Burden is a beautiful, all-consuming word. She is a gift, costly to many, priceless to me. Too heavy, too expensive for some to receive, carry, care for, Love, nurture and enjoy.
Burden is a noun as well as a verb. A load to be shared, a weight best carried when spread Across the shoulders of an entire community, Not one person or two or even three.
Burden can be known by her alter egos, Significance, Substance, Intention or Meaning. Known also as Cargo, she can be most cumbersome! Gold, real gold, weighs its worth so heavily.
Burden carries with her the full range of human emotions. Which weighs more; a tonne of feathers or a tonne of bricks? Feathers make for the softest of pillows for weary heads Bricks build on each other, mortared together to surround, shelter and support.
Burden is a beautiful, all-consuming word. And I am refined by her syllables. Thrilled when others come alongside to share in her Meaning, They add more bricks along the way, building all our belongings.
Burden (whose real name is Blessing) Has just sat down on my lap, smiling, to watch heavy rain lash against our window. Forgive me, but I’ll just have to put this down for a while and finish it later….❤️
“I sometimes hear old people, including Christian people who should know better, say, ‘I don’t want to be a burden to anyone else. I’m happy to carry on living so long as I can look after myself, but as soon as I become a burden I would rather die.’ But this is wrong. We are all designed to be a burden to others. You are designed to be a burden to me and I am designed to be a burden to you. And the life of the family, including the life of the local church family, should be one of ‘mutual burdensomeness.’ ‘Carry each other’s burdens, and in this way you will fulfill the law of Christ’ (Galatians 6:2).” John Stott The Radical Disciple
Not on the pages of an inclusive advert, or some clever marketing campaign. Profits helped along by an investment of virtue signalling. The ahhh factor leaves a sense of pride, of doing good. Progress none the less, positive images welcomed by most, including me. No criticism, no envy, there’s room for us all, and all of us are needed, ultimately.
Not on the pages of social media, as we scroll, pause and smile for a few brief moments to notice difference and give it a like. Nor in the sound bites and platitudes of an inspirational news story or televised fundraising event. Down’s syndrome mentioned to the masses in the same breath as your name. As if your difference it isn’t obvious from your photo and therefore necessary to firmly and quickly affix.
In a digital age it seems to me that these are the places you are most definitely wanted. Needed even. Increasingly so. I’ve wanted this too, and many I know who work tirelessly hard to bring this about, for reasons of good. Yet, the varying motivations for wanting or needing this exposure seem, at times, to compete, and end up blocking you entirely from view.
Were you routinely seen today in the park, or the mainstream school or the cafes, restaurants or bars? Or in the Church or the shopping centre, or the swimming pool? How about the Pharmacy, or the Dentist’s waiting room, or when queuing for a bus? Will you one day be seen at the Jobs fair, or the college open day; are these places even open to you? Your kind of diversity seems to do best in a photo opportunity; contained within (Facebook) borders that have yet to be crossed into a new way of life that is good for us all.
Did anyone, aside from your teacher, see your Monday morning joy-face as you entered the classroom of your Special School today? Or hear your laughter at the same point in the same song we sing together every day? Did anyone see you fall silent last summer when your world shrank a little more and, for a few months, you rarely left the house? Did they get to share in your delight as you danced in the living room for the hundredth time to Daydream Believer? You danced like no one was watching: you’d do the same even if they were – a silent disco isn’t the place for you.
Are you needed by society? Definitely. Are you wanted by society? Yes, but only to a degree. I’ve noticed youare routinely missing from it, yet, it appears, you are not routinely missed. Except by those precious humans in our lives who hear for themselves the music you play and collect the colours you bring; they make sure that you are never unseen. And, except by me.
For the “foolish” things of God have proven to be wiser than human wisdom. And the “feeble” things of God have proven to be far more powerful than any human ability.
I walked alongside you, guiding you down the aisle.
Ribbon Girl.
An honour I never dreamt I’d be given. Through a sea of Faces who, quite rightly, were looking at you, not me. An unconventional Bridesmaid, no floaty dress or flowers to hold. You would have thrown those away in seconds. Your entrance had an air of tumultuous serenity as you stomped your way to the front, heavy footed, row by row.
You did not know why you were there, but knowing why has never really mattered to you. You are so often content to just be in the moment; especially when those moments are surrounded by this much care, this much thought, this much love. You even paused in your ceremonial duties; stopping to observe an unfamiliar but friendly, smiley, beaming Face.
It’s a Tea Pot kind of face, not a Coffee Pot Face.
There are no long, drawn out frowns here today. This strangest of journeys is filled with Tea Pot Faces that beam achingly wide, from handle to spout. Tears, of course….but none sorrowful.
I tug at your sleeve, prompting you to take a few more steps. Bridesmaids are supposed to keep moving, not hold up the procession. You have not reached the end of the aisle yet, and there are more Faces to look into as you expertly wave your ribbons of ivory and green. Ribbon waving is a serious occupation, and you are well practised in this art.
You glance with some puzzlement into the Faces of those who know you well and the Faces of those who don’t. Faces of those who have heard all about you many times from those who love you dearly; notably on this occasion, the Bride and her Groom. They have honoured you amongst their friends without realising; in every conversation, every photo shared, every story of you that they have so fondly and often told. There is no advocacy superior to this.
These are Faces that do not display any expressions of prejudice they may once have worn, before they heard about you.
These are Tea Pot Faces, not Coffee Pot Faces.
Smiling at you, beaming at you. They do not frown at you with long, pitying glances or worse, stares. We’ve been in those processions too. Neither do they watch you from behind a camera lens, capturing this precious moment and missing it at the same time. They have been asked to enjoy the occasion without such distractions. You, of course, do not need to be asked.
These are Faces turned in readiness to welcome you.
It hasn’t always been this way. Scrutiny has followed you since before you were born, its motives not always for your best. I am glad when the cameras are put away, for only then can you truly be seen for who you really are.
You reached the end of the aisle. Your wheelchair waiting to give rest to your braced ankles and feet. Relieved of your duties, still you clutched your ribbons. You would need these later, at the Wedding Disco, where you would show the Faces how to wave them too, with much joy. You always have plentiful supply to go round for those willing to receive; ribbons and joy.
The Bride made her entrance and rightfully took upon herself the loving, welcoming gaze of all the beaming Faces. You had gone ahead and performed your responsibilities; preparing the crowd for her Magnificent Arrival.
I like to imagine you were simply returning the favour.
The tone, the welcome, the love, had long been established by those who truly know you, your sisters, their husbands, your entire family, your friends, their friends. You are so very loved. In life, in your life, my longing is that you will always be surrounded by these kinds of Faces. A Procession of Faces that stop you in your tracks and make you want to study them, spend time with them, showing them your ribbons and teaching them how to dance with you.
A Procession interspersed with the Faces who perhaps, like me, once used to only drink from a Pot of Coffee, and now much prefer a Pot of Tea.
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.
Who else could be here, changing our culture from within,
Changing our heart?
Who’s missing from your programmes?
Who’s not being given any consideration?
Look around and ask yourself
Who else would like to do as we do?
They are not some kind of aberration.
Who’s missing?
I am, though I am not missed.
Who’s missing out?
We all are.
Inclusion is important but I prefer belonging:
noun
1. the action or state of including or of being included within a group or structure.”they have been selected for inclusion in the scheme”
Belonging
noun
“a feeling of being happy or comfortable as part of a particular group and having a good relationship with the other members of the group because they welcome you and accept you”
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.
Downright Joy 