Downright Joy

Discovering joy in unexpected places – a journey into Down's syndrome, Dyspraxia & Autism


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Cost of Loving

Photo by Pedro Kümmel on Unsplash

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. 

They can 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. 

They won’t tell you that, but I will.


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Circus of Curiosity

Image by Claudio Kirner from Pixabay

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.

Photo by Alison Morley


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Lemons and Pomegranates

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 in Pompeii 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.


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Emeralds and Rubies

Photo by Sarah K Graves @ Pixabay

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.

Ruby reds, ambers, sapphire blues, emerald greens.

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.


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Perle di Saggezza

(Pearls of Wisdom)

Image by moritz320 from Pixabay

Eighteen months ago or so, you will undoubtedly recall, hand-painted rainbows began appearing across the country of Italy, at the start of the Covid 19 Pandemic. Strung from balconies where Italian citizens resided, unable to leave their homes and now trapped in a place of fear and uncertainty. The banners were often emblazoned with the words “Andra tutto bene” which translates asEverything will be ok.”

Some citizens began to sing from those same balconies to one another. Accordions struck up, Sopranos serenaded, Baritones bellowed. And, before long, it seemed like the whole of Italy was singing. As the New York Times put it, Italians had found “A Moment of Joy in this Moment of Anxiety”.  Songs erupted from people who were clinging onto hope as well as learning to be thankful for the expertise of the medical profession that they were now so very dependent on. Something similar happened here in the UK with rainbows appearing all over as well as clapping and cheering for the NHS; though we never quite mastered the singing. That’s best left to the Italians – always.

A song, from the heart, is a precious thing indeed, and Italy will always have a very special place in my heart. Some of my family are Italian and have lived there all their lives. They too, draped a huge rainbow banner over their balcony, and sat behind it daily, looking down onto their fishing boats and nets from their centuries old home in the beautiful town of Sorrento in the Bay of Naples. A place so deeply loved by locals and tourists alike that it has a famous song of its own Torna a Sorriento. Yet this beautiful place was now filled with fear and uncertainty. Hope was called for, fearful hearts needed a new song to sing. And as they sang, so hope spread, even inspite of their circumstances.

Ten years ago, my family GP was the first medical person to say anything positive about what life might be like with my baby who had been born and then diagnosed with Down’s syndrome. We’d just come home from two traumatic months in the hospital NICU and I was struggling to come to terms with her diagnosis. Our GP was the first person to give us hope that we would be OK. That we would be more than OK in fact. His words to me were so much more than medical and exactly what I needed to hear. He said that life with a child with Down’s syndrome would be an incredible journey and I would meet some amazing people. He did not sugar-coat or minimise the challenges we were facing; there was no need, we were already up to our necks in plenty of those, medically speaking. He simply sat on the end of my bed, metaphorically leaned across, and in one sentence, opened a new window onto a brighter view. One filled with a more colourful sky which, from that moment on, began to chase away its gloomy predecessor. A vista that slowly began to fill up with the possibilities of a life of love and of loving.  His years of experience as a family Doctor told him that there was indeed still a life to be lived and loved. Hers, ours. He was not afraid to gently tell me so.

My GP has recently retired and so I took the opportunity to write to thank him and tell him how his words had made a life changing impact on me and my family. I have been told that he referenced my letter in his retirement speech, which has touched me no end.  You see, somewhere over the years, the hope he gave me as a frightened and overwhelmed mum, fearful of what an unknown future might hold for my little girl with an extra chromosome and for our family, has evolved into thankfulness on my part.  I felt it was important to say thank you for something so precious and transformative. For something better than any prescription, test or medical solution, helpful though those things may or may not be. I wanted him to know that I am forever thankful for his wisdom

Wisdom – from the heart, not just a text book – is a precious thing indeed. A pearl of great price.

