Downright Joy

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

Tag Archives: #caring


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Bucket List

Photo by Phil Hearing on Unsplash

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.

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Birthdays

Image by M W from Pixabay

You love a birthday, you.

No matter whose it is. 

Candles lit, you know what follows;

A song, golden flickering flames that vanish on a

cake that others will swallow.

You love a celebration, you.

No matter what the festival.

Be it Christmas, Easter, or any other occasion,

you were born to share in another’s joy

Amplified by your elation.

You do not ask for anything, you.

Nor do you come to me with a list,

Though I would fulfill it in a heartbeat if you had.

You desire not to possess the latest fashion,

So why does this still make me sad?

You do not know tomorrow is your birthday, you.

Anticipation comes at the moment you see

Not the presents, they cannot hold your attention.

But the cards, the candles, the faces that sing

Happy Birthday to You in joyous affirmation.

You won’t know it’s your birthday when I’m no longer here

to tell you the moment you open your eyes.

If you have not anticipated your special day then there can be no pain

Or disappointment when no cards arrive, nor the candles

 that I’d light for you again and again.

You don’t know how much you are loved, you.

Or how my fears simply cannot come to pass.

You are surrounded by those who love you as their own.

You were never mine to keep, your gift is to so many

And I know you will never spend your birthday alone.

Happy Birthday Hazel x


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Two’s Company

Image by Silvia from Pixabay

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.

Walk with us.

#Downsyndrome


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Lost and Found

Image by Peggy und Marco Lachmann-Anke from Pixabay

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.


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Fractured

We’ve been here before, you and I.

The Waiting Room.

Different posters adorn the walls. Antenatal Word Clouds long since replaced by Musculoskeletal Murals.

And the patients. They are different too. No longer anxiously stroking an unknown bump, nervously avoiding eye contact with others in The Waiting Room as they await their scans. These patients rest their hands on crutches. Or support their sling encased arms with a gentle hand. Waiting for their turn, for their particular trauma to be addressed. To be healed.

They smile at you. They can’t help it. You make people smile. In your pink wheelchair, with your pink hair bows. If they feel pity for you, it soon turns to joy.

You do that to people; I’ve noticed.

Which is good, because right now my stomach is churning. My heart is racing. You see, we’ve been in The Waiting Room before, you and I. And I did not expect to be here again.

That Department has moved, the receptionist said, noting my confusion. Go through those double doors and you’ll find it.

And so we sit here again, some ten years since the last time.

In The Waiting Room.

Your name is called out. You have a name. Everyone here has a name. Of course they do. It’s how the staff know who they are dealing with. It’s how they know who is next on their list to be cared for.

Last time you were here you did not have a name. Last time you were here you quickly became an it to those who spoke of you. Including me. Last time you were here you were not known.

I wonder, if I had given you your name when we last were here, if that would have made a difference?

They said they could deal with it last time you were here. When they found out you might have an extra chromosome.

Imagine if I’d told them your name. Imagine if I’d had the courage of my convictions to have named you YOU back then. I wish I had, but I admit… I was scared. I did not know you either.

Now we sit in that room and I wonder if it’s the same chair. The trolley bed is in the same position. It’s the same room I sat in over two years before you were even born, weeks after nearly losing my life and that of your unborn sister. A room that holds so much trauma for me and, presumably, countless others.

The doctor kneels at your feet. You look down at him from your wheelchair, smiling. Laughing.

He gently wraps bandages around your badly damaged ankles and feet. He speaks tenderly to you, telling you what he is doing. Casting moulds for the support you so desperately need. He says you can have colourful casts if you like. He calls you Sweetie. He also calls you by your name. He honours you. He knows you.

This is not the first time he has treated you. Nor will it be the last. He wants only to make your life better. He knows what you need. He knows because he has met you. He knows because he has cared for many people like you before.

He knows you.

