Our daughter was born back in March with a PWS covering her fight cheek, nose, upper lip and eye lid. Looking back, I was doing everything I could to find out more information about what it meant and the possible other associated conditions with PWS. I was frantic, worried, didnt want to be judged by other and spent hours and hours reading articles, following forums and comparing every situation against ours .
Eight months down the road, I have gained better perspective. I wanted to get back on this forum and tell everyone out there not to worry. Life gets easier, it becomes part of your everyday routine and you just learn to handle it. In the beginning, I worried what people would say, I always was looking around to see who was staring out our daughter.
Ella has had a total of three treatments. Two were without anathesia and today she had her first under general anathesia. Both are hard and today I shed some tears as they put Ella to sleep.
I just want you all to know where ever you are that you will learn to deal with it and have inner strength for your child. The treatments, the bruising and the questions have all become part of our life and it does get easier. One mother today in the waiting room was talking about people always questioning them about their son's PWS. She had a great take on it-
"its just one moment in time
We are hopeful that Ella's PWS will continue to lighten and her treatments will become less frequent. As a worried father, 8 months ago- everything gets easier and at the end of the day, when the door is closed to your house or where ever you live, all that matters is the love and support you have for your family.
Worried father no longer