WA MISS Local Chapter
from Kara L.C. Jones

The WA State MISS local chapter offers outreach on Vashon Island, in West Seattle, and in the Eastern Washington area. See our local chapter site for details: www.missfoundation.org/seattle


Announcing the 2006 MISS Conference
MISS Foundation Annual Conference 2006:

Please put the 2006 Passages Conference on your schedule for May 31 - June 4, 2006. Presenters include:

  • Vanessa Gorman, director/producer of HBO featured documentary, "Losing Layla"
  • Dr. Peter Barr, Australia physician and bereaved father, feature in the PBS Documentary, "Some Babies Die"
  • Dr. John Defrain from University of Nebraska, author of the ground-breaking book "Stillborn: the invisible death"
  • Joanne Caccitore, founder of MISS and author of "Dear Cheyenne"
  • Nina Bennett, author of "Forgotten Tears: A Grandmother's Journey through Grief"
  • Hawk & Kara Jones, founders of KotaPress
  • and so many other incredible speakers offering all kinds of workshops!!

For more information about the 2006 Gathering, please see the MISS website. For inquiries email info@missfoundation.org.

To see photos from the 2005 conference, see the MISS galleries.


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Context & Anger: One Mother's Experiences
at MISS Foundation Annual Conference 2004
by Kara L.C. Jones

Every year, I have a long process of integrating everything I learn and experience at the MISS Conferences which are educational, overwhelming, amazing, stunning, brilliant, emotional. This conference is simultaneously: the place I feel most "in-context" and the place I feel the most anger. It puts me "in-context" because when I am there, no one denies my parenthood. They all know I am still a mom to my son. They all know how deeply my son's life and death have impacted the person I am today. It makes me feel the most anger because I become more and more aware of how bereaved parents are systematically erased in everyday society.

As I do each year, I attended Joanne Cacciatore's "Power of Compassion" training. As always, I'm struck by the basic bottom line of this training, which is "BE GENTLE". It is amazing to sit in a room and talk with other bereaved parents and also with "professionals" at the same time. The connections that happen are stunning. Several things happened this year that just floored me.

One woman who is a caregiver expressed her feelings of frustration, her feeling of not being able to do enough, of never being sure if what she does helps the family or not, and that it is hard to gauge these things because everyone is different. After she finished, another woman stood up, cried, said that she was certain the caregiver who had just spoken was the caregiver who was there when their child had died. She told the caregiver that she had never gone back to find the people who took such good care of them because going back was too hard. But that now, with them both here, she wanted the caregiver to know that what she did DEFINITELY made a difference.

Then later, at our table, was a therapist who expressed a bit of frustration at hearing how long the "grief" process takes, at not knowing how to help people over long periods of time. She went on to say that she had a friend whose child had died, and their friendship had been forever changed because the bereaved mother could never again interact without bringing up something about the child's death or her grief. I inquired further. I discovered that the therapist had children the same age as her friend. The bereaved mother was also a mother to other living children. The therapist expressed frustration that her friend had not been able to just go back to being a mom to the surviving children who needed her.

I took many deep breaths before speaking. I asked the therapist to forget "grief" and think about "parenthood". I asked if the therapist ever bought Christmas gifts for the friend's surviving children? Yes, of course she had, and the friend was never able to just accept those, but instead always had to bring up the dead child, too. I asked if the therapist had ever bought gifts for the dead child -- thereby acknowledging ALL the children in the family and the FULL scope of the friend's parenthood. No. I asked what would be wrong with making a donation to some charity in the name of the dead child to give that as a gift to the friend when giving the other gifts to the surviving children? It is such a small shift in perspective, but it seemed to really open the therapist's mind about how their friendship had changed and why.

Another therapist at this session insisted that there are difference in grief based on gender. Now this workshop does not give your "standard" mars vs. venus load of manure. Cacciatore presents this workshop with the idea of the "Culture of One" -- showing how we are all so individual that you can never predict how any PERSON will need/want support during grief. This therapist insisted that men and women grieve differently though. This therapist then pointed out that in the room for the workshop, there were 180 people, and only a handful of them were men. It was a sort of, "So there."

