“The Skies I’m Under”
I used to wake up too early in the morning, exhausted but unable to get back to sleep. Conversations and words rattled around my head tormenting me, keeping me from my slumber and much needed rest. Memories played through my mind but the truth was obscured by a thick cloud of emotions. Seven years earlier my first child was born by emergency c-section and soon diagnosed with brain damage resulting in severe cerebral palsy. As his diagnoses mounted, he later developed life-threatening epilepsy.
In 2012, I went to a women’s conference and heard a lady share her story. She finished by saying we all had a story to tell. She claimed that both we, and those around us, are healed by hearing our stories. The only writing I was used to doing at this time, was writing argumentative letters to the council, social and education about my son, Sam.
My life felt consumed by disability and I needed a change, something different, so I booked myself on a local writing course. I have always liked talking. I love sitting with friends and sharing my life with them, opening up my heart and listening to theirs. What I found is, writing is just the same – but without the interruptions.
Throughout this time I continued working as a nurse one day a week and juggled life with my two kids. What I found was the woman at the conference was right.
My perspective changed.
I found a voice I never knew I had.
Initially, I wrote as though I was writing a diary. I was unreserved and expressed everything in my head. When I started sharing snippets of it with other people, I was pleasantly surprised by their feedback. Once I finished writing everything down I had to decide what next to do. I began blogging (www.bornattherighttime.co.uk) and the response was amazing. So, I chose to begin editing and carving my words into something that could be read by others. I wanted to share the truth and complexity of having a child with a severe disability; the questions it asks and how live is never the same again.
So, three years after writing down my memories began, I self-published my book ‘The Skies I’m Under’ (www.theskiesimunder.co.uk). As the title indicates, it shares my journey to a place of learning to love, and live well in, the life I have.
That doesn’t mean that it isn’t hard, or I don’t wish it was different, or even that I don’t throw fully fledged two-year-old hissy fits about how life is unfair, sometimes. It means that I am further on in my journey of acceptance. I can see glimmers of light in the darkest times of my life and I can see big swathes of joy in my difficult and complex present.
Today, I’m in the amazing position of hearing other peoples stories as they respond to my book. Heartfelt emails from other mothers saying ‘it was like someone took the thoughts from inside my head and wrote them on a page’ has made the whole process worthwhile. And hearing people’s stories face to face, as I speak to groups and lead workshops, is priceless.
There is comfort in a shared story that creates community. We have a shared story in being parents and a shared story in being the kind of parents we never expected. Life doesn’t always pan out as we hoped but we always have the chance to share this bumpy ride called life with each other.