Facts are undeniable, but finding hope to live with them, beyond them and inspite of them is where a diagnosis can become a beginning not an ending. My sincere hope is that every parent who is fearful on getting a diagnosis of Down’s syndrome, as indeed I was, finds such a pearl. I hope they too will find continued support from those who will help them to prise it out of its shell and wear around their neck as their pride and joy.

Italians know a thing or two about life; about singing songs of hope, of love, of loss, of joy and of sorrow. Their language is rich and heavy with the beauty of these things.

And I think, though I’ve never enquired, that my GP may possibly be fluent in it.

La Vita e Bella, si?


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Listening to you

Photo by Brands&People on Unsplash

Two terrible words were spoken with some force over my non-verbal, severely disabled daughter recently. A moment of frustration by one who briefly had care of my child and ought to have known better, but, for whatever reason, didn’t. I write this not to invite a pile on or indeed look for sympathy. Their words alone have brought enough shame on them, whether they know it or not. And they remain a good person who made a mistake. This is not about them.

But their words did damage.

Not so much to my child; as in an apparent, one-off moment of uncontrolled frustration, the words spoken went literally and metaphorically over her head. She could not/did not understand them, though she may have felt their force. Others heard, however. Worse still, another child heard. And that matters.

In the space of two brutally uttered words, a story was told to anyone in earshot, especially that other listening child. A narrative of shame. I wasn’t there to hear them spoken first hand and indeed I was calm as I wrote them down on a post-it note during a phone call I don’t think I’ll ever forget.

As I did so, my mind began to fill with many more brutal, ignorant words that have been spoken over her by others People who have had an audience of others to hear them.

Risk. Burden. Problem. Tragedy. Sorry. Terminate. Deal with it. Get rid of. Did you know before hand? Didn’t you take the test?

Words that hurt then but more so now, alongside words of comparison that continually attempt to steal my joy. Not her joy, thankfully. That appears to be intact.

Words that suggest she is unworthy of life itself. That being human can’t surely mean including people like her. Genuinely? I think she embodies being human; and….quietly, simply, she includes the rest of us without question.

Lately, I’ve more keenly felt this unworthiness that is pinned onto her life in so many ways. Whether it is the lack of good health care and research that doesn’t just label each problem we encounter as ‘typical Down’s’, or the lack of opportunities for her to be fully part of our wider local community. Then there are the barriers around her physical development that do not seem to be there for children without a Learning Disability. Or perhaps it’s her future, and ours. What will become of her? What kind of opportunities will she have as an adult? How will we/she cope? Who will care?

This incident simply served as a trigger to all those feelings and more.

I closed the call and found myself in pieces.

She lives her life at the very opposite of the words spoken forcefully over her by those who do not know her or even wish to know her. Words spoken perhaps through fear of what they do not understand. Or in anger towards that which appears out of their control. They make sense of these emotions by framing her in the closed doorways of their own prejudice.

She is positioned to suit them. Their narrative. Their take on the world. Their needs. Their concerns. And she remains outside the door. Hurting no one yet on the receiving end of cold, harsh judgements.  Others then hear this narrative and are empowered to proclaim it too.

Yet I am thankful that there are those people in her life whose doorways are open. They position themselves before her, at her feet. In front of her wheelchair not behind it or above it. Many of them. Not least her teachers, respite providers, disabled community support workers and volunteers, her family and our friends and more. People who take up a position not in some kind of worship, adoration or even deference, but a posture that looks up at her in order to learn and care. Not one that looks down in order to control.

The spoken word may carry truth, joy, hope, compassion and ultimately life to the listener. It may also carry fear, anger, pain, confusion, untruth and even bring death to the hopes and dreams of whoever might be listening.

Narrative:

A spoken or written account of connected events; a story.

The narrative about my child, and others with Down’s syndrome or other Learning Disabilities, has been collectively written. It is then spoken out by and to a society that stands above them instead of kneeling down and facing or even looking up at them. Control, fear, and, perhaps, an unwillingness to humbly learn from a different other.  It’s the natural response for many and, before I knew my child, I was guilty of it too. This post is not about the condemnation of anyone. 

