Our primary care pediatrician was our biggest support.
The mom of a child with Sanfilippo talks about how, even with all the specialists, the pediatrician was their most important and supportive care provider. He coordinated the specialists and was the main person she called. He saw her as a normal child, not a child with a rare disease.
Think about what you need.
Grief counselor Nancy Frumer Styron talks about the variety of ways that parents find and seek support from family and friends (and are also disappointed by family and friends) -- people can surprise you. A mom shares where she sought and found support and how beneficial it was.
The communication piece is very important.
Grief counselor Nancy Frumer Styron discusses how it is common for parents to feel like friends and family have let them down, and that it is therefore important to communicate what the needs are. We can't expect them to be mindreaders. A mother shares her approach--"tell friends and family what you expect."
Don’t hesitate to say, Somebody help us keep it all together.
A father talks about how critical it is for his family that the marriage is strong amidst the stressors, and that to do this, he and his wife have sought help from a professional counselor. "We talk about so many issues. And it helps, including in the care of our little child."
Chaplain: I encourage parents to connect with other parents.
A hospital chaplain discusses the value of parents connecting with other parents: beautiful little connections and relationships can be made that ease the loneliness and sense of isolation. These connections can help parents make meaning: Extraordinary people come into our lives because of these children.
We put our heart out there and they shared it back with us.
Parents of a son with SanFilippo Syndrome talk about how open they were about Ben and his prognosis, how comfortable they were talking about it, and because of that they had a lot of support because people felt comfortable with Ben and the disease and with the family. It was a great life-embracing, almost spiritual thing. He was open, we were open, he had a way of moving into people's hearts and spaces and we just followed his lead and it gave us strength."