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 of the big, floppy ear varied greatly from the one telling of a muscular column of a leg.

Twelve different stories. One elephant. All different. All true.

It’s not much of a reach to compare this to our experiences with PWS. Our children all have a diagnosis with the same name on it and yet we sometimes hear so many different stories about what PWS is and what we should do about it. All of those stories describe PWS from the point of view of the person telling it and his or her experiences with the child involved. If our child is a food-seeker, then PWS is about food seeking. If our child struggles with low muscle tone, then our PWS is about that. If behavioral issues are ruling our lives, then this describes PWS for us. For many of us, our report on PWS is a bit long because our children are affected by multiple PWS issues.

Whatever your story, whatever your point of view about what PWS is and what should be done about it, maybe our best bet is to remind ourselves that our elephant, PWS, is a powerful, yet personal, force that each of us must deal with in our own way. Just like there is not just one symptom that describes PWS, there is not just one way to deal with it. We each find appropriate treatment for our child’s unique symptoms. We each develop support systems that help our families function considering our individual circumstances. We each decide when, what, and with whom to share the details of our children’s diagnosis. Most importantly, we each respect each other’s judgment and are infinitely empathetic with those who are walking this path with us, no matter how different our stories or how differently we handle things. That respect comes from deep in our hearts, from a place that knows all too well the shared pain we all feel.

Every one of us have been hurt by PWS. We deal with its effects on our children, our families, and ourselves every single day. Having so many others around us who, although wounded, are doing everything we can to eliminate PWS’s hold on our children’s future with our individual and our collective efforts, goes a long way toward sustaining us all through the most difficult times. As we face off against PWS, we know that we are not alone, that we are armed with our own strength and the strength of so many respected others who are in this battle with us.

So, when we hear others describe PWS or how they have decided to handle it, and it is different from our personal experience or decisions regarding PWS, remember that what part of the elephant you are standing in front of makes all the difference.

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