I am thankful for those who open their doors, welcoming my child in, then daily kneeling down in front of her to care. Their words and actions are life giving, not soul destroying. They help rewrite her story.

And, because of them, her story has become a sacred text; highly valued and important amongst the Chronicles of what it is to be Human.

Reader, if you’ve read it, please pass it on to someone who has not; for no one should ever be called a stupid girl.


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Clouds

I take off your glasses and wipe away today’s pursuits.

Stratus make way for cumulus.

Your vision always so clouded, yet you look up to search my distracted eyes and smile into them.

I take off your shoes and remove the plastic orthotics that cage your hot, sweaty feet.

I remove your socks to change them and, momentarily, your feet are free.

Your mobility dependent on these devices. Always and forever.

I’d offer you a drink of water but you have not learnt to take it. So you play with the syringe plunger as I tube feed you, directly into your stomach. How remarkable a thing that is – life!

Nine and a half years of it.

Taking your weight, I lower you to the floor to change you; imagining the equipment we will one day be gifted, (for it will be a gift), to do this with dignity.

You smile.

Probably the same smile you gave the person who did this for you at school today.

Clouds are extraordinary.


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Mum’s the Word

Recently, my almost 12 year old asked me a question. Actually she asks me loads of questions. Most of her conversation starters begin with “ I’ve got a question”. This has been the case for a very long time. I’ve been told this can be a feature of her Autism; a kind of verbal tic even, but I’m not sure that’s helpful. I see no reason to medicalise or even analyse her every characteristic. And, whatever it is, I quite like it. It gives me a moment to prepare for whatever might come next. It’s rather charming too.

Her question was this:

Was it ok for her to still call me ‘Mummy”?

She is my firstborn. She has always called me Mummy. This is my name as far as she is concerned.

And she was concerned. She had presumably heard others at school refer to theirs as ‘Mum’. She was worried that she might be expected to make a change, to fit in with others, to appease them. To not stand out or appear babyish. And here is where her autism really does kick in. Changing my name…changing that familiar, constant, never previously questioned name was a step too far for her. Venturing into the Land of Unprecedented. A change that society seemed to want to force on her. I am her Mummy. She said.

And who am I to argue?

I am her Mummy. For many years, I thought I might never be anyone’s Mummy.

We live in an age where, increasingly, we are encouraged to identify as whoever we want to. This isn’t a blog post questioning or criticising that….far from it. If I could have identified as a Mummy when I was in my 30’s and held a baby in my arms, I would have done so – in a heartbeat.  It was not in my control to do so. There was no child for a very long time to bestow that identity on me.

Eventually, after many years, M brought me that identity. I call it a privilege because it feels like one. Even now. Still. I will never get tired of hearing her call me Mummy. Or Mum, if she chooses to.

Recently, I’ve noticed a frustration creeping into the SEN/disability parenting world from parents who wish they weren’t continually referred to as ‘Mum’ by professionals in appointments or meetings. They want to be afforded the respect of being addressed by their actual name. I fully understand their reasons why, but I just don’t feel the same way for reasons I’ll try to explain. The word Mum or Mummy can often feel like a label. Slapped on carelessly at times. It can feel belittling to be in a room of professionals with all kinds of titles as well as letters after their names and be referred to as ‘Mum.‘ It’s sometimes as though before you’ve even entered the room or said a word, your opinion will not carry as much weight as theirs. You are just ‘Mum’ after all. I get it. I really do. I’ve felt that sense of inadequacy being bestowed upon me by those who believe they must know better. Thankfully only on rare occasions, but I have. But I’ve also had to recognise that, they do often know better than me on all kinds of levels. And, quite simply, being a ‘Mum’ to me is not belittling. It’s a title I love and cherish. A title that brings to the table as much as those with professional titles do. Often more so. The problem, I think, is not with the name or title – it’s with the understanding of who that name or title is.

