) his brain is developing just fine, despite his physical limitations. When he wants to do something he is physically unable to do, he screams (or becomes Crabapple Joe as I have now named him) until you get him into the right position where he can work on his newest thing. And he works like a miner. He grafts like a jobbing actor. He brings himself to the very limit of his ability, to the point of total exhaustion, like a prima ballerina. Then he sleeps like the dead for 12 hours a night. I cannot tell you how much I adore his fire. His grit.
Him.
His support network is a fixed number yet it is endless. Because there is always someone to interact with him, to show him, to teach him, but more importantly to let him teach them. And believe you me, Rukai is the teacher here.
But he is not slowing. And he will not stop. And nor will we.
First of all I am so triumphant I could spit. Because the issue at hand on this particular day in the year of our lord 2013 is that my dear boy is going quite swimmingly in the brainbox department. Developmentally disabled? Perhaps in the shoulder girdle but not even close between the skull bones, you knuckleheads. Not even close.
The issue at hand on this particular day is that Master Squidge has the fully functioning developmentally accurate brain of a 16 month old but the upper body physicality of a child half his age. This, friends, is freaking exhausting me to the point of tears. But so so many happy ones lately I cannot begin to tell you.
Ok, maybe I CAN begin. But you better sit down, pour a glass of wine. Fire up the grill.
Hmmm maybe not the last bit if you're in England. The weather is pretty developmentally disabled over here.
That said, let us make a list. These doctor types like order and boxes, so hell, let's throw them a list. I'd like to throw them a left hook, but a list won't scar my knuckles.
Right. So in the past two weeks, Rukai has developed so quickly my head is spinning. We can now clock:
> two teeth finally erupting which means chewing. Chewing. Halle-flippin-lujah, pack that sludge away and break out the barbecue ribs. Ok, maybe not yet, but bread is now on the menu.
So we go to:
> eating a cookie unaided
> sampling a fish finger and going back for more
> sampling water from a cup we are sharing and now flat out tantrum when I give him a bottle
> pulling up on a toy, pulling up on my neck and bouncing in my lap just holding on to my shoulders
> aided steps across the floor
> loading up that ball-tower thingy and rolling those suckers down oneafteranotherafteranotherafteranother
> playing (rolling) catch with me
> jumping up the growth charts (DS and 'ordinary' from 50>75 centile and 9>25 centile respectively)
And he's chucking everything on the floor. Hide the glass, pocket the phone and don't let his hands near that plate of spagh--- shit, good thing that carpet is red.
I have started calling him Shoe-dini when we go out because footwear just magically disappears wherever he sees fit. A few weeks ago I was doing a Race for Life training walk en route to the grocery store. 20 minutes in, we walk into the store. I look down. The sandal is gone. We re-traced our steps twice before we found it a block away from the shop on top of a garbage can. Good samaritan I heart you.
Digress-a-roony yet again.
'Only now throwing things on the floor? My eight month old did that' you may say. Indeed. Imagine my angst.
Imagine my pride.
Now imagine my stress.
Here we have a 16 month old going for it with such gusto he appears to be starting to think he can just go and cook a frittata and win an F1 race just because he's got some pointy teeth buds. He now gets seriously pissed off when he can't physically do something his brain is telling him he's fully able to do. Because he feels as his parents feel for him. Good boy, you can do ANYTHING. Go for it. He goes for it. He falls, bashes his head, scrapes his cheek on the rug, can't pull back up, screams blue jesus at me to straighten him back up and does it again with the same result.
The ferocity of the way this child attacks every skill moves me in a way nothing ever has. He is so determined, so stubborn, so much like me. I am so proud of him. I wish you could all have one of him. You would say as I do: 'A problem? This child is a problem?'
No. No he's not.
'What low muscle tone?' says he. 'I can do anything. My mommy says I can. My daddy says I can. I. Can. Do. Anything.'
Yes you can. Go. Do. But please dear god, do it after 12 hours of sleep so I can crack open that bottle of red.
___
Now back to that huge sigh. Why? Daddy is away. For two weeks. That may as well be two hundred years. This single parent thing is enough without looking after a child who thinks he's got the capability of a five year old but the physical ability where he's at. I'm completely used up, because I cannot rest. Not a lick.
In the past few months, we have come to the conclusion that due to the level of stimulation Rukai has (and it's pretty constant, 24/7 when he's awake) his brain is developing just fine, despite his physical limitations. When he wants to do something he is physically unable to do, he screams (or becomes Crabapple Joe as I have now named him) until you get him into the right position where he can work on his newest thing. And he works like a miner. He grafts like a jobbing actor. He brings himself to the very limit of his ability, to the point of total exhaustion, like a prima ballerina. Then he sleeps like the dead for 12 hours a night. I cannot tell you how much I adore his fire. His grit.
Him.
His support network is a fixed number yet it is endless. Because there is always someone to interact with him, to show him, to teach him, but more importantly to let him teach them. And believe you me, Rukai is the teacher here.
But he is not slowing. And he will not stop. And nor will we.
Friday, 12 April 2013
Racing for life.
I saw an ad for Cancer Research UK's Race for Life about an hour before I registered. The people in it were pretty much telling cancer to piss off. That is how I feel.
That is how I was inspired.
I was inspired to do this in memory of Dad. No better time? No. None.
Yes, Race for Life is a girl only event. No, Dad is not a girl (although he did dress like one in a play way way back in the day but that's a different story altogether).
But Dad DID help make me the girl I am. Take no prisoners. Say what you mean and mean what you say.