Last time you were here a doctor stood over you, whilst I patted you nervously, clutching your photograph. Many photographs were being handed out to people that day and everyday. You looked a bit like a kidney bean…. I’ve kept it, you can see it one day if you like.

You would not remember. He stood over me, over us. Kindly, gently, yet devastatingly, his words brought trauma to us both. And, moments later in the room opposite which I can see from where we now sit, another kindly professional spoke trauma over us both and even death over you. I carried you, like all the other patients in The Waiting Room that day. I also carried the leaflet they handed me, that told me what they thought I might like to do – about you.

I have no ill feelings towards them now; sitting here.  Those feelings have unexpectedly gone; I don’t need to hold onto them anymore.

Instead, I carry a sadness that the Doctors back then did not know what the Doctor who now kneels before you knows. I carry a sadness for every woman, every parent, who has sat anxiously in these rooms and experienced trauma; whatever decision they made, however they made it and whatever their outcome. So much fear, often but not always, of the unknown.

Fear causes stress and stress fractures.

Yet in this unexpected moment, my sadness is replaced by thankfulness. Fractures fuse as the healing process begins.

I am thankful for this room, for these other patients, for this Doctor who knows…who knows you. I am thankful that we have come to The Trauma Clinic today for it is a place not only of healing but of redemption.


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Merry Go Round

Half way up the stairs.

We made it half way up the stairs. She is on her stairlift. I am holding down the control button.

The alarm is, well, alarming. It’s shrieking….. I’m no longer green. I’m red I’m red I’m red. And this is as far as I can go today.

I disagree with alarmist opinions, I always have.

Yesterday you were green. They said you were fixed. They said they couldn’t see anything majorly wrong. They looked, they tweaked, they said they did their best yesterday and indeed you were green. They hoped their remedy was permanent. 

So did I; the cost is mounting and climbing higher than any stairlift could ever go.

Red, green, red, green, red, green

You, me, me, you. Today we both turned red.

I brace myself to lift her down from her predicament. Praying we do not topple. And I did actually pray.

Is this what it feels like to be rescued from a fairground ride? Stranded in mid-air whilst all around go about their business down below, busy on adventures of their own. A whole community, just down there. Out of reach.

We are high up. Hoping for help, though it does not come. Praying. Feeling very small, very alone. At least one of us is. The other not so. She has always loved fairgrounds. The lights, the colour, the spectacle, the drama. She is laughing right now. Unconcerned. All the fun of the fair is in her eyes as it always is. This is what blessing looks like.

Oh I too love the funfair, don’t get me wrong. It’s true I’m not all that keen on the Helter Skelter or those swingy things that send you hurtling through the skies at breakneck speed. And the Dodgems – well they are just plain dangerous if you ask me. But find me the Hook a Duck stand to try my luck with, or a colourful Carousel with painted horses and I’ll happily hop on and go round all day.

A fairground is a place where screams are many yet, no one hears them. They are not required to. Laughter, joy, screaming, fear, exhilaration, merge into one, giant, merry-go-round. Pleasure and pain. Pain and pleasure. Pleading to get off then getting back on for more. Fearful moments soon overcome by joyous ones, then replaced by fear….and so it goes on.

We are downstairs again, yet we need to be upstairs. She needs to sleep so we cannot stay here. Now there’s another obstacle in our way. It’s the same but different. Still alarming, still flashing and now IN OUR WAY. Reminding us of the journey we now face. A perilous one. An uphill struggle; each of my steps must now be carefully and very slowly taken for fear of us both tumbling down the stairs. The chair is not moving, no matter how hard I plead with it to work. Please just work. I scream a scream that no one hears. Not even her, thankfully. Only one of us feels the fear on this particular ride. The other knows only love and trust. This is what blessing looks like.

One day I will laugh at this too, just not today.

One day the plan will come together. A crowd will gather around us. Tradesmen and women will set to work to help her; and to help me. The stairlift will no longer be required to transport her to sleep each night. She will sleep downstairs, safe and sound in a new environment that can truly meet her needs. One with new rides to experience, buttons to press, levers to pull, hoists to take her into orbit. We will laugh with great gusto at ourselves in front of distorted fairground mirrors, knowing that our true self remains intact. Dignity will be restored. Hers and mine. This is also what blessing looks like.

