Saturday, 26 May 2018


Seven hours in the car, alone, uninterrupted, gives a girl plenty of time to think.

It's only the second time I've left Rukai for a few days to do 'something important'. The last was a flight overseas to that epic march in Washington, but this one was much closer to home and has made me far more introspective. Why on earth is it so pressing for me to get back to the Lake District, to summit a mountain which in the view of many isn't much of a mountain at all? Yet Scafell Pike is the highest peak in England, one of three compressed into an event I left incomplete just about nine months ago; to the day as I write, in fact.

I drove through torrential rain, trying to see through the water spitting up off the back of the lorries, trying to see through my heart and its reason for taking this pilgrimage up north. Alone. I was singing along to Led Zeppelin's 'The Battle of Evermore':

I hear the horses thunder, down in the valley below. 
I'm waiting for the angels of Avalon, waiting for the eastern glow...

You bet I'm waiting. Coincidentally, I've waited the same number of months as it takes to bring a new life into the world, desperately needing that sunrise and summit to deliver new life from me. To put this down. To close the book on another set of bullies. Because in retrospect, that's exactly what they were.

I've done this sort of thing so many times before, and my husband just nods and supports what I need to get done. 17 years together and he's become pretty aware of the fact that I am comprised of 60% water and 40% 'need for closure'.

As I'd been looking at routes up the mountain I bounced the idea off him that maybe I'd take the longer more scenic route to the top. He just looked at me, waiting for me to answer my own question, which I did: 'no, if I don't go exactly the same way up, it won't feel finished.' So tomorrow will steer me to that same parking lot. The one I'd last seen with eyes red from tears of angst and anguish and anger so deep it boiled my bile. Those fetid strangers telling me I couldn't. You cannot because we think you aren't able. Now please be quiet so our van drivers can get some sleep (on top of my kit bag as it happens)...

I know exactly what I'm capable of. So why on earth do those words and those actions light me up just remembering them? Why can I not rest until I finish this thing?


Rukai finally learned to jump while we were at a theme park a couple of weeks ago. He's six years and three months old and he's finally learned to jump. The first attempt so self-led, so out of the clear blue, it gives me that sly 'I-told-you-so' smile every time I recall it. Climbing off a rollercoaster, he took my hands, bent both knees and launched himself onto the floor, very nearly effortlessly.

"Well done, buddy!" said I, beaming. Another milestone. They all come late but still they come. I remember hearing how he wouldn't be able to do ABC without this-or-that-therapist and there he does. With love. Only love.

Life is learning. Love is therapy. Rukai is not a medical problem, he is a boy learning how to do things. In time, in time.

As we reached the exit steps, he decided to jump down them all. My cheeks were about to burst from the joy streaming across my face. I told the ride operator he'd never done this before, still her lack of interest was palpable. Every day we are out there clocking milestones and winning battles while she lives inside her ordinary, wearing it like a cloak.

And there we took our joy out into the sun.

As do all new-things-that-kids-figure-out, the cycle continued for the better part of an hour. Off this ledge, off that ride, off another wall, he took my hands and jumped. And then there was a ramp. I was stood behind him, still holding his hands, so I could not see a furrowed brow thick with concentration, I could not see an epic grin of achievement, I could only see knees bend followed by the distinct sound of two feet slapping the floor in unison. And again. And again. And I cried out "Rukai! Have you just jumped all by yourself?!"

It was a question, yet I already knew the answer. He has. He can. He will.


Yesterday's seven road hours, in all their rainy darkness, took me back to the shine of that magical day of jumping. To the first moment of standing. To the day he figured out where his feet are. To the first grin, the first laugh, the first babble. Words are out there. Words will come too. Patience is a virtue. Patience is everything in this life.

It's ok to go slow, as long as you go.

At the beginning of life with Rukai, we started logging milestones in one of those baby books before we realised that it would be too painful to watch the dates go by without a milestone tagging along. And then one magical day we realised the milestone books are a total nonsense, and they only allow medical professionals who really know so little about what Rukai can and cannot do to gain information and pretend they know so much. Medicine is meant to work along with us, not pat us on the head and say 'shhh, let the experts handle this.'

I've said it before but I'll say it again because it's important: the expert on Rukai is Rukai. I am just the tour guide.

Yet there are so many people back through those 6 point three years who would deny all of it and imagine there is no hope for a journey, there is no success to be seen in the invisible crystal ball he has been shackled with round the ankle. He can still jump with that shackle on so they'd best think through those theories once again. We'll wait.

Because patience is everything in this life.

Like our progress, those memories are relentless. And they always yank my chain. Because I feel as if I could have defended him better. I feel as if there is a magic switch to throw which will open their eyes and take away the misinformation. I cannot go back and fix everything I didn't do well enough so now what? Perhaps that's the theme for the journey home on Monday.

Still those seven road hours were a serum, a balm. They provided the missing puzzle pieces. And somewhere in the midst of a jaunty, drizzly loop around a silent lake, while breathing in country odors and bleating sheep song, I figured out exactly why I am up here again. Why I have to finish this challenge, even when it's no longer the same challenge. Why I have to prove to people who couldn't care less - just like that ride operator - whether I've done it or not.

