Crystal
Crystal, mother of Sydney (age 13). Sydney has severe cerebral palsy. Sydney is trached, on a ventilator, and fed via G-Tube.
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Sydney has totally changed the way I look at life: there’s gratitude, and also the flip side.
Spirituality: It’s about my relationship with God, not religion; and the power of Prayer.
Advocating for my child: “If I don’t feel that provider is safe or respectful of my daughter, I go ahead and have them removed.”
Finding my voice as my child’s advocate: “I’m her mother, her father, her doctor, her nurse, I am her everything.”
Expressing emotion in front of the medical team, as a Black parent
Palliative Care: “Nothing is forced. They listen to what I have to say.”
Coming to a place of acceptance, over time. “OK, this is my life now.”
The big brothers stepped up. “I thank God for them.”
In the absence of enough nursing, being a nurse; and then finding ways to avoid burnout.