Posted on 11 December 2014.
Charlie Waller and his mother Abigail.
Charlie Waller loved trick-or-treating, pirates, his kindergarten class at Marble Elementary, his sister, Esther, and so much more during his all-too-brief life.
He died last December from an inoperable brain tumor that slowly robbed him of his ability to play, to walk and to see, but never his kindness. His parents, John and Abigail, have turned to the Internet to help them harness Charlie’s spirit and his kindness by launching a new social media campaign, #CouragetobeKind, in Charlie’s honor.
Charlie, a patient in Hospice of Michigan’s pediatric program, battled his illness for two-plus years, all with the help of family, friends, and a supportive care team. Throughout this experience, John and Abigail relied on social media to keep far-flung family and friends informed of their son’s condition. Abigail launched a blog where she shared imaginary letters to her son, chronicling their journey with courage, profundity and poignancy.
With help of Abigail’s father, they launched the nonprofit Art for Charlie Foundation to raise both awareness and funds for pediatric hospice. Facebook and Twitter accounts were opened to amplify the site and promote its annual art show and sale, as well as this year’s statewide conference on pediatric hospice and bereavement support.
“Social media has become a strong outlet for public mourning,” said Karen Monts, director of grief support service at Hospice of Michigan. “It allows people a medium to express their feelings when experiencing a significant loss, and it also provides an opportunity to ensure the memory of a lost loved one isn’t forgotten.””
When counseling the bereaved, Monts often refers to the Six Tasks of Mourning, as defined by Dr. Alan Wolfelt, grief educator and author of Healing the Bereaved Child. Monts explains that social media can help in achieving each of Wolfelt’s tasks:
Task One: Need to acknowledge the reality of the death. When family members hear word of a loved one’s death, many immediately turn to social media as they process the news. The reality of someone’s passing becomes clear when seeing the details of the death, finality of funeral details, and posts of love and support by family and friends.
Task Two: Need to approach the pain of loss while being supported. Social media not only provides a platform for the bereaved to express pain, but it also gives family and friends the opportunity to offer words of support, which validates and normalizes the grief they feel.
Task Three: Need to remember the person who died. Through blogs, posts and picture sharing, there are countless ways that the bereaved can use social media to share memories of their loved ones. Feedback from family and friends also lets the bereaved know those memories are treasured by others.
Task Four: Develop a new self-identity. This is often one of the more challenging tasks of grief. What role do you play in life now that your loved one is gone? Through open discussion of the deceased life on social media, the bereaved can develop a better understanding of the many roles the deceased played in the lives of others. The bereaved can use that information to determine the new roles they will take on in their own life.
Task Five: Searching for meaning in what has happened: When a loved one dies, it may prompt questions regarding the purpose of life and how such a tragic event could happen. Social Media allows the bereaved to express their questions, concerns and doubts while providing reassurance as one searches for a new sense of purpose or clarity.
Task Six: Experience continued support in future years. Social media provides the perfect medium for the bereaved to share feelings of grief, regardless of how long it’s been since a loved one died. It might be recognition of a birthday or an anniversary of death, or it could be a simple statement like “Really missing my mom today. “Not only does expressing these feelings help the bereaved, but family and friends who see this public expression often respond with encouraging words.
Monts adds that in addition to helping cope with grief, social media can simply provide the bereaved with a needed distraction. However, even with all the benefits, she warns that there can be negatives to using social media in the grieving process.
While publically expressing grief may be helpful to one family member, seeing these reminders on social media may be difficult for a family member who grieves more privately. While Monts advises people to consider others when expressing grief publicly, she believes the benefits of social media in grieving far outweigh the cons.
For the Waller family, social media continues to be a source of solace, education and hope. The launch of their Courage to be Kind social campaign acknowledges Charlie’s gentleness and wisdom in advocating kindness to all. Wise beyond his years, he argued for tolerance for those who were unkind, explaining that some children (and adults, we would add) have to learn to be kind just as they have to learn their ABCs.
The vision of the campaign is that it will create a system to allow people to report acts of kindness anonymously on social media. To learn more about Charlie’s story and #CouragetobeKind, visit artforcharlie.org.
Hospice of Michigan offers a variety of grief support and educational services. These programs are available to all families involved with Hospice of Michigan, as well as the community at large. For more information, visit www.hom.org.