Lake Buttermere

I love to run. I love to do athletic challenges which may look on paper like they are far beyond my reach. But as long as you keep moving, nothing is beyond your reach. That is what goals are for. Aim high. Draw the bow. Fire the arrows. Learn when you miss. Draw the bow again. ("Sing as you raise your bow, shoot straighter than before.")

I fight so hard for people to stop marginalizing my own ability because I see how many people marginalize Rukai's ability. I get it. I know what that looks like. I know all too well how it feels to be on the receiving end of pity and low expectations. People who don't know either of us from a bar of soap take one look, whether on paper or in person, and make every last assumption about capability and drive and determination. But what they fail to realise is that having the ability to endure such staggeringly low expectations makes the pair of us stronger than they ever will be. Those who endure, and survive, and continue after they fail, and eventually succeed, are going to change the world.

Don't throw baby in a corner. Don't throw mama off a mountain.

You just try.

Wednesday, 21 March 2018

Of Gratitude and Pity. | World Down Syndrome Day 2018

As we find ourselves here at the end of the most recent trip around the sun, on that special journey that runs from March 21st to March 21st, I am feeling every one of the emotions all at once. 'Having all the feels' as it's said. So much has happened between the last time I wrote about this day and this time I'm writing about this day and I'm finding myself at a loss for words. Which really is saying something, particularly if you ask my husband because he'll tell you that I've never shut up. So imagine what it takes...

Anyway in this kind of situation, I suspect it is exceptionally positive that I am still talking. Because this is important. Not just to me, but to you. More than you realize.

So where are we now? Do we know what Down Syndrome is? Yep. Check. Six years of it, and still the same third copy of the 21st chromosome.

Next, still loving our son so much it hurts?
Yep. Today a bit more than the last, for the new tattoo decorating my arm, incorporating my life motto and that magical 'lucky few' set of arrows. Draw the bow and let loose (the dogs of war). Over and over and over. That pain worth it for all the other pain having now dissipated. Those early days of sadness and feelings of loss, those feelings implanted by a medical community who would find it simpler to read lists and tick boxes and study thin surveys and recall days of old where people were not people but locked away simply because other people didn't choose to understand them. They are learning, and my job now is to help teach them. Aside from ensuring Rukai has a beautiful and successful life, nothing matters more.

Which brings me to the first part of this round the sun journey. We will start with the less desirable, the less positive, the less joyful, to get it out of the way. We can't ignore it because ignoring things like this is what has got society into this ableist mess in the first place. But we will look it square in the eye, grab it by the shoulders, shake our head and say 'no, not today, no. You're not coming in today. Nor tomorrow. And we will make you go.'

These are the trolls. The haters. The people who mock our loved ones. Those who make people with Down Syndrome and other disabilities the butt of a joke and they hold their bellies with laughter and covet those others who join in like sheep. These people will laugh until the end of time, because these people will never get it. These people will never come round. These people will never be part of my life, and my world, and accept my son as a person who has a contribution to make to society. And you know what? I no longer care. For them I feel nothing but pity, and, if I'm being honest, slight embarrassment for their total disregard for what makes humankind amazing, and that is that we celebrate our differences, and we welcome everyone to the same grand table called Life. If you want to rock up outside and hang out in the mud with the pigs and throw slop at us, we will slam the door in your face and turn back to our joy.

And there is where I find the Gratitude.

Despite what I was led to expect when our son was born, our world did not come crumbling in on us. In fact, it got bigger. The mist lifted, the sun shone, every other positive analogy for what makes a life better, happened. Every bit of it. We inherited an entire new family that splinters off into a billion different directions. Because it's not just a Down Syndrome family we joined, we became part of the global disability community and THAT, my friends has prised open my eyes and lifted up that huge part of my brain that wasn't doing any work before. Now I'm starting to understand what every marginalized community of people in all our history has experienced. I no longer see people with disabilities and think 'I wonder what's wrong with them?' Because there IS nothing wrong. There is only difference. There are medical complications and things that take health and many that take life, but it is only difference. We all bleed red.

Over this past year I have considered the striking similarity of Rukai's developmental delay to my very slow running pace, how easily I injure, how hard I have to work to improve my running ability. We do not all learn to do things quickly. We are not all good at everything. Equal.

I have considered the disability endured by my aging and ill father that ended in his death five years ago. If we live long enough we will all become disabled in one way or another. Those trolls who mock disabled people will most likely meet Karma one day and she will bite. Such a shame it will be too late to undo all the harm they've caused people in the interim.

I have reflected on something I read recently which took the wind out of me and to paraphrase: if 94% of people who know their child will have Down Syndrome will terminate the pregnancy because they are fearful about what kind of life their child would have, what would the societal 'normal' look like if all those people were allowed to exist? Rukai wouldn't be the only child in his school with DS because there'd be dozens of others like him. I don't know, call me kooky but I'd take a few more, would I be so lucky. I know no one else who lifts everyone he encounters like he does.

If we fear that which we do not understand, how much less afraid would we be if only we were allowed to experience these human differences at greater scale? What if we could learn so much earlier that disabled human beings are not to be feared? Why are we so afraid? And why do we let ourselves live our lives in such a negative place?

