“When our son David died in the early morning of 16th September 1993 (he had CLN2), we took him home from the hospital in our car. It felt very normal having him with us. Leaving him at the hospital or giving him to someone else seemed unimaginable.
“He stayed with us all day, in his usual position on the leather sofa in the lounge room. It was sunny outside, so he had a spell on the swinging seat in the garden, in the arms of his older brother. Friends and family arrived to say goodbye, but it felt more like a party in his honour than a wake. Is there such a thing as ‘happy grieving’?
“In the evening, I drove him to the funeral parlour. I left him there on a thin bed – alone with strangers. It was very hard. How, why could I possibly leave him like that? But I followed the prescribed protocol.
“The day after, David had been placed in a shiny wooden coffin. But he wasn’t there. He had gone; his body was there but not our David. Part of me was relieved that he was no longer in that strange place with people he didn’t know and another, stronger part finally understood that he really had departed.
“We held his memorial service in the grounds of the Rudolf Steiner school for disabled children, Inala [in NSW]. The turnout was extraordinary. Many of the girls from a neighbouring school were there, and many, many other people that I had never met. But David had, in his own way. He couldn’t see, walk or speak, but he could hear and he could laugh and somehow he had formed connections and relationships, and those people came to say their goodbyes. His teachers played music and danced under the huge gum trees; solemn words were spoken but there was also a lightness, a certain sombre joy of being surrounded by the beauty of nature and the life of David.
“In the days that followed, my wife and I became aware of a huge hole in our lives. Not just the emotional emptiness of the loss of a child, but we no longer had the time-consuming daily routines: the feedings, the washings and cleanings, the medications, the music, the simple sitting with him, talking and listening together to Inspector Gadget and Baba. We still had our two other children to care for, we still had work, gardening, friends and all the rest, but there was a sort of black vacuum in our lives. Hours of activity no longer required.
“Gradually this hole began to fill, seemingly from the edges. Yet I fought against this. I wanted that hole, that feeling of black emptiness. It felt like a betrayal to allow it to fill. I wanted to carry the grief like a stone, so I would never forget. And yet inevitably, the natural forces of living and of the healing forces of grieving slowly won over.
“Twenty-five years later, I still think of him. Not every day, but on many. And when I do, I feel a small frission of joy, and the warmth of a love – of him and from him. I once told a friend at a party that David was the best person I had ever met – and it’s true, too.
“And when life-doubts appear and questions of ‘what am I here for’ arise; when I look back over my life and feel I have made something of a mess of things, I remember David.
“I remember loving him and caring for him. It was a very great privilege to have known him and to have been given the opportunity to care for him during his short journey through this world. And if I do nothing else in this life, well, perhaps that’s enough.”
BDSRA Australia President, 1995-2015