Being the parent to child with complex disabilities is like living on an island. The surrounding people each reside on their own islands which on the surface appear similar but feel worlds apart. To others, my island looked just like theirs, but I knew it was so very different. Although the other islands were not too far away, there were times my emotions and grief hung like thick fog, distorting my view and making me feel even more disconnected.
My own island carried all the characteristics of new parenthood. Juggling nappies and sleepless nights. Waking in the morning to the odour of slightly off milk – only to find a damp breast pad clinging to my cheek. I had taken to sleeping in more supportive underwear then when I ran a marathon and there is a reason sleep deprivation is used as a form of torture. The overriding sense of being out of my depth and surrounded by chaos wasn’t unique to my flavour of parenthood.
Yet, my overriding feeling was of disconnection.
My island was disconnected from my expectations, hopes and dreams.
Where I once anticipated a future; hopeful and expectant. On my island, it unravelled before me daunting and unknown. The milestones I unwittingly imagined, such as babbling, rolling, standing, walking and talking had vanished. Instead, the holographic world I had conjured in my mind played out in some unattainable, non-existent, parallel universe. In its place, an uncharted road stretched to the horizon. No-one had given me a map.
My island left me disconnected from people.
Even those with whom I had once experienced closeness and belonging, no longer fully understood the features and emotions of my island life. Despite a growing community of therapists and professionals, I felt disconnected from them by their jargon, procedures, uniforms and constant expectations upon my time. When the majority of people I spent time with were being paid to engage with me, I did not feel connected but rather a small piece in everybody else’s business.
But telling my story changed everything.
The Skies I’m Under was never intended to be read by others. Yet in writing it, I connected with my experiences, my emotions and the events of my past. Finally, I began to feel connected to my present and as the years have passed, a kind of future has come into view.
Despite this, gaps remained.
Gaps between my perspective and priorities, and those of the professionals surrounding our family deepened the sea around our island. The chasm between policy and legislation, and the provision my family experienced was impenetrable. I knew as a nurse that clinical practice can fall short, despite the hard work and passion of professionals doing their best but the contrast and gaps were stark and painful.
I became convinced that Mr Simon had it wrong. We aren’t suited to island living. A sense of belonging and connection is deeply rooted in our own happiness and contentment. The circumstances surrounding families like mine can make us feel disconnected. The gaps we experience every day fuels a sense of isolation.
Now, I am passionate about #bridgingthegap.
Through training professionals, speaking at events and leading parent workshops, I facilitate #bridgingthegap between parents and professionals.
In storytelling, I believe we can connect with our own lives and the lives of others, helping us in #Bridgingthegap.
By communication, community and co-production, we can be #bridgingthegap between policy and reality.
With the ‘Don’t call me Mum’ initiative we can respect and acknowledge the partnership needed between parents and professionals.
It always starts with listening which leads to effective communication and the opportunity for co-production. It requires vulnerability and bravery from everyone. Whether parents, professionals or policy-makers, we all need the courage to come together expectant on ‘Bridging the Gap’ for families of children with complex needs. Because island life can get very lonely.