What’s the correct name for it?The sparkle you get on the surface of the sea especially in summer…… as sunlight catches the ripples, usually on a calm day. A gently moving carpet of glittering diamonds, shimmering and shimmying as far as the eye can see.
I’m not sure there is a name for it. It’s far too beautiful a sight to be contained by a single word. It takes my breath away every time I see it, which is not that often as I do not live by the sea.
I wonder if I would tire of this sight if I did? It’s a sight I long to see every year. Most years I’ve been blessed enough to see it. It makes me smile. Every single time.
I don’t have a Bucket List. You know the sort of thing, a list of places I want to visit in my lifetime, and or experiences I want to have at least once before I die. A cruise perhaps, or a trip to the Northern Lights. I’ve never fancied jumping out of a plane but I wouldn’t say no to a Trip on The Orient Express. Or Vienna. I’d quite like to visit Vienna. But I don’t have a Bucket List. I don’t really have a list at all.
Bucket lists are hard to fulfill when you are the main carer for someone you love. A list filled with experiences that may never happen simply because to make them happen would require the movement of both heaven and earth for most carers and the one(s) they care for. I don’t think many would deny that being an unpaid carer involves a level of sacrifice and loneliness that most people will never have to give or experience…unless they become one themselves, that is. Not only that, but the name Bucket List doesn’t sit well with me, it feels sort of depressing; though of course I know that one day I will ‘kick the bucket’ like every other mortal on the planet.
Personally speaking, having a Bucket List is a pressure I can happily live without. Don’t get me wrong, I would love (I think) every one of those experiences I mentioned and may have dreamt about as well as more, should they ever come my way. For now, and for the foreseeable future (which is a strange thing to say I always think, because the future is not really foreseeable for any of us) I am content to enjoy those experiences that often come with no name but that make me smile, make me catch my breath. And there are some I don’t enjoy at all that are also to be collected, valued even.
Some happen to me occasionally, like visits to the seaside. Others daily, hourly. Often.
Like the moment my daughter, who has Down’s syndrome, laughs out loud at who knows what. It’s a mystery but it’s very funny.
Or the moment she is given shoes that don’t rub her little feet red raw anymore, along with splints that fit correctly. She marches off, instead of hobbling. Her legs still tire, and when they do she beams as she sits back into her wheelchair. She cannot tell me her joy or her pain in words as she has none. These moments sparkle as much as the sea sparkles in the height of summer.
Or the moment her sister instinctively helps her off with her coat or shares an armchair with her. Though she shares more than an armchair; she shares her time, her attention, her love. Getting back in return seemingly nothing sometimes, but in reality everything and more. What is the name for that? Some say siblings of people with Down’s syndrome suffer. They give it a name, even though they have never sat in the same armchair, or taken off her coat. How dare they so falsely name an experience of which they know so little.
Sometimes it is the moment just after another procedure, operation or clinic appointment. Heart heavy with loving her through yet more trauma. Hers and mine. Tear stained walks along hospital corridors, telling myself and her “It’s over now, it’s ok, we’re going home”. Knowing that it’s only over until the next time. Knowing that it doesn’t really get easier.
Even the kindness of the medics can be painful and I have been known to crumple.
These moments are harsh, but they are also profoundly beautiful. The love swells, mingled with pain, making it ever more precious.
Oh but I do have a Bucket and I am very fond of it. It’s not shiny, it has holes and probably needs a good clean. Yet it is filled with experiences I would never have imagined possible before I was gifted the responsibility and privilege of caring for this disabled child and her sister.
Many of these experiences have no name, some are incredibly painful, others joyful beyond measure; and I treasure them all.
There was no time to prepare you, we were running late. The show was about to begin, we had to take our seats. I pushed you through the heavy canvas opening, into the darkened arena. I’m not sure how much you could see, your eyesight is blurred even with your powerful bifocals.
What did you see first?
Was it the red velvet carpet laid over the sawdust covered ring? Was it the faces of the audience, eagerly anticipating the start of the show. A show they’d been anticipating for days, weeks or months perhaps. Talking excitedly in the days leading up to their visit about what they would see. I often think that anticipation is the best part of the good and wonderful experiences we have in life. And when I stop to think that you do not live life like this it makes me sad. It shouldn’t. It really shouldn’t.