Again I took many deep breaths before speaking.

Let's look at what caregivers and family members do to the dads at the moment of death. We told the dads they had to be strong, they had to pull it together for their wives, they had to plan the funeral, take care of the hospital papers, check those emotions at the door. We asked them things like, "How's your wife doing today?" We never asked how they were doing. We never bothered to find a family advocate who has been through this before to help facilitate the mother and father BOTH dealing with hospital papers and funeral homes. We never offered them help. We never offered them a moment of expressive emotion. SO WHY THE HELL WOULD THEY SHOW UP A YEAR OR FIVE YEARS LATER AT A CONFERENCE LIKE THIS?????? The very therapist asking that question about "where are the dads" and "proving" the point that "men grieve differently" -- THAT is the very therapist who created the disenfranchisement of the men to begin with!!!

Wake up, people!

I have to thank Dr. John DeFrain because he was one AWAKE professional at this year's conference. In his group session, he had no inhibitions about bringing up the FULL range of this experience, of talking about and asking questions about the FULL life parents live after the death of a child. He asked the group to speak about difference in the experience for partners, not just along gender lines, but for any reason. He asked the men to speak up about their disenfranchisement. He asked how we are doing with our other living children or with "trying again" or deciding to "not try again." He asked about our sex lives! He asked about our communications with each other, on the job, with family and friends. He asked about our work, our outlook, our everyday life. And after he asked each question, he stood there and FULLY listened to every answer, without judgment, without analysis. He just listened. And he did let us all know that he had heard many of the same things from numerous other parents throughout the years in his work and research of strong families. He normalized it all for us. That is a gift beyond compare.

I heard other professionals here and there questioning the ways families continue to express "grief" over long periods of time and how that might affect other living children in the family. As if the other living children would be unaffected by the child who died, and that the parents would better serve the family by "getting over it" to concentrate on the living children. BUT THANKFULLY, Dr. Abby Garcia presented an amazing workshop that outlined child development and how grief affects kids. She talked about how children will revisit the loss in different ways throughout different stages of development. She normalized this, said it is to be expected, gave parents and professionals ideas for how to talk with children, how to listen, how to be present for them. She was adamant that just as grief has a systematic effect, we are responsible for looking at ways to systematically help the entire family as a whole.

Look, the ENTIRE family experiences this loss. Though a child may die, the parents are parents forever; the siblings are brothers and sisters forever. When a young child has experienced the death of a sibling, is it any wonder that they will continue to talk about, wonder about, play with the idea of having been a brother or sister -- and yet having to face a world that says "well the other child is dead, so you aren't really a brother or sister anymore." How confusing and messed up is that message??? I cannot thank Dr. Garcia enough for presenting this workshop on child development and how kids relate to loss experiences over time!!

Another workshop I attended was one given by Dr. Linda Layne, author of the book "Motherhood Lost." She was amazing at showing clearly how pregnancy loss and the consequently bereaved parents are systematically erased from our society. She had done a random search for her book in bookstores and discovered that it was shelved with the SOCIOLOGY books. "MOTHERHOOD Lost" is shelved with the sociology books. Motherhood. So when it is motherhood to living children, then it is parenting and pregnancy and a completely different section of the store. And we wouldn't want to put Motherhood LOST anywhere near the other parents, would we? Why no, of course not, because we might contaminate those other parents with our death and grief, right? (All written with much sarcasm!)

Dr. Layne showed how even in "feminist" books like "Our Bodies, Ourselves" there has historically been no mention of pregnancy loss, miscarriage, stillbirth, SIDS. So let me get this straight. There are somewhere between 29,000 and 39,000 stillbirths a year in the US alone. That is ONE OUT OF EVERY 115 babies -- born dead. But the "feminists" have ignored the one out of every 115 women who are experiencing this? Great. Nice. What the hell did I march for???? THANKFULLY, Dr. Layne is in the process of creating a section of the new edition of that book, a section that will talk about pregnancy loss.

