Yesterday we learned that the Jason Program (http://www.jasonprogram.org/) is closing it's doors. The Jason Program is the only one of it's kind. They help families with critically ill children live as normally as possible. They have lost their funding and were unable to find a new sponsor to help with their operations cost.
They have a wonderful nurse, Greg, and social worker, Shelly, and doctor, Dr. Gary, who travel the state (the whole state) visiting families in their homes, making sure that the needs of the sick child are met along with the emotional well being of the rest of the family. I have spent many days in my living room visiting with them and venting my frustrations, my worries, my sadness and even my joys over having a terminally ill child.
Even after Savannah died they would check up on our family and make sure we were doing ok. They still visited us in our home and Kiara at school. One day shortly after the funeral Greg sat in my living room and I was sharing with him my sorrow over people not mentioning Savannah because they thought it would be too painful for me. Or how some would seem uncomfortable when I would mention her; like talking about a child who had died was taboo. He promised me that he would always talk to me about my daughter.
Greg and Shelly came up for one final visit today. It was sad for our family to have to say good-bye, they will always hold a special place in our hearts.