This was my third Conference, but it felt strange and more real because with Eilidh there I lost my anonymity; Eilidh and Snappy were whizzing around, shouting out to the world that we were there because of disability, because our lives had been turned upside down by a diagnosis of a neuromuscular disease. I was no longer able to lurk in the shadows. I was there in an attempt to stand tall and confident as part of a family living with SMA.
My family was there, I felt strong but all of a sudden I felt very alone, too. I was without my wing man and without a code word for escape. D was playing in the crèche with E and N, far removed from the nitty gritty – and yet informative and inspirational - of the conference but still there, and yet too far away for a sideways glance or squeeze of my hand or a “we’re ok" to reassure me that we are living this life with purpose and joy and hope.
An hour into the morning session and as a mummy – and not a professional - it all suddenly felt too real, too personal and very raw. Inspirational stories kept me focused but distractions flitted past… I saw the wheelchairs, in every shape and size and colour. I could hear a ventilator whirr in and out, in and out, in and out, supporting a life, precious and real. PAs sat close by, on hand to assist and aid and enable, hovering and able to improve the day to day life of their loved one, relative, friend or "boss". I could imagine a future for Eilidh and for my family, but I didn’t really know if I was ready to see the reality of living a life with a neuromuscular condition.
At the end of the day “A Life Worth Living” proved particularly hard to watch as seven men living with duchenne muscular dystrophy push ahead to lead independent lives – as independent as they are able with a disease that leaves them totally dependent on others. I wish for E to live as independent a life as possible but the truth hurts – she will still be so dependent on others to enable her to life independently.
All things considered, however, I don’t know what the future holds for Eilidh; no one does. We can only live in the present moment, making the most of this “wild and precious life” that we have been given, encouraged and inspired by others, and fuelled by the love of family and friends. By taking each day at face value we will move forward to an uncertain future and the challenges it may bring. I know that we will learn along the way, growing as a family, with love and hope and faith as our foundations, and we will live our future, challenges and all.
This was the emotional response to my One Day, One Conference, open and honest and real. We can all stand tall and be strong and learn, but it is often our fears that bring the greatest opportunity for growth.
You can you read the other Conference posts here: