Today I cleaned the blinds, slat by slat. Wiping away layers of dust, marked with fingerprints that have gathered stealthily. Unnoticed. Hidden until they were not.
I noticed them first thing. Shafts of early morning sunlight exposing eachtinyparticle. Each mark, each imprint. Light has a tendency to do that; expose things.
I noticed one of the blinds was broken. Not functioning as it should, no matter how much I tugged or pushed or pulled. How long has this blind been like this? I’m not sure if anyone else has noticed, perhaps just me.
Anyway, I think I’ve got away with it. A broken blind can wait, there are other jobs ahead in the queue. It’s not something I am able to fix, I don’t have the resources, time or skill. But at least cleaning it today helps take my mind off the fact that I have been unable to fix you.
You and I are good at waiting; long overdue appointments they said you badly need. Another day, another week or month, even year; I lose track as the dust continues to settle. For the present, I’ll find something else in our lives to polish, clean or mend. As it remains one of the greatest of honours in my life to do everything I can for you.
I began by naming this poem “Broken” but then I remembered: I’ve pitched my tent in the land of hope.
I don’t remember the last word you spoke. I had no idea you had no more words to say, so I did not think it important to make a note.
I wish I could remember when you last spoke. I had no idea your speech was reaching an end and I did not notice it slip away. Your words carried off into the sky on the breeze of busyness. For a while I did not realise they had gone.
If I’d known I would have looked up sooner at the sky, the trees. I wonder if their branches would have caught your words, and held on to them….at least for a while. Giving me a chance, perhaps, to climb up and take them back for you. One by one – no phrases. In reality, only a few words anyway, now tangled high up at the top of the tree. Out of reach.
Like a child’s once preciously held balloon and now abandoned to the elements, your words disappeared. Snatched out of your hand whilst no one was looking. Taken from your lips. But unlike that child, you did not cry or alert me to your loss. How could you know what to say when what was missing was needed to say it? You let it go without a fuss.
Occasionally someone notices the balloon in the tree. In winter, no more than a dash of colour against prison grey boughs. In summer, glimpsed only from within, under the canopy. Protected by the greenest of leaves, but still there.
Oh no, they proclaim, someone has lost their balloon!
Perhaps they know the sinking feeling of watching their own child’s balloon float away. Just…. out…..of…..reach……. Momentarily, or perhaps for longer, they feel that pain.
I still notice the balloon.
I see that tree every day and I see the balloon. Your balloon.
For a long time, the lost balloon has made me sad. I have tormented myself with questions as to what more I or anyone could have done to help you hold onto it. Treasured, painful videos from back then remind me of the time you had with your balloon.
Whatever the reason, the balloon took flight and has not returned. And I can no longer see it in the tree.
You don’t even look for it. It does not matter to you. You spend no time worrying about the things you do not possess, even if they were once yours.
Instead, you notice what and who really matters in your life. With your entire being you speak eloquently and joyfully, leaving me in no doubt of what is important to you. No words required. You hear a song and your body sings it back to me. You understand melody with the best of musicians. You see someone or something you love and your hands give a speech of their own.
You also notice the tree, but simply because it is magnificent! Like you. And like those around you who never had a balloon in the first place. Some of them your classmates or friends you have made along this different path. They too are magnificent, and like you, they speak in ways too lofty for most people to hear. Maybe that’s where the balloon has gone. Higher up.
You look for what remains, for what is. Not for what has gone, though the balloon was nice whilst you had it.
Love remains.
And if you never speak another word in your life, love remains. Or if one day you find your voice again and never stop talking, love remains.
The balloon was desirable; so many things in life are, and I missed it when it let you go.
Yet love is far and away much easier for us both to hold onto and is tied in such a way that cannot easily come undone.
A funny thing happened the other day…. I think I may have attended the Best Wedding Ever. Or at least, the Best Reception Ever. The actual Wedding took place two years ago but plans for a large celebration were scuppered by Covid. Thankfully, seasons change and the Bride and Groom could now be truly honoured by many more than were able to attend the original ceremony.
I’ve since been reflecting on why this celebration felt so special. Of course, all wedding celebrations are special, but this particular wedding celebration was like no other. For a start, the Bride and Groom had Down’s syndrome. How many weddings have you been to where that was the case?
