Who was it who said, “The death of a million is a statistic — the death of one is a story.”?
Engage with Grace begins with a story — a story about an extraordinary young woman named Rosaria Vandenberg who was 32 when she was diagnosed with stage IV glioblastoma. An extraordinary young woman who was 32 when she died — just 7 short months later — leaving behind a two year old daughter, a doting husband, and a loving loving family. Her experience — as well as her family’s experience — is part of what inspired us to start the Engage with Grace movement.
Za almost died in the hospital having not been touched or held by her two year old daughter, Alessia, in over two months. Through the force of one person, the family stood up to the system and did what they thought she would have wanted — they took her home.
And that night — after two months in the hospital, two months of Alessia feeling afraid to hug her mum, lie next to her mum, talk to her mum, touch her mum — on the very first night she was settled at home — Alessia crawled up next to Za in the bed, and for the first time in eight weeks, gave her mum her medicine. For the first time since Za’s 2nd surgery, she crawled in to bed next to her. And Za — who had not spoken or opened her eyes in at least a week, woke up fully, and looked her daughter square in the eyes, and loved her in the way that only a mum can. And the next night she died, peacefully, at home.
Would our experience have been different if we, as a family, had discussed these difficult choices? If the family had not found the strength to take her home, would Za have ever held her daughter again?
These questions are in part what have led to the Engage with Grace movement.