Overview

Elizabeth's only son James was born with Prader-Willi Syndrome, a rare genetic neurodevelopmental disorder with lifelong physical, cognitive, and behavioural disabilities. From adolescence into adult life, he has also suffered from debilitating mental illness and side effects of psychotropic medications, resulting in multiple hospitalisations. This is the story of Elizabeth's navigation along the journey with James - of diagnoses, education options, inadequate mental health services and an ever-changing NDIS landscape, all while maintaining a community of care and support around them. For over forty years, she has experienced the full range of emotions from overwhelming love, joy, compassion, tolerance and patience to anxiety, fear, dread, despair and sadness. These emotions have built courage and resilience, often not realised then, but illuminated in later realisations of 'I can do this, again, and again, and again if I have to for James' sake.' As a Christian, Elizabeth reflects on the tussles and frustrations she has had with God about suffering, her faith and the great hope she holds for James beyond his earthly life. She documents the journey for her healing and inspires others to keep going, not give up, trust their instincts, call out injustice when they experience it, lean on others when needed, and acknowledge the inner strength they have.

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9781923501164

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