This post came to us from Brenda Miller, the Parent Coordinator at Brandon NICU in Michigan. Brenda has been in her role for many years, and has been a mentor and a support to thousands of NICU parents. She has also inspired several parents to take on support roles within hospitals. This post she wrote, which originally appeared on the Vermont Oxford Network Family Matters blog, really resonated with us. We thought it would be helpful both for graduate NICU parents working with NICU families, and for families in the midst of their NICU experience.
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[dropcap]E[/dropcap]arly in the process of gathering resources for our NICU lending library, I happened on a small book called Ambiguous Loss, Learning to Live with Unresolved Grief, by Pauline Boss. Boss writes, “Of all the losses experienced in personal relationships, ambiguous loss is the most devastating because it remains unclear, indeterminate…those that suffer the loss have to deal with something very different from ordinary clear-cut loss. Melancholia, or complicated grieving, can be a normal reaction to a complicated situation…. The inability to resolve such ambiguous losses is due to the outside situation, not to internal personality defects. And the outside force that freezes the grief is the uncertainty and ambiguity of the loss.”
Understanding my own confused feelings of sadness and joy associated with my daughter’s early life has been an ongoing process. I can only hope that it has made me more sensitive to what parents in our unit are going through when they’re here. During my family’s NICU stay I felt the loneliness of having experiences that seemed foreign to most people: not giving my daughter her full share of time in my womb, having motherhood begin by witnessing her undergo painful pokes and procedures, and pumping my breastmilk for absolute-ever before she finally began nursing.
I think that many human beings are wired to be helpful, but how comforting are we when we minimize another’s distress in the interest of trying to reassure? When I hear a parent’s concerns addressed with comments like, “Be thankful that your baby isn’t the sickest one here.” or, “At least you avoided those horrible last months of pregnancy.” or even (by me I confess), “It’s so great that you can be here in our new NICU rather than in our old, horrible unit”.
In last month’s Family Matter’s blog, Ginny Schafer said it perfectly: “I think that we can try and remember that our NICU families are in crisis ALL THE TIME. I think that we can learn to be more compassionate. But mostly, I think we can learn to hush up and just listen.” It’s helpful for me to be reminded that active listening provides two services: I can learn about what parents may need during this difficult time for them, while at the same time helping to support their healing process.
I was not surprised to read that as an antidote to ambiguous loss, Boss recommends listening to stories. She says, “Family therapists and medical professionals must listen to family members as they tell us what their ambiguous losses mean to them, for their stories will vary with culture, gender, race, ethnicity, sexual orientation, and even age. In their narratives will be clues about the source of their distress and thereby the meaning of it: are they upset because they can’t figure out what is happening? Or are they distressed because they feel helpless and guilty? By listening to their stories we would gain, not only an understanding of what they are experiencing, but also a real appreciation for their ability to survive and even transcend the pressure thrust upon them by outside forces.”
Even seasoned graduate parents, years after our NICU experiences, sit together and relive our experiences again and again, crying tears of recognition and deep empathy. The feeling of “knowing” each other is strong. And I can only imagine the restorative process taking place as we tell these heart-rending stories and pass the tissues.
