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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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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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


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Lemons and Pomegranates

I recently took time out from caring for my disabled child who has Down’s syndrome and took a trip to Italy to visit family I had not seen for a very long time.

It was also an opportunity to spend more time with my eldest child, and introduce her to a whole new cultural experience as well as meet some of our family for the first time. For one entire, exhilarating week, we wandered the cobbled streets of Sorrento, savouring the sights and the sounds of this beautiful coastal town in the Bay of Naples. 

Lemon trees lined our pathways, Orange trees also. In the narrow back streets, shops and bars jostled for space and competed for customers, their baskets filled with ruby red pomegranates and lemons the size of grapefruits. Leather goods spilled out of doorways giving off an intoxicating air of ‘We are Quality and we know it.‘

Sorrento, according to Greek mythology, was home to Sirens, who lured sailors onto its rocks with their mesmerising songs. Today, tourists and locals alike gather above those rocks, lured not by song but by sunsets. A place to stand and pause, capturing a memory or two against the vibrant colours of blue, fiery reds, orange and deepest yellow hues that fill the skies.

A short train ride along the coast finds the ancient city of Pompeii and its neighbour Herculaneum. In AD 79, a cataclysmic eruption of Mount Vesuvius, known to locals as His Majesty, destroyed the lives of over 16000 inhabitants and the livelihoods of those fortunate enough to escape the suffocating clouds of ash or the pyroclastic flow.  Wandering through Pompeii’s ruins, our local tour guide brought this legendary city to life as she told us stories of some of the people who once lived and worked here. The rich, the poor, the everyday and ordinary lives and their extraordinary blueprints for so much that we know and use today. Who knew, for example that house builders in Roman Pompeii knew the design for LEGO centuries before LEGO did? Our guide told us much of what she knew; human stories of human lives, achievements, hardships, joys and sorrows. Baking bread, shopping for clothes, going to the theatre, gossiping in the town square. Every day life of men, women and children, living and thriving in community.

‘Lego’ type design found on building blocks in Pompeii

One of the most remarkable outcomes, at least to me, of the story of the Volcanic eruption in AD79 is how the surrounding area eventually recovered from this catastrophe. The whole region is famed for its produce. Olive groves aplenty, vineyards, oranges, lemons and much more are to be found on the slopes of Vesuvius in abundance. And, according to historians and geologists, the land became far more fertile as a result of the eruption. The economy recovered relatively quickly and future generations enjoyed the spoils from the enhanced rich soil. They thrived. His Majesty Vesuvius brought life as well as death.

When my daughter, who has Down’s syndrome, was born I was given a poem. The poem was about a planned holiday to Italy being diverted in the air and landing in Holland instead. This poem is well known in the Down’s syndrome community and is a bit like marmite in the way it divides opinion. Personally, I found it to be well meaning, but deeply disappointing. No offence to the Dutch; I’d love to visit their country too one day. But I will not allow anyone to steal Italy from my heart or my dreams.  Having a child with Down’s syndrome is not a diversion or even a different destination; who knows where any of us will end up in life after all? Neither is it a catastrophe as some think or express.

What happened in Pompeii was a catastrophe. Having a child with a disability is not.

I do not minimise the challenges that come with bringing up a child with Down’s syndrome. I never have, I hope. The opposite in fact. I have no desire to ‘lure’ any parent faced with the news that their baby might have a disability into a false sense of security, when the journey is clearly fraught with, at times, hard, rocky places. But modern day Sirens still go off where disability or, in particular, a diagnosis of Down’s syndrome is concerned; bringing fear, panic and urgency in decision making. They need always to be tempered, in my opinion, with a softer, sweeter song. A song not of falsities or deception, but of hope. There is still life to be had, to be lived, to be enjoyed. And in many ways it is a life more vibrant and verdant than before.

I do wish that my daughter’s life, and the lives of others born or unborn with disabilities are seen first and foremost as the humans that they are. Perhaps, if they were, there would be no need for a Down’s syndrome community or a disabled community.

Just a community would be enough. 

A community more welcoming, more supportive, more vibrant, more fertile, more prosperous and hope-filled for all its inhabitants, its humans, than ever existed before. Thriving.


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Merry Go Round

Half way up the stairs.

We made it half way up the stairs. She is on her stairlift. I am holding down the control button.

The alarm is, well, alarming. It’s shrieking….. I’m no longer green. I’m red I’m red I’m red. And this is as far as I can go today.

I disagree with alarmist opinions, I always have.

Yesterday you were green. They said you were fixed. They said they couldn’t see anything majorly wrong. They looked, they tweaked, they said they did their best yesterday and indeed you were green. They hoped their remedy was permanent. 

So did I; the cost is mounting and climbing higher than any stairlift could ever go.

Red, green, red, green, red, green

You, me, me, you. Today we both turned red.

I brace myself to lift her down from her predicament. Praying we do not topple. And I did actually pray.

Is this what it feels like to be rescued from a fairground ride? Stranded in mid-air whilst all around go about their business down below, busy on adventures of their own. A whole community, just down there. Out of reach.

We are high up. Hoping for help, though it does not come. Praying. Feeling very small, very alone. At least one of us is. The other not so. She has always loved fairgrounds. The lights, the colour, the spectacle, the drama. She is laughing right now. Unconcerned. All the fun of the fair is in her eyes as it always is. This is what blessing looks like.

Oh I too love the funfair, don’t get me wrong. It’s true I’m not all that keen on the Helter Skelter or those swingy things that send you hurtling through the skies at breakneck speed. And the Dodgems – well they are just plain dangerous if you ask me. But find me the Hook a Duck stand to try my luck with, or a colourful Carousel with painted horses and I’ll happily hop on and go round all day.

A fairground is a place where screams are many yet, no one hears them. They are not required to. Laughter, joy, screaming, fear, exhilaration, merge into one, giant, merry-go-round. Pleasure and pain. Pain and pleasure. Pleading to get off then getting back on for more. Fearful moments soon overcome by joyous ones, then replaced by fear….and so it goes on.

We are downstairs again, yet we need to be upstairs. She needs to sleep so we cannot stay here. Now there’s another obstacle in our way. It’s the same but different. Still alarming, still flashing and now IN OUR WAY. Reminding us of the journey we now face. A perilous one. An uphill struggle; each of my steps must now be carefully and very slowly taken for fear of us both tumbling down the stairs. The chair is not moving, no matter how hard I plead with it to work. Please just work. I scream a scream that no one hears. Not even her, thankfully. Only one of us feels the fear on this particular ride. The other knows only love and trust. This is what blessing looks like.

One day I will laugh at this too, just not today.

One day the plan will come together. A crowd will gather around us. Tradesmen and women will set to work to help her; and to help me. The stairlift will no longer be required to transport her to sleep each night. She will sleep downstairs, safe and sound in a new environment that can truly meet her needs. One with new rides to experience, buttons to press, levers to pull, hoists to take her into orbit. We will laugh with great gusto at ourselves in front of distorted fairground mirrors, knowing that our true self remains intact. Dignity will be restored. Hers and mine. This is also what blessing looks like.

Just not today.

Tonight we will dream of carousels and candy floss and all that this fairground means to us; we are certain we do not ever wish to leave.