A Bereaved Parent in Context: "Rising from the Ashes..."
A Review of the 2003 MISS Passages Conference
by Kara L.C. Jones

The thing about life in this human world, in our little corner of the Universe is this: Life goes on no matter what happens. Regardless of whether your child or spouse dies, you lose your job, you become homeless OR you live happily, everyone is healthy, you have a job you love OR you have a job you hate -- whatever -- life goes on. Tomorrow people will go to work, they will take busses and ferries and drive their cars. Kids will go to schools. Banks and post offices will open. People will buy groceries and make copies of documents and go to the movies. All this will happen in total disregard of the fact that your child may have died the day before this or four years before this or twenty years before this.

So, when you finally get into a room full of other bereaved parents whose children have died, whose worlds have stopped, whose jaws dropped when the world had the audacity to keep going after the death of their child -- well, you just find a *CONTEXT* for your being. You find a respite that is hard to explain. You can say things like, "The world should have stopped because my child has been cremated into a tiny pile of ashes in this godd*mned urn!" And you can say that without fear of judgment. You don't have to defend yourself. You don't have to explain more than that one sentence. You don't have to hear cruel responses about how you are "already three years out from the date of death and should be over this by now." You simply say that one sentence about what you feel and WA-LA. The entire room understands. And you can relax. You have a respite, a chance to breathe, a chance to rest with the knowledge that everyone around you will understand that, even when you laugh, you still pain for your child.

Sometimes I go a whole entire year without realizing how much I am "a fish out of water" or totally out of context in my real, everyday life. And then my husband and I get to Arizona for the annual MISS Conference every May -- this year, held in Arizona at the Pointe Tapatio Cliffs from May 21 to 24 -- and suddenly we are "in context" again. The entire environment around us, all the people, all the events, all the meals, all the laughter, all the pool side time, all the tears -- everything, in context. Our parenthood is not denied, silent, nor forgotten. We are *IN CONTEXT* again.

What exactly do I mean?

Well, I work all year round with therapists in different venues, on various projects, and many of them would consider me just a "lay person" supporting their work in one way or another. But get to the MISS Conference and attend a session or two with Dr. John DeFrain. This amazing man has been in academia for many years. He has done thorough research about families, about stillbirth experiences, and more. And yet when he comes to the front of the room to present on "The Grieving Couple," he simply turns to all the bereaved parents in the room and asks us what a grieving couple might look like, feel like, sound like!

In Dr. DeFrain's sessions, he stood as witness to the experience of each and every person in the room. He did not tell them how it ought to be. He did not tell them how he could heal them. He did not tell them what wonderful magic therapy could be for them. He simply guided the conversation through the realities of life as a grieving couple -- as experienced by each and every person in the room who chose to speak. He affirmed for all of us that he'd heard many of the same things from others. He assured us we are not alone. He offered insight and information based on his experiences. But he never judged. And he never put a time line on the experience! Talk about empowering. Talk about treating me as an equal, rather than "just a lay person," when it comes to the grieving experience. If only every professional were willing to listen like, Dr. DeFrain, we might have a much healthier care system in the United States!

So now you're thinking that changing an entire care system is insane, right? Wrong. Don't believe me? Then I wish you could have been at this year's Conference to attend a session or two with Dr. Peter Barr from Australia. In the early 80's he and a small team of people starting offering a very "present-moment" kind of care to the bereaved parents they worked with after stillbirth, neonatal death, or other causes. In the mid 80's, Peter, Deborah de Wilde, and psychologist, Julie Dunsmore, made the award winning documentary film "Some Babies Die" which shows one family and one possible way for care-giving teams to work closely, conscientiously, and in a very "be present" manner with a bereaved family. Guess what? Dr. Barr's work and the work of his teams, revolutionized the entire care system in Australia!!! Revolutionized it to the point that recent surveys have shown that there wasn't one single bereaved family who didn't receive at the least the option of some form of this very "be present" care.