No fear. Not here. But I had to have Rukai to know this. I go on and on about it because I want to save anyone who still may need convincing from further years of not knowing how wrong it is to constantly 'other' people with disabilities. It infuriates me because it's just so flat out foolish.

We. All. Bleed. Red.

Back to Gratitude.

I am grateful for the gift of my son.

I am grateful for what is good about him: his humor, his never ending empathy, that his permanent set-point is love, that he gives a wicked cuddle and has an equally wicked laugh.

I am grateful for all of you who have read this far, who care about this. Who love him, and listen to me. I love you all, more than you can possibly begin to understand.

I am grateful for the very inclusive place we are living, the beautiful school who celebrated every minute of this very special day with us this year. To have taught the children the Makaton and lyrics to the '50 mums' video and live streamed the performance on the school Facebook group today, there are no words to say what that meant to this tired old mum.

But I am most grateful for the foundation builders.

To all the mums, and dads, and brothers and sisters, and children who are now adults, or those who were sadly lost long ago. To all the activists and advocates, the charities and fundraisers and awareness bringers. To all the medical professionals who do get it, and who are working so hard to educate their colleagues. To all the celebrities who are using their fame and status as a force to bring forth a positive change in this life by calling attention to inequality everywhere. For all your years of tireless advocacy that has got us to this place called Today. For those setting down everything else in their lives to keep the conversation going, to 'lean into the discomfort' as I read once and it has stuck with me ever since. I lean with you. I lean hard. The road is long but you have lain it and we are run / walking that road. Until we collapse and have nothing left to give but our last dying breath.

Relentless. Forward. Progress.

Thank you.

It is YOU who I think of when I am wiping back happy tears (again) because of something wonderfully inclusive that's happened in our lives.

It is YOU who I think of when I notice language changing from 'risk' to 'chance', when I see so much less dispersion of the repugnant 'R word' and I know there have been millions of people who've watched a YouTube video and wept and clicked on thumbs up and commented about how much it moved them.

It is YOU who I think of when I reflect on how easily we can mix in our community. Because without all you've done, society would not have come this far.

But still so far to go. Shoulders back. Take a breath. Take my hand. Let's fire that arrow once more and fly.


Saturday, 16 December 2017

The one where all the dreams happen.

It took me twenty minutes to stop crying.

Twenty minutes! That's a high school lunch break. That's a 'between meetings comfort and email break'. A drive to the forest. That's how long it takes to finally fall asleep after a day so hard the only way you find dreamland is to think of 'white, empty space' and hope for the best.

Twenty minutes. But it's little wonder it didn't last longer, because this was a moment I'd waited to see for the entirety of my life.

One stage.
One dance performance.
One son.
One lifetime of hoping I'd live this moment.

We have been so blessed to have found the place we live in now, and oh how we found it! Nearly pushed away by a real estate deal gone sour, we somehow stumbled upon our current home 3-1/2 years ago, only five houses east of that lost property. This house has brought us to and kept us in this place, amongst these people, with this dance school, with that amazing human being who has been so welcoming and wonderful to our beautiful boy who wants little more than to share the joy that radiates from within him with everyone in reach. Shaking bum. Grooving to his own beat. 

My son. On a stage. Dancing.

Years ago I prayed that he would dance. They had me so worried he'd even walk. His walking still stilted with poor balance but today the angel that's going to change all that. Because...well, I'm crying again as I write this. Because those deep fears remain ghosts. Those worries, vapor. That was my son up there. MY son. On a stage.


Yes, I later had to carry him to the car he was so knackered, but STILL...

Those who have known me for decades will be reading this with an altogether different totality of heart and may quite likely be stood up and cheering. My life was dance. My only motivator was dance. My soul...for dance. I wish you were all there. I wish you could have seen that live. 

My God.

It all feels too hard to explain, too vast to bundle up into type on a screen. But if you know me you know I was incinerated this afternoon. I stopped filming and fled to the lobby. Absolutely unable to stop the floods of tears. I saw a man standing there and tried to explain what I was feeling, how grateful I was. He happened to be the father of Rukai's dance teacher. It was as beautiful a finish to that beautiful moment as I could have imagined. I thanked him for creating her. And I meant it.

I'd started filming the stage some 60 seconds before Rukai was due on it. I didn't want to miss the curtain stroking past that beautiful face. Not a second to be lost. Not for this. No way.

I said to the air 'come on dude, you can do it'. Not because I didn't think he could, but because I could not believe this moment had finally come. That I was about to see this. And the curtain pulled back and there was my son. On that stage. And it was all I could do to hold the camera still. And exactly as I did the day before while watching him perform in the school nativity, I wept silently, while an epic grin reached the lobes of my ears and quite probably pierced them with joy. A joy that wrapped around my very soul and lifted me straight to heaven to high five the lost family. Those who were seated right beside me while that camera captured it all. They clapped and whistled for all they were worth. We celebrated that magnificent performance.

The one we were threatened with never being able to see, those many years ago.
Oh, we saw it, mate.
We saw it.

And that pride of my pride knows my pride because I told him all about it. After he saw me grinning and waving at him in the finale. And he waved back. And in that room full of our new 'dance family', there was, for that moment, no one but us. Me on the floor filming, him on the stage waving. 

