A special contribution by guest blogger Lisa Miller
Lisa shared her story via our Stories of Hope questionnaire.
What would you say to a parent whose child has recently been diagnosed with PWS?
Our son is 5 now, but I remember the dark diagnosis days so well. The first year is the hardest, but it gets easier. You may feel overwhelmed and feel an intense pressure that you have to do everything "right."
Do your best, certainly, but do what works best for YOU and YOUR family. There is more than one way to do something right. What works for one child and one family may or may not work for you. It will take some trial and error. Your child is still an individual with their own strengths and weaknesses. Trust yourself and your own parental instincts!
PWS will be a part of your life now, but it does not have to take over your whole entire life. You will still be happy and live your normal life, but you will find a new normal. Keep your expectations high, but prepare yourself for anything. Even though you may do everything "right," your child may still struggle in one area or another. Give yourself some grace. Try not to compare your child to anyone but the progress that they make themselves.
Stay positive and optimistic and focus on the good! It can be a bittersweet road, but your child will bring you more joy than you can imagine! Believe in yourself and believe in your child. NEVER give up your hope! You got this!!!
Do you have a story of hope to share with others about your experiences with PWS? Send it to us!