As if I Could Have Saved You

It was late in the evening when I finally got around to meeting you. We had been consulted for your 9-year-old boy with metastatic disease, with no curative options, and in pain. We were also told, “Mom is difficult. She doesn’t trust us, She is in denial.” As an interdisciplinary pediatric palliative care team, we would usually have met you with both medically and psychosocially trained clinicians. But it was late in the day, so I met you on my own. Your son appeared small, sitting in his hospital bed, and you—not much bigger in size than him—filled the room with your protective energy. I immediately felt drawn to you. The feeling, I think, was mutual.

You shared your experience caring for him all of his life. You described being his voice, his champion, and his advocate since his diagnosis four years ago. His previous medical care had been in another state. With this relapse, you had been told there wasn’t anything else they could do. So you drove him to a place you hoped could help. You shared your worry that the answer—even here—would be that there isn’t any treatment. You spoke openly about your grief, admitting out loud that he might die. You also expressed worry that people would see this Black boy and his Black mom and that even if there is something that could help, we might not give as much attention to his Black life in the way we care for the lives of other children. I acknowledged our racist health system. I offered that when you experience racism here I want to know, and I want to help. I wish I could have said, “we” want to know and “we” want to help, but I know that isn’t always true. So perhaps I created a split from the rest of our health system, but after all you shared, it felt dishonest to pretend otherwise. I called you later that night to check on your son’s pain. His pain had lessened. You heard my dog barking in the background. You thanked me for thinking of your son when I was at home. The next day I returned with our team social worker and brought you a journal, sharing that many parents write down their thoughts and important questions. With tears in your eyes, you thanked me for seeing you.

Two days later, I returned to check in on your child’s pain, to help navigate new decisions to be made, and also because security had been called to your bedside overnight. As I walked onto the ward, staff shared that you had called a nurse a foul name in the middle of the night; others said you cursed at everyone and that you obstructed your child’s care. This was the day you had been told that there were no curative options—not here, not anywhere. You asked for quiet in the room that night—to sleep and to grieve. And in the middle of the night—as is true at most every hospital—we were not quiet. We came in. We turned on the lights while checking vitals. We emptied the trash at 2 am. We chatted loudly in the hallway, catching up with colleagues during our workday—your night. I cannot imagine what this laughter and living must have felt like to someone whose world was dying. And you turned your frustration towards us. In the morning you were apologetic. But it was too late. The system had been waiting to label you as angry.

I tried to fill in the narrative, explaining you had received the most difficult news and you had a bad night. I heard back that your “behavior is unacceptable.” I worried aloud with the team that our biases about Black moms being angry and mistrustful were filling in space that would have otherwise held your sadness. I was told that “maybe other units in the hospital are racist, but here, on this unit, we love all our patients, and we don’t see color.” I replied that I wish that were true.

Over the coming weeks you continued to be blamed for your grief. Where we could have helped you stand up beside your child’s bed, we instead tried to push you down. Although I was not in service any longer, you often asked about my dog. Perhaps splitting me from the team, sharing this personal thing you knew about me. Perhaps I invited you to do this when I separated myself from the health system in recognizing our racism.

Despite your inquiry to the team if I was around the hospital, I did not come by to visit you when I was not on service. I was worried that others might think I saw myself as some sort of savior for “angry” Black moms. And it’s true, I did have a desire to be the one who could save you. Although I am not white, I have the power and privilege attained through our white supremacist system, and like all health care workers, I have a strong desire to fix. If I couldn’t fix your child, perhaps I could still find a way to be the hero of your story.

After your son died, I called you. You answered the phone, and I tumbled out the words, “I am so sorry. I don’t know what to say. I want to say something, but I know nothing I say can provide the comfort I want for you. I am so sorry.” We cried. You shared your overwhelming loss. Then, as so many bereaved parents do, you did the impossible work of continuing living. You spoke of legacy, of learning, and of having no regrets. You spoke of your strength and your accumulated wisdom. I realized you didn’t need me to save you. You never needed me to save you. You only needed us to see you.