This is part of WTOP’s continuing coverage of people making a difference from our community authored by Stephanie Gaines-Bryant. Read more of that coverage.
When a family has a child dealing with a terminal illness during the holidays, they also live with the harsh reality that their child may not be around for the next year’s festivities.
Brian Berger, vice president of care continuum for Hospice of the Chesapeake in Maryland, said parents ask themselves questions like “What can I do with the time and space that I currently have?” and “What experiences can I have with my child?”
He said Hospice of the Chesapeake helps parents create memory-making activities like handprints or thumbprints, or creating something together depending on the capacity and age of the child.
Berger also said activities like making art pieces, writing or storytelling are options for families that live on.
The organization, he said, helps parents work through the emotional aspect of having a child with a life-limiting illness and understand how to care for a child and themselves. The organization also offers grief support and counseling year round, as well as referrals and information on access to care.
Those resources can be really important for parents anticipating the death of their child, who may believe something feels unnatural and unfair. Eventually, he said, have to ask themselves, “What does life begin to look like after the death of my child.”
Hospice of the Chesapeake also helps parents navigate the challenges that may arise for siblings of a terminally ill child. It does so by “giving families age-specific language that supports what they’re seeing (and) what they are experiencing,” Berger said.
He said the organization tries to help parents normalize the idea that it’s OK to experience joy around the holiday in addition to their child’s circumstances, which can be hard if parents are experiencing feelings of guilt.
Hospice of the Chesapeake has four locations in Anne Arundel County, Calvert County, Charles County and Prince George’s County, Maryland. For more information about their programs, you can call 410-987-2003 or email info@hospicechesapeake.org.