Just not today.

Tonight we will dream of carousels and candy floss and all that this fairground means to us; we are certain we do not ever wish to leave.


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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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Herons and Cranes

miguel-pinto-VhaZJ_7YW9o-unsplash

I’ve been spending a few days in a relaxing and isolated place, booked pre-pandemic, overlooking some fishing lakes. As I write I can see three, sometimes four, herons gliding gracefully over head. Such extraordinary looking creatures in flight. And, once on the bank they adopt sentry status, scanning the lake for fish whilst giving a masterclass in superiority. Until they call out that is. A sound akin to finger nails on a blackboard. Beautifully harsh. Something about it grates and leaves the listener uncomfortable. It jars. Profound beauty and harshness held in tension. The herons take flight and with them my breath.

My daughter’s life, her whole existence, is profoundly beautiful yet also harsh. We live, she lives, with the tension of these truths. And, as a consequence, she takes my breath away daily.

Many, even sometimes those in our own community, see the disabled life as something to be avoided. I know I did when Hazel was born. I’ve written about it before..how I hoped she would have some kind of Down syndrome light version of the condition. Not too bad, manageable, successful even. There are no limits on people with Down syndrome is how the new mantra goes. They can learn to read and write, go to school, get a job, play sports, live independently, be models, actors, politicians, get married and so on.. All true and all good, I don’t deny it for a moment. They often do.

So don’t worry, we tell new and expectant parents; It’s only an extra chromosome. Keep calm.

I disagree.
It is not only an extra chromosome.
It is a profoundly beautiful life.

Not because of any achievement or indeed any similarity to a life without an extra chromosome. It’s beauty is in its existence. It should not need to be championed or given a reason to be accepted. It is already beautiful, profoundly so.

My attempts, early on in Hazel’s life, to disguise her ‘disabledness’ (which probably isn’t even a word) thankfully and spectacularly failed. Hazel comes with an array of visual reminders of it; a feeding tube for starters, then there’s the equipment, hoists, stairlift, adaptive chair, a hospital style bed, not forgetting bifocals for very poor sight and also soon to have hearing aids. Hazel is non verbal and makes all kinds of noises that loudly announce her presence to the world wherever we are. There is no disguising Hazel! Oh, and she laughs. A lot.

Hazel has also been learning to walk. At almost 9 years old she can now walk around the house or familiar places with gusto. Stomping and lurching as she explores familiar spaces now revealing previously hidden vistas and treasures. Her achievements are tremendous and we celebrate them daily.

And yet. Remove her plastic clunky orthotic devices and her world shrinks once more, her weakened frail ankles collapse and she falls to her knees in a single step. Those unattractive plastic devices are, to me, of profound beauty and huge importance. They are enabling her to discover new and exciting things for herself, though her wheelchair is never far away.

Wheelchairs. Feared and avoided by many parents of children with Down’s syndrome, particularly in the early years. I know this..I was one of them. So much so I opted for a buggy that looked somehow more er, um… acceptable. I thought that having a wheelchair made her look more disabled. Well. Yes I suppose it does. But that is only a negative if you also hold the view that being disabled is something to be shunned. It depends on your assumptions about disability. My assumptions were so very wrong. I mean, it’s fine if you don’t need one, but it’s also fine if you do.

Is Hazel worse off because she uses a wheelchair? Is she worse off because she wears orthotics? Or is she discovering joy every single day in new places because she has them? Is she to be pitied because she is shortly to be wearing hearing aids or will people share her joy as the sounds we take for granted enter her world for the first time? And if they don’t work, if she doesn’t take to them for whatever reason, will that be seen as failure or will she be allowed to live her life in the way she feels most comfortable?

