Downright Joy

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

Tag Archives: #joy


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Trampling Through Tulips

Photo by Marija Zaric on Unsplash

For those of us well versed in all things Down’s syndrome related, we are likely very familiar with the poem ‘Welcome to Holland’ (You can read about it here if you’ve not come across it). 

Perhaps it was handed to us as new parents around the birth of our baby; a child born carrying an additional chromosome.  Or perhaps we stumbled across it as we trawled the internet searching for answers to allay new found fears and uncertainties in those early days of parenthood.

It’s a poem that divides opinion in our community, but this isn’t a post about its virtues or its vices. If anything, I’m Team Italy…mostly because of my family connections with a country that has long had my heart for many decades. So, Welcome to Holland did little for me when I was introduced to it some 14 years ago, but it still has its place for others, I cannot deny.

In reality, neither my experiences of the Italian way of life, or my understanding of how the Dutch operate bear much resemblance to where and how I actually live, as the parent of a teen with Down’s syndrome and complex needs.

Mamma Mia! 
The tulips round my way are long past their best.

No. Instead, I find myself residing here, in Suburbia, living at Wit’s End. Brought here on the Sleepless Night (after night) Bus, without it seems, a return ticket. Hopping on and off along the way to search for answers to this month’s health dilemmas. No, I’m wrong…..searching first for an appointment to look for answers to this month’s health dilemmas. Trying doors that say “Welcome” or “Open” only to find them cruelly locked from inside. I think, on occasion, I may have imagined the sound of laughter from within. 

And so here I am, living at Wit’s End. Carrying little else but the complex needs of my disabled child. Bags still hopefully packed with my dreams for her life. For our lives. 

Yet it’s here, not in Holland or Italy, that I find, in fact, I’m not alone. If I thought the centuries old, cobbled back alleyways of my beloved Sorrento were crowded with fellow travellers, it’s nothing to this place. It’s not very Instagrammable though, this Wit’s End. I’ll give you that.

But it’s here we gather. Each bringing our own stories of how we got here, of who would not listen to us, of who dismissed our fears or rubbished our requests for help. Telling each other stories of how many times our loved ones (and us as care givers) were failed, ignored, mistreated, maligned.

You would be forgiven for thinking that Wit’s End is the most depressing place on earth. 

And yet it is here I find my community. I find those who reached this destination long before I did, and are ready to welcome me into their homes, to explore their hive-minds, share their lives filled empathy, understanding, compassion, humour and so much more. Here I find, almost without fail, someone who will ask me “Have you thought about this…?” Or “What about trying this, it worked for us.”

It’s here, in the village of Wit’s End, I’ve found people who want to know and understand my child, and me. I’ve found Complex Carer Nurses, I’ve found parents of children with Down’s syndrome and or other conditions and complex needs. I’ve found other Wit’s Enders ready to make me laugh and not take myself so seriously. Quick to bring perspective, a joke, a slice of cake and a cup of coffee. There is, I’ve found, an end- less supply of Wit to be found here and I am eternally thankful for it. Heck, in my neck of the woods there is even our own Farm …a place with those ready to share our load and give us respite from our travels!

One of the most beautiful things I found about the Italian way of life, aside from the art, the architecture, the scenery, the beautiful weather, the food…..I could go on……is how much they know each other and are known by each other.  The sense of community there, I’ve always felt, is to be envied by us more insular Brits. But perhaps my beloved Italian culture is closer to my own experiences than I think.

Being known and heard is everything when you are a carer to a child (young or old) with complex needs and disabilities.  I may have been driven on many occasions to Wit’s End by circumstances and by not being seen or known. Yet when each time I arrive, without fail, I find friendship, laughter, hope and comfort that I am not alone.

Welcome.


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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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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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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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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


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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.