Welcome, Grandparents!

Welcome, Grandparents!

You are now part of a new family, one we know you never expected to join. If you are feeling uncertain, confused and isolated, take comfort. We are here to guide you.

As a grandparent you play a very important role in the life of both your child and your grandchild with CdLS. Right now you may be unclear as to what that role should be. This may be a situation for which you were completely unprepared. You may be unsure about how you can help your family. You may not even understand your own feelings. 

You are not alone. There are other people like you out there, people who can help.

The CdLS Foundation recognizes that those most able to understand your concerns and show you the way are grandparents who have been through what you are going through now. With that in mind, we asked our experienced grandparents if they would be willing to contribute their insights to a handbook for new grandparents. No coaxing was needed; they rushed to help!     
The words in this booklet are those of grandmothers and grandfathers just like you, from all walks of life. Openly and honestly, they highlight moments in their personal journeys with their adult children and their grandchildren with CdLS.
Their comments include initial reactions to the diagnosis, their emotional ups and downs during the early days, perceptive observations as events unfolded and, finally, reflections on how their own lives and the lives of their families have been affected. They offer thoughtful insights and helpful coping strategies culled from hard-won experience, freely sharing both the pain and the unexpected joy they found along the way.
We at the CdLS Foundation, together with your fellow travelers, the grandparents whose voices grace these pages, sincerely hope that this booklet brings you reassurance, guidance and optimism, now and in the future.