Downright Joy

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

Tag Archives: #Trisomy21


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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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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.


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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.


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By rights

Girl drawing in sand

By rights my child should be talking by now. She’s 8 years old you see.

By rights she should be running around; climbing, jumping, falling and scraping her knee.

By rights these are skills that are just delayed.

She’ll get there in her own time, don’t fret.

Her extra chromosome is championed by those of us in the know.  Though I think even we get it wrong by the examples we hold up for inspiration:

Actors, dancers, TV stars, athletes, some are even politicians. Look how much these people with their extra chromosome are contributing!

As if they need a reason to be here.

Nothing to fear they tell me; she’ll make her own way in this world like them.

By rights.

By rights my child shouldn’t even be here. Such is the overwhelming view of the world to people like her.

By rights I could have deleted her life. I should have done so, according to some and by rights for which others have fought.

My choice? My right not to do that?

Of course! But you’re on your own.

Stop. Let’s go back to the beginning, where it all seems to go so wrong.

So very wrong and not at all about rights.

 

My child’s very existence is a cry to be loved.

She is not to be measured on a scale.

Scales of achievement that judge her, proclaiming her worth in how much she can bring to the table.

By rights she may never measure up to societal scrutiny, or even that of her own community. Who knows when or if she will talk or run?

Truthfully, she is not here by rights – for society says she has none.

She is here by love.

It is love she is attracted to. Not achieving or being the best. She has no desire to acquire more knowledge or power or fame, or the rest.

She has a desire, a need to be loved. Let’s face it, don’t we all?

She is not here by rights, she is here as a gift.

A priceless gift of discovering that to love is not always easy, but is of greater value than anything else.

 

Tell me…. what gift was ever a right?

 

“Every child, every person needs to know that they are a source of joy; every child, every person, needs to be celebrated. Only when all of our weaknesses are accepted as part of our humanity can our negative, broken self-images be transformed.”
― Jean Vanier, Becoming Human

 


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Funny that.

Laughing boy

Did you wake up laughing today?

My daughter did, just like she did yesterday and the day before that, and the day before that too.

Did someone tell her a joke? There’s no one else in her room. Did she remember something funny she saw the day before? Perhaps. Not sure.

Maybe she was thinking about the bus journey to school and how bumpy it feels as she rides, strapped into her wheelchair. Or maybe she was thinking about the funny songs the Music Man sang to her when he came to her class; especially that one about the pirates- that’s funny. Or maybe it was the sheep on the farm she visits, or the goat that jumped on the trampoline with her one day. Whoever heard of such a thing?! Maybe it’s the strange plaster casts on both her legs that she currently has to wear. They do look kind of funny I suppose.

It’s no good asking her, she cannot give an answer. Though she is nearly eight years old, she has no words you see. And right now, only laughter.

Sometimes she is sad. Sometimes she is grumpy. Sometimes she is in pain. Sometimes she is tired.

Just like you, just like me.

A range of emotions.

But because she is non verbal she has to express them differently.

Unlike you, unlike me.

But laughter, chuckling, giggling, rib tickling, snort inducing, full on raucous belly laughter is very often her first emotion of the day.  I’d love to know what makes her laugh.

Did you wake up laughing today? Or did your thoughts turn immediately to worries?

Fears of the future perhaps, or just concerns about the day ahead. So much to do, so much to accomplish. What ifs and what abouts firing off in all directions in your head before your feet have even hit the floor.

My daughter woke up laughing.

My daughter has Down’s syndrome. Many people think her life is not worth living. They think she would be better off not being born. They called her life a ‘risk’. They said she is abnormal. They spoke as if giving birth to her was some great tragedy.

Funny that.

 

 


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Tango

I read a remarkable story recently that a friend shared with me, about a group of dancers in Buenos Aires who were learning to dance the tango. Nothing unusual there; the tango being synonymous with Argentina of course. These dancers, however, took far longer than most to learn such an exotic and complicated dance; up to ten years as opposed to a more usual single year. These dancers had Down’s syndrome.  A remarkable story of determination, patience and perseverance that led some of those dancers (or artists as their instructor rightly prefers to call them) performing to audiences across Argentina and literally moving them to tears.

Yet it was not their achievements that stood out for me, remarkable though they were. No. It seems there was another reason why it took so much longer for the group to learn the intricacies of the dance compared to most. A reason that had nothing to do with any physical limitation or impairment.

Simply, whenever the music stopped the dancers would seize the opportunity to move around each other, chatting, hugging and generally socialising with one another. So much so their instructors had quite a job refocusing them on the task in hand!

And that got me thinking.

How wonderful. How utterly refreshing and uplifting.

A group of people who love to communicate. With each other.

Learning the dance was important, very much so. But the friendships, the connections that were there to be made more so I imagine.

It is said that people with Down’s syndrome have difficulty communicating. Their speech maybe impaired or delayed or even non-existent perhaps.

Parents, educators, medical professionals all agree that Speech and Language provision is vital for a person with Down’s syndrome. And of course, it is. I don’t deny that for a moment.

