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EDONA, Ariz. — It’s a two-hour drive from the nearest big airport — through high desert and tumbleweed, through cactus-dotted hills, and, finally, red rock walls and a twisting residential road — to the room Joanne Cacciatore built.

It was designed to let the outside in: open space, high ceilings, and big windows —for light, yes, but just as important, for access to the dark night sky. Pillows, Tibetan singing bowls, and Oriental rugs fill a meditation space. From an adjacent wall peer the faces of more than a hundred children: toddlers, tweens, babies pressed to a mother’s chin.

Parents come here for time with Cacciatore, who teaches courses about traumatic grief at Arizona State University and who counsels those trying to cope with it. They travel this far largely because society generally offers limited physical and emotional space for bereavement.

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Cacciatore counsels parents who have lost children of all ages but specializes in helping in cases of perinatal death, which includes the cases of stillbirths and babies who die soon after birth.

“Parents leave the hospital and face an unsympathetic world with preconceived notions about the loss of a child and people who are not afraid to share those judgments,” she said. “It’s utterly stunning.”

Many parents build deep emotional bonds with their unborn babies, and for a mother in particular, “it’s as physical a loss as a human can endure,” Cacciatore said.

“Her body turns into a paradox: The body is producing breast milk. It’s releasing oxytocin — the love hormone — and she has nowhere to enact that love. And socially, she’s anathema. People see she’s not pregnant anymore and it’s like, ‘Oh, you had your baby?’ Day after day after day.”

While some hospitals offer counseling services to bereaved parents, others do not. Cacciatore founded the MISS Foundation in 1996 to serve parents who experience a child’s death. Through the foundation and through her private practice, Cacciatore counsels parents to “stay with their emotions until they learn to trust themselves.”

Trust themselves with what?

“That they won’t die from the pain they’re feeling,” she said. “People [can] learn to not just tolerate but actually value their emotions, even the painful ones. Because it’s part of being human.”

While Cacciatore creates physical space for the grieving, others have found different ways to create spiritual space for parents in bereavement.

In 2005, the Canadian singer-songwriter Craig Cardiff, for instance, read about Now I Lay Me Down to Sleep, a nonprofit organization that photographs parents with their babies, shortly before or after the children’s death, as a memorial.

Craig Cardiff, a Canadian singer-songwriter, performs his song about perinatal loss through a parent’s eyes. Dom Smith/STAT

In a cabin outside of Wakefield, Quebec, on a Gibson J-30 guitar his parents had bought for him, Cardiff composed “Smallest Wingless,” which tries to capture the experience of perinatal loss through a parent’s eyes. (The chorus: “We said hello at the same time we said goodbye.”)

The song later found its way to YouTube, where parents have posted remembrances of their children. Many have flooded Cardiff with emails thanking him for the song.

Cardiff said he takes quiet pride in knowing that “four minutes of air being pushed through speakers can change our chemistry and help us to grieve better.”

He hadn’t yet recorded “Smallest Wingless” when, in July 1994, Cacciatore’s own daughter, Cheyenne, died 15 minutes before being born. In the weeks and months that followed, Cacciatore listened to a mixtape of “the saddest songs.”

She said she’d “pull out pictures and her blanket and booties and just wail.”

Today, Cacciatore deems listening to a song like Cardiff’s as just one kind of “micro ritual” that can help the grieving.

For her, another ritual was getting a tattoo as a memorial. On her back, she wears a condensed quotation from St. John’s “Dark Night of the Soul.” (Her version: “The soul still sings in the darkness telling of the beauty she found there: daring us not to think because she endured such tortures that she ran any more the danger of being lost in the night. Nay, in the darkness did she, rather find herself.”)

She said perhaps the most meaningful ritual was one in which she performed anonymous acts of kindness.

“While doing that, I remembered my child, and in my heart I whispered to her: ‘This is because of your love,’” Cacciatore said. “She became very much alive in those moments.”

“I don’t know what happens when we die, but if there’s a remote possibility I’ll see her again, when I close my eyes for the last time I want to open them and I want her to say, ‘Mom, you did me proud.’

“I want her to know that I brought her love to the world in that way. That’s the best I can hope for, because I can’t have her back. Not here, right now.”

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  • ? still trying to figure it out. the pain of losing my dad decades ago… buried inside me.. sometimes down very low near my ankles.. other days is much higher inside me closer to my heart.. the pain, sadness, emptiness comes fast and hard.. it’s as though i’m back in that day when i was ten.. i was told my dad passed away.. i ran out the front door and down the street crying… i refer to it as “carrying sadness”.. Those feelings get triggered often… i guess i’m still running down that street except it’s the street of life … i’m trying to figure it out and get it out of me.. i’m still that hurt little kid ( i just hide it in a mans body).. i want to suggest to those who have lost a love one as a young child please talk about it to family, friends, health worker, get it out of you the pain, hurt, sadness, emptyness, abandonment or what ever it is your feeling from your lose.. I don’t want anyone carrying it like i have been doing for 41 years …. i send my love to all who have lost someone and are struggling to find the peace inside …. the kid-inside ?

  • Bob, the trip to the spirit-filled Sedona grounds awakens the mystery of a journey once taken… Thank you for touching story, beautifully written.

  • I am a white coated one. I’ve been there, on both sides of the curtains, not found it easy to cry. Thanks for this, finally have.

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