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I am a bereaved mother of a child who died at age 2 years, from a fatal genetic condition. I am also a white, english-speaking mother. During the two years that my husband and I parented our daughter and did the very best we could, with the information we had and the support systems we were living in, it never once occurred to me that we weren't getting the best medical and community support available. Very likely we were. And very likely that is because my position qualified me as entitled, especially as compared to black parents who are, as Dr. Khaliah Johnson writes, part of a history of systemic racism, neglect, and suboptimal care.
This sentence brought me up short: "Throughout the course of their grief experience, my parents asked themselves on numerous occasions, “Would the outcomes for our sons have been different, might they have received different care and lived, had they not been Black?”" I was never assaulted by such a fear or worry. In fact, quite the opposite. I was able to take comfort following my daughter's death that she had had the very best life possible for her because of the care she received from her doctors and the team we assembled to support her and us. My grief was clean and free of the splinters that festered in Dr. Johnson's mother's heart. How terribly sad and wrong for her.
In my capacity as Executive Director of Courageous Parents Network, where we work with many parents of seriously ill children...
Show MoreCompeting Interests: None declared.