Downright Joy

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


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Between A Rug And A Hard Place

Dear Church,

I tried to alert you to what you were missing.
Your curiosity, at least, made some of you turn around and look, check your pockets even, to see what of value you had dropped.
But perhaps you could not miss that which you never truly believed you needed.
Now you are the ones who are missing.
And as one who holds out this treasure, I am filled with sadness, pity and compassion, for you.

I tried to tell you who you are missing.
Deep down, I believe some of you have noticed the void in your midst.
But your programme of possibilities is thrown, rug like, over her puzzling space.
Fully occupied by other valuable and precious causes,
Whilst sweeping her, and others, once more from your view.

I tried to tell you it’s you who are missing.
Missing more than you can ask for or imagine.
Missing belonging, missing beloved-ness,
Missing a blessing that has nothing to do with ease.
Grace that will find its way to bless another, regardless.

This post was inspired by a book I read recently by Micha Boyett, (author, speaker and, like me, a parent of a child with Down syndrome)
The book is called ‘Blessed are the rest of us: How Limits and Longings Make Us Whole’ and I found myself profoundly moved and challenged by it.
Thank you, Micha.


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Pocketful

Photo by Alexander Grey on Unsplash

We collected five on our way home from the hospital today.
Five!
Not two or three or four, (which would still be good) but five.
In February of all months, or Kale-monath in Old English, named after a cabbage, I have gleefully learnt.
A perfectly sensible name for this month, at least it is if you happen to live in England.

Five; all now safely stowed away in my coat pocket.
Snatched almost rudely, as if in short supply then shoved deep inside lest they be stolen away.
Now stashed amongst scrunched up tissues and the remnants of an autumn leaf I have not had the heart to throw away, both constant reminders of the season we’re in.
A pocketful of things I would not be without, when I am with her.
Free stuff.

Five in one walk is a record for us.
Our faces lowered as we battle the elements of a dark, bitter afternoon; February revels in its cruciferous status.
She laughs as her wheelchair jolts and bounces over once subterranean but now emerging tree roots.
I do not laugh; today I am weary of visiting hospitals and sitting through endless appointments, either in clinics or at home for this won’t take long and they’ll be as quick as they can.
I am cold and wet and her wheelchair is heavy and these roots are monstrous and, and…oh hello there…thank you, yes you too.

Our pockets are filled.
Hers with the joy of the journey home, the wind and the rain are her elements, mine bursting with the lightest of finds.
Five genuine smiles given to her by five strangers, as they hurried by on this dreariest of winter days, handing out free stuff worth ten times its weight in gold.
Five of the kindest, ordinary faces giving a moment to honour her, not to pity her (we don’t collect those), recognising then marvelling at the treasure she always carries.
And reminding me, all over again, of the utter privilege that is every day caring for her.

A twinkle in the eye means joy in the heart, and good news makes you feel as fit as a fiddle….

Proverbs 15 verse 30, The Message


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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

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