RE: A Mother’s Tears: Contemplating Black Grief

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, we speak of parents advocating for their child, including making medical decisions about interventions, and working to have their child seen and their voices as parents heard. This is what all parents want. That the most difficult work imaginable be at risk because of centuries of structural racism is certainly immoral and a violation of what it means to help and heal.

I deeply appreciate this essay from Dr. Johnson for how it combines her family's personal history, including that of multiple child deaths, with her own professional choices and experience, with what we see going on societally today.