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