Living on the Edge: My life as a parent

houseIs it just me? Or does anyone else feel like they are desperately trying to keep their house in order whilst stopping themselves from falling over the edge?

I’ve always enjoyed living life a little on the edge. I love travelling and feeling like the foreigner. I’ve even been known to eat something that is a day or two over its ‘sell by’ date.

But in the past, I headed down life’s lane and enjoyed just an occasional brush with the edge. I’d peer over the side at the waves below before retreating to a safer place. Eleven years ago, things changed and it took me a decade to realise by quite how much.

Everyone lives with stress, the source of which can come from a multitude of origins. I’m constantly surprised that with our varied stories, we all experience similar emotions.

One important way to manage stress however, is to keep it at arm’s length, to create margins that buffer its impact. The paradox of my situation, is that my safe place and stress are intrinsically bound together.

on the edge

Cliff edge by Kezia M’Clelland

Just over a decade ago, my son was born with severe brain damage and soon I found myself living on a cliff edge. Instead of skirting the brink, I made it my home. The well-worn path I had been following had suddenly fallen into the sea and I no longer knew what was ahead of me. My future was suddenly unknown.

With frequent emergency admissions, evolving diagnoses and potentially fatal seizures, I no longer felt able to create margins between myself and a cacophony of stressful situations.

So I took up residence on the fringe of life

 

Parenting a child with complex needs means life is squeezed. Days are jammed with medications, feeds, hoisting, caring and ensuring every detail of the day is planned. Weeks are littered with appointments, phone calls and emails about equipment, therapies and medical procedures.

It all takes up time, energy and emotions.
And what is left?
Not a lot.

Nowadays, I work even harder to create a life with margins but it flies in the face of a constant stream of demands. Today, having rest, having fun and making time for relationships, has to be intentional. Each one is a deliberate act that must be prioritised or is at risk of never happening.

Maybe that is the same for us all.

However, I’ve learnt a lot from my life on the cliff edge

Each day, I look out for the ‘moments’ of life because I know they vanish in an instant (and no amount of cherishing slows down their disappearance). And despite all the risks and stresses of living up here on the brink, I really have an incredible view.

The colours in the sky are vibrant and breathtaking.
Each new day is treasured.
Up here, ‘small’ is the new ‘big’.
The small moments, small steps and small successes have become big memories.

Rescue by Kezia M’Clelland

To those around me I cope, I’m capable and I enjoy life, and mostly that’s true. But one consequence of my home on the ledge is that it doesn’t take much for me to tumble. Without warning, I can find myself hurtling down the cliff face to the ground below.
Any number of things can cause my plunge. It can be a report letter, a comment by a professional or a well-meaning post on Facebook. Then, quite suddenly, I’ve flipped from busy and coping, to tumbling and heartbroken.

I’ve taken this dive many times before though, so picking myself up and heading back to the top is a well learned path. It’s still hard work. Often it requires crying, a blanket, a sofa and copious amount of chocolate, but I do whatever is needed.

Normally, within a day or two I’m back at the top, busy and coping again. But I always know, the perils of the edge lurk just round the corner.

I suspect most of us live close to one ledge or another, feeling slightly isolated and like few people really understand what life is like for us.

Here on my cliff edge, I appreciate my life with a view

There’s quite a community of us up here. We’re a remarkable bunch of parents, who banter and laugh about our lives on the brink. We share anecdotes and heartbreak to ease the feeling of being misunderstood. It helps us feel less alone.

And with our stories we weave strong ropes

Ropes that are sturdy and robust, created from our experiences and feelings. Ropes that at any time we are prepared to throw down and rescue a friend in need.

 

Because as a community we know, it can happen at any time. When the ground starts falling away and we need the rope of a friend. We need their experience, their memories, their footsteps a little bit further down the same road. And each of us cling on to the ropes, the stories of others, to help drag us back to the top and our home on the edge.

 

Rachel’s stories from the edge can be read in her 5-star memoir, ‘The Skies I’m Under’, available from Amazon. She speaks at events, leads parent workshops and runs training for professionals.

*****

Reviews of The Skies I’m Under

What a book! Honest, real, heart-felt. The real ups and down of raising a child with disabilities, I would recommend this book to any parent.’

‘A truly inspirational book. Once started I found it so difficult to put down.’

‘This book is…essential reading for professionals who work with children with complex medical needs.’

‘A bittersweet read as a mum to disabled baby with a similar condition. Beautifully written, heartfelt and honest.’

‘I went to a workshop run by Rachel and bought the book. It made me laugh and cry all at the same time!’

‘A beautiful recount of love, patience and determination. This story has touched me in so many ways. It has helped me realise I am not alone and that the feelings I endure are “normal” as I care for my own child. Definitely a book written from the heart and one that I would highly recommend.’

Follow

Get every new post on this blog delivered to your Inbox.

Join other followers: