Joanne Cacciatore has what many would find to be an unbearable calling: to help counsel parents through their grief after the death of a child. As a professor of social work at Arizona State University, the Sedona resident and mother of four grown kids — and one stillborn — is a top expert in the field of child loss and traumatic grief; her vast body of research ranges from maternal depression after stillbirth to fathers’ grief after infant loss and parental bereavement in Native American cultures. She’s founder of the support-giving MISS Foundation, as well as the Center for Loss and Trauma. But as a therapist, Cacciatore, 50, has a more basic if hard-to-fathom focus — to support and guide moms and dads through their darkest days. Recently, ahead of National Pregnancy and Infant Loss Awareness Month, she sat down with Yahoo Parenting to discuss the importance of facing a topic that pretty much everyone wants to avoid.
People don’t like to talk about the death of children unless they have to, but you think it’s vital. Why?
I think it’s so important to talk about it and think about it as a culture, because that helps us get better at supporting people who go through it. Most everyone is going to know someone who loses a child at some point. And the way we respond as a culture will determine the outcome for that family.
What we know is this: People who don’t rush their grief, who have good social support and people who bear witness to their pain and suffering without trying to fix or change them have better outcomes — socially, emotionally, existentially, and spiritually. The healing comes from loving, and if we don’t talk about it and we don’t learn about it, then we’re too afraid. Because what we don’t understand, we avoid.
I can’t tell you the number of parents I work with who say they feel like they have leprosy, even in a small town. They’re in the grocery store, and their child died a few months ago, and they’ll be going down an aisle and they’ll see someone they know well — and that person will actually make eye contact and turn around and walk the other way.
But we have to be a society that can deal with this. The onus of responsibility falls on us, because [bereaved parents are] barely making it day to day. So the way their neighbors treat them, or their churches or temples treat them, the way that the school system treats them and their other children, the way the mailman treats them — all of these things matter.
You suffered a personal loss that drove you to make this your life’s work: Your fourth child was stillborn. Can you talk about the experience?
My other kids were 7, 5, and 3. We were all anxiously anticipating Cheyenne’s arrival — to me there’s nothing sweeter than a newborn baby, their skin and their smell, and you just fall in love with them every single second, over and over. And she died, during birth. They couldn’t find a cause of death. She was 8 pounds, 22 inches.
The room was silent when she was born. They did not try to resuscitate her. I don’t remember everything — it was traumatic — but I remember my legs were shaking uncontrollably. And they handed her to my ex-husband. I had my eyes closed. I was so scared. I mean, I had given birth before but it was very different, obviously, and the ultrasound had said it was a boy and I really wanted a girl. So he said, “Oh my god, it’s a girl,” and I think my maternal instinct took over. I just sat up and reached my arms out for her and he put her in my arms and she was beautiful, she had rolls of fat, I mean she was this very well nourished, big baby, and I was gleaming with pride.
And then I realized, oh my god, she’s dead. It was such a bizarre juxtaposition, you know? I mean, my body gave death instead of life. And I really had an acrimonious relationship with my body after that. I was very angry with myself for not doing what I felt like I was supposed to do. I think I was in shock for a very long time. And then I didn’t fare very well. This was July 27, 1994. She would’ve been 21 last July.
Traumatic-grief expert Joanne Cacciatore. (Photo: Joanne Cacciatore)
How did you parent your other children?
I didn’t. I cried a lot. I just cried and cried, and people stood in for the kids, which was really good. I tried. I remember distinctly when there were days I felt like I had a little more energy and I’d take them to the park. But inevitably we’d encounter a family and they’d have a newborn baby, and I would find myself staring and then in tears, and then asking the kids if we could go home. It’s hard anyway, but it was really hard back then because there was no place to go. I had tried some counselors and no one really understood grief at all. In fact, to the contrary, I’d be getting advice that was, “You need to forget about what happened, move on with your life, have someone pack up the nursery. Have you considered adopting?” I mean, I think about this now, as one of the top researchers in grief. Who trained these people? So I spiraled downward to a very dark place.
How did you climb out of it?
An important turning point for me was the Christmas after she died. I took the money [I would’ve spent on her gifts] and bought some toys for some underprivileged kids and brought them to a Head Start on Christmas Eve. And in that moment she was very much alive, because my love for her continued, and I was able to enact that love in the world. That became the Kindness Project. It’s such an intentional act of love for a stranger, so it requires us to call our [lost] person to heart — to remember them, actively and with intention, and to say, “Because I love this person, even though they’re not here, I’m going to do something for someone else, and in a way, be their hands and feet in the world.” That was a huge part of my getting my equilibrium back.
But I was still hurting [so I started] the MISS Foundation. I just thought I would start a little support group in my neighborhood, and then it just grew and grew, and then it was like a mini conference.
I also went to look at the literature, and there was a dearth of literature on the death of a child so I thought, somebody has to do something. And I went to school.
I had one more [child]. I was really scared. But I think [losing Cheyenne] made me appreciate every single moment more — the first few months I didn’t want to take my eyes off of him.
How do other people get through the death of a child?
I think so much depends on the social environment. There was a really interesting research study published by one of my colleagues, and it found that social constraints predict, more than anything, negative outcomes in bereavement. Now what does that mean? Basically people telling you to “get over it,” not to talk about it, move on with your life, “aren’t you done yet?” — that those kinds of intimations are not helpful. It’s pretty obvious, and yet we still do it.
I can’t tell you the number of people who call me concerned about their daughter-in-law or son who say, “It’s been three months! Shouldn’t they be x, y, or z?” I mean, three months is nothing, this is love we’re talking about here. You didn’t lose a house or a job — and those things are hard — but this is like the abyss of human suffering in every culture.
It also depends also on how people see the death. For example, I work with one patient whose son died a hero. He saved someone’s life and lost his life in the process. So everywhere she goes, people are like, “He was such a dear, so amazing,” and she’s just treated with such love around her son’s death. I have another woman whose son overdosed on heroin. We call that a “disenfranchised loss.” Can you imagine how each of them may feel in reaction to the way people treat them?
The death of a baby, at one time in this country, was treated as not as important as the death of an older child. Slowly — very slowly — that’s changing. Suicide is another disenfranchised loss, as are AIDS-related deaths, homicides that are gang related, and drug overdoses. There’s judgment by others about the worthiness of this person’s life. So we want to blame the griever all the time for not moving on or whatever, but the reality is that the way other people treat us matters a lot to the way our grief experience unfolds.
How do you counsel people?
It depends on the person and the circumstances, but if the person’s near me we sit [for therapy] maybe once or twice a week. If they’re far away I do something called intensives, so they come and work with me for an extended period of time. My goal is to just help them to feel a little more upheld than they usually have been. I’m often the last resort for people. I’ve had people come from as far away as Paraguay, which is crazy. People should have someone in their area who is sufficiently trained to shepherd them through this, and that’s why I say it’s important for us as a culture — because anyone can help. People just need to be allowed to go through what they’re going through.
What would you suggest for people who want to be supportive but just don’t know what to do?
It can just be something as simple as saying, “I’m thinking of you and Danny.” Most of the time parents really appreciate when people just do that, something so simple. Or in the beginning, something practical, like bringing over meals and dropping them off at the door. If it’s a family member, go and clean their house — with their permission, of course. Don’t put any of their children’s stuff away, though. Don’t touch their child’s room — don’t even clean it. I have families who have not cleaned their [dead] child’s room because they find little hairs.
There’s a lot of chatter around that being pathological, leaving [a room as is]. I’m not saying never take it down, I’m saying take it down if and when you want to. Who does it hurt to leave it? We have a lot of people who are so concerned about people being stuck. We live in a culture where we have a very low tolerance for painful emotions — we want everyone to be happy all the time and we have this sort of happiness entitlement, it’s bizarre.
But the reality is that I cry every day, and I’m probably one of the most fulfilled people I know. I live really big, I love life, I have a huge passion for life, but I cry all the time. So what? Just because you cry, just because you’re grieving, doesn’t mean you don’t also have joy.
(Top illustration: Erik Mace for Yahoo Parenting)