Downright Joy

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

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Sparkling

Photo by Noah Clark on Unsplash

As I write, the long summer school holidays are almost at an end.
Seven weeks in total; it was meant to be six, but Hazel’s unpredictable health issues meant the holidays started early for her.
This could so easily turn into a post about coping (or otherwise!) with a child with severe disabilities and complex care needs when routine takes a back seat and ‘what shall we do today and will we be able to do it?‘ assumes the driving position.
It could so easily become a post about me and my frustrations. But, honestly, where’s the joy in that? When I set out years ago writing this blog, about this Downright Joy, I guess I only had one idea of joy in mind. The joy Hazel brings to our lives. Many times, I’ve called her my joy giver. And she is. She still does. That hasn’t changed. Yet Hazel is also growing up. Her joy is still treasured by me but, much more so, it is needed by her.

This summer I’ve noticed something about her joy.
Her joy is greater, when it manifests.

Wider smiles, deeper belly laughs, fast and furious ribbon waving.

When it manifests.

It manifests when someone wants to share it with her. A new or familiar face who takes the time to smile at her, say her name, say hello, pick up a ribbon and wave it too. A face that isn’t busy getting the lunch on or sorting through the laundry or dealing with another medical appointment or or……..

The irony is, I suspect, that Hazel is knowing greater joy because she is knowing greater sadness.

How is it possible that a human can grow up and yet shrink at the same time?

The summer break from routine has shown me clearly that this is a thing. I think I first noticed it a couple of summers ago in fact. Familiar faces, teachers, TAs, bus driver, school bus assistant, fellow passengers, friends, even medical professionals we are regularly involved with, disappear off on much needed and well-deserved breaks. This, on top of much less time at school since the pandemic and school life that has never fully recovered.
July blends into August and regular activities break for a while. Life itself seems to take a welcome pause. We welcome it too. Our busy world relaxes a little. Yet Hazel’s world doesn’t only relax at these times, it shrinks. It becomes less than in many ways.
Whilst the rest of us have calendars to count down the days or plan and prepare for adventures, Hazel just wonders where did everyone go?
And with her generally contented daily disposition of taking life as it comes, creeps in a little sadness. Hardly noticeable at first, but over time her eyes begin to lose some of their sparkle.
Holidays away help of course. Changes of scene have always been good for Hazel, but I have to recognise they come with confusion and can contribute to her feelings of uncertainty or anxiety. It all adds up.

And here’s what I’m noticing more and more as Hazel gets older. It’s not routines she misses; however good they may be. It’s not even familiarity itself. It’s people who will share her joy, no matter whether there is an activity or none. People who have the time to spend with her, whether it’s brief moments or something longer. People she knows, and people she hasn’t even met.

It’s the volunteers she beams at who walk alongside her, helping her to safely ride a pony again at Riding for the Disabled. It’s the faces of those she knows and loves who welcome her when she visits her beloved farm. It’s her carers who chat away endlessly with her, making even the most mundane of caring tasks fun. It’s the circus performer who smiled at her and beckoned her into the ring to join in the end of show dancing from her wheelchair. It’s the unexpected (to her) visits from her older sisters and their husbands…the joy, oh the joy of being able to share her delight with them. Often, just being in the same room with them, wasting time, is enough to start up the joy slot machine, and it pays handsome dividends.
These are the kind of people that bring the sparkle back to her eyes and the smile to her face. School brings this too and I am thankful for the new term; but one day that will come to an end. What then?

Hazel doesn’t so much need busy programmes, or events to fill her days, though she will enjoy their benefits.
Hazel needs connections to make.
Hazel needs company to keep.
Hazel needs a community to belong to and to bless.
Hazel needs to be known and loved.
Hazel needs to share her joy.

This is perhaps my deepest longing and prayer for Hazel’s life; that she will daily be able to share her joy.

Waste your time, but do it joyfully. You are here once. Wasting time is a sacred activity.
Gilo.


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Blessing

Photo by Ross Sokolovski on Unsplash

Burden is a beautiful, all-consuming word.
She is a gift, costly to many, priceless to me.
Too heavy, too expensive for some to receive, carry, care for,
Love, nurture and enjoy.