It was more than a celebration. More than a just a party. A joy filled day and night of people with Down’s syndrome – and there were many – and people without Down’s syndrome, quite simply enjoying one another’s company and letting their hair down. All the usual things you might expect to find at a wedding; colourful outfits, smart suits, table favours, speeches – including the best one I’ve ever heard from a Groom, cheesy wedding songs and disco lights…. Simple extravagance. Wedding-y.
Yet also quite profound.
Alongside those who were getting married, giving speeches or playing musical instruments, living their lives to the fullest, planning and dreaming of their own special day, was my daughter who also has Down’s syndrome. And though I do not possess a crystal ball, I am realistic enough to know that she is unlikely to realise those same dreams, even if she were able to dream them in the first place. She is far less able than many with Down’s syndrome. Yet, in that wedding reception I felt a sense of love and care towards her that I’ve rarely come across anywhere else outside our own community. As she wandered around the tables of seated guests in her own autistic, non-verbal yet noisy world, present yet elsewhere; I sensed a belonging. No-one stared or looked away as they often do in these situations. They smiled. Not out of pity either, but out of love. They reached out to her without hesitation. They honoured her just as they honoured the other guests who had Down’s syndrome. We did not strive for inclusion. That was a natural given. And though I joked about ‘life goals’ when she inadvertently led the Conga from her wheelchair, itwasn’t a joke at all. Even the DJ said it was the best Conga he’d ever seen.
At breakfast the next day, I saw very few hangovers, though we had all enjoyed plenty of wine.
Instead, I saw other guests who also had Down’s syndrome, excitedly talking about when it would be their turn. Their wedding day. Even if they hadn’t actually got a partner. They were now daring to dream the same dream.
This Wedding was not a celebration. It was an Honouring Ceremony.
A safe place to be. An honouring place to be. Where the least became first.
A day when people who have Down’s syndrome were truly honoured, not routinely mocked, feared, shunned or despised. Yet, within the space of just forty-eight hours, this realisation came home to me and my family with a brutal bang.
My eldest child, just 12 years old and a young carer to her sibling who has Down’s syndrome, soon found that the Wedding Bubble had burst. Saturday’s honouring of people with Down’s syndrome, people whom she loves, turned into Monday’s mocking of them.
A fellow classmate, in their impatience over tech that wasn’t functioning correctly, directed two words at my daughter. Forcefully.
‘That computer’s got Down syndrome,”
They said it twice. Once to her, then to an adult. For laughs.
Except my daughter didn’t laugh. She cried. She left the room in shock and missed the start of a test she had been about to take. The other child was taken aside, reprimanded and shown how their words could never be funny, only hurtful. Mercifully, restorative justice meant that heartfelt apologies were made and fully accepted. The child was genuinely contrite and, they felt bad.
A lesson learned the hard way, yet there should always be room for a way back. Room for restoration.
Down’s syndrome.
A child used those words. As a slur, or, at best, in what they thought was an acceptable joke. Words that were their first choice. A specific, identifiable condition. Down’s syndrome. Not Learning Disabled or another condition. They targeted Down’s syndrome. And the irony of them having their own Learning Difficulty made that all the more distressing. How does a twelve year old learn to say such a thing? To target a group of people so thoughtlessly, or so heartlessly? For laughs. I can only think it is because they had heard it before. Likely many times. Something like this….
Down’s syndrome = equals stupid.
Down’s syndrome = worthless.
Or, perhaps more likely in this instance….
Down’s syndrome = funny.
A familiar portrayal that’s been on run and repeat for as long as I can remember.
And so, in response, I do the one thing I can do to alter this course.
I honour my precious Down’s syndrome child. And, before the entire community points out my language (or apostrophe use – hey I’m in the UK, it’s what we do), I used the words exactly how I meant them. My precious Down’s syndrome child. My precious child with Down’s syndrome. One and the same. Mine. Precious.
It is my honour to honour her. To serve her. To get on my knees when she needs me to. To set aside the things I might like to do so that I can be there for her, with her, alongside her or right behind her. Never in some kind of martyrdom, simply a response to what caring for another really is. A privilege.