Oh this moment!! How it shines!!!

I'd no doubt he'd blow me away this afternoon but I am still entirely in shreds. And just like I'd rebuilt the cheese all those years ago, I have glued the heart back together again. My pride---

God, there are no WORDS for it!!!!! I have lost all eloquence, the prose gone to gurning. I am equally full of and empty of emotion. Never been so spent in all my days.

This has been a glorious year of personal disaster and equal personal triumph. My plans for the next are larger than anything I've ever pursued, mostly because I need those challenges to build myself into a better me. I am nothing to Rukai unless I am the best me going. He deserves nothing less.

But man alive, that boy--my boy--

Well, if he is supposed to be suffering...
If we are supposed to be 'barely coping'...
If our life is meant to be difficult, and challenging and painful...

Burn the dictionaries.
Go back to preschool.
Teach me all of existence once again.
You are wrong.

My words are the very best I've got to offer, and today these words are clumsy. Disjointed. My mind is in a whirlwind. 

Today, my son was dancing on a stage.

If I should die tomorrow, that alone has made this a life worth living.

Monday, 20 November 2017

Goddamn you, he's a PERSON.

It happened to my Dad once.

As he was dying, it happened to him. His body was riddled with the cancer that would eventually kill him, and he was in so much pain he could no longer walk. Disabled too by time, something which we will all face if we live long enough. That very reason society shits on the elderly. No one has the patience to 'deal with' them, the slowed pace, the grumpiness about physical deterioration going hand in hand with awareness of their own mortality. These all hard won along with the wisdom of the years should earn them respect. But so rarely it does.

Those years forgotten. Achievements forgotten. To an ableist stranger, if you display disability, you are nothing.

We had all gone over for a visit, that last Thanksgiving together, the most melancholy I'd ever known. No joy, no thanks, just fear of what was coming. And the pain was fully in charge of the visit, forcing Dad's pride into his pocket and his body into a wheelchair. On that same trip we'd taken him out for dinner, one of the last we'd ever have with him. As I got Rukai and myself into the car, T started to wheel Pop from our table to the door of the restaurant. But he couldn't get there.

He couldn't get there because some impatient, selfish, ableist fool stood firmly in their way, looked directly in their eyes and wordlessly challenged them to just try to get past him. Oblivious to the scene from my vantage point in the car parked out front, they finally managed to escape and Dad was apoplectic with rage. A record number of F bombs, even for him - and for someone so weakened by disease to be so strengthened by anger told me all I needed to know about the exchange. Funny thing, big emotion. He was like entropy contained by two armrests and four wheels. The message embalmed in all that fury: goddamn you, I'm a person! How dare you disrespect me, merely because I cannot walk! If I were a younger man, I'd...


Five Thanksgivings later, here we are in this small town, on the other side of an ocean. Minus one Dad. Plus one inclusive mainstream school which has been amazing, as have all of its parents.

Until today.

Now, Rukai is not a steady walker. We know this so we are always aware of and courteous about space and the speed at which typical kids wish to plow across a playground. We try to keep to the side to keep things flowing. We go at our own pace. Admittedly, sometimes this pace is frustrating even for me, but it's Rukai's so it's ok. He's in charge of that show, I'm just the stage crew - opening and closing the curtains on each day, standing by in the green room making the tea.

Today we crossed the road more slowly than usual, hoping 'that-woman-with-the-pushchair' would pass us by before we could position ourselves on the narrow path. My way of thinking has always been that if you want people to be tolerant and accepting of your needs, you have to work within their norms while maintaining and teaching them your own. It's a bit like going outside to smoke before it was mandated. Courtesy for other people. That flows in my veins, it always has.

Clearly that doesn't work both ways.

Throngs pouring through the school gates, rushing to and fro to avoid missing that 'AM' attendance tick and having to go explain lateness again, I could actually feel the frustration as we hit the bottleneck at the gate, followed by the subsequent draft as people raced past us. After we were nearly rammed by three of them, I considered moving us to the side.

But why should we have to? If there's a roadblock while you're driving a car you don't expect it to move out of your way, do you? Slow the hell down or go around us. We have a right to be here too.

Now approaching the labyrinth of picnic tables, two pushchairs are passing one another. One heading in, one heading out. 'Out' pauses to let the other one through, with a slight smile and nod for 'In' and barely a glance at us. As we begin to navigate the same route, she barges past.

No room for you. Too slow. Get out of our way.

This did not just happen here. Not here.

No mate, you get out of our bloody way.
Goddamn you he's a person. You get out of our way.

I am on fire.
I bring Rukai up the ramp and our amazing TA is there, seeing it all on my face.
'Are you ok?'
No I'm not ok.
This is not ok.
Society is not ok.

I am broken. I am in shreds the past couple weeks and those shreds were just tossed on the fire and set alight. The black dog, the black death, whatever it's called it's got me in a choke hold right now. I completely lost my shit in the car on the way home and screamed it out. It made me feel better. Just. Meanwhile the wheel called 'things-which-are-so-bloody-hard-to-change' is rolling me into the mud again. Oh to break the wheel like that fictional Khaleesi.

