learned from this experience how families develop their understanding of the meaning of an illness over time. When the diagnosis was first made, this devoted family would have stopped at nothing to keep their daughter alive for as long as possible. And yet, quietly and lovingly, over time their position shifted. They purchased a grave site, they focused on tiny details that yielded enormous benefits to their girls, they recognised the diminishing odds of adding quality to life, and they bowed with grace and tender dignity to the inevitable, ensuring that Helena’s death was as enhanced by love
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