To honour her because she exists, because she breathes, because she is.
I am all for honouring people with Down’s syndrome. Others have, and continue to set Down’s syndrome apart from the rest of society in brutal ways, both in word and deed. They do not honour people like my daughter or those at the Wedding. And as I doubt that achieving equality can ever balance the scales of this injustice, so I determine to set her apart and tip the scales in the opposite direction.
I will honour her. To honour is so much more than to celebrate. It is not dependent on any accomplishment, however noteworthy. The wedding was an honouring occasion. It was filled with love and kindness. I hope there will be many more weddings for people with Down’s syndrome, (and I really hope I’m invited to some of them too!)
I’m so done with the push for inclusion. I’m done with the push for equality if I’m honest. In all walks of life. Truly honouring someone who has been dishonoured brings restoration. And when something is restored, it means it is set right. It is no longer unequal. The scales are re-calibrated.
Honouring that comes from a loving heart can achieve so much more than any equality act or piece of legislation.
Restoring honour to those who have been the most wronged, the most dishonoured, is a good place to start.
People with Down’s syndrome are, I believe, close to, if not at the top of that list. Hierarchy takes many forms.
And there is always a way back, if we allow it. Wrongs can be righted.
The dishonoured can be honoured and restorative justice can work for the good of us all.
Restorative justice
noun
a system of criminal justice which focuses on the rehabilitation of offenders through reconciliation with victims and the community at large.
It’s a thing of beauty, my daughter’s favourite toy. It stands apart from the usual plastic playthings a child of her age may be drawn to. There’s a quality in the workmanship that can only be admired.
Bejewelled with rubies, sapphires, amber, amethysts and emerald ‘stones’, it spins on its wooden base with the lightest of touches. A little encouragement is all that’s required to make it dance.
Place it in the path of sunlight and it positively sings with joy.
And yet it’s fragile. Prone to tumbling off the table and clattering loudly, ungainly, disappointingly to the floor. Brushed off, knocked down, discarded.
And unless I am there to pick it up and put it back on the table, that’s where it stays. You see, my ten year old, non verbal, autistic daughter who has Down’s syndrome has never learnt that when something or someone disappears from her view, it or they are actually still there or somewhere else. Existing or existed, but now hidden. She has not learnt that her favourite toy can be experienced or even enjoyed again if only she would look for it. So she turns her back and walks away. She forgets the joy the toy brought and moves on to her next experience.
Out of sight, out of mind.
Until last week.
Last week was different. What changed, and why, I have no idea. Others more widely educated in these learning processes can explain. All I know is the toy dropped as it often does but this time she went looking for it. She bent down, she picked it up and it was she who put it on the table then continued to play with that which brought her joy. Her delight carried on as before, but her world had, in that moment, opened up and my delight was off the scale.
A first. An action I had given up on ever being possible.
This time, there was no turning away and moving on to another experience. This was the one she wanted and she took hold of it with both hands. She noticed it had gone and that now mattered enough to go looking. My assumptions about her were wrong.
Rubies, emeralds, amber and sapphire danced again in the columns of warm spring sunlight that streamed across the table.
An ordinary table in an ordinary kitchen on an extraordinary day.
A pleasure that was hers for the taking and she was finally able to seize it.
Some ten years ago, after many weeks, she came to be discharged from the neo natal unit that had been her home and our place of safety. A kindly consultant handled our departure and, sensing my unease at having to leave what we knew, told me of how much the world had changed even in a relatively short space of time. Just twenty-five years earlier her cousin had been born with Down’s syndrome and was routinely put into an institution.
Out of sight, out of mind.
The sadness in her eyes stayed with me. The if only was palpable.
She knew there were so many colours waiting for this baby. My baby.
I noticed she spoke only of her cousin in the past tense.
I hope someone walked with him and pointed out colours.
Like in a rainbow; though I imagine he noticed them first.
Last week the colours got a little sharper in our Down’s syndrome world. And now my daughter knows she can at least hold them in her own hands.