It occurs to me that a talk I gave earlier in the year at work which required a bit of research into how society views Down's syndrome has really shaken me to the core. I cannot un-see or un-hear some of the horrible attitudes out there, I cannot take away the misinformation other than to write about it, to rail about it. And again - still, always - it's the external forces and attitudes in our world which cause us distress. Down's syndrome in and of itself does not.

And it never truly has.

We are the lady in the magician's box. Empty box, full of nothing but us, bright and beautiful and shining and full of promise. And then the lid is closed and in comes a blade.

And another: Fear.
And another: Prejudice.
And another: Discomfort with difference.

And that magic man completes the illusion by pulling all the pieces apart and showing you that wot hey! The puzzle no longer fits, it is not linear. It is the outside forces which challenge the wholeness of the lady in the box. Leave the box alone and it's nothing more than 'move along, there's nothing to see here'.

All these blades get jammed in, severing us, twisting us around, preventing us from just living in peace and then as quickly as it happens, out they come - away with the misinformation and fear and prejudice and discomfort. And the lady steps out with a grin and a curtsy, thanking the illusionist for cutting her to shreds. The unaffected watchers of it all sit and applaud, and sip their gin. Again.

No thank you. I'm tired of that box too.

Society is as broken as I am. It's like a never ending barrage of bad news and this next one takes the (urinal) biscuit...

In the past week I've read a great deal about something called Changing Places toilets, following social media commentary about the lack of them in John Lewis and other huge department stores. These toilets are designed to enable people who cannot weight bear to use a toilet or for their carers to change their incontinence products on an adult sized bed, through use of a hoist. These facilities prevent having to lay someone down on a filthy toilet floor to change them. Now, I have seen people recoil in horror when they watch someone enter the toilet on an airplane wearing only socks instead of shoes. Imagine having to lay your loved one on a toilet floor every single time you go out?

Because there are only 1044 Changing Places toilets in all of the UK. 1044.

I have two toilets in my house.
There's two or three sets of them across the road at the doctors.
More at Tesco.
The library and all the caf├ęs down the road in town.
At the park, the firehouse, the church...

I can use any of those. Others cannot. And even though our immediate family doesn't personally require a Changing Places toilet, the fact that others do and they are essentially prisoners to 1044 points on the map is a massive, massive problem to me.

Following this outcry over the lack of facilities for human beings trying to just live their lives, people have still had the rocks to moan about campaigners 'expecting too much' and other such ilk like 'you can't cater for all disabilities'.

Is that right? Ok, imagine waking up one morning and not being able to leave your house unless you mapped out a route via that magic 1044 places in the country where you could use a toilet, or change your child. Imagine that when you have spent ten years asking for a simple solution in more places, a solution which takes up about as much room as a parking space, that a retailer who will freely spend £7 million on a single advertisement will tell you that a) they cost too much and b) there's no room in their stores.

Ikea found room. Try again.

Ten years asking and it's not yet standard for new builds. The law has standardized how high bloody plug sockets have to be from the floor, and there are requirements about how many toilets must be in a bulding to align with number of occupants and even how wide the door to a disabled toilet must be. But a Changing Places toilet is not a disabled toilet. So to hell with you if you need more than standard help - stay in your house or seek out that 1 in 1044. Thank you for calling! Have a nice day!

It's little wonder I threw a wobbly in my car. I am flabbergasted by all this. Every day it's another inequality somewhere. The rich get richer, the poor get poorer and 'the disabled' get shit on. Repeat, repeat, repeat. That wheel is kicking my ass.

To all those big box retailers making excuses - shame on you. To all those with the attitude of 'get over it'. No. Never. Until society changes we will keep working tirelessly to change it. Because this is not good enough. I salute heartily all the campaigners - disabled people and able bodied parents / carers alike - who are out there fighting day in and day out for their right or their children's right to dignity. They are fighting for their right to exist, when society would find it simpler to lock them away, to prevent them from participating in life.

And that is wrong on every level. Should a human being actually have to prove they have the right to exist? Check your troubles at the door and take that one on, friends. This is Rukai's long term challenge, not bloody Down's syndrome. Down's syndrome is society's excuse to treat my son like a piece of purposeless garbage.

Not on my watch, mate. I know better and you will learn, you best believe it.

This broken society looks past my son and others who have Ds as if they were a problem who shouldn't even exist at worst, or a plaything who can only give hugs and high fives, and keep them smiling at best. He is a boy with a future who will not be mown down by people moving too quickly around him. He will not be a child for the rest of his life (despite what someone said to me when he was born, which five years later still irritates me). He will be a man and if I have anything to say about it the world will be a far better place by the time he has grown up. I eagerly await the days when he will advocate for himself. And I guarantee that I will be the proudest wing man of all time.

Failing that, I will die trying. I would hope to die very old, disabled from time, still caring about all these things.

And so should you.


Twitter: @downinfrontpls

Saturday, 21 October 2017

Age. Less.

I'm sat here staring down the barrel of 46, vividly remembering the climb up this Hill of My Forties. What a slog. What trials and tribulations. What a climb. What a view. This is the top, over which I'm about to fall. Down towards those ages which start with five, only to rise again. Up and down and up and down we all go. Riding this seesaw they call life.

How we live!

