Meet the Waterman Family
When my daughter Hannah was diagnosed with Rett Syndrome in 2004, my family struggled to make sense of what was happening and how we could support her. It’s difficult for a parent to describe what life is like when you have a child with special needs.
At first, the shock and disbelief was indescribable. How could this happen to such an active, vibrant little girl? How was this going to affect her life and ours? For me, the grieving process could not begin because at the time of Hannah’s diagnosis, I was pregnant for our second daughter Hadley. Fear, grief, anger, and heartbreak filled our lives at a time when we should have been celebrating becoming parents for the second time.
My husband Scott and I spent many hours researching what Rett Syndrome is. We wanted to learn as much as we could about this disorder so we could become effective advocates for Hannah. Rett Syndrome is a neurological and developmental disorder that mostly occurs in girls. At first, girls with Rett Syndrome seem to grow and develop typically but then regress and even lose skills and abilities.
Shortly after we learned of Hannah’s diagnosis, we became involved with Vermont Family Network (VFN). My husband and I were shown ways to support Hannah through her early development and VFN connected us to other helpful resources that support parents of children with special needs. We were matched up with another family who had a child with a similar degenerative disorder so that we could ask questions of them and find out how they were able to support their child. This experience was extremely helpful for us.
Hannah is now eight years old. The shock and disbelief we once felt about her diagnosis has subsided. Through our connection with VFN we have joined with other families for support and friendship. We have come to a place where grief has been replaced by happiness, and despair has been turned into hope. Our family now feels complete and thanks to Vermont Family Network, we have learned we do not have to travel this road alone.