Downright Joy

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


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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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Sacred

My non verbal daughter has no words, only sounds.

Sacred sounds, echoing throughout the kitchen temple; our church.

Where sacrifice and worship and silent gasping prayers rise, mingled with coffee and toast and sudocrem.

There are crumbs in the butter again.

Mmmmm is one of those sounds,

And that is the sound of my name.

Immanuel. This is God with us; with me.

Here.


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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