There’s this book I bought three years ago, and have been avoiding reading until this week. It is an excellent book by an excellent author, and I highly recommend it, but the subject matter is a little . . . intense, to say the least. And, personal, too, in the case of our family.
When my wife was in the antepartum unit with pre-term labor in the 21st week of pregnancy, it looked like our son was about to be born. At that point there was no hope of survival for more than a few minutes outside of the womb. A close friend of ours recommended that we come up with a name for our son quickly because it would make him more of a person and less like medical waste. He told us this because it was well-explained in a book, Naming the Child: Hope-filled Reflections on Miscarriage, Stillbirth and Infant Death, by Jenny Schroedel. I ordered this book, and it came in the mail a few days later, but I always kept it on the other side of the house from me, eying the thing suspiciously, for fear it would attack me with a load of grief that we were on the cusp of experiencing. When it turned out that Gabriel decided to survive despite the doctors’ advice that we give up (several times) we did not have to enter this grief. Maybe after we got him home, then I could read this book, but the sight of the hospital was still causing my and Miri’s stomachs to do flips, so the “it could have been us” factor was still keeping me from reading it.
So I finally read it, and liked it very much, and I cried through most of it.
Schroedel was inspired to work on this topic by an older brother born with spinal bifida who died before she was born. She was always aware of the hole in her family and the effect it had on her parents, but she could not understand it. She says that the subject of death is taboo in our culture, with infant death being the most taboo, calling it “the forbidden room.” The purpose of the book is to help parents and those around them get through this taboo and learn to talk about it in a manner that helps recovery.
At first, I wouldn’t agree that infant death is “taboo,” and I would have said that I would be happy to talk with anyone who has gone through this grief. But then I remember my own experience of avoiding casual acquaintances while our own medical crisis was going on because I had no idea how to talk about it. “Nice weather today, oh, by the way, my first child is near death.” I also have to admit my own aversive tendencies with Schroedel’s book described above basically proves that it is, indeed, taboo.
Schroedel tells the stories of a number of families who have been through this kind of loss, including a SIDS loss, babies born with defects that kept them from survival outside the womb, stillbirths, and miscarriages. She illustrates the experience of grief with particularly descriptive metaphors. One is a woman who suddenly lost her husband in a car accident who lies and moans for hours through the night after it happened, which she likens to labor. That is, letting go is like the pain of labor all over again, and that’s the framework Schroedel uses to describe the bereaved.
She also talks about how a woman’s next pregnancy becomes like two pregnancies — dealing with both the current baby and reliving the previous one, hoping to “get it right” this time. (And this is a point of anxiety for us, if we should be able to have a second pregnancy.) She describes how parents who go through an infant loss have an awful time staying together — one in four couples divorce as a result. Those who do stay together describe it as a second marriage that starts with the loss. Schroedel also tells about how siblings cope, including the story of a 5-year-old girl who says to her mother that she’s been feeling like something has been missing from her life, at which point the mother realizes it’s time to tell her about her twin, who died early on.
This is something I wonder about with our own son, that is, how to explain his bizarre close call when he is older. My computer’s screen saver cycles through photographs kept on the hard drive, including pictures of Gabriel when he was in the NICU. Gabriel will point at these pictures and say “Beehiel,” which is how he pronounces his own name at present. The pictures have him surrounded with wires and tubes and are still startling to us when they roll by, but for him, they’re normal. (As an aside, I have heard stories of NICU children who say astonishing things about their experience. One mother was driving past the hospital, saying to her 6-year-old daughter, “That’s where you were born and they gave you special help for some time after you were born,” and the 6-year-old replied, “Yeah, that’s where they drove nails in to my hands.”)
The book is 130 pages long, and the prose is smooth. I was able to read it in a few hours. I wouldn’t call it “light reading,” but the text is not dense. Characters are introduced with just enough detail to be real, and then they show up again 30 pages later, but they won’t make you feel like you’re having to track everything about them.
Schroedel is the wife of an Eastern Orthodox priest, and she brings her Orthodox perspective to the narrative, although in not an overly preachy way. She makes it clear that death is no friend to us, rather it is a perversion, something not part of Eden, and therefore easy platitudes do not help. This is something that the professors at St. Vladimir’s Seminary (where she and her husband attended) push hard on their students — don’t fall in to the temptation to just “say a few nice things” at a funeral, even if it’s for someone who rarely attended church and whose relatives would prefer the platitudes. But she also talks about Jewish practices, and some of the stories she includes are about atheists, agnostics and Buddhists.
I have two minor criticisms of the book, mostly about things not included. One is that she passes up a good opportunity to reach Dads in her chapter, “Words.” This book is oriented mostly towards women (which makes sense) and she talks about witnessing the pain of another person and being unable to do anything about it. “But this is just what the bereaved need — a person to walk beside them and hear them without trying to fix it.” The “walk with” metaphor appears three times in this chapter. This made me think of my grandfather, who walked two miles a day until he was 93, when he was disabled by a bump on the head (which led to his death, a year later). I would go on these walks with him, and we did not actually have that much to talk about. But, my grandfather was from West Texas, and one of the lessons he taught me is that walking is a Texas kind of talking. I think for men, this “walk with me,” is a literal, physical act that can be part of healing, even if there is not a word spoken. More attention should have been given to the differences in how men and women grieve.
The other thing that I think needed some attention is the question of parents who did have something to do with the death of the infant. That is, what if parents do take the recommendation to abort when the doctor says that things are looking awful and the child does not have a chance, or that the mother needs to do it because her life is in danger? Or, what about a woman with a drug problem who realizes that her drug use has caused her child to die? Or, parents who make an error in providing medication that lead to an infant death? These are cases with a great deal more guilt, when there actually is a rational basis to hang on to what happened as “something we did” rather than to let go.
In sum, this is a powerful, important book that will be helpful to parents in recovery, to clergy and counselors who help them, and to family members around those who have had to deal with a loss. This book looks death in the face and makes it real, and takes away the spookiness of the taboos we place on it.