The tiniest of spiralling particles caught your eye as the spotlight fell. You had no idea what this was, where you were or what was about to happen.
I knew what to expect. At least, I thought I did. Yet, somehow, you knew how to anticipate something you did not understand. You picked up on the atmosphere. You understood you were somewhere new, somewhere exciting, somewhere different.
You were not afraid. You were not alone, of course. I was by your side, my eyes were talking to you over the sound of the band that had struck up loudly; reassuring you, letting you see that this new experience was a good one. I held your ear defenders in case you needed them, but you pushed my hand away.
Curiosity was your ticket to the circus. You were born with a lifetime membership.
And unlike most people, you have never learnt how to live your life without it.
Mexican music filled the tent and your curiosity took you right into the heart of the Mariachi band. There you were, in the midst of the violinists, trumpeters, guitarists, vihuela and accordion players, though you never left your wheelchair.
Curiosity made you listen and led you straight into a dance.
You did not dance as though no one was watching, for it would not matter to you what others think. You danced anyway.
Curiosity said this was what you should do, so you did it. Curiosity called you, moved you, as it always does.
Your ticket to the Circus was the same price as everyone else’s, though you entered via a different doorway and were given a different ringside seat to the rest of the audience. And I’m thankful for the Front of House Team who went out of their way to welcome you to the Circus. They sought you out even from a distance as I wheeled you across the field; not to turn you away but to honour you and make you feel welcomed.
I have a feeling that those who live their lives in the Circus are born with the same ticket as you. They know that curiosity is a sacred thing.
You saw the same acrobats perform as I did; you saw trapeze artists, jugglers, clowns, musicians, dancers, actors as they told us a story. A story of triumph and joy, formed over years of practice, of falls, of knocks, of getting it wrong, of picking themselves up and starting again. Of determination, of commitment, of blood, sweat and tears, of silliness and joy, of community, of travelling to unknown destinations and pitching their tents in strange places, of wondering at times if they are going to make it. Of an uncertain but exhilarating future.
We went to the Circus with hundreds of others last week, yet I believe you saw more, experienced more and took more from it than anyone else in that tent that day.
Years ago I was told by well meaning people that it would be kinder for you and for me if you were not born; only because you have Down’s syndrome. They did not know that bolted onto your extra Chromosome was a Golden Ticket of Curiosity with a ringside seat.
And I’m convinced that you still have the best view.
I recently took time out from caring for my disabled child who has Down’s syndrome and took a trip to Italy to visit family I had not seen for a very long time.
It was also an opportunity to spend more time with my eldest child, and introduce her to a whole new cultural experience as well as meet some of our family for the first time. For one entire, exhilarating week, we wandered the cobbled streets of Sorrento, savouring the sights and the sounds of this beautiful coastal town in the Bay of Naples.
Lemon trees lined our pathways, Orange trees also. In the narrow back streets, shops and bars jostled for space and competed for customers, their baskets filled with ruby red pomegranates and lemons the size of grapefruits. Leather goods spilled out of doorways giving off an intoxicating air of ‘We are Quality and we know it.‘
Sorrento, according to Greek mythology, was home to Sirens, who lured sailors onto its rocks with their mesmerising songs. Today, tourists and locals alike gather above those rocks, lured not by song but by sunsets. A place to stand and pause, capturing a memory or two against the vibrant colours of blue, fiery reds, orange and deepest yellow hues that fill the skies.
A short train ride along the coast finds the ancient city of Pompeii and its neighbour Herculaneum. In AD 79, a cataclysmic eruption of Mount Vesuvius, known to locals as His Majesty, destroyed the lives of over 16000 inhabitants and the livelihoods of those fortunate enough to escape the suffocating clouds of ash or the pyroclastic flow. Wandering through Pompeii’s ruins, our local tour guide brought this legendary city to life as she told us stories of some of the people who once lived and worked here. The rich, the poor, the everyday and ordinary lives and their extraordinary blueprints for so much that we know and use today. Who knew, for example that house builders in Roman Pompeii knew the design for LEGO centuries before LEGO did? Our guide told us much of what she knew; human stories of human lives, achievements, hardships, joys and sorrows. Baking bread, shopping for clothes, going to the theatre, gossiping in the town square. Every day life of men, women and children, living and thriving in community.
