“As with his birth and at different times during his life, Michael’s death and all related aspects threw our family onto an emotional rollercoaster. Although naturally shy, I had found the best way to cope was to try to be brave and seek support. The end was no different. Simply sharing the events as they unfolded by phone or email brought strength and guidance from family, friends, the CdLS online support group and especially the CdLS Foundation staff.”
–Excerpt from When Angels Take Flight: The Loss of a Loved One with Cornelia de Lange Syndrome
Each parent and family grieve in their own unique way. The CdLS Foundation understands this and wants you to know that you are forever a unique and treasured part of our community. Every member of the Foundation staff is always here to listen, support and help guide you on the complicated journey ahead after losing a loved one with CdLS.
Many families also have found it helpful to connect with other parents who have experienced a similar loss. The Foundation offers a 10-parent network of caring individuals who serve as grief support volunteers with whom we can connect you when you are ready. Our Grief Advisory Task Force is also exploring new and even more meaningful ways that we can support grieving parents and families. Our aim is to meet families where they are on this difficult journey — and make sure they know we are with them every step of the way.
Please do not hesitate to contact one of our family service coordinators at 800.753.8166 or familysupport@CdLSusa.org.
The CdLS Memorial page honors all those who have passed away. It is a special place for family and friends to share happy memories or say a few words about the life of their loved one. Please take a moment to see those who are gone but remain forever in our memories and hearts.
Resources for Parents:
CdLS Angels Facebook Group
This group is a wonderful place to be open, to talk about how you handle the grief process, and get support from people who have walked in your shoes.
This resource is a public media initiative aimed at creating a more grief-aware society by validating the experience of grievers and helping to guide those who wish to support them.
The Compassionate Friends
A nationwide non-profit designed to provide resources to families who are coping with the death of a child.
Bereaved Parents of the USA
Connects grieving parents with other bereaved parents, grandparents and siblings for one-on-one support.
Provides downloadable PDF resources of grief support information that were created for everyone, suitable for children to adults.
Offers a wide variety of articles about general grief and bereavement.
New York Life Foundation
Helps families and educators identify tools and national and regional grief supports.
To help understand the grief of children:
National Alliance for Grieving Children connects professionals, consumers and volunteers whose mission is to support children and teens through the grieving process.
For Children and Teens:
The Dougy Center offers peer-to-peer support groups and resources for grieving children, teens, and families.