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.