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.
The barriers have been going up lately at an alarming rate. As we move into a new stage of life with my daughter who has Down’s syndrome, so her needs have increased whilst the help she needs is held back.
I’ve wondered at times if the joy I’ve written about here would follow us through the years, or would harsher new realities emerge to crush it? Am I a fraud, claiming Downright Joy when faced with increasing barriers surrounding care needs as well as a few more challenging behaviours? Then there are days of staring into the unknown of what if’s and how will we cope’s of her future? Those are bad days, where joy is elusive.
Authorities are increasingly, or so it seems, putting more and more hurdles in our way to jump over. Not just authorities, but every-day life sets out its barriers at the start of each day. Road blocks all around us, forcing us to divert, often at the last minute. Satellite navigation voices sounding more and more urgent telling us to turn back, we’ve missed our opportunity. Find another route.
Is this what they meant, eleven years ago, by referring to her as a burden?
And yet I don’t recall them mentioning these things back then. In the sonographers room we were quickly told what she probably wouldn’t be able to do. No one told us about the things she wouldn’t be able to have.
Yet, after she was born I quickly learnt that the doing wasn’t all that important after all. We all do things differently anyway because we are all different. But the having is a different matter because we all have needs, even if those needs vary.
So why did they not tell me about the things she wouldn’t be able to have as opposed to the things she wouldn’t be able to do?
Was it because that would shine a very uncomfortable spotlight on us? On society, on Government policies, on community and on our own value systems? A spotlight on lack of resources as well as unwillingness to pay the price of putting others needs before our own. It’s an uncomfortable conversation very few are willing to have.
Sacrifice. Sacrifice is an ugly, painful word to many.
A word often now devoid of its sacredness.
No. Instead they focused on her. On her extra Chromosome. She’s the one with the problem. Not them, not us. And if she were to make it past the 3rd trimester then she would still be the one with the problem. Not them, not us.
They made sure I knew this before I turned down their final solution. But they did not tell me everything.
They did not tell me that there will be so many things she can’t have “because we won’t allow it.”
At birth, she’ll be given a different Red Book to every other baby on the ward. Because she’s different.
They did not tell me this.
As she grows up, the clothes we sell on the High Street won’t fit her, she is the wrong shape. The shoes we sell will not support her mis-shapen feet. But we’ll provide her with a pair that do fit; however we’ll repeatedly let you know just how expensive they are. Please do not ask us for a new pair until these have completely worn out, useless and are falling apart.
They did not tell me this.
Oh and she won’t be able to use the same toilet facilities we do because they will not meet her needs. Please do not ask for ones that do. They are far too much money. You’ll have to lie her on a filthy floor instead. Better still, don’t go anywhere, stay at home instead.
They did not tell me this.
Her school will be different. Good but different. She will be hidden away there from her community but still cared for and loved there by those who know her worth.
I already knew this and it gave me hope.There are good people in our communities and especially in our schools. We need them so much.
She can join in the very limited activities that we will pay other good people to provide, but you will have to attend countless meetings, fill out numerous forms and open your life to intense personal and painful scrutiny in order to access the funding we have set aside (under lock and key) for people like her.
They did not tell me this either.
There will be so many more experiences she cannot have, but not because she cannot do. And when, eventually, she leaves school, the opportunities for her to be part of her local community in a meaningful way will probably dry up to virtually nothing.
They did not tell me this. But others who are further along this road than me are already signalling what (doesn’t) lie ahead.
Doing things differently should never be a barrier to being part of a community. Love can always find a way, but love has to be an action not just a feeling. Love is a commitment. Love is hard work. Love is sacrificial.
The cost of living crisis began a very long time ago, but many did not notice.
What is spoken over the unborn with Down’s syndrome is a discourse agreed long before their parent(s) set foot in the clinic. An unspoken discourse….
All things considered, we’d rather you didn’t come in. Don’t take it personally though. No, no, see it as a kindness! To you, to your parents and to the rest of society. The intelligent, sensible thing to do. We really can’t afford to be quite THAT welcoming. Look, we’ve even developed this great new test which will help matters enormously. Routinely even; It’s no big deal, really. It’s for the best.
Diversity? Yes of course we like diversity. But only the diversity we like.
Obviously, we will leave the decision up to your parents. That’s the accepted thing to do. We won’t tell them what you can’t have in your life, just what we think you can’t do in your life. Make it a matter of personal choice, thus absolving us of our collective responsibility.
Theycan be the ones to take the blame; your parents. Not us.
Either way.
Either way you lose.
When the cost of living is deemed of higher value than the cost of loving we all lose. To diminish one of us is to diminish us all. I now see exactly where the burden comes from, and it isn’t from my daughter who has Down’s syndrome.
I am glad that they didn’t tell me these things; even if they knew of them. Telling me what she would not do was enough of a barrier to overcome. A prediction based on a value system I do not share.
It seems to me that we’ve got this idea of scrutiny entirely the wrong way round.
We are scrutinising the wrong thing. Instead, the camera, the tests, should be focused on the scrutinisers, on our society, on us. Searching our genetic make-up, and finding out how and what went wrong? When did we allow these anomalies to creep in? When did we become a society that is so focused on perfection, on achievement and success, so focused on ourselves? When did we forget that in order to truly live, we need first to love.
Downright Joy is found in the daily sacrifice.
It’s in the harshest of environments. It is breathtakingly humbling, eye-wateringly costly, yet remains the greatest privilege and honour of my life to receive.
I never saw their faces, but I knew who they were. From behind.
Two adults holding hands. One taller, one smaller. One leading the other; slowly.
Walking.
A familiar outline, her unmistakeable shape and gait. Heads bowed, looking down at the pavement. Shuffling a little. Like a Charlie Mackesy illustration, but in real life.
Though in real life very few want to own this masterpiece.
And though I’d never set eyes on either one, I have seen them both before. I have heard others speak of them. This shuffling pair.
One person being led by another. Their image a negative left to develop in the darkroom of pity and now imprinted on the societal mind as such.
What a shame, they say. What a terrible shame.
Imagine.
So sad.
Pity them.
Who will care when she cannot?
And they sigh.
I used to think there was no power in pity. Yet I see that pity brings powerful judgement. It asks questions that end with full stops. Pity does not want to know what the solution might be; that would mean purchasing a new book. Finding a new way. Too costly both in time and money, perhaps. Pity allows for no appeal in the Court of its judgment.
Case closed.
This mother. Her daughter. Perhaps I judge them too? Two women, one caring for the other but each one enjoying the other. If you look a little closer you might see this too. You might see what they see. You might see them.
The scales do not tip in one direction if the weights that are placed on them are of equal value.
Two humans walking around my home town. I walk where they do, only instead of holding a hand I hold handles – those of my daughter’s wheelchair. Mickey Mouse spins and grins inanely from the spoke-guards; evoking smiles from passers-by as opposed to frowns, thankfully. But pity is still there, I can feel it; and although Mickey is a welcome walking friend just now, we will one day outgrow his company.
They say beauty is in the eye of the beholder. So is pity. I say. And there is nothing pitiful or even outdated about the two women I saw walking today. However slow or painful they might appear to a world that rushes on by.
Their outline. Their conversation. Their caring.
Their walk.
If there is sadness, which certainly there is at times…… it is that they walk together, alone.
So often.
Two is company, but three is not always a crowd.
This walk; this very familiar walk of theirs; of ours, of others too.
It remains a walk that is illustrated by love; the details of which can readily be seen, shared and marvelled at by those who are willing to move aside the highway and step into our Camino.
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.
Downright Joy 