Sometimes battered, sometimes shining.
Bruised and beaten one day, then singing to the sky of our glory the next.
How we live.
THIS is how we live.

Those well past 46 will say 'Pah! Child! Wait til you hear what I've lived!'
And I'd answer 'Tell me. Tell me all of it. This life, these days, so few and so full. So wide with possibility and so delicate to balance. Pull up a chair and tell me how you've done yours. And aren't we all so ridiculously lucky to be here!'

Most of the time I don't know what the hell I'm doing. And it all happens anyway. And I laugh my way through mistakes and triumphs, victories and defeats. The more I learn the less I need to know. The older I get, the more particular I become about who and what I let get in. Isn't it all magnificent?!

The beginnings and endings of my own experiences, then insert one husband and one child to make one family and those extra responsibilities piled on and we live in the tornado as a unit. We screech and roar and tumble around these days, sometimes fizzling out over the water and other times picking up houses and hurling them into the next county, screaming 'AIEEEEEEE!!!' And having each other's backs. And hearts. Always that, even when it's sometimes difficult to find, worse - to feel.

To all the days before and to come, I love you.
Even the hateful bits.
Even the drama.
Even the confusion and loss and unrealized expectations.
Even the lost dreams, because out of every darkness there comes light.

Brighter, always. But you do have to look for it.

Hard work, that.

Still, as I age, I only want to age less. I don't want any days to go having been unlived. Having been missed. We either succeed or we learn. The clock ticks through it all and we grab time in a bear hug and squeeze, eyes welling up sometimes as we watch it go.

Here atop Mount Forties, the slope below looks a bit nerve wracking. To see time before you and know the pace at which you will step forward to greet it, well that is something else altogether. In retrospect, all those previous decades didn't really tell me much aside from all that I didn't know.

One more week and my latest trip around the sun will end. It's been one hot ride.


Wednesday, 13 September 2017

The Consequence of Fear.

Maybe it's the hair. Surely that's got to have something to do with it, the fire burning straight out the top of my skull, red filament catching the wind. I have probably burned forever. Like magma, I simmer and pop and simmer again.

But something recently has burnt hotter. It's burnt me to the core and straight back out and luckily like that TV mother of dragons I can burn and live to tell about it. So here, I'll tell you about it.

How would it change you if you knew that swathes of people living and breathing and moving around on this great planet believed - beyond the shadow of a doubt, that your only child would be better off dead? Without knowing him, or you, or anything about your lives, better
off dead.

Chew on that: Better. Off. Dead. Not laughing and dancing and making friends and going to school and cuddling and...well, you get it.


The more of an activist I become, the more I discover what people really think of Down's syndrome, the less I want to absorb from those people, yet the more I seem to stumble upon them. A vicious catch 22 and it's been splintering my resolve. I stand, but only just. I have been entirely frozen and unable to write lately because I just cannot constantly think about this.

But I have to. I haven't the luxury of a choice. Because it's out there, and there's so little I can do about any of it so I do only what I am able.

When you hear in the news that an entire country (Iceland) prides itself on 'eliminating Down's syndrome' when all that they've done is to prevent anyone from being born with it via terminating pregnancies, well...that, folks, is kindling. (It is also Eugenics.) Light 'em up.

My son. My beautiful Rukai, better off dead? Really?

Better off dead because he does things more slowly than everyone else?

Better off dead because he has a greater propensity for acquiring some health problems - most of which a whopping motherlode of other people will acquire anyway?

Better off dead because he struggles to walk, to speak?

Better off dead? No. No he's not.

How would you feel? Would you burn? Would you blaze?

I do.

Rukai takes a longer time than most people to do most things, but he can and will do them, in his own time. Yet people constantly throw him into a box labeled 'incapable', and 'lost cause' and worst of all, 'better off dead'. Three copies of a chromosome and shazam. Better off dead. Clearly I must be imagining all the joy and the progress, all the happiness and the possibility, all the success and the little triumphs. I must be imagining all of it.

Oh you bet I burn.

I burn with the memory of what we were told to fear and so what we believed, and how we were treated, and how every memory of my only son's birth always begins with a billion layers of sorrow cloaked over us by others. In the fog of that sorrow, I cannot go back and easily remember the delight in looking at our new family member, holding him close, enjoying our beginning. That beginning, our enthusiasm, all of it, was ripped away from us by people who didn't have the first clue what Rukai would be capable of. Many linger still. And they always will. There is no escape.

My mind and heart are ablaze. I burn. I know this will not change.

We awaken every day ready to go to battle for him. That, my friends, is what is difficult about having a child with a disability. That we have to fight so hard for the world to just let him in. I'm so bloody tired. I'm so bloody disenchanted.

I'm so bloody.

Because all those who would look at him 'on paper' and immediately think 'better off dead'? They know nothing. They were wrong. He will succeed, in his own time. Do not underestimate him.

He is my son. Don't you dare.


Fast forward to late August 2017. Our mini bus parked up at the foot of the mighty Ben Nevis, tallest mountain in the UK. Stacks of people, mostly strangers to each other, piled out, loaded up with gear. Last minute pitstops behind the bushes and off we went. I was about to undertake the National Three Peaks Challenge: climb the three highest peaks in England, Scotland and Wales over 24 hours.