Burden is a noun as well as a verb.
A load to be shared, a weight best carried when spread
Across the shoulders of an entire community,
Not one person or two or even three.

Burden can be known by her alter egos,
Significance, Substance, Intention or Meaning.
Known also as Cargo, she can be most cumbersome!
Gold, real gold, weighs its worth so heavily.

Burden carries with her the full range of human emotions.
Which weighs more; a tonne of feathers or a tonne of bricks?
Feathers make for the softest of pillows for weary heads
Bricks build on each other, mortared together to surround, shelter and support.

Burden is a beautiful, all-consuming word.
And I am refined by her syllables.
Thrilled when others come alongside to share in her Meaning,
They add more bricks along the way, building all our belongings.

Burden (whose real name is Blessing)
Has just sat down on my lap, smiling, to watch heavy rain lash against our window.
Forgive me, but I’ll just have to put this down for a while and finish it later….❤️

“I sometimes hear old people, including Christian people who should know better, say, ‘I don’t want to be a burden to anyone else. I’m happy to carry on living so long as I can look after myself, but as soon as I become a burden I would rather die.’ But this is wrong. We are all designed to be a burden to others. You are designed to be a burden to me and I am designed to be a burden to you. And the life of the family, including the life of the local church family, should be one of ‘mutual burdensomeness.’ ‘Carry each other’s burdens, and in this way you will fulfill the law of Christ’ (Galatians 6:2).” John Stott The Radical Disciple


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Silent Disco

Photo by Bozhin Karaivanov on Unsplash

Who saw you today?

Not on the pages of an inclusive advert, or some clever marketing campaign.
Profits helped along by an investment of virtue signalling.
The ahhh factor leaves a sense of pride, of doing good.
Progress none the less, positive images welcomed by most, including me.
No criticism, no envy, there’s room for us all, and all of us are needed, ultimately.

Not on the pages of social media, as we scroll, pause and smile for a few brief moments to notice difference and give it a like.
Nor in the sound bites and platitudes of an inspirational news story or televised fundraising event.
Down’s syndrome mentioned to the masses in the same breath as your name.
As if your difference it isn’t obvious from your photo and therefore necessary to firmly and quickly affix.

In a digital age it seems to me that these are the places you are most definitely wanted.
Needed even.
Increasingly so.
I’ve wanted this too, and many I know who work tirelessly hard to bring this about, for reasons of good.
Yet, the varying motivations for wanting or needing this exposure seem, at times, to compete, and end up blocking you entirely from view.

Were you routinely seen today in the park, or the mainstream school or the cafes, restaurants or bars?
Or in the Church or the shopping centre, or the swimming pool?
How about the Pharmacy, or the Dentist’s waiting room, or when queuing for a bus?
Will you one day be seen at the Jobs fair, or the college open day; are these places even open to you?
Your kind of diversity seems to do best in a photo opportunity; contained within (Facebook) borders that have yet to be crossed into a new way of life that is good for us all.

Did anyone, aside from your teacher, see your Monday morning joy-face as you entered the classroom of your Special School today?
Or hear your laughter at the same point in the same song we sing together every day?
Did anyone see you fall silent last summer when your world shrank a little more and, for a few months, you rarely left the house?
Did they get to share in your delight as you danced in the living room for the hundredth time to Daydream Believer?
You danced like no one was watching: you’d do the same even if they were – a silent disco isn’t the place for you.

Are you needed by society? Definitely.
Are you wanted by society? Yes, but only to a degree.
I’ve noticed you are routinely missing from it, yet, it appears, you are not routinely missed.
Except by those precious humans in our lives who hear for themselves the music you play and collect the colours you bring; they make sure that you are never unseen.
And, except by me.

For the “foolish” things of God have proven to be wiser than human wisdom. And the “feeble” things of God have proven to be far more powerful than any human ability.

(1 Corinthians 1 v 25 The Passion Translation)


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The Nurturer

Image by Krzysztof Mandrysz from Pixabay

We asked for help, a year ago.
It was hard to do.
Pride got in the way, many times; weariness stood over us, blocking our view
Of what help could mean, not just to us
But more importantly, to you.