Peter is careful to say that what we see in "Some Babies Die" with this one family is not to be considered a "prescription" of exactly what should happen with every family. It is simply one example of what "being present" for a bereaved family might look like. In a lunch discussion with Dr. Barr, I asked him about his current work with families. He indicated that today, sadly, professionals who are with the parents immediately after the death of a child, have a lot less time with the family. Health care, as it is, tends to give only 24 hours or 48 hours for the families to receive care. But he felt certain that "being present" for that 48 hours set a tone for how the families will go about coping with life after the death of a child. Again, he stressed that every family is different. "Being present" is not about treating them all like the family in "Some Babies Die" but instead, about standing with them as they move through their individual process. For instance, he told me of one situation where a child from an Aboriginal tribe had died. In their culture, the most sensitive and caring thing to be done, was to have the child moved immediately back to the Outback with his/her tribe so that the ritual and care of the community could start right away. So they provided helicopter transport to make that happen. This is very different than the stillbirth family featured in "Some Babies Die" where the hospital team helped the family to spend time with the dead child, let every surviving sibling have a chance to see and hold their baby sister, helped them make funeral arrangements, and on and on.

Dr. Barr is also one of the most insightful care givers I have ever met, in that he doesn't seem to pathologize or condescend about the experience of baby death. Sometimes care givers treat this experience as a passing moment, a trifle in time, something to be "worked through" or "gotten over." Often care givers don't treat this experience as something long-term nor do they give it much intellectual credence. What I mean is that Dr. Barr is the only person I've ever met who talked about a baby's death and quoted Kierkegaard in the same breath!!!!!! Peter presented one session at this year's MISS Conference called, "Perinatal Death: An Existential View from Down-Under" and it was stunning!!! And beautiful. And amazing.

This presentation consisted of slide photos taken by Jonathon Delacour as he observed death and dying in the NICU while Peter cared for the bereaved families. Along with the photos, Peter talked and offered various quotes from writers such as Kierkegaard, Irvin Yalom, Nabokov, Tolstoy, Oriana Fallaci, Simone de Beauvoir, Einstein, and even Jean-Paul Sartre, for goodness sake!!!!!! I have had lots of discussions with lots of various doctors and professors since the death of my own son four years ago -- BUT LET ME TELL YOU, none of them ever gave enough regard to my son's death to mention that experience in the context of anything intellectual! Maybe it's just my background of coming through the rigors of Carnegie Mellon University or something, but this tap into the intellect, given on the same level as Jonathon's photography, in the context of the life of bereaved parents -- well, it was just a credence, an acknowledgement of the depth and power of life after the death of a child that no one has ever given to me in the past four years since my son died.

And just so you don't think I'm a complete freak, another parent at the conference was so moved by Dr. Barr's slide show and presentation that she asked if there was a way to get a hold of all those quotes. Peter handed her a print out of the PowerPoint slide show. She brought it to me. We had 10 copies made in the hotel "business center" -- and within moment of those 10 copies being put in my hand, 9 of them were gone, taken by other parents and facilitators who were moved by Peter's presentation. I did manage to hang on to one copy myself.

One thing I did not know before this year's conference is that Dr. Barr is not only a world-renowned physician and amazing care-giver, but is also a parent who endured the stillbirth of one child and the Cot-Death (SIDS) of another. Might it be that his personal experiences give him an insight that we rarely see with other care-givers? Maybe. But he was able to translate his experience and work enough to train other care-givers in Australia to the point that their entire health care system is light years ahead of what we see here in America. His one-on-one care, his empirical research work, all of it has contributed to change the world in his part of this earth. Maybe, just maybe, could we, please, use this work as a basis for changing our part of this earth???

We also had the great fortune to again hear Dr. Guillermo Gutierrez present with a session called, "Nico's Gifts: Quieting Your Mind and Opening Your Heart to Miracles." I saw Dr. Gutierrez last year and was amazed. This year, I was just flooded with a sense of being very grateful for Dr. Gutierrez's calming, confident, understanding presence. He again shared with us, all the miracles and interesting "coincidences" that have occurred since the death of his son, Nico. But I think the thing that struck me the most this year was the presentation of slides showing photos from the Hubble Telescope right next to slide photos from microscope slides. The photos from the far reaches of the Universe showed very similar shapes and forms to those that we see on a cellular and sub-cellular level! We are mirrored from the inside-out and outside-in somehow. I don't know if that makes sense or not, but it gave me a sense of continuity in the Universe. A sense of being very small, yet very present and alive. Another feeling of this connection with Universe is, of course, heightened when Dr. Gutierrez shows the Hubble photo of one particular nebula next to the "AZURE" painting that Nico did right before he died. The painting has the same shape and colors as the Hubble photo. Nico died before he saw the Hubble photo though. Yet his expressive art shows exactly that nebula that Hubble captured on film out in space. And, interestingly, Nico's interpretation of the shape is very angelic. As Dr. Gutierrez would say: "What an interesting *coincidence*!"

