Downright Joy

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


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Songbird

bird in cage

I know why the caged bird sings is a book that profoundly moved me when I first read it years ago. The author, Maya Angelou, vividly recounts her childhood against a backdrop of racism, discrimination and poverty.  A book filled with moments of joyous discovery weaved into and through a history lesson on brutality.

I’ve been re-reading it again recently.  I say recently, but it’s taken me over a year and I still haven’t finished. Not for want of trying – I’ve quite an impressive stack of literature next to my bed; but for the fact that the moment my head hits the pillow I’m gone.

As a parent and carer to two children with a range of both complex medical needs and disabilities between them; Autism, Down’s syndrome, Dyspraxia (let’s just say the list of conditions at the top of our hospital letters takes up most of the page) – reading for leisure, in fact most kinds of leisure tend to take a back seat. Sleep is more of a priority as it can often be in short supply. Tube feeding my child every night tends to cut across most socially acceptable leisure pursuits at the best of times.

(She’s worth it of course, of that I have no doubts. They both are).

Therefore, a trip to the hairdressers every eight or nine weeks or so is something I guard jealously. A self-indulgent hour and a half that serves also as an opportunity to read.

Maya Angelou comes with me. She sits beside me in the salon. She laughs in the mirror and tells me her tales. That laugh. From her belly. Gets me every time.

My hairdresser is too polite to mention that I am still reading the same book as last time, and the time before and the time before that.

Last week, chapter twenty five was waiting for me. Three quarters of the way through. I looked forward to Friday and my appointment.

Chapter twenty five is still waiting for me. Like everyone else in the nation, no, the world pretty much….a haircut now has to wait. Appointment cancelled. Salon closed. It’s on hold.

Everything is on hold. In some way and to some degree.

And, for families like mine, it’s vital support systems that have been put on hold. Systems we have fought for, prayed for, cried for, pleaded for. Systems we have celebrated gaining access to: education, healthcare, social activities for the disabled, respite for carers and much more. Support systems gifted to us by the kindness and dedication of numerous volunteers. Families, like mine, suddenly find themselves without these vital networks. More than that, they watch in disbelief as people panic buy medical supplies such as gloves and clinical wipes – items we rely on for daily life, regardless of a pandemic, are now in short supply. Respite centres close, lifelines are cut off. And though the world moves online; excellent programmes and meetings are created and made available to those who now have lots of time on their hands, these are much less accessible to families like mine. These families wonder how on earth they will cope. I wonder that too.

Then I remember Maya.

I remember thankfulness. I remember beauty in hard places. I remember to live one day at a time. I remember to not worry about tomorrow for tomorrow will have enough worries of its own.

I look at my daughter who has Down’s syndrome. She is non-verbal,  yet she tells me all I need to hear, loud and clear.

She tells me that there is joy to be found in the waiting, in the confusion and in the uncertainty. In the now.

She loves her life. Her school, the farm she visits, the lambs she strokes, her home, the park, the shops, her beads and ribbons, Granny & Grandad’s house….

She has no idea why she cannot go much beyond her back garden at the moment. She is confused. Sometimes she is upset. Yet she searches out joy and brings it to me in some small, gigantic way every day. Today it was in a belly laugh. A bit like Maya’s. From deep within yet at what? I have no idea.

Hardship is, well, hard, yet it does not have to be devoid of joy.

Our lives are not really on hold, even on the hardest of days when there is no respite to be found. Even then, I have found there are always reasons to be thankful, always opportunities for joy.  My daughter with Down’s syndrome eloquently tells me so.

And I remember Maya. And I think I might know, a least a little bit, why the caged bird sings.

 

And Still I Rise – Maya Angelou

Maya Angelou

 

 


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Windmills and Bicycles

I love the Chelsea Flower Show. Glorious, decadent, sometimes ridiculous, but always sumptuous. A televisual feast that I dine out on each May. A week long explosion of colour in my living room (I’ve yet to actually go there). Designers clamouring for hard won awards from the judges. A label to be proudly displayed for all to see, opening doors to further fame and success.

Inspired by this sublime, horticultural festival I annually turn my attention to my own patch of ground or ‘garden’ as it’s rather hopefully known. I imagine how I will transform it into my own haven of tranquility; one with an edgy, urban, free flowing design, softened by wispy aromatic planting and ethereal water features. Award winning. Gold Standard or at least a Silver Gilt.

But not today.

Today the paddling pool is out. A large blue inflatable bath sits slap bang in the middle of the lawn. Well, perhaps lawn is a little optimistic. But there’s definitely grass, of varying lengths. Quite a few patches of the stuff in fact.

There is a border…of sorts. Hardly wispy though. More weighty. Overgrown even. A tree or two. A couple of swings, a small trampoline and a shed.

Oh. And a windmill.

A bright, colourful and very large plastic windmill.

You see, the garden of my dreams is not the garden of my reality.  The garden I envisaged is not a bit like the one I actually have. A different reality.  Not how I imagined.  A bit rough around the edges in places. Needs maintenance.

The garden I have is magical.

Yesterday, she made the windmill spin. My daughter has never done that before. The windmill I purchased on a whim from a cheap and cheerful retail outlet just the other day.

She’ll enjoy looking at that.

But she did more than look at it. She made it spin. She actually made the windmill turn. Over and over again. An action that most children would learn to do in a heartbeat has taken her years to accomplish. It does not matter. She did it. And she loved it.

Our garden is a safe place for a child with Down’s syndrome.  A place for her to be. To feel, to smell, to touch, to taste, to explore. Our garden is her space. A safe space. A nurturing space. A joyful space.

It’s also a place where her older sister can be herself. It’s where she can, if she chooses, practice riding a bike – away from the quizzical looks of others. She has yet to be able to ride a bike properly. Dyspraxia – a life-long developmental condition – has recently been added to the list of our own awards. Another formal label now appears at the top of the endless stream of hospital letters that we receive; I’m not complaining – labels can help open doors to a different kind of success. Dyspraxia makes the things that most children take for granted so much harder for her. Climbing, swimming, running, jumping, riding a bike or a scooter – they are all typically huge challenges for a person with Dyspraxia. It also brings with it a host of daily sensory challenges and stresses.

Our garden is her safe place too.

We are soon to have some long overdue landscaping done. Some order is most definitely needed, I have to admit.  A patio would be nice.

Chelsea is glorious. Perfection. But in many ways it’s an illusion. Temporary. Taken down once the cameras have been switched off.  For most people, their gardens are not like that. And, as much as I love Chelsea, I am sad at how it leaves me feeling when it’s over. As though my garden isn’t good enough. Defective. Less than.

Our garden is not a Chelsea garden. Yet, despite perceived flaws in its design it brings great beauty and depth to our lives. Sometimes chaotic, sometimes peaceful. It is an ever changing landscape that challenges me and captivates me at the same time. It is a tough but beautiful place to be. I want no other garden.

I think Chelsea is perhaps selling fake flowers. Artificial.

Someone told me once that I could aim for perfection with my unborn child. By not having her. By ending her life before she was born and trying again for a better one. A gold standard, award winning one.  I like gold, I really do.

But I prefer windmills.

Hazel and windmill