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

''Never mind, when is dinner ready?'' Living with Prader-Willi syndrome T he cat died when Rachel was 15J. 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 19 year old son, I could safely anticipate his sadness. We could talk about our shared sorrow and, with some guilt, the ability now to sling a black jumper on the sofa and know it wouldn't be carpeted by Ginger's shed hair. Of course, it would be wrong for me to expect Rachel to react to Ginger's sad demise on my terms. Could it be simply language? Although Rachel can talk for all her waking hours, perhaps her language does not have the richness and elasticity we need in order to express the intensity of grief. Rachel, I know, experienced feelings of loss, sorrow and regret. I cannot judge the full range or gauge the depth. I know because I experience her as a child charging emotionally—with the full range of pleasure, anger, delight, joy, sadness—through every day. The volatility of living with Rachel's emotions sets an edge on the hours of her wakefulness. It is like sitting in the dentist's chair: all is well for now, but in a second the drill will bite home. This, however, was a real situation for an emotional expression. I …