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THE IMPORTANCE OF PEER SUPPORT
We just returned from family 2 family mentor trainings in California. These trainings are designed to further active listening skills, provide education on coping styles and feelings associated with a brain tumor diagnosis and during life after, increase basic knowledge of treatment and common challenges faced by parents, siblings, and survivors and further build the brain tumor support community.
During each training, we are reminded of the feelings faced at the time of diagnosis. Parents talk about feeling forlorn, as if they landed on the moon and could reach no one nor find anyone who understood. They talk about being angry and challenging the beliefs which provided the foundation of life as they knew it. They expressed feelings fear and grief over losing the “normal” they knew. These feelings came back at various times throughout the treatment and well beyond treatment. One mother whose 14 year old daughter completed treatment a year ago, talked about wanting to cry and yell while driving to the hospital for the training and thinking about those first days.
The one thing each person expressed was the importance of connecting to other parents or survivors who had been down the same road. While this is not a community any one wants to join, once a person is part of it he or she can understands things best friends, family members and even professional support people can not. They can provide the practical tips in dealing with side effects, school problems, partners and other children.
We want to say a huge thank you to the families and staff from LA Children’s Hospital, Children’s Hospital Central California and We Can. If you are interested in being a peer mentor, please contact us at 866-228-4673 or firstname.lastname@example.org.