I see others similar to Hazel, they are picking up brushes and painting rainbows like I’ve never seen before. New colours coming to the fore in a shifting landscape. Emerging artists taking up residence in a world that still struggles to embrace their art form. Their Down’s syndrome.
We should not take their palettes away thinking they cannot paint. Neither should we begrudge what they find or what they are given. I have found they will share their lives, their experiences, their possessions willingly and extravagantly. They are not the ones needing lessons in humanity. From my little window on the world of Down’s syndrome Ive noticed they are often the first to show empathy to anyone who is treated differently.
When another cries in the room, my daughter cries too. Every time.
Instead I want to stand back and watch them pick up the colours that matter to them. However they pick them up, whatever their understanding or ability is. What will their world look like to them? How will they depict it, shape it, colour it? Who or what will they paint into it?
I no longer want to assume I know what’s best for my daughter or for others with Down’s syndrome, or anyone else for that matter. I do not speak for them. They are not voiceless and never have been, it’s just our world paid no attention to their voice or afforded their particular art any worth. The loss of colour to humanity must be, I have often thought, incalculable. No. Instead, I want to learn from them, from the experts, the artists. I’m convinced we can all move forward into new and more vibrant life experiences when we do.
Of course I’ll have my own opinions, and in future I’ll try harder to keep these to myself if I cannot be sure they will do someone, somewhere some good. But I do want to see a people group who, though in the past were routinely placed in institutions and are still discriminated against simply because they have Down’s syndrome, are now brought front and centre where their colours can be seen as they were always meant to be. Not because they are better than anyone else, but because they’ve spent more time than anyone else under the table.
Out of sight out of mind.
Some say diamonds are a girl’s best friend. I say it’s emeralds and rubies, and they can be friends to anyone.
I wrapped you up tightly against penetrating winds and prying eyes. I pushed your sister to and fro in the orange bucket swing. I must have fed you there too. Not by bottle or blanket covered breast but by nasogastric tube. Your soft, perfect cheek aggravated red raw by a strip of sticky tape that held the tube in place inside your tiny nose.
Gravity feeding, with one arm in the air, holding up a purple syringe. Fortified milk flowed down a tube, disappearing inside the pram. I glance around the park, fearing the double take. Afraid of what people might say, wondering if they might be cruel or insensitive, as had happened days earlier when a stranger had noticed you had Down’s syndrome and a “funny tube”. They pointed right at you and it stung.
Yet, I’m secretly hoping, wondering, if someone would walk by and say something lovely; to make what hurt sting a little less.
Always wondering, always worrying.
Afterwards, we watched the ducks busy on their little island. We did not feed them; no hands were spare for that. They took no notice of us anyway, as we had brought nothing to their table.
I took you there as a toddler.
In a pushchair.
Head to toe in snow suit, thick socks and fur lined boots. I knew your feet would be cold. Unable to warm them up by running around. You were a toddler who never toddled. Your boots always as good new. I pushed you in the orange bucket swing, your sister now at school. In reality, I wedged you in, both hands holding up your floppy body against rigid plastic as we both went to and fro, awkwardly.
I’m sure I fed you there again. Less concerned by the double takes or curious looks. Your beautiful face now healed. A thousand syringes later and with a battery-operated pump to boot, the tube by now surgically placed directly into your stomach. I worried about you getting cold as I pealed back the layers and connected you to the pump.
Picnic table not required, I sat on a bench and we watched the ducks. We did not feed them, there was no room in your bag for anything other than essentials.
I’m sure you must have wondered what they were, those funny little ducks. What did your blurred almond eyes make of them, I wondered?
We stopped visiting the park several years ago and I think our world shrank a little more. I had deemed it pointless as you could no longer access the playground. We could not enjoy it the way other families did. It was unsuitable for you; a public right of way with a caveat. And dogs. So many dogs tearing around the park with exuberance. Enthusiastically sniffing out their daily moments of freedom with no lead to restrain – though the Official Looking Sign said that, for the benefit of others, they ought not.
Silly sign, the dogs did not read it.
Today you visited the park again.
In your wheelchair.