Years of thinking we should be able to cope
Manage by ourselves, not admit any hint of defeat.
It felt wrong, somehow, to ask just for us
But we should not have been afraid to ask
For you.

Help emerges, stepping very gently in on our daily scenes.
Those tasked with listening, listened.
Compassion now walks faithfully, routinely, through our front door.
She rolls up her NHS sleeves, and as I back slowly away, out of sight, I glimpse her smiling, so very tenderly, at you.

We never knew, incredibly, we never knew!
That help intended for us meant new independence,
A new face, a new friend, a giver,
Someone new, as well as and other than us to smile with, nurture and care

For you.

“You can buy two sparrows for only a copper coin, yet not even one sparrow falls from its nest without the knowledge of your Father. Aren’t you worth much more to God than many sparrows?” (Matthew 10 v 29 The Passion Translation)


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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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Lifted

Image by Bianca from Pixabay

Some people yearn for a glimpse of the sea.… its shimmering expanse opening up as they travel along a coastal road on a summer’s day. They taste it long before they touch it. The sight of the sea can thrill or calm, excite or pacify, threaten or invite. Such is its pull; drawing a person closer one moment, sending them running backwards another. At times, its power is too alarming and we retreat behind its defences where we are forced to watch and wait for calmer days. For all its drama, rarely does anyone tire of the sea or wish they had not experienced it. 

I yearn more for a lake than I do the sea. Drawn by the instantaneous peace I experience when nearing the gently contoured edges. I am calmed by the stillness of the water, occasionally disturbed by a surfacing carp or foraging moorhen. Dragonflies dancing across its surface, quickstepping back and forth, their tiny wings catching hold of the early morning sunlight. Today, I am captivated not by dragonflies but by an altogether more solitary beast. I am sat on a wooden bench in the shadows of the surrounding trees that bow in reverence towards this small fishing lake. Here, I find myself restored; not by peace, but by struggle.

A Heron, who naturally lays greater claim on this lake than I do, has patiently been standing sentry, some thirty metres away from me, for what feels like an eternity. A backdrop of biblical bulrushes and reeds afford it some cover as it waits. And waits.

I urge Heron to get on with it and be off with its meal so I can read my book. I came here early, before anyone else was up. It’s my only opportunity of the day to read without interruption, but I cannot take my eyes off this lone fisherman. The book remains unopened in my lap.

Heron takes no notice of my whispered exhortations and never once drops its guard. Breakfast; the most important meal of the day around these parts, remains its resolve. Finally, Heron’s patience is rewarded and breakfast is served. Heron darts forward with speed and precision. Denying its own smoky-grey awkward frame, Heron emphatically takes its prize.

Heron’s prize, a small Carp, has other ideas, and is in no mood to be on today’s menu at the Lakeside Brasserie. Carp contorts and twists violently, fighting for its life and putting up an immense struggle of its own.  So much so, I’m conflicted by who I want to triumph. In this magnificently terrifying moment, both need the win, though skipping breakfast is ultimately preferable to losing one’s life. Heron may disagree and assert that these things are not mutually exclusive. Heron has no need to explain this to me of course. Heron needs only to win.

After an age that in reality lasted seconds, Carp seizes victory from the jaws of defeat and leaps free of Heron. Miraculously, Carp lives to swim another day. Heron appears somewhat off its game, a little weary, perhaps. I’m definitely with Heron now. Moments later, Heron takes flight. Defeated, yet never looking back at what might have been. Leaving only a few ripples in the lake behind it; fading evidence that there had ever been a struggle at all.

I am in awe that such harshness exists alongside such beauty. And I am especially in awe of how Heron deals so graciously with this disappointment and loss.

For our family, it’s been a summer marked by disappointment and loss. Downright joy has, at times, caved in to downright fed-up or even downright sad. The unexpected death and loss of a cherished family member, as well as other un-foreseen losses and discouragements along the way has meant that this summer has felt particularly harsh.

