Downright Joy

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

Tag Archives: #belonging


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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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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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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