Ultimately, this is just not a battle I am choosing to fight. I have no issue with others doing so, however. And so, although it has occasionally happened to me, and I’ve been labelled ‘Mum’ in a way that may not recognise what I bring, I’ve learnt to peel it off and reapply it as a badge of honour. A privilege. Undeserved. Something that I did not earn or study for; it was a gift out of the blue. But still mine to wear nonetheless, and a weighty one too.

I don’t think I will ever mind being called Mum. Or M’s Mummy, or Hazel’s Mummy. After years of heartache at not being one, why would I? I have many friends and acquaintances who would also give anything to have that name. Their own heartaches of baby-loss, losing a child or of infertility means that the name ‘Mum’ carries real pain and/or remains unattainable.

And, of my own two children, even after nine years, one of them has never called me Mummy. Not clearly, not properly. She is also Autistic but Non-Verbal. She sometimes forms a sound ‘Mmmmm’ when she sees me, or when she is poorly and needs me. That’s the closest she comes to using my name and it makes my heart sing when she does. So when others, even professionals, refer to me as Hazel’s Mummy, I have to admit to feeling nothing but pride. I can’t help it. It’s something I cannot ever take for granted. And I want her to hear my name used as often as possible. Who knows, perhaps one day she will say it back to me if she hears it spoken often enough.

If the role of being someone’s Mum came with the honour, respect and dignity it truly deserves in society (and not just on Mother’s Day) then perhaps other ‘Mums’ wouldn’t feel so belittled or put down.  Perhaps others who find out they are going to be a Mum will feel supported and respected enough to continue their pregnancies instead of feeling that they have no other choice but to end them. Perhaps those ‘Mums’ who are told their unborn baby has Down syndrome will be honoured and respected by being offered all the help in the world to birth and care for their child. Instead they are often routinely steered in the opposite direction and told it’s for the best. Their role as a capable Mum called into question in those first few weeks and months of pregnancy and never even given a chance. Perhaps those who have suffered the pain of loss through miscarriage or losing a child in later years would be afforded the dignity and honour of being recognised as their Loved One’s Mum – always. And perhaps those who long to be a Mum but, for whatever reason have not been handed that title, would have their pain recognised and given all they need or want to help carry it.

Titled not labelled. Dignified not denigrated.

Mum. Mummy. Mom. Mama. Mam. Me.

Mum’s the word to be shouted from the rooftops, never silenced, never shamed.


4 Comments

Weightless



Experts.


They said I should grieve, the day you were born.
Mourn the child I had imagined.They said it was ok. To be expected. 
Deep down I knew this not to be true. 

The same experts

Gave me permission to end your life, before you were born. 
They said it was ok. To be expected. 
Deep down I knew this not to be true. 

Other experts told me I had simply arrived at a different destination. The plane had been diverted to somewhere new.  
Deep down I knew this not to be true. 

Each expert expertly dishing out a new sense of entitlement to add to my collection.

Gathering up our things, we left the hospital some weeks later. Your eyes wide with adoration and wonder, you carried in your arms only dependency and a total acceptance of all you met.

My eyes wide with adoration for you. Yet wide also with fear
at how I might protect you or worse, fail you. I carried you, tightly, so tightly, in my arms. You weren’t that heavy. Yet you came weighted down. The scales of injustice, entitlement and expert opinions tipped heavily against you, but in reality, weighing me down, not you.


You were even given a different chart to follow in your little red book. The shock of the standard, socially acceptable, growth chart being ripped out in front of me – as a sticking plaster is ripped from a wound – will stay with me forever. You won’t be needing that one, the expert said. 