It has become all too easy in the midst of troubles to lose sight of the good and the glorious this summer; the kindnesses of others, a brilliant family wedding, this precious holiday, a trip to the circus, coffee and cake with friends, music, laughter……

And, as always, the grief and frustrations have related to events that my daughter, Hazel, who has Down’s syndrome and Autism, simply does not and will likely never understand.

The troubles of this world, for the most part, do not trouble her.

And this is, unquestionably, her gift to us.

Her laughter will often erupt at the most inopportune moment, leaving melancholy no choice but to scoot over and make room for joy.

Her joy.

Her joy becomes our joy.

Her care free heart is free to care and it cares, so often, for us.

Struggles are real, loss can be deeply painful and disappointment may crush, but joy is still to be found and welcomed alongside them all. My favourite poet, Mary Oliver, wrote about this juxtaposition in ‘Heavy’, her extraordinary poem on grief. If you love poetry or are grieving for someone then do read it, if you wish.

But even more precious to me are some words from the Bible that I have found to be true. These words say that God is ‘the Lifter of my head’.

And I often think he uses Hazel to lift it.

A further note to the reader:

After carefully crafting these sombre reflections, I discover from speaking with the owners of the lake in question that (to my initial dismay) ‘Heron’ is in fact, known locally, as ‘Brian.’

Thanks for the laughs, Brian.

Life is hilarious too.

I hope you managed to grab some lunch.


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Procession

Photo by Rob Tarren Photography

I walked alongside you, guiding you down the aisle.

Ribbon Girl.

An honour I never dreamt I’d be given. Through a sea of Faces who, quite rightly, were looking at you, not me. An unconventional Bridesmaid, no floaty dress or flowers to hold. You would have thrown those away in seconds. Your entrance had an air of tumultuous serenity as you stomped your way to the front, heavy footed, row by row.

You did not know why you were there, but knowing why has never really mattered to you. You are so often content to just be in the moment; especially when those moments are surrounded by this much care, this much thought, this much love. You even paused in your ceremonial duties; stopping to observe an unfamiliar but friendly, smiley, beaming Face.

It’s a Tea Pot kind of face, not a Coffee Pot Face.

There are no long, drawn out frowns here today. This strangest of journeys is filled with Tea Pot Faces that beam achingly wide, from handle to spout. Tears, of course….but none sorrowful.

I tug at your sleeve, prompting you to take a few more steps. Bridesmaids are supposed to keep moving, not hold up the procession. You have not reached the end of the aisle yet, and there are more Faces to look into as you expertly wave your ribbons of ivory and green. Ribbon waving is a serious occupation, and you are well practised in this art.

You glance with some puzzlement into the Faces of those who know you well and the Faces of those who don’t. Faces of those who have heard all about you many times from those who love you dearly; notably on this occasion, the Bride and her Groom. They have honoured you amongst their friends without realising; in every conversation, every photo shared, every story of you that they have so fondly and often told. There is no advocacy superior to this.

These are Faces that do not display any expressions of prejudice they may once have worn, before they heard about you.

These are Tea Pot Faces, not Coffee Pot Faces.

Smiling at you, beaming at you. They do not frown at you with long, pitying glances or worse, stares. We’ve been in those processions too. Neither do they watch you from behind a camera lens, capturing this precious moment and missing it at the same time. They have been asked to enjoy the occasion without such distractions. You, of course, do not need to be asked.

These are Faces turned in readiness to welcome you.

It hasn’t always been this way. Scrutiny has followed you since before you were born, its motives not always for your best. I am glad when the cameras are put away, for only then can you truly be seen for who you really are.

You reached the end of the aisle. Your wheelchair waiting to give rest to your braced ankles and feet. Relieved of your duties, still you clutched your ribbons. You would need these later, at the Wedding Disco, where you would show the Faces how to wave them too, with much joy. You always have plentiful supply to go round for those willing to receive; ribbons and joy.

The Bride made her entrance and rightfully took upon herself the loving, welcoming gaze of all the beaming Faces. You had gone ahead and performed your responsibilities; preparing the crowd for her Magnificent Arrival.

I like to imagine you were simply returning the favour.