To me, her disabilities just make me more determined to travel further into her world and see it though her eyes and ears. I desire to make her pathways less fraught with obstacles and trip hazards. Where those obstacles cannot be removed I want to help her find another way over the terrain. This is what Hazel needs from our community, from those who care for her, from medical professionals, teachers, and especially Governments. Policies, medical research, social and educational opportunities that will enable her to really live her best life; whatever support systems she needs or we may need as parents to help her. What she does not need are assumptions that her life is not worth living. That she is failing or in need of pity because she looks more disabled than another. That her life is less. Neither do we need assumptions that, as her parents, we can do it all, that we don’t need a helping hand from time to time. Caring is a very precious and undervalued thing indeed. Assumptions can be devastating, checking them and challenging them can bring change to entire communities.

A friend of mine often says to diminish one of us is to diminish us all.

Just this week I was reminded of the heart-rending story of a disabled community in Japan- the Sagimahara Institute – where, on 26 July 2016, a man attacked and killed nineteen residents and injured twenty six; thirteen of them severely. His intention was to ‘obliterate’ hundreds of people who he deemed unworthy of life. A drain on their carers.  He believed he was doing society a service.  The tragedy became Japan’s worst mass killing since the Second World War.
An extraordinary video called Sachiko’s Story Nineteen Paper Cranes tells the story so movingly and asks the question,
“Why does the world assume that a disabled life is not profoundly beautiful?”
I will not spoil the story – do watch, you’ll be glad you did – but what followed in response to the killings was truly beautiful.

Landscapes can be harsh environments to live in and journey through but at the same time profoundly beautiful. We need to adapt to their contours, their peaks and their valleys. Not circumvent them or leave them off the map. Or, worse still, destroy them altogether.

This is my daughter’s disabled life and it will always be profoundly beautiful.

#dontscreenusout


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Show me your face

Hiding face

Show me your face and I will show you mine.

Confession time.

When my daughter was born with Down’s syndrome, I am ashamed to admit that, at first, I wanted to hide her away. I tried to dress her in a way that people wouldn’t notice certain features pertaining to her condition; her slightly thickened neck for instance. A well placed chunky knit cardigan dealt with that! As we struggled to come to terms with her diagnosis, though we loved her with every fibre of our beings, my husband and I spoke privately of a hope that she would have some sort of ‘Down’s syndrome light’ variety. A not too noticeable version of the condition that would be acceptable to others and also, it has to be said, to us. As for thinking about other people, especially older people with the condition, this was not something we wanted to contemplate. In our eyes, they were to be avoided. Feared even. In fact, looking at anyone else with the condition was hard to do back then, though I did try to notice the ones I deemed acceptable – just about. All in the hope that my child would be like them.  Not too bad.

Our eyes were focused, not on our child, but on our prejudice.

Eight years later and laser surgery has removed that prejudice and cleared our vision. Thankfully. Or was it heart surgery? Either way it is gone.

This week, a film made about a man with Down’s syndrome, Jamie and his brother and family, appeared on social media. Radio 4 even did a feature on it. You can watch it here if you like. There was quite a reaction to it in our community. Some, like me, loved it, others including people whose lives I hugely respect, didn’t. Among other important things, they worried about how Down’s syndrome was portrayed in the film, especially to new parents or parents to be who might see it. It was absolutely not their experience and it appeared outdated, a backward step even. Some found it sad.

As the dust has settled I can see why they felt like that. I just don’t agree.

A wise person said to me that the film was like a mirror. Reflecting back so much of our own fears and, I think, our hopes too. Well I’ve been reflecting in that mirror since I saw the film and my wise friend is correct.

I’ve spent the last seven or eight years telling people, sometimes through my blog but in other ways too, that there’s nothing to be afraid of in having a child with Down’s syndrome. I’ve told them about all the things children and adults with Down’s syndrome can do now, achieve, be, aspire to; compared to in the past. And this remains all true and valid. I love how our community celebrates this change in all kinds of ways as more and more is understood about the capabilities and learning potential of people with Down’s syndrome. I hope we never stop making this known where it needs to be known. But it is not the whole picture.

