Downright Joy

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


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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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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 VanierBecoming Human

 


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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