Just over a year ago, my 26-year-old son Charles was told he would have little more than 24 hours to live. Family and friends gathered at the hospital to send him off with love. But true to his courageous spirit and infinite humour, Charles woke the next morning, turned to us and declared “anyone would think I was going to die”.
We counted our blessings but knew he didn’t have long. Shortly after, our six month journey with Karuna began. Charles was born with Cystic Fibrosis and had spent his life in and out of hospital, but his spirit was indomitable.
He didn’t just want to survive his last few months, he wanted to truly live surrounded by his beloved pooch Shadow, his friends and his family. Karuna empowered him to do this.
Being wrapped in the arms of Karuna was akin to a young child being cuddled by a loving parent. That feeling of calm, of being secure in the face of adversity. When our Karuna nurse Millie first arrived she said, “we laugh, we cry and we give great hugs”.
As a young boy, my Charles enjoyed a very physical life. He was an incredible sportsman, excelling in every sport he set his sights on. When he left school he completed an apprenticeship, travelled, established a Marine business and was a self taught pyrotechnics expert. Charles was adventurous, independent, passionate and a loyal friend. Karuna allowed him to be himself right to the end.
Our first meeting with Karuna was in March 2016. There was a chill in the morning air, heralding not only a change of seasons but a massive change for our family as we were told he had less than a month to live.
Our house is a haven for young men. Charles had his dream car in the driveway, he had his pyrotechnics in the garage, his dog by his side and he had his mates. A month passed and he was still driving up to Mt Coot-tha in his beloved Mercedes. Two months passed and he was setting off fireworks in the backyard. State of Origin came and went with Charles and his twin Toby cheering on Queensland.
The seasons changed and a tsunami of friends flowed in and out of the house. Five months went by and his devoted Baptist pastors John and Nick were by his side playing guitar, taking song requests. It was so calm.
Having Charles at home meant we could walk this journey with family and friends – Sunday roasts, long lunches, his dog at his bedside, praying and sharing funny stories.
Charles required specialist care that is most often delivered in a hospital setting. Medicines needed to be administered, syringe drivers need to be changed and Charles and our family supported. Charles could not have had this precious time without the wholistic palliative care provided by Karuna at home.
Our Karuna nurses Millie and Cora would tend lovingly to all his medical needs as well as liaising with all of Charles’ medical practitioners. They became important family members, knowing how to comfort me when I felt overwhelmed and supporting close family and friends. Karuna volunteers would come and go, doing the washing, ironing, tidying and staying at home with Charles when I needed some air. I was able to focus entirely on Charles.
When Charles was born I was overjoyed to be able to care for my baby. With Karuna’s support I was again able to be a mother to my baby as his 27 year journey came to an end. Charles’ last 24 hours were incredibly special. Charles hosted his last supper – Thai takeaway – with his closest friends and family. It was such a beautiful journey and one we could not have taken together without Karuna.