So here’s my next confession…

Through my writing, I’ve told people these things, which I wholeheartedly believe and support, against the backdrop of knowing that my daughter is not like most children with Down’s syndrome. At least not most of the ones I know. She is more like Jamie. She sits how Jamie sits. She sounds how Jamie sounds. She has fewer words than Jamie has, yet she was not born forty years ago in some dark, uneducated era where early intervention for people with Down’s syndrome was largely unheard of.

No. She was born just over eight years ago in 2011.  She’s had far more support and intervention in her young life than Jamie would have had in his – at least outside of his loving family – oh I loved them in the film too! Their faults, their failings but mostly their love for Jamie and each other shone through.

Could we be doing more to help her development? Always. Is she still failed by healthcare systems and Government policies towards disabled people? Yes, frequently so. But that’s not the point here.

What’s true is that she is more like Jamie than most other children I have so far met who have Down’s syndrome. That is not to diminish them or their families in any way; I hope I no-one feels that’s the case for it’s not my intention. It is simply that our experience is one that is far closer to that of Jamie’s family. His face, his life, his behaviours and reactions we recognise in our own daughter. His family in ours. Even in the words they used to speak to or about him. And our lives are not some tragedy to be hidden from view.

Unconventional? Certainly. Challenging? Definitely. More so than I have ever admitted in my writing and that, with hindsight, has perhaps not always been helpful.  Even as I write, we should be elsewhere, joining in with an event that most people have no problem attending, even most of those with a child with Down’s syndrome. We are not most people.

Neither are we always looking for lots of inclusive activities to take her to. Though it’s sad there are not more. Because more often than not, even the inclusive ones are unsuitable for her. That will only change when her ‘face’ becomes an acceptable ‘face’, a face that is accepted as it is now, with all its funny ways and behaviours, noises and responses. It will change when her way of communication, as it is now, not as it might or could be, is accepted and welcomed, if not always understood, by everyone, not just a few people. Some call it her level of communication but that, to me implies critique. What I want most is for her always to be accepted, welcomed and wanted as she is. Not because of any intervention or achievement that might somehow make her a more positive advert for her community, however helpful it may be to her or anyone else. I think most parents want that too.

Hazel brings something different to our family. I saw it in Jamie’s family too. She brings people together, to surround her and each other. She brings a kind of healing, she brings mystery. She brings dependency.

Ah, but we need our children to grow up to be independent don’t we? That is, after all, one of the aims of most parents – to help their child grow up to be fully independent and make their own way in the world.

And yet Hazel has taught me to prefer the idea of a society where we grow more dependent on each other, not less.

The reality is far from that though and I think it’s one of the reasons people reacted with concern to the film. I get that.

I don’t think it’s wrong to hope and strive for a society where dependence on each other is highly valued. If our society was like that, then many of the fears that keep parents of children/adults with Down’s syndrome or other disabilities awake at night would not exist. We could be confident that our loved ones are going to be valued, cared and wanted for who they are, regardless of their level of dependency and regardless of whether we are here to care for them or not.

A mirror should always reflect the truth and perhaps I am guilty of distorting the image of our lives in order to gain the acceptance of parents who might be considering terminating the life of their unborn baby, following a diagnosis of Down’s syndrome. Yet the truth still is that all people with Down’s syndrome, whether they are like Hazel, Jamie or whoever, have beautiful faces and can live beautiful lives, whatever their challenges. Their stories, our stories, all deserve to be told and it is a privilege to be part of a community that is dependent on each other.

Let’s not hide any one of us away.

Adam Pearson A British Actor and Campaigner and who is also diagnosed with a genetic condition said recently “The way to eliminate any kind of misconception or prejudice is to increase the exposure”

Show me your face and I will show you mine.

“Fear makes strangers of people who would be friends.” Shirley Maclaine

H in Mirror WM

 


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Consider the Tortoise

Pets.