Also amazing, as usual, was the all day session titled "The Power of Compassion" given by Joanne Cacciatore-Garard, Founder of the MISS Foundation. I have taken this course three times now, but every single time, there is more information, new information, or just a new perspective that I didn't quite grasp the last time. I was honored this time around to have her use excerpts from my very own book Flash of Life as poetic illustrations to various aspects of how care givers can best help bereaved families. This session is a powerful tool that is attended by social workers, bereavement facilitators, police, fire or EMT personnel, counselors, as well as some bereaved families.

In this Power of Compassion session, Joanne covers everything from "the balance between investigation and accusation" to the long term aspects of the "single point of contact" care givers might have with families in emergency situation; from her "be gentle" philosophy to an explanation of why and how grief is a *normal* response to death rather than a pathology to be cured; from "cultural intersection" to helping families plan a funeral; from grief support for surviving and subsequently born siblings to "being present" at every moment during the care giving process. This session by itself is well worth the time and money for the conference. Professionals can/did get CME credit for taking the session. And the manual "The Power of Compassion: A Phenomenological Approach to Child Death" by Cacciatore with preface by Dr. Elisabeth Kubler-Ross is extraordinarily worth its weight in gold!!

Speaking of Kubler-Ross, I have to say here that I felt as if her work has come to full fruition with the experience of attending this MISS Conference. While Dr. Kubler-Ross' work has been misused over the years by the therapeutic world (because they have imposed the "stages of death" onto the bereaved rather than leaving them for the one who is actually dying!!!), I felt during this conference that her original students, the ones who truly understood her work, were all before me. It was like the first generation of those who have not bastardized Dr. Kubler-Ross' work are finally getting a space in the forefront to create better short- and long-term care in this world. Dr. Gutierrez, Dr. Barr, and Joanne Cacciatore all have studied directly under Dr. Kubler-Ross' tutelage. They have all been her students. They have heard her ideas from her directly. And they all delivered works at this conference that more than upheld and respected all the work Kubler-Ross has done. It's a first generation that one hopes Dr. Kubler-Ross is most proud of -- especially after so many others took her works and distorted them. Kudos to all of you who presented at this year's MISS Conference!

There were so many other experiences at this conference, too -- some, I got to experience first-hand; others, I was not able to get to & heard about only second-hand. Hawk & I hosted a session for facilitators about the "Personality of Support Groups" which went so well that they actually had to kick us out of the room because we ran over time and didn't even realize it. Dr. Barr ran a parent support group session which I heard was absolutely life-changing! Richard Obershaw did a body-mind relaxation session using hypno-therapy which I have heard was remarkable and surprising to all in attendance. I've even heard from one woman who says she plans on finding a hypno-therapist back in her home state to keep doing this kind of work long-term -- this after attending just one session with Obershaw! There was a "Sorrow Expressed: A Grief Documentary Portrayed in Art Throughout History" that I heard was really moving. The candlelight memorial service (nondenominational) was absolutely stunning. I don't think there was one person in the room who was not in tears as we looked at the long table full of candle flames honoring so many of our dead children. Many people holding hands, holding each other, passing kleenex, sharing kind silences -- that service was definitely one of those moments where some very deep fissures of pain and loss get filled with care and hope.

All-in-all, a stunning experience again this year. I don't know how to explain it except to say that all bereaved parents should have this experience of "being in context" with other parents. All professionals who are going to touch the lives of bereaved parents in any way at all -- ALL of them should be required to attend this conference once a year to truly get a perspective that is all too rare in our American culture. And, finally, many thanks to everyone there. You have spurred me on and inspired me to continue doing this awareness work for another year. And I'll see you 2004 for my next chance to "be in context" for a few days!!

Author's Note:
For information about the 2004 Conference, check in with the MISS Foundation and we'll also keep you posted here as we get details.

This page is dedicated to Dakota and Cheyenne.

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