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More than a decade ago when my first child was a babe in arms, my husband and I watched Six Feet Under, a television show about a family of undertakers who deal daily with death. In one scene, an older woman speaking to her daughter-in-law refers to motherhood as the loneliest job in the world. At that beautiful moment in my life we lived in a modern house perched atop a waterfall deep within a valley. That summer, everything was washed in light, and the humidity rose up and created abundant and miraculous life in every crevice.
I fooled myself into thinking I understood what she meant about lonely, tried to think myself wiser than I was. But in truth, I did not know what she meant. I was taken up with groups: with Music Together, and baby yoga, and nursing support. I loved spending time with other moms at various new mother groups. And I was so grateful. Grateful for my baby, grateful in anticipation of the friends I would make. I did not feel as though the world I inhabited was a lonely one.
Close to three years later, one frigid winter day, my second son was stillborn. During that ice-cold winter, I labored to find my center in groups. I am speaking of groups generally–groups of people, rather than support groups I will turn to shortly. This business of being in groups as a sudden baby loss mom was jarring. I was in a panic when attending a birthday party for two and three year olds. I wept all out of proportion to everything when my son spilled M&Ms on the floor. People looked on with kind concern but with uncertainty too, unsure of how to act in my presence. I was suddenly seized by a kind of social phobia I had not hitherto experienced.
I tried to reach out, but I was suddenly outrageously out of the step with my peers. Birth and death beat on within me, relentless as a metronome. My peers were all pregnant, or nursing, or up all night with tiny children. I became obsessed with my own loneliness, but I could do little to address it.
My nights were spent hand writing long passages from the work of the writer Marilynne Robinson about existing and being alone. One passage I still recall, I wrote it so many times. It went: “[B]ecause, once alone, it is impossible to believe that one could ever have been otherwise. Loneliness is an absolute discovery. When one looks from inside at a lighted window … one sees the image of oneself in a lighted room–the deception is obvious, but flattering all the same. When one looks from the darkness into the light, however, one sees all the difference between here and there, and this and that.” I would mail these passages to friends, and they would very often show up, but we confused one another and had trouble communicating. Ultimately, I often could not effectively receive their kind offerings of help, and I remain the poorer for it.
I was isolated. I stood outside at night and looked at the blueness of the snow that looked to me like the sea but still and frozen and drenched in moonlight. I sought therapy but favored individual over group therapy because of my growing panic in a group. I became inadvertently unapproachable.
I now wish I had tried a little harder to find a specialized neonatal support group. That might have eased my passage in groups of my peers generally. Research shows that, “[T]he stillbirth of a baby can be a debilitating experience for women, inciting feelings of isolation, powerlessness and aloneness in an apparently unsympathetic world … little is known about the experiences a family has after a child dies, especially in the case of stillbirth [emphasis added]. Support groups may play a role in reducing the effects of trauma” (Cacciatore, Effects of Support Groups On Post Traumatic Stress Responses in Women Experiencing Stillbirth).
The best neonatal loss support groups (of which there are many) recognize that helping bereaved families to grieve requires an individualized assessment of the family seeking care. Our responses to loss will be largely informed by our cumulative life experiences. In my personal experience, a tiered approach to assessing families may therefore be helpful in the long run for developing inclusive and effective treatment plans. “[A]lthough it is widely recognized that perinatal loss can lead to psychiatric disorders and complex grief, only a small number of the women who have experienced miscarriage receive routine follow-up psychological support (Kerstig & Wagner Complicated Grief After Perinatal Loss). It is clear that effective support groups for perinatal loss help families cope with the experience of individualized grief and that programs should be available to families with losses at different gestational ages.
It is also helpful for the friends and families of the bereaved to recognize that they can play an important role in healing and recovery. I am the first to admit that I did not always know what to do with people who tried to help me then, but I absolutely remember who they were.
Research has shown that survivors of perinatal loss report that they received the greatest amount of support from spouses, followed by members of their extended families, followed by their friends. Many reported physicians to be the least helpful. Of significance too, is the finding that support groups may not benefit all individuals given the unique experience of people and of their grief (DiMarco, Menke & McNamara, Evaluating A Support Group For Perinatal Loss).
It is said that raising a child takes a village and I would add that so too, does grieving one.
