Downright Joy

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


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Catching My Breath

I have just said goodbye to a cot.
The charity collector took it away. As I closed the front door, I had one of those ‘catch your breath‘ moments. The kind that appear from nowhere, sending you reeling, momentarily.

This was not any cot. If, indeed, there is such a thing. For six years it’s been part of our lives.

Our cot.

It’s not that I want my children to remain as infants. Not at all. I celebrate every part of their growing up. I embrace each stage and marvel at how amazing this gift of life can be.

No. That’s not why I catch my breath and am standing still for a moment.

It’s because it was ever even here at all.

Ten years of waiting for a cot.

Ten years of longing for the need to buy one.

Ten years of a spare room. Guest room. Store room. A whatever we want to dump inside it room.

Ten years of an empty room.

So many empty rooms in so many homes.
Ours was not unique.

Rooms that lie empty, hearts that are waiting.

Or breaking.

Empty for so many reasons.
Heart-rending reasons far greater than our own sadness.
Rooms that had welcomed a cot. For a time. Then, without warning, the cot had gone.
Unexplained, perhaps. Or ‘simply’ the fragility of human life was to blame. Devastating either way.

Rooms that were ready and waiting with a cot; but ultimately it was not needed. Even though the script had said it was.

The heartbeat could no longer be found.

Often small and insignificant, these rooms contain so much more than any other room in a house. Even the empty ones. Especially the empty ones. These rooms are containers of dreams. Dreams that are alive as well as dreams that have ended. Crushed. Hopes for the future, memories of the past; both cherished and painful.

But then it came.

Assembled, ready and waiting.

The room was no longer empty.

And so the first occupant moved in. A delayed start. She almost didn’t make it. The cot was very nearly not needed. For a few days we wondered if the room would remain empty. Perhaps it was not meant to be.

She had other ideas. The room was hers. So was the cot. As she lay in the cot for the first time, some eight months after she was born, I could not have wished for a more perfect moment. The cot. The delicate mobile turning gently overhead. Mesmerising us both with its sleepy lullaby. The room. Her room. Her cot.

And, if rooms had dreams, then this was surely one of the best.

The first occupant moved out. The cot redundant.
For a time.
Then the second occupant took her place in the cot.
A coveted place. A fought for place.
A place that others suggested I should deny her.
A place that I would be better off not giving to her. According to some.
A place for the elite.The healthy.Those who can contribute more to society. Apparently.
A place that for whom 92% of those found with a chromosomal addition will never be granted.

There were no instructions on the cot as to what kind of occupant it should have.

Healthy or otherwise. It made no distinction.

All welcome.

Her cot.

And now it’s gone. Too small for a good night’s sleep.
The cot has a new empty room to fill. Somewhere.

COT (noun) Carrier of all things precious.


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No Fear

If I could go back in time, three years or a little more, and have a conversation with myself, I would say only this:

No need to be afraid.

Today is World Down Syndrome Day, 21 March 2015,

Click on the photo or the link below for our celebration of Hazel.

It’s real love.

WDSD2015


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A Dog Called Oscar

Boy.

I don’t know your name.

Don’t be afraid. There is really no need.

I saw you turn your head. That’s not unusual, many do. Sometimes they smile. Or laugh. Some wave or say hello. It’s hard to put into words how uplifting it is when someone makes the effort to engage. Because they want to.
And it makes my day.

Then, there are the moments that cause me to catch my breath. Few and far between, thankfully, but they still pack a punch and leave a scar.
You got me.
No smile. No wave. That’s fine, really.
But you did not look away. You stared. As you overtook us, you looked back and you stared even more.
And in that stare all I saw was fear and, dare I say, contempt for what you did not understand.

I don’t blame you. It wasn’t your fault; how could it be?

You were on your way to school with your friends. No more than 8 or 9 years old. A credit to your school image. You wore a smart coat. Your shirt was tucked in and your shoes were clean. You did not push past me; you were not disrespectful in any way. You probably work hard at school and are a pleasure to teach. If my daughter were old enough to hang around with you, I think I would be pleased.

That’s the problem.
Appearances can be deceptive.

What did you see when you stared back at my child? I think I know.
You saw something that made you afraid. You saw something that the world doesn’t want you to see. You saw someone society rejects. 91% of the time*. You saw Down Syndrome.

In that moment you rejected her too.

How?
How did you come to see something you did not like? Who told you that’s what you would see? Who taught you, a child, to be afraid of my child?
Both innocent.
You weren’t born with those fears or prejudices; of that I am certain.
Yet you have already been shaped to shun what you do not understand. What you see as different.

It’s not your fault. It can’t be.

Looking is good. Connections can be made by a look. Staring is also ok with me. Sometimes I do the same. But in your stare was a rejection of one of my most precious possessions.

And it stung.

She did not ask for your approval so why did you give her your rejection? Who told you to do that?

Go ahead and stare. Stare all you like, but please don’t leave it there. Say hello or just smile. We collect smiles. They are taken hold of, embraced, then locked away in our memory bank.  Cherished. Like collecting conkers or picking blackberries we go out hoping to find more each day. We think about them, talk about them, get them out and relive them. There are so many.

The man in the Post Office who paused to pull funny faces at her, making her laugh. Or the woman who walks her dog every day and stops to say hello. Not to me, but to her.
We don’t know her name either.

These are the moments that carry us forward into a brighter day. These are moments that are filled with so much more than just a smile.

The dog is called Oscar. We are good friends.

Or, if you prefer, don’t even give us a second thought. Allow us to walk along the pavement just like you. Pass us by like you would most other strangers. Without a backward glance. We won’t be offended or feel rejected; acceptance comes in many forms.

And, in return, I will try not to judge you too.

 

* According to national statistics 91% of babies diagnosed prenatally with Down’s Syndrome are aborted in the UK.