And in this post neo-natal world that we now live, you and I; we are almost a decade on. We now have a collection of expertise and entitlements to fill a library. More recently, Pandemic life has brought out all kinds of new publications. Hospital appointments/therapist meetings, education meetings and more all take place via a computer screen. And, faster than you can say “lockdown”, I can spin around to my zoom backdrop of strategically placed books, and whip out the relevant chapter and verse to quote to whoever will listen. I can read them my rights. Your rights. We have lost so much this past year and ‘Someone’ needs to give it back. You are entitled. I am entitled. Now I’m the expert.

Pandemic life has, I think, brought out so much entitlement. Bookcases are groaning under the weight of expectation. Rights.  

Yet never once have I seen this entitlement in you. It is a weight you steadfastly refuse to pick up let alone carry. You have no need for this burdensome thing. ‘Someone’ can keep it.
Every day you tell me to put it down, though you never say a word.


You are the expert. You always have been.
In humility. In being human. In welcoming another’s life, not mourning it. In asking nothing more than to be loved whilst you freely give of your own endless supply. In moving on to the next experience once one has ended. You were always destined to be here. Not somewhere else.

You are the expert In showing me how to live my own life. You have shown me that I do not have to carry the weight of entitlement for it is a false prophet. I have not given anything up, lost anything, been robbed or have need to mourn. None of it was mine to own in the first place.

With your extra chromosome – oh what a gift I have been given! Undeserved. Not entitled. 

Gifted. 

There was never any need for grief when you were born. Or any other weight placed on you or me since, for that matter. Your very being tips the scales of what is deserving and honourable. It turns the wisdom of the wise upside down. Weightlessly so.


Deep down, I know this to be true.


2 Comments

Barefoot

Image by Pezibear from Pixabay

Dear World Down Syndrome Day Supporter….

Thank you for wearing odd socks in my honour.

They’re a talking point, colourful, and fun to see.
I’m just not too sure they are really about me.

Rename them ‘lots of socks’ if you prefer, instead of calling them odd.
The thing is, I’m neither odd nor plural. There is only one of me.

Ah but socks look like Chromosomes you’re keen to explain.

Yes they do, so true, yet you also have those. Minus one of course, but otherwise you’re just the same .

You, me.

Both should rhyme with humanity.

Oh please don’t feel got at…I’ve worn mine too!
I’m always up for some fun, often much more than you!

Socks.

It’s just you gave me some last year, and the year before that.

And I’ve noticed a pattern forming. A habit; one that leaves me a bit flat.

These socks keep coming, year after year.
That’s nice… but there are other things I’d very much prefer.

When I’m older, I might like a job; will you help me find suitable employment?
Or invite me to your parties, welcome me, enhance my enjoyment?

Include me at your meetings, give me a seat at the table.
See me as your equal and perfectly able
to contribute to the conversation in whatever way I can. Whatever the subject may be, especially, no –always – if the subject is me.

Support research into my health so I can live well, like you. Stand up for my rights, remove all taboo.

Help me learn new skills, give me roles to fulfill. I’m very keen to be active and not forced to sit still.

Just imagine – with nothing to do, your days spent at home; you’d get bored very quickly and feel quite alone.

Don’t stay silent when others say my life has no worth.
Their influence is strong; complicit in deciding the fate of others like me, well before birth.

Champion me, not only with socks, but with all you can muster.
Stand up for me, defend me, be a myth buster.

Give those who will love me all the help they may need
To nurture me, teach me, help me succeed.

Don’t abandon them or leave them – at times -feeling so alone.
Give them all the support you are able; help set the tone.

So wear the socks if you like; the bright colours I love and am happy to see.
So long as you then take them off and walk barefoot with me.

Gratefully yours,

Hazel x

The DSRF are the UK’s only Down’ Syndrome Research Charity. Their vision is a long, healthy, happy life for people with Down’s syndrome (DS) and their families. The Foundation is a charity born out of a parent’s love and a passion for the very best evidence-based interventions. You can donate to their work if you wish here.