I'd been training for the hike since January, with a combination of gym work, running and long hill walks. Having completed the Yorkshire Three Peaks in April I was fit and strong and far more ready than the last attempt. And I started out with a bang, even surprising myself at the pace I was keeping with the group into which I'd been placed. As the terrain grew steeper, I slowed but kept my cool, took it down a notch and steady on. Lungs burning a bit but even pacing and uncomplicated terrain made it manageable. The leaders got away but I was still going at a good clip.

I was feeling great until we rounded a corner and now I'm looking up at a steeper, more complicated scramble up uneven steps. If you've climbed anything you know it's easier to stick to a slow incline vs steps so I was trying to pick out the lesser of the two evils. Along the right was a dirt track - perfect terrain, but with a drop straight down the side of the mountain. Just one look and my breathing went to hell - I couldn't move away from that edge quickly enough. I thought of my boy at home, the words of my husband 'if you don't think you can do it, just stop, do what you have to but be safe'. And that path didn't equal 'safe'. In retrospect, I think I may well have been hyperventilating. At that moment, I was fearful. The realisation that I was being rushed up the side of a mountain, this was dangerous, one false step and there's a motherless child at home, well that didn't bear thinking about. Still I kept moving.

As I picked my way up the steps, my breathing grew even more ragged. A sure-footed and far braver friend was climbing with me, and having been well in front came back to check to see how I was. With the warmth of the day I assumed my struggle was down to overheating so she got my bandanna wet and I felt a bit better but still ridiculously uneasy.

Onward I went, still many others passed me. I dug deep and somehow managed to bind up that fear, pack it away and get beyond it. Until a sudden voice in my ear jarred my concentration.

"This pace is ok," said he, "but if you drop any slower we my have to turn you around at the waterfall."

You're too slow. (Better off dead.)

And there was the turning point. That subconscious memory. That box. That box. Throw away that goddamn box. Piss off with your low expectations.

I said "ok" (like hell you will) put my head down (here we go again) and got moving. Underestimated, just like Yorkshire. I couldn't believe it was happening. Again.

In my head 'this is so dangerous, please don't fall' was at raging battle with 'you must hurry, they want to bloody stop you again. Go go go.'

I pushed myself to the absolute limit, til at least an hour later I spotted the group of people stood opposite the waterfall I had been chasing. Don't make that checkpoint, they take my summit. They'll stop me. The fear in my guts fell over the side of that mountain and I absolutely launched myself across those slippery stones.

"Have I made it?" Gasping. Red faced from exertion and anger.
"Oh yes, plenty of time."

You rotten, heartless sons of bitches.

(Better off dead.)
(Why do you bother? Go ride your sofa. You're too slow.)

As it happens, we made that summit. But the way down was full of those very same steps, and that fear came back with a vengeance. Don't slip, don't slip. Be careful. Yet there was no time to sustain it, we had to keep moving. I found myself taking risks I had no business taking, at one point actually barging past people who were just out there to enjoy the mountain. I hated myself at a few points for being so brash, so hurried, so agitated. A long sandy stretch and now we're actually jogging down. I looked around, this perfect sunny day, views up to forever and I'm running down a mountain. This was certainly no way to see Ben Nevis. At one point, I fell over. Cursing. Cursing, all the while. Stood up, brushed off, kept racing down, down.

My final clock time was about 5 hours 19 minutes. I'd climbed Ben Nevis in 5 hours and 19 minutes. Still that wasn't good enough, I was supposed to do it in 5. Was I? Ok then.

I wouldn't finish that challenge. I was slower than most everyone else.
I wouldn't finish that challenge. I was put in the box titled 'non-finisher'.
I wouldn't finish that challenge. I was underestimated.

To hear 'DNF' announced in your ear at the end of the day isn't pleasant. But it came with an asterisk: I did not finish because I wasn't allowed to do my own thing.

That fear of being timed out for the duration, of being excluded, of failing, all piled up together cost me my challenge. A hard landing down a step on a right knee already weakened by the tiniest of injuries weeks prior finished my hopes. 20 minutes up Scafell Pike they stopped me from continuing to the point I'd requested to stop myself. The detail now so far in the past, that anger now so pointless, I've thrown most of it into the wind, but I will say I heard over the radio this statement by a 'guide':

"Take those steps at a good pace, so if the three in the back fall behind, you can turn them around."

Set them up to fail.

(Better off dead. Go back home, you aren't fast enough.)

Light 'em up.


For at least two weeks after that 24 hour period, I burned with a fervor. And I couldn't pinpoint why the experience upset me to the very marrow. But it did. And now I know why. And now, so do you.

Here is a little boy. This little boy is better off with us. In life, and very much alive. Still I know that when he gets older people will be afraid of him - and they won't quite know why. I've seen pregnant women look at my son and wince. Just the same as I've seen people pity clapping me over finish lines, telling me to keep going, you'll get there! And when I do, the bunting is down, the band has packed up and everyone has gone home. And they're always out of bananas. But Rukai and I have something very much in common, and that thing is what drives my every breath: there will always remain a line that we both seek, a point 'out there' to which we run and crawl if we have to, a line that is always ridiculously hard to capture. But that line will always be crossed one way or another. In good time.

