"Never mind, when is dinner ready?" Living with Prader-Willi syndrome

The cat died when Rachel was 15¼. Ginger was loved and cuddled by Rachel every day for every one of his 12 years. Ginger’s life was defined by the search for warmth on Rachel’s bed and a regular supply of food. Rachel’s chromosomes determine that her life is lived through the experience of Prader-Willi syndrome. It is unfortunate that in Rachel’s short life I have now on six occasions told her that a creature (three human, three animal) whom she has loved, albeit in varying degrees, has died. It’s hard to imagine how I would feel if that were me. I can guess though: I have ranted, cried, sniffled, shrugged. I have experienced overwhelming grief, sadness, anger, and sometimes, a sense of relief. Rachel’s response to Ginger’s death was: “Oh well Mum, come on now.” Then she asked would I be getting her tea soon. I return to the endless refrain that tumbles through my head: I do not know what it feels like to be Rachel. Absolute presumption—how dare I? I do not know what it feels like to be you . I realise that my experiences and yours are unique. And yet as I explained the cat’s death to my then …