Our Community

"We read to know we are not alone." --C.S. LewisI doubt that this author of the Narnia series was talking about email when he said this, but it seems particularly appropriate for us. From my experience, and from what I hear from so many others, one of the hardest parts of PWS for parents and families is the feeling of being alone. We face issue after issue, crisis after crisis, fear after fear, and no one sees the cumulative effect this has on us. Most people have no idea what it takes to get our children where they are and what it takes to keep them there. When our extended family members and our friends are faced with our chronic issues, all they can really hear from us is that everything is "fine." Their capacity to deal with ongoing problems is quite limited. We'd like to tell them more. We'd like to be able to pour out our hearts and have them share our fatigue from yesterday, our challenges of today, and our fears for tomorrow. We'd like them to listen...really listen...and care. Some of us are fortunate enough to have a friend, or a family member, who can do his for us, someone who doesn't tire easily or judge us. This is a rare jewel and should be treasured. For the most part, we deal with our problems alone.This is, to me, the greatest value of message boards like ours. We have built a community of families sharing similar issues, families who are available, sympathetic, and helpful. Our lives are woven together into a cloth so strong that it can support us all. In this place, we are all equal. Our situations in life do not make one of us more important than another. We come in all colors, cross all gender lines, represent all religions and no religion, and you can find us all over the globe. Our common bond is our love for our children with PWS, and that bond is strong. Thanks so much to each of you for the part you play in this community. Whether you are silent or chatty, parent of an adult child or an infant, each of you has contributed in your own way to making this a place of compassion, safety, and help. I depend on this community, and I know you do, too. As we face whatever today brings (and from what I've seen, there's no telling what that will be!), know that, in a very real way, you are not alone. We are all right there with you, cheering you on, offering our counsel, and praying for the best possible outcome from your challenge. You can depend on us today, and always. We are holding each other's hands as we bravely take each new step. Together, always together....Rachel