And I say this: Cancer, watch your back. You took a special one and I don't forgive you. Too bad. Don't let the door hit ya.
Let's run.
Support me and Cancer Research UK here: http://www.raceforlifesponsorme.org/maxinesindanapal
You can donate in eight different currencies, so why not, eh?! x (https://justgiving-charity-support.zendesk.com/entries/22562057-Donations-made-in-foreign-currencies-)
That is how I was inspired.
I was inspired to do this in memory of Dad. No better time? No. None.
Yes, Race for Life is a girl only event. No, Dad is not a girl (although he did dress like one in a play way way back in the day but that's a different story altogether).
But Dad DID help make me the girl I am. Take no prisoners. Say what you mean and mean what you say.
And I say this: Cancer, watch your back. You took a special one and I don't forgive you. Too bad. Don't let the door hit ya.
Let's run.
Support me and Cancer Research UK here: http://www.raceforlifesponsorme.org/maxinesindanapal
You can donate in eight different currencies, so why not, eh?! x (https://justgiving-charity-support.zendesk.com/entries/22562057-Donations-made-in-foreign-currencies-)
Sunday, 7 April 2013
I was that joyful day.
It was exactly one year ago today. The elder's long journey over the water just concluded, the younger's mere two months' experience in this thing called life, they gathered in my kitchen and eyeballed one another, truly, madly, deeply for the very first time. Dad, that generation who created me and Rukai, that who I created, saying their first 'how do'.
We stood between them and marvelled.
I burned me a big memory that day. Golden and shiny and wrapped up in Dad's 79 years of waiting to say, 'well shut my mouth and call me Gordie Howe, THAT is my grandson'.
How do, little man, how do.
He waited long and long and long for that day. I have loved few days as much. And here, one year on, that day pinches me across the face like an out of town aged aunty with cellulite and blue hair and halitosis.
Hello. Remember me? I was that joyful day. Do not forget me. Never forget me. I have gone and so has he.
Pinch.
One year ago today. And here we are now, three days from the 9th of April. Three days from 'damn, my father has been dead a month.' It is all I can do to just keep breathing.
I am so thankful for my beloved boy, not only because he continues to be magnificent but also because to care properly for him means I do not have time to sit and think too much. It is the thinking that leaves me helpless, that does me in, for it is then that I am unmoving. Left congealing like cold gravy. So I move, and I mommy, and I live, because it is we who are left behind, to find the way back towards our own 80 years.
Less of this pain, though, eh God? I am weary of burning.
Yet losing Dad has also strangely provided the opposite distraction, in that the ongoing saga of incompetent boobs calling themselves medical practitioners and trying to dictate how we will live has just hopped right on over to the back burner for the first time since late 2011.
To that end, perhaps the greater gift is that now I know just how much strength I have. I hauled it up out of the deepest chasm in my very guts, and my palms bled and I screamed in agony and I wept till I was empty. I had to hurt like hell to earn it, but by God, it is within me now and it will never go.
Thank you. Daddy. Angel.
And still here we have new marvels. Fine motor skills improving at pace and now my dear boy is flipping me the bird some 27 times a day. Old Charlie and his Baby TV numbers are not only totally recognizable to him, but Rukai is trying to copy me counting on my fingers every time the song comes on, looking back at my hands, at the TV, at my hands, at my face. Laughing. 'I get it!' he's thinking. 'They go together!'
Yes, those stats did say he would suck at numbers too. Throw me another gauntlet, I may end up enjoying this.
Dad would be so proud.
We stood between them and marvelled.
I burned me a big memory that day. Golden and shiny and wrapped up in Dad's 79 years of waiting to say, 'well shut my mouth and call me Gordie Howe, THAT is my grandson'.
How do, little man, how do.
He waited long and long and long for that day. I have loved few days as much. And here, one year on, that day pinches me across the face like an out of town aged aunty with cellulite and blue hair and halitosis.
Hello. Remember me? I was that joyful day. Do not forget me. Never forget me. I have gone and so has he.
Pinch.
One year ago today. And here we are now, three days from the 9th of April. Three days from 'damn, my father has been dead a month.' It is all I can do to just keep breathing.
I am so thankful for my beloved boy, not only because he continues to be magnificent but also because to care properly for him means I do not have time to sit and think too much. It is the thinking that leaves me helpless, that does me in, for it is then that I am unmoving. Left congealing like cold gravy. So I move, and I mommy, and I live, because it is we who are left behind, to find the way back towards our own 80 years.
Less of this pain, though, eh God? I am weary of burning.
Yet losing Dad has also strangely provided the opposite distraction, in that the ongoing saga of incompetent boobs calling themselves medical practitioners and trying to dictate how we will live has just hopped right on over to the back burner for the first time since late 2011.
To that end, perhaps the greater gift is that now I know just how much strength I have. I hauled it up out of the deepest chasm in my very guts, and my palms bled and I screamed in agony and I wept till I was empty. I had to hurt like hell to earn it, but by God, it is within me now and it will never go.
Thank you. Daddy. Angel.
And still here we have new marvels. Fine motor skills improving at pace and now my dear boy is flipping me the bird some 27 times a day. Old Charlie and his Baby TV numbers are not only totally recognizable to him, but Rukai is trying to copy me counting on my fingers every time the song comes on, looking back at my hands, at the TV, at my hands, at my face. Laughing. 'I get it!' he's thinking. 'They go together!'
Yes, those stats did say he would suck at numbers too. Throw me another gauntlet, I may end up enjoying this.
Dad would be so proud.
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