“One positive program that has offered me a sense of connection is Parent to Parent (PAVE).”
November 2, 2011
Eight years ago I gave birth to my first child. His name was John and he lived for 5 days. It is needless to say that this time in my life was marked with a number of emotions. There was grief, joy, love, sadness, stress, and hopelessness- to name just a few. The death of my child has never become easier to bear, but it has changed in nature. Since that time, I had another boy named Davy who is a healthy (and very energetic) six-year-old. Jeffrey was my next child. He would have been four this year but died at birth on my 33rd birthday. My last son is Randy, who we call Junior. He is three and diagnosed with Prader-Willi Syndrome. This is a genetic disorder with delays in cognitive, physical, and behavioral benchmarks. The focal point of this diagnosis though is an inability to control food intake. He will always be hungry. He will never be able to manage this without help. All of this, plus the general living of life, have filled the last eight years of my life with tremendous elation and tragedy.
Not only is Parent to Parent of value as a present program but it has far reaching implications. By helping those in need, we are lifting up our society now and in the future. Please do not cut any of the funding related to this program. It is all necessary. It is all worthwhile. It is all part of the ongoing story of parents who have watched a child die or are doing their best to help a special needs child succeed.
Thank you for your support,