‘Lego’ type design found on building blocks in Pompeii
One of the most remarkable outcomes, at least to me, of the story of the Volcanic eruption in AD79 is how the surrounding area eventually recovered from this catastrophe. The whole region is famed for its produce. Olive groves aplenty, vineyards, oranges, lemons and much more are to be found on the slopes of Vesuvius in abundance. And, according to historians and geologists, the land became far more fertile as a result of the eruption. The economy recovered relatively quickly and future generations enjoyed the spoils from the enhanced rich soil. They thrived. His Majesty Vesuvius brought life as well as death.
When my daughter, who has Down’s syndrome, was born I was given a poem. The poem was about a planned holiday to Italy being diverted in the air and landing in Holland instead. This poem is well known in the Down’s syndrome community and is a bit like marmite in the way it divides opinion. Personally, I found it to be well meaning, but deeply disappointing. No offence to the Dutch; I’d love to visit their country too one day. But I will not allow anyone to steal Italy from my heart or my dreams. Having a child with Down’s syndrome is not a diversion or even a different destination; who knows where any of us will end up in life after all? Neither is it a catastrophe as some think or express.
What happened inPompeii was a catastrophe. Having a child with a disability is not.
I do not minimise the challenges that come with bringing up a child with Down’s syndrome. I never have, I hope. The opposite in fact. I have no desire to ‘lure’ any parent faced with the news that their baby might have a disability into a false sense of security, when the journey is clearly fraught with, at times, hard, rocky places. But modern day Sirens still go off where disability or, in particular, a diagnosis of Down’s syndrome is concerned; bringing fear, panic and urgency in decision making. They need always to be tempered, in my opinion, with a softer, sweeter song. A song not of falsities or deception, but of hope. There is still life to be had, to be lived, to be enjoyed. And in many ways it is a life more vibrant and verdant than before.
I do wish that my daughter’s life, and the lives of others born or unborn with disabilities are seen first and foremost as the humans that they are. Perhaps, if they were, there would be no need for a Down’s syndrome community or a disabled community.
Just a community would be enough.
A community more welcoming, more supportive, more vibrant, more fertile, more prosperous and hope-filled for all its inhabitants, its humans, than ever existed before. Thriving.
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.
I settle back in my chair. By the window, looking out on to The Garden.
The chair I have just bought so I could look out at the garden I have just planted.
Aching legs, tired arms, calloused hands.
Weary. Content. Exhausted.
Her garden. I mean it’s mine, ours. But I have planted it for her.
Grasses that will sway, Lavender that will seduce. French, naturally.
Hustling Hostas; each one thinking they are the star of the show.
They do not realise how much they need each other.
A copper windmill, jewelled with stones of purple and red and blue. Ponderously regal. Disdainfully, it shares the stage with a water feature….a resin hand-pump masquerading as cast iron, surrounded by a family of acrylic white ducks. Yet it might as well be Royalty. To her it is a thing of great beauty. Its diminutive trickle of water elicits sounds of great joy from her. She is non verbal. My daughter.
So I love it too.
Oh and there are butter yellow Calla Lilies! Still beaming at dusk; positively shouting at dawn.
Like her.
There are spaces yet to be planted. Gaps. Bare patches. Problem areas. This garden is incomplete. I hope it is never finished, for where would the joy be in that?
We will do things differently. Experiment here and there. Get things wrong. Get things right. It will be hard work, often very lonely, but it will also be rewarding. Not in Gold medals or Silver Gilts, as we are unlikely to ever meet the criteria for those; but none the less, so very rewarding. There is no competition.
And though we still live on a busy road, in a busy town, where noise, traffic and so much more disturbs our peace, where there is so much about our lives we cannot change, though we would like to…. and though passers by and those who pass us by, may have no idea even of our existence; we will be enjoying the garden.
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.
Downright Joy 