I responded to a survey from our state's public health leaders which asked for public input in the form of sharing a story. My story's development was prompted with the instruction 'Remember a time when you felt like your family or another family you know was thriving or just surviving. Share an experience describing what was happening at that time in the family.' Although all responses were submitted anonymously, I have Peter's (my son's) permission to share it here.
Thank you Peter for all you continue to teach me and inspire me to become!
Pictured above are Peter and Audrey in 2010 at the Roosevelt Baths & Spa, Saratoga Springs, New York
PLEASE NOTE: I could have chosen a different survey option to guide the development of a story prompted by "Think about something that happened within the last week that helped or hurt you, your family, or a family you know. What happened?" but that was not related to the experience I decided to share.
I was grieving the death of my daughter (guess you always grieve the death of a child) who died at 15 from rare disease complications. My college age son, my only other child, met me at a "public input" meeting for Kansas Children and Youth with Special Health Care Needs (CYSHCN) Program's needs assessment. There was a facilitated discussion involving adolescence. I honestly didn't expect him to share anything but he surprised me by talking about impacts experienced as a sibling of CYSHCN. He explained that especially throughout adolescence, how he never felt he developed a sense of identity other than being the brother of a sick little sister. He relayed, whenever people would see him, they would ask "how is your sister?" He further explained, he felt no one even knew what his thoughts or interests were because they never asked about him specifically, just about his sister.
He described how hard it was to try to develop a positive sense of self, self-respect, identity and independence within those constraints. It crushed me to hear him talk about this and I realized I was merely surviving throughout these years, as was my daughter, as was my son and husband and that trauma looks and feels different from each person's perspective. It never occurred to me he was so deeply impacted in that way since the typical indications we are familiar with (he got great grades in school, no disciplinary issues, no car accidents, no alcohol/substance use etc.) did not raise red flags. He also didn't complain, he merely did all he could to help his sister and parents and be a "good kid" even though he was mostly on his own throughout many unplanned hospital stays. By standard measures, he seemed to be thriving. I had no idea how he felt during those tender years because we never asked about how he was coping because we were surviving too.
As we look to use trauma informed approaches, it is vital that we commit to assess and support siblings of children with complex illnesses whether they "qualify" for a state program or not. We know we can anticipate transitions from infancy, toddlerhood, childhood, adolescence and adulthood so we need to normalize anticipatory grief for siblings of CYSHCN and let them express their concerns without assuming responsibility for "adding to" mom's/dad's/sibiling's stress. Their feelings count too and I now have the perspective to help others and help my son as we continue to deepen our relationship.
This also shows the value of public input. My son's perspective not only gave me new insight, it informed the group we took part in and highlights how we must continue to provide opportunities for supported public input.
Please Share Your Story Too
Health Care Professionals, Service Providers, Supporting Organizations, Families, and Self-Advocates who would like to contribute their experience serving a family/individual in Kansas or share their own story (or stories!) just need to click HERE.
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