I’m not a fan of them, as those who know me well will testify.

Brief forays into rabbit or guinea pig ownership as a child were enough to convince me that pets were not for me. A fear of dogs from an early age led to a general avoidance of all things four legged, furry or winged.

They’re just saying hello are words that, quite frankly, make me cross. Leave me alone. I won’t annoy you, so please don’t annoy me…. has generally been my motto around other people’s beloved pets, with one or two exceptions.

But I am fascinated by the adoration and reverence afforded to our nations pet animals. Cats, dogs, hamsters, rabbits, guinea pigs, stick insects and the like.

Why? Why do people go to so much expense, time and effort for these creatures? Surely their life would be easier without them? Just think of the vets bills. And what about the commitment? The lack of freedom when you’ve always got to find someone to feed the fish or put the cat out when you are away? Or the expense of a cattery or kennels or as is most fashionable these days a pet/ house sitter. And then there’s the poo. I’ll stop there.

I don’t get it. But I do accept it.

I have no right to criticise people who are pet owners. They know the costs but they think more of the humanity of owning a pet. The benefits. The joys. All that owning that pet will bring to their lives and the life of their pet. They are not selfish people.

They get it, I don’t.

I do, however, get the desire to care for, love, receive and give affection to another. The humanity of caring, nurturing, treasuring and enjoying another being.

Consider the humble tortoise.

Once freely available and cruelly imported to this country before the law was tightened and permits for keeping them were introduced.  For humane reasons.

Tortoises make great pets according to some. They sleep for months on end, don’t need to be taken for a walk and children adore them. Oh and they happen to live for decades. They may even outlive their owners! A fact that clearly hasn’t put off the increasing number of people who now keep tortoises as pets.

According to a recent article in The Telegraph, we as a nation (UK) spent a whopping £6 billion on our pets last year. Heartless animal avoiders like me might argue that this money would better spent elsewhere. On the NHS, for example, or in our schools.

But whilst I may not understand the nation’s pet obsession, I will not criticise it. Nor will I say that this is a cost than can be avoided…“if only pet owners would stop being so selfish and think how better that money could be spent.“

Yet…. these are attitudes that families of people with Down’s syndrome come across frequently, especially in the media. Worse still, expectant parents are faced with an ever increasing pressure for their unborn to be screened for the condition with the rolling out of a new pre natal screening test – known as NIPT. (Non Invasive Prenatal Test).

Why?

It’s so expensive to care for a child with Down’s syndrome.

They are a burden on society.

Well, who’s going to care for them when you’re too old?

They will outlive you. How do you feel about that?

Society is better off without them.

It’s selfish to knowingly bring a child with the condition into the world.

It’s not fair on the siblings.

Your relationship will suffer.

These are, shockingly, all real opinions that have been put to families like mine all too frequently. Not only to us but also to parents who, after hearing them from various sources, decide they can’t go through with a pregnancy that has been declared defective by the detection of an extra chromosome.

My question is this. If, as a nation we can pride ourselves on our passion for pets and place high value on their humane treatment and care – however long they live, why can’t we do that for people like Hazel? For those yet to be born?

Consider the humble tortoise. Mistreated and now, thankfully, protected. Cherished even.

Why, if we consider ourselves a humane society, is protection seemingly too much to ask for those with an extra chromosome? We appear to have forgotten the definition of this powerful six letter word.

humane
hjʊˈmeɪn/
adjective
  1. 1.
    having or showing compassion or benevolence.
    “regulations ensuring the humane treatment of animals”
    synonyms: compassionate, kind, kindly, kind-hearted, considerate, understanding, sympathetic, tolerant, civilized, good, good-natured, gentle;

    lenient, forbearing, forgiving, merciful, mild, tender, clement, benign, humanitarian, benevolent, charitable, generous, magnanimous;
    approachable, accessible;
    rarebenignant
    “regulations ensuring the humane treatment of animals”