And yet.

The more people I meet with Down’s syndrome, the more I am convinced that they are better communicators than the rest of us put together. They are not often constrained by convention or etiquette or old fashioned British stiff upper lip. They rarely look at the clock and feel pressured by time. They are free to be themselves. So they are.

I just don’t have the time is a phrase you will rarely hear from a person with Down’s syndrome. Yet it’s a phrase that many of us can be heard saying on a daily basis.

I need some ‘me time’ is another; in a world where we fight to carve out time for relaxation. So many of us under stress to breaking point.

Is it ‘me time’ that we really need? Is it more time even? Or is it that we no longer make time for one another.

Perhaps we would do well to look at the lives of the very people society has so often shunned; people with Down’s syndrome. To look at people deemed to have communication difficulties and learn from them. Allow them to teach us, not the other way round. Allow them to show us how to come together in the midst of what we strive for and listen to each other, talk with each other, make time for each other.  Show us how to truly communicate with each other through whatever means we have.

However long it takes.


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Truth be told…

Words people said when my first baby was born:

Congratulations!

She’s beautiful

She’s got your eyes

So cute

Adorable

Aaaahhhh

So happy for you

So many wonderful adventures ahead of you

Welcome to the world little one

So many words, so many cliches. So many ways to express joy. 

Sshhh! Not too loud, you’ll wake the baby!

Precisely what I needed to hear, truth be told.

Just what the doctor ordered.

 

Words people said when my second baby was born:

I’m so sorry

 

So few words. Eyes averted. Hushed conversations. So many ways to express sorrow. Shhh! Careful what you say, you might upset the mother. 

Just what the doctor ordered.

But his prescription is long since out of date.

No one said congratulations when I had a baby with Down’s syndrome. 

I blame no one; I carried my own prejudices, I reflected the mood around me, to an extent I permitted it.

Yet ‘Congratulations, she is beautiful’ was precisely what I needed to hear.

 

So to any mother who today cradles a new born baby in their arms, or sits anxiously next to their incubator in a NICU; a baby that has been born with an extra chromosome…..I pray someone will hold your hand, stare with wonder into the eyes of your precious child and tell you the truth of it:

Congratulations! Your baby is beautiful! Welcome to the world little one.

Today, on World Down Syndrome Day,  I will celebrate every single glorious life, born and unborn, with an extra chromosome.

Each one profoundly beautiful.

Truth be told.


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Epiphany

I am a treasure seeker.

I love to be surrounded by beautiful things. Not necessarily expensive things – though I like them too. Just beautiful things. Recent treasures I’ve acquired are hanging in my redecorated living room; a picture of a woman gazing out of a window, a bird cage on the table behind her. Anything with a bird cage in it is beautiful to me, there’s something deeply enchanting about them. Then there’s my framed Frida Kahlo staring strikingly out from the chimney breast. These are my latest beautiful things.

My children love treasure seeking too. Over the years my eldest has kept an assortment of valued bits and pieces she has found or been given. A diverse and eclectic mix of fascinations. Conkers happily collected on the way home from school one day, actual fairy dust in a tiny bottle, confetti from a family wedding, bits of paper from friends with “bff” scrawled on them in childish form, usually under a hand drawn princess or something fluffy and adorable.

I remember the time, as a toddler, she literally held onto one particular treasure for days. Ignoring the vast array of toys she had successfully acquired my daughter chose, as her most favoured possession, an empty margarine tub. She carried the margarine tub with her wherever she went and at all times. Her limited language skills at that point meant I never found out why the tub found such favour in her eyes. Its worth was not apparent to me, to begin with, but her love for it was. The margarine tub became important to us all.

Her younger sister also finds treasures of her own. A discarded ribbon from an unwrapped gift will please her often more than the gift itself. A chiffon scarf that can be floated in the air will delight her if she discovers one lying around. And as for autumn leaves cascading down around her on a windy day; well that’s her idea of heaven. Heart singing moments for her and for those who care for her.

Treasure for the soul. Like balm.

Where your treasure is, there will your heart be also….a biblical truth which, whether you have a faith or not is hard to deny.

Most recently, my eldest acquired a new and precious treasure which she now keeps in a glass jar.  A fragment of Myrrh, another kind of balm, given to her as an Epiphany reminder by a man who has spent his life treasure hunting in the Middle East. Canon Andrew White, often referred to as the Vicar of Baghdad; a man who continually seeks out the good in those often vehemently opposed to each other, to bring reconciliation and facilitate peace where only conflict exists. A man who knows where real treasure is to be found. Found among people the world often dismisses, often fears, and often shuns.

My wealth has increased beyond measure since my daughter was born with an extra chromosome seven years ago. My Epiphany.

Hazel has Down’s syndrome. A condition, a group of people, so easily disregarded, yet who, before they are even born, are sought out more aggressively than ever through modern screening methods. Feared and shunned by a society that cannot see the treasure that is within.

Society…they are the ones whose pockets are empty. They have not found this treasure.