Only this time, I wasn’t there. I have seen some photos your teacher sent me. I see you share your joy and delight at this unexpected trip. I hear your laughter. I see the spring in your step, even from the confines of your chair. A blanket has been placed lovingly over your legs to keep out the cold wind. I wonder who put it there? I’m so thankful and touched that they did; it makes me cry a little. It’s something I’d do for you.
From your chair you watched the ducks. You held a stick. You’ve always loved a stick. Your face tells me that you wondered at all you saw. You shared your wonder with your teachers and classmates. No doubt you shared it with passers-by as they did a double take at the class of wheelchair users and their carers surrounding the park’s little pond. I’m certain they would have smiled too.
And I wonderedwho was teaching who?
Today you came back to the park. Your pockets still empty, overflowing with untold riches to give away. Pockets filled with wonder. Treasures you woke up with, stored, perhaps, under your pillow? Like some sort of biblical manna, it appears each day. Ready to hand out to those you meet. You are my miniature, giant philanthropist.
I hope you visit the park many more times.
I hope you never hide away. I hope also, that you are never on parade, rather on a par. Experiencing all the park has to offer, as others do, and giving back in all the ways I know you will. Today you were all the things a person should expect to be: surrounded, included, protected, loved, invited, heard, appreciated, present. Though the world may sometimes hold up an Official or Unofficial Sign that says, for the benefitof others and your own, you ought notexperience these freedoms.
Silly sign. You cannot read it. I hope you never will.
Today you came back to the park. And, though I’ve had many sleepless nights wondering if this would ever be the case, you were all those things without me. A walk in the park may be harder for some than for others but there are always sacred spaces to be found, and shared experiences to be had.
And, perhaps in the way you do, I now wonder at it all.
A silent letter goes before you, shaping your reason, your purpose, your meaning, as you enter.
Unheard.
A shaft of dust-filled light through a blackened open doorway; bathing her and me in so much warmth, and reaching only just beyond this moment. This heaviest of doors has only ever opened so far and I am grateful for all it never reveals. Today is enough.
I’ve tried to push the door open further. Take it off even. What lies beyond its hinges? Is it what I imagine? What I fear? I wonder if the words she once began to form are beyond it, waiting to return. Or are they lost forever? Silenced. Perhaps.
I don’t even know what it is I hope for anymore, let alone what I can admit to fear. I dare not go there. No matter, my arms have long since grown heavy summoning a strength that I do not possess for a day that I do not own. Today is enough.
I sink to my knees beside her hospital style bed. Her room a contented mix of teddies and tubes, socks and syringes. Devices and daydreams.
I begin where I began yesterday, and the day before that, and all the days before that. She dangles her damaged ankles and calloused, misshapen feet over the side of the bed and waits expectantly for me to put on her socks. Followed by her hard, unforgiving plastic orthotic moulds, followed by her clumsy, heavy leather boots. I hear every word she does not say. Her sounds reverberate a silent and mysterious speech. Her thoughts so profound she dare not speak them to those who have no appreciation for such mystery.
How can something so irreparably damaged be so beautiful? How can one be so silent, yet so noisy?
I have learnt that what is damaged should not always be thrown away.
I adore her damaged feet. I adore her sounds. I adore her.
I sink into the depths of this holiest of spaces, this silent, unheard place where love dwells and discovery awaits. Where deep calls to deep. Where tectonic plates of pain and despair seismically shift along plates of joy and hope. The cracks formed long ago, and because of them, not in spite of them, I am swept up by this tsunami of love I now have for her. Tsunami with a silent T.
I catch my breath that I am here at all, and so is she.
We made it half way up the stairs. She is on her stairlift. I am holding down the control button.
The alarm is, well, alarming. It’s shrieking….. I’m no longer green. I’m red I’m red I’m red. And this is as far as I can gotoday.
I disagree with alarmist opinions, I always have.
Yesterday you were green. They said you were fixed. They said they couldn’t see anything majorly wrong. They looked, they tweaked, they said they did their best yesterday and indeed you were green. They hoped their remedy was permanent.
So did I; the cost is mounting and climbing higher than any stairlift could ever go.
Red, green, red, green, red, green
You, me, me, you. Today we both turned red.
I brace myself to lift her down from her predicament. Praying we do not topple. And I did actually pray.
