I am frequently asked by parents what the future will bring- "Will my son ever learn to read?" "Will my daughter ever fall in love?" "Will they ever see a day when they can live on their own?" "Drive a car?" "What if they start having all of those behaviors that people talk about?" "What if they need more than I can give them?"
My answer is, don't worry so much about it. I know that it is easier said than done but you have what it takes to do this, whether you know it or not. Your child is amazing and no matter how bad the day has been he or she is worth everything that you go through to make them the best kid that they can be. I have had the honor of knowing parents of newborns with PWS and watching them raise their children to young adulthood. What I have learned from them is that worrying about 5 years from now isn't nearly as helpful as focusing on 5 minutes from now. As bad as the days got, and there were very bad days, their kids have grown to be loving, funny, creative young men and women who still have bad days, and that's ok. I am a firm believer in "you don't get more than you can handle" because I have yet to see otherwise. So during the very bad times hold onto what's good; your child's smile that could melt the heart of the greatest cynic, their ability to make friends with perfect strangers within minutes and their perseverance that allows them to meet challenges with the courage unmatched by anyone.
The future will bring what it brings and you'll be there to give everything that you have because that's what you do. You're the parent of a child with PWS. There are not a lot of you but your community is strong and your children are stronger. Reach out for help when you need it and offer help when you have the strength. And as always, we are here when you need us, for support, advice or just to listen.