Because you see, as it happens, life is not actually about speed.

Life is about conquering those fears, challenging that status quo, attempting things that you are not good at just because you're not good at them. It's about smashing challenges you are terrified of and trying again when you need more work than most to succeed...whether it's climbing a mountain, finishing a marathon, or giving birth to a child whom society will view as 'broken'.

The true consequence of Fear is unfinished business. It is separation. Impatience. Fury. Angst. Sorrow. It is broken societies with impossible expectations and the inability to care for its most vulnerable members. It is eliminating people from existing because you don't know anyone else like them, and that lack of knowledge scares you deeply. We fear that which we do not understand.

The consequence of Fear is a slow slog up a dangerous path. Pointing our feet towards the top of a mountain that some people would never have us reach. But one day we WILL summit. We will fly our flags and raise our arms in victory. We will look down at those who follow behind and together we will lift them up that hill.

Until then we will keep climbing, unafraid.

Light 'em up.

Friday, 2 June 2017

For I am not finished adoring you.

Oh morning, how I do sometimes despise you. This one possibly more cathartic than most, this one with a door creaking open, quietly, quietly now, don't wake him up. He's tired. From all that fun and play and half term holiday, tired.

From all that "I couldn't possibly go to sleep now, we're in a hotel and my mummy's just beside me" tired.

From all that "What is this ten pin bowling lark, and let's ride roller coasters and half term shenanigans and sightseeing on great ships with stories of great warriors" tired.

(There had been mama, hoping against hope that her great warrior was paying close and careful attention. How to shine. How to command. How to lead. How to triumph.)

Ah, but he is no follower! We follow. We all follow. Go son.


Now today there he lay, pre-sunrise, a similar golden ball of light in waiting, this perfectly imperfect boy (like us all) oblivious to the fact his mother was silent and enamored and treasuring him from the doorway. Oblivious to the fact that she was thinking 'my God, when did he fill that bed? Why is there no space around him?' A glance to the moses basket in the corner, now stuffed with teddies when years prior it had been full of baby and baby's grunting and random cries, "come get me, cuddle me, I need you".

I need you.

That very tiny moses basket now only near his feet. Holding his baby doll when it once held his mama's baby. When did you get so big? Sure, you are larger than life, but when did you get so big?

I blow a kiss and he stirs. As if he feels it land and stroke his cheek, it pushes him to turn over. His hand floats up to rub that cheek, now his forehead, now to scratch that toddler pot belly which just won't go.

Don't go.

You stay. Let's hang out here for a little short while, for I am not finished adoring you. I will never finish adoring you.

Don't go.
(Go. Fly! Go!)
Don't go.

I close the door and go to dress and brush teeth and tie shoes and ready myself for my day. It is now that I'd typically leave for work but that beautiful little boy won't be back in that bed til Saturday night and I just can't go. Not yet. I turn back for one more look. I can't close the door, can't pull away. To hear his breathing is like a symphony, the song of life that brings me life. This boy. This beautiful boy. My pride in having actually made him. What a miracle.

My boy.

This hand on the door holds me still, watching one boy, my boy, life's boy, our boy, stir and snore and scratch and roll and be. Oh the blessing of this child! The love! There has never been such love. I am sure of it. Nevernevernever.


(And when did you get so big?)

I have been suffering lately behind my eyes, that darkness has seeped into my guts, embalmed my soul, clouded my spirit, rained on my hope. I have been unable to decipher why, but yesterday maybe at long last I knew. I realized that my beloved sweet baby Rukai, my heart, my world, had gone. There came little boy Rukai, with a new attitude, often crabby, feisty, frustrated, annoyed. Where did my sweet boy go?

Where? Out. He went out.

Into the world is where he went. And not that this isn't a good thing, but when he went out I seem to have forgotten to give him the map to find his way home. I forgot to watch him go and I forgot to pack him a lunch and I forgot to wait for him at the door. Because I never thought he'd be going so soon. We had planned to wait another year. We weren't allowed that year.

And so I wasn't entirely paying attention to the fact that there was a huge part of this brave new world which required me. Which will always require me. I forgot how much he needed me, but perhaps how much more I need him. I forgot. And here he's been reminding me and here I've been frustrated and stressed and confused by his behavior because, quite simply: I've not been paying enough attention. The tug marks on my trouser leg, apparent. Chocolate stained fingerprints. Sticky with despair. Mummy? Mummy? Please mummy. Come here mummy. Please.


I need you. Don't go.
We used to always be together. Don't go.
Where have you gone?
Don't go.

And there my world has felt empty but my world has really just been right before me, tugging at my sleeve, pressing my cheek to turn my gaze in his direction. Bringing me the remote and signing 'again mama'. Clasping my hand beneath his arm, walking me to the sofa and signing that I should sit. Sit to watch him dance. To cheer him on. To smile. To laugh. To love.

To not forget.
To mother.

As if life isn't complicated enough here it has tried to cleave us apart.
But I know the glue.
It is called Love. Patience. Respect. Pride. Anticipation. Joy. Light. Tomorrow.

The glue is called Rukai. As it was and as it always will be.
The glue is called Us. As we are and always will be.


Together, we go.