Solace, Understanding and Strength

Solace, Understanding and Strength

Beyond friends and family, our grandparents found these helpful: 

“My religion turned out to be an important source of support. I sought an answer to the questions, ‘Why me? Why my kids?’. I read a number of books dealing with grief. Elizabeth Kubler Ross’ book On Death and Dying provided me with some concept of the stages of grief. It helped me to pace myself along the journey. Rabbi Kushner’s book When Bad Things Happen to Good People also offered a point of view with which I could relate.” 

“We attended a CdLS conference. We saw for the first time other children with CdLS and their parents and grandparents. We experienced first hand that we were not the only ones in the world with a child with CdLS. We saw the range of the syndrome. We saw     families having fun. We had a chance to talk to different people and share our experience, our thoughts and problems. Best of all, no one had to explain their child to anyone else.”

“We received a wealth of information from the CdLS Foundation. We attended regional gatherings and spoke to other grandparents. We attended a National CdLS Conference. Combined, each of these experiences helped inform us and support us. Of great importance was the opportunity to ‘see the future’ by meeting other families with children with CdLS who were older than our granddaughter and with more experience than we had. They were all important role models for us. I felt they were our own personal trailblazers. We just had to follow their path.”