These words are taken from a listserve posting by Oneida. She is a friend of a child with PWS and brings her talent and wisdom and heart to our cause. We are lucky to have her and many others like her.
"So yes, there is much sadness there as we are able to see more clearly the challenges that PWS creates, but in the clearer seeing I think there is also hope. It reminds me of that wonderful line from one of T.S. Eliot's poems - So the darkness shall be the light, and the stillness the dancing. There are many ways to interpret that line, but in this situation I'm inclined to take it as a reminder that there is light resting and waiting even within the deepest darkness, dancing even in the most profound stillness, and - in terms of PWS - hope even within the wrenching sense of loss that naturally arises as we understand better what those with PWS must struggle with. For me, it is important that I sometimes stop to acknowledge and let myself fully feel my sorrow at the difficulties posed by PWS, but I also need to remember to honor and celebrate the determined dance of life within each child with PWS and allow myself to feel hope's yearning within my sadness. All of that - the sorrow, the celebration, and the yearning - are wonderful goads to my efforts to figure out what is going on with PWS and what might be done to move things towards more balance. For the mothers and fathers of those with PWS, I imagine the sorrow, celebration and yearning, so magnified as they are by a parent's fierce love, likewise fuel their determined efforts on behalf of their child."