My pockets are full and so is my heart.

hazel with grass

#dontscreenusout


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The Gift

My Gift did not come wrapped in shiny paper, nor tied with a velvet bow.

My Gift was unexpected, it caught me completely off guard.

I struggled to see that this Gift was for me;

Gifts are not meant to be hard.

 

My Gift came with a label or two; one said “extra chromosome”,

The other read “handle with care”.

The second; I tore off and tied to my wrist.

The first, I hid, too afraid others would stare.

 

All around me other Gifts were being delivered,

Amongst fanfares, banners, balloons and flowers.

My Gift came amid hushed tones and frowns, with questions, fears and tears.

Concerns that had not crossed anyone’s mind at earlier baby showers.

 

How could I look after this Gift? There must be a mistake.

Surely this Gift was not intended for me; it was never in the plan.

And yet, in my Gift I saw a reflection of me so clearly staring back;

Azure blue almond shaped eyes, oh those beautiful almond shaped eyes!

 

My Gift. My Gift is, without question,

The best present I’ve ever been given.

Granted, it took me a while to appreciate; I wish I’d realised before.

My Gift has a beauty beyond understanding, my Gift is easy to adore.

 

My Gift keeps on giving and giving.

Occasionally it might be in sorrow; far more likely I find, it’s in joy!

My Gift is priceless, its worth cannot be measured.

If your Gift is labelled the same as mine, it’s a Gift you will learn to treasure.

Hazel Morley (Neonatal Intensive Care, Bristol) 300911 016

For more real life experiences from families of people with Down’s syndrome check out

www.positiveaboutdownsyndrome.co.uk

Find out more about Down’s syndrome from

Down’s Syndrome Research Foundation UK

 


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Wait for me

Wait for me…

I’ve never been very good at waiting. As a child, if you gave me a Christmas or birthday present before the big day, I’d be itching to know what was inside. Prodding and poking it until I’d eventually worked out exactly what was concealed. I couldn’t wait.

It was the same when pregnant with both my children. Boy or girl, I wanted to know. I didn’t need to know, I just wanted to. For no other reason than my curiosity got the better of me. I admire couples who choose not to know the gender of their unborn baby. They have a level of self-control that evades me totally.

But having had two children, both with additional needs, I have had to learn, really learn what it is to wait.

“Wait for me” is a phrase often heard in our family. My eldest child M, recently formally diagnosed with another condition – Dyspraxia (DCD), uses this phrase the most. With good reason.

You see, for her, a simple walk with family or friends means twice the effort.

What most of us able bodied do with relative ease is more challenging for her. It’s easy to overlook the work she has to put in to keep up the pace.

So she reminds us.

Wait for me.

Her friends and peers are supportive, but sometimes they, quite understandably and naturally forget; running on ahead in their excitement. Leaving her behind.

Wait for me.

Just the other weekend, we found ourselves staying in the beautiful Welsh/English border countryside with friends.

Outdoors obviously called for some exploration.  Not the easiest of terrain for anyone with mobility issues! So, to see her very close (and particularly agile) friend hold back and help her negotiate a steep grassy slope, hand in hand, made my heart sing.

The friend waited.

She didn’t have to of course. No one would have blamed her for running on ahead, doing exactly what children do.

The friend valued my daughter and was prepared to put her own agenda to one side.

Valuing each other is something increasingly missing in our society. Really valuing each other I mean.

Putting the other person ahead of ourselves. Seeing their worth and valuing them for who they are, however different they may appear. Going at their pace, looking for ways to help them move forward; however much that may slow us down. Not leaving them isolated or abandoned.

The friend made a choice to value. That choice made all the difference; to my daughter, and to me.

Nearly seven years ago, when doctors told me my unborn baby might have Down’s syndrome or another  condition, I chose to wait. I chose not to have invasive tests that would tell me for certain if that was the case. It wasn’t easy to wait. I won’t lie – part of the reason for not wanting to know was that I was in denial about even the possibility of having a child with Down’s syndrome. Part of me hoped that it was all a mistake and everything would be “fine” in the end.

Wait for me.

Hazel, my youngest, is now six and a half years old. She loves life and most of all she loves and values people. People like you and me.  People.

I waited for her.

She arrived and our lives were undoubtedly turned upside for a while.

She patiently waited for me to come to terms with her extra chromosome.

I am eternally glad I waited for her.

Waiting for her has taught me more than anything about the priceless value of human lives. … hers, mine, yours, theirs.

I hope that women really do get a choice when it comes to the new prenatal screening tests (NIPT) being introduced across the NHS. I hope that choice actively includes supporting women choosing NOT to screen if they really don’t want to. Supporting them instead to wait. Supporting their choice, instead of pressuring them to ‘choose’ termination. There are far too many real life examples of the latter happening to women.  I know, I was one of them. That’s not choice.  There is another. And it’s a choice well worth making, I am certain of that.

There is real value in choosing to wait.

Wait for me.

#equallyvalued

#dontscreenusout