There is no one fiercer or scarier or more real in this world than a dragon mother. Dragon mothers are mothers who grieve for children who have died or are terminally ill. Dragon mothers breathe fire and scorch everything in their path.
Emily Rapp is a dragon mother, a term she coined two years ago in a stunning essay simply entitled “Dragon Mothers.” Rapp is the mother of Ronan, an almost three year-old boy who died last month from Tay-Sachs disease. In her new memoir The Still Point of the Turning World, Rapp writes that at nine months her son was diagnosed with Tay-Sachs during a standard eye examination. The specialist had seen Ronan’s particular symptoms only once before.
Rapp was shocked. During her pregnancy she had been tested twice for Tay-Sachs, and both times the test came back negative. She later learned that a standard Tay-Sachs screening covers only the nine most common mutations. Rapp, who is not Jewish, and her husband, who is, were carriers of a rare mutation. To put this in perspective, fewer than 20 children in the United States are born each year with Tay-Sachs to parents who, like Rapp, tested negative and thought they could cross that worry off their lists.
While Still Point is an elegy, it is also a remarkable book about the signposts of grief. Rapp writes that, “Ronan and I were on this singular path of motherhood-sonhood: one of us knew that the other would not survive. I was supposed to be guiding Ronan through this life and then out of it and into whatever came next, but much of the time I was flailing around in the unfathomable.”
The death of a child is unfathomable and I don’t have sage words for someone who has gone through the agony of burying a child; I can only look to Emily Rapp as my guide. She asks her own excruciating question: “How do you parent without a future?” At first I avoided reading Rapp’s book and tried to skirt the topic of grieving parents altogether. But I found her narrative both raw and compelling and uplifting—things I wanted to share. I learned that parenting without a future is both a despairing and optimistic act. “My task as [my son’s] myth writer,” says Rapp, “was still to understand my son as a person and a being who was independent of me and yet dependent on my actions, my attention, my love.” Rapp’s words also point to the ultimate lesson that Ronan taught his mother: Children do not exist to honor their parents; their parents exist to honor them.
Having a child confirms our mortality and, as Rapp notes, the truth about life is that “it exists side by side with death.” I think the way that we Jews say the Kaddish for a child shows how acutely aware we are of this intimate pairing of life and death. While one is obligated to say the Kaddish for a parent for 11 months, a parent is only required to say the Kaddish for a child for 30 days. There are practical reasons for that short formal period of mourning that hark back to a time when infant mortality was high, making the recitation of the Kaddish necessarily truncated. There was also the practical consideration that spending almost a year saying the Kaddish is difficult for parents who also have other children to care for. Yet grief doesn’t have an end-date.
Upon hearing about someone’s death for the first time, Jews say Baruch Dayan HaEmet—Blessed are you G-d who is the true judge. But how can one utter those words when a child has died? The theologian C.S. Lewis asked “Where is G-d during one of the most disquieting symptoms [of grief]?” I turned to a wise friend for advice about G-d’s seeming absence. “If you will allow,” she wrote to me, “I will offer instead of Baruch Dayan HaEmet the words, HaMakom Yinachem. May you find comfort in the embrace of God, who, while we may never understand the tragedies of the world God has created, is ‘with’ us in the sadness.”
My friend’s words make me think about the limits of empathy. C.S. Lewis takes that notion a step further. “You can’t really share someone else’s weakness, or fear or pain,” he writes. By way of illustration, Rapp adds “You can’t really test the strength of a rope until you’re asked to hang from it over a cliff. There have to be stakes.”
I think Emily Rapp is asking her readers for something deeper than empathy or sympathy. She raises the stakes by asking us to “look straight at [death] without blinking.” Perhaps openly grappling with death is the radical act of empathy we are obligated to bestow on grieving parents and dragon mothers.