Penelope Sienna |  Student Reflection

My conversation with C was a carer’s story as she always cared for her brother, D, who has Down’s syndrome.

Things were going very well for D and after many years, C decided she could finally step back and have some “me time.” C bought a sewing machine and planned to make patchwork for her grandchildren. Unfortunately, life threw a spanner in the works when D suffered a serious spinal cord injury. C reflected upon the shocking new circumstances. She worries that being in the autumn years of her life she might not always be around to help D. Sometimes, she ponders that her, “me time” will remain a dream. 

The visual translation with the floating figure informs us of D’s loss of ability. He lays in a spiralling sea of warm colours and ferns under a blanket of patchwork squares. A spanner lays nearby. The autumnal coloured ferns represent both the ending of his time at the plant nursery and his ageing family. His carer wonders, “Who will care for him if something happens to us?” The patchwork represents all aspects of life that C has sacrificed. “The Spanner in the Works” represents D’s terrible injury and the difficult circumstances affecting all involved. It is unclear whether the figure is spiralling inward or outward. How we end our stories is unknown, but what is important is feeling connected and loved.

Patient Story  |  'Spanner in the Works'

When D first came to live with us, he said he ‘was special’ to which I replied, “We are all special in our own way”.

D has Down’s syndrome. People with Down’s Syndrome always seem to make the best of a bad situation and have a great ability to bounce back and see the joy in everything. Until recently, D has been a very outgoing, sociable person. D was independent, lived in a group home, loved hanging out with his friends and worked until he was hospitalised due to spinal cord compression. D went from being independent to not being able to feed himself and now needs full-time specialised care. I’m still trying to come to terms with things - it happened so fast and took me by surprise. I didn’t think ‘D’ would survive. It has been emotionally very trying and physically exhausting. I have never really had ‘me time’ as I have always cared for someone.

Advice to others: “Just strap yourself in as it’s a really rough ride. It’s been a highly emotional journey”. 

Down's Syndrome:

Down’s syndrome is due to a chromosomal abnormality (Trisomy 21) and occurs at conception. It can cause developmental and intellectual delay as well as increase the risk of other health conditions. Today, most people growing up with Down’s syndrome are capable of living full, happy lives as valued members of their communities.

For more information, visit Down Syndrome Australia