Is this what it feels like to be rescued from a fairground ride? Stranded in mid-air whilst all around go about their business down below, busy on adventures of their own. A whole community, just down there. Out of reach.
We are high up. Hoping for help, though it does not come. Praying. Feeling very small, very alone. At least one of us is. The other not so. She has always loved fairgrounds. The lights, the colour, the spectacle, the drama. She is laughing right now. Unconcerned. All the fun of the fair is in her eyes as it always is. This is what blessing looks like.
Oh I too love the funfair, don’t get me wrong. It’s true I’m not all that keen on the Helter Skelter or those swingy things that send you hurtling through the skies at breakneck speed. And the Dodgems – well they are just plain dangerous if you ask me. But find me the Hook a Duck stand to try my luck with, or a colourful Carousel with painted horses and I’ll happily hop on and go round all day.
A fairground is a place where screams are many yet, no one hears them. They are not required to. Laughter, joy, screaming, fear, exhilaration, merge into one, giant, merry-go-round. Pleasure and pain. Pain and pleasure. Pleading to get off then getting back on for more. Fearful moments soon overcome by joyous ones, then replaced by fear….and so it goes on.
We are downstairs again, yet we need to be upstairs. She needs to sleep so we cannot stay here. Now there’s another obstacle in our way. It’s the same but different. Still alarming, still flashing and now IN OUR WAY. Reminding us of the journey we now face. A perilous one. An uphill struggle; each of my steps must now be carefully and very slowly taken for fear of us both tumbling down the stairs. The chair is not moving, no matter how hard I plead with it to work. Please just work. I scream a scream that no one hears. Not even her, thankfully. Only one of us feels the fear on this particular ride. The other knows only love and trust. This is what blessing looks like.
One day I will laugh at this too, just not today.
One day the plan will come together. A crowd will gather around us. Tradesmen and women will set to work to help her; and to help me. The stairlift will no longer be required to transport her to sleep each night. She will sleep downstairs, safe and sound in a new environment that can truly meet her needs. One with new rides to experience, buttons to press, levers to pull, hoists to take her into orbit. We will laugh with great gusto at ourselves in front of distorted fairground mirrors, knowing that our true self remains intact. Dignity will be restored. Hers and mine. This is also what blessing looks like.
Just not today.
Tonight we will dream of carousels and candy floss and all that this fairground means to us; we are certain we do not ever wish to leave.
By rights my child should be talking by now. She’s 8 years old you see.
By rights she should be running around; climbing, jumping, falling and scraping her knee.
By rights these are skills that are just delayed.
She’ll get there in her own time, don’t fret.
Her extra chromosome is championed by those of us in the know. Though I think even we get it wrong by the examples we hold up for inspiration:
Actors, dancers, TV stars, athletes, some are even politicians. Look how much these people with their extra chromosome are contributing!
As if they need a reason to be here.
Nothing to fear they tell me; she’ll make her own way in this world like them.
By rights.
By rights my child shouldn’t even be here. Such is the overwhelming view of the world to people like her.
By rights I could have deleted her life. I should have done so, according to some and by rights for which others have fought.
My choice? My right not to do that?
Of course! But you’re on your own.
Stop. Let’s go back to the beginning, where it all seems to go so wrong.
So very wrong and not at all about rights.
My child’s very existence is a cry to be loved.
She is not to be measured on a scale.
Scales of achievement that judge her, proclaiming her worth in how much she can bring to the table.
By rights she may never measure up to societal scrutiny, or even that of her own community. Who knows when or if she will talk or run?
Truthfully, she is not here by rights – for society says she has none.
She is here by love.
It is love she is attracted to. Not achieving or being the best. She has no desire to acquire more knowledge or power or fame, or the rest.
She has a desire, a need to be loved. Let’s face it, don’t we all?
She is not here by rights, she is here as a gift.
A priceless gift of discovering that to love is not always easy, but is of greater value than anything else.
Tell me…. what gift was ever a right?
“Every child, every person needs to know that they are a source of joy; every child, every person, needs to be celebrated. Only when all of our weaknesses are accepted as part of our humanity can our negative, broken self-images be transformed.”
―Jean Vanier, Becoming Human
Downright Joy 