Touching Video by FPWR Member Rachel Pastiloff

Watch a video put together by new FPWR Member Rachel Pastiloff.

Futures Planning

One of the constants in PWS is concern for the future.  From the very beginning, we worry.  We worry about what yesterday and today are going to mean for tomorrow.  We worry about the future of our child with PWS.  We worry about the future of our other children, and we worry about our own future.  To make matters worse, we even worry about how much we worry!  As always, we need to move beyond worry to planning and action.  There is no better treatment for worry than this! 

 

Elephants

After some interesting PWS chats lately, including our discussion about whether or not to tell others about our children and PWS, I couldn't help but think about the broader issue of how each of us as individuals and families see PWS differently. It reminded me of the old story about 12 blind men standing at various places around an elephant. They were given the task of touching the elephant from where they each stood and then describing the elephant following their experience. Of course, each of the men gave a different, but accurate, report. The man standing nearest the skinny, flitting tail gave a very different description than did the man standing nearest the powerful trunk, and both were different from those who felt the massive, solid body of the elephant. The description