The tone, the welcome, the love, had long been established by those who truly know you, your sisters, their husbands, your entire family, your friends, their friends. You are so very loved. In life, in your life, my longing is that you will always be surrounded by these kinds of Faces. A Procession of Faces that stop you in your tracks and make you want to study them, spend time with them, showing them your ribbons and teaching them how to dance with you.

A Procession interspersed with the Faces who perhaps, like me, once used to only drink from a Pot of Coffee, and now much prefer a Pot of Tea.

#Downsyndrome


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Pass the tissues

Photo by Daniël Maas on Unsplash

Am I allowed to think about a world without you in it?

Dare I imagine what that would be like? 

I think I’m supposed to say that I can’t, I shouldn’t. 

But I can, I do, I lived it once; my life, without you. 

A life where your laughter would not erupt out of nowhere.

Chasing me around corners to share a joke I do not understand. 

Catching me off guard in a moment of melancholy. 

A life of contagion, where your joy could not be quarantined.

Come to think of it, you’ve never once tried to stifle a sneeze. 

I think I would hate it if you do.

So pass the tissues please,

I know I’d be sad with a life without you. 

“Our joy is not confined to ourselves but radiates out to all.” Center for Action & Contemplation

#Downsyndrome

#DownrightJoy


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Tagged

Photo by Marek Studzinski on Unsplash

I love her.

With every ounce of my being for every fibre of hers, I love her.

When I speak her beautiful name, Hazel; I love her.

When I think of her radiant face, her almond shaped eyes, I love her.

A violation of social norms; my love for her – my love.

How did I once believe I could not express or even feel this kind of love for her?

Who convinced me to ever doubt its existence?

Robbing me of those early precious moments.

Stolen time squandered on falsehood and fear; on Down’s syndrome, but not on her.

We were uninsured against such a heinous crime.

I love her precious, peculiar ways.

Pursuing unmarked pathways, she searches out joy.

Holding in her hands, the only navigation system she knows or needs: this moment.

Along these mystic trails I follow her, entering worlds of rituals and discovery.

A journey begun in hospital corridors that signposted a different way, on clinic walls painted with despair.

Uncertainty has become constant in our lives.

Walking hand in hand with each other and with faith, it is the only certain thing we possess.

Apart from my love for her, my love.

Under cover of prevailing gloom, we graffitied those hospital corridors as we left.

Tagged them with love as markers of hope, we committed our heinous crime.

#WDSD23 #DownSyndrome #Love #Hope #Humanity


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The Ballroom

Photo by Fidel Fernando on Unsplash

Spinning, twirling, twisting, turning.

She scans the kitchen, looking for the source of this audible joy; this beat, this rhythm.

Melodic notes of life amplified by her hearing aid; she asks for neither but appreciates both.

This is her way of life, of living.

She sits though never still, she dances on.

Side to side from her hips, from her waist.

Up, down, still seated, bouncing; looking up at an imaginary glitterball, laughing, smiling.

Often smiling.

Back on her splinted feet.

Heavy footed, as the lightest of feathers appear to fall around her.

She dances like no one is watching.

This is her way of life, of living.

But even if they are watching, especially if they are watching, she dances anyway.

She needs no invitation or permission to be in this glitterball moment; though society has deemed she does.

Her extra chromosome already disqualifying her from automatic access to the Ballroom.

Barriers to entry erected years ago, where Marshalls gather to scrutinise tickets; discouraging any without from finding a way in.

They see only invalidity; stamping their own heavy feet on the feathers and dreams of another.

They do not see a way of life for her, only a life not worth living and I surmise they too, may never have been inside the Ballroom.

At the wall, I turn off the source of this momentary pleasure, as is my prerogative, for I must get on with my plans for the day.

As the kettle boils so the dancing stops, and with it, at least for now, the joy.

For others the dancing never began.

Cut short at the box office.

Ticket deemed invalid then discarded.

Lost.

No one looks for what they lost outside the box office; rather, they walk away.

Knowing, perhaps, they lost something yet unable to truly comprehend its worth; disorientated, they leave it behind.

I wonder, were they trampled on too, before they could discover their trove? 

Kindness surely did not remove its boots as it went in for the kill.

This is now their way of life, of living.

Lost glitterball moments in the kitchen; the Ballroom.

#Downsyndrome