Dr. Layne also presented the idea that we need to SHOW people what this looks like. We need photos, we need films. Can I tell you that in a room full of people, bereaved parents themselves and their caregivers, there was STILL resistance to this idea????!!!!!!!! Why??? She suggested that when we show and teach "reproduction" classes, we also give realistic looks at miscarriage and stillbirth as possible outcomes to pregnancy. Yet, people don't get it. So wait, I marched to be able to tell people in "repro" classes that one option for pregnancy is to get an abortion and to show how women are protected going in and out of clinics, etc.. But you're telling me that I can't, in the same class, say that if the woman chooses to keep the pregnancy, there is such and such a chance of miscarriage or stillbirth. AND if one of those losses happens, then show and tell that miscarriage moms are sent home to "finish", may feel labor pains, may push out the embryo, cord, & placenta intact, may be alone with their equally scared partner as they do this. AND if the child is stillborn, to show a film like Losing Layla or something to show people some of their possible options if this should be the outcome. No. No, we can't do that!!

Dr. Layne also presented the idea that the moment a woman is told she miscarrying or that her child is stillborn, that these women again be SHOWN what this process might look like. That a doula be sent home with the woman and partner who are miscarrying -- so they have an advocate, a support there when they BIRTH out the embryo, cord, and placenta intact!!!!!!!!!!!!!! Or that when a family is told their child will be stillborn, that the caregivers take one gawddamned extra hour to sit with the family and watch Losing Layla and say to the family, "These are some of what your options are for you and your child now." And then assign a family advocate to help them sort out what they want to do as they have their LAST PHYSICAL MOMENTS EVER WITH THEIR CHILDREN!!!

And yet, Dr. Layne met with palpable resistance in a room full of bereaved parents and their caregivers. IF WE CAN'T EVEN SEE HER VISION, IS IT ANY WONDER THAT THE REST OF OUR SOCIETY IS ABLE TO SYSTEMATICALLY ERASE US???!!!!

Dr. Froen from University of Oslo, Norway, was also back this year. He gave a stunning presentation on worldwide view of stillbirth and a program called KICKS COUNT. Kicks Count is a program that takes caregivers an extra few minutes in one prenatal appointment and one extra piece of paper for the parents. Basically, you teach the pregnant mom to count the fetal kicks during the same 15 minute period each day and record the number of kicks on paper. And if there is any decrease at all in kick counts, then families are told to go to the hospital immediately. When the kicks decrease, there is still a 12 to 48 hour period in which medical professionals can see what's happening and possibly do an emergency delivery and save the child. Now this wouldn't stop all stillbirth, but there is a potential for decreasing stillbirth rates by 1/3. ONE THIRD! In America alone, that would be about 10,000 a year.

AND YET WE DO NOT INSTITUTE THIS PROGRAM SYSTEMATICALLY IN THE U.S. AT ALL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It is hit or miss here. Some obs do, some don't. And what do we do instead in this culture? We send pregnant moms to Kmart to buy those doppler machines to gauge the baby's heartbeat, right? Guess what? When your doppler shows the heartbeat is gone, it's too freaking late! WHY WOULD OUR MEDICAL SYSTEM IGNORE THE KICKS COUNT PROGRAM? Ask yourself that. Why?

Could it be that there is an agenda in this country that doesn't want any more credence given to those dead fetuses??? Those stillborns -- oh my gawd, don't call them babies!!! You might mess with abortion politics in this country. So a program a simple as Kicks Count is ignored because our children, stillborns, are not something anyone wants to deal with because we interfere with abortion politics?

People, if you chose abortion, you chose abortion and you are not a parent because you chose not to be a parent at that moment in the pregnancy. Fine. I marched for your right to choose that.

But if you CHOOSE to keep that pregnancy, to become a parent, then you are a parent forever, regardless of the outcome of the BIRTH!!! What about my rights? Why wasn't I protected by being told about the Kicks Count program? Did you ask to throw me a "fetus shower" or a "baby shower"? Did you ask me, "Oh, when's your fetus due?" or did you say, "Oh, when's your baby due?" Just because I was sliced open from hip to hip for a c-section that resulted in my child being pulled from my womb dead -- does not mean I did not give BIRTH!!!!!! How is my birthing different from the birthing of the woman with the c-section whose kid is alive? The outcomes are different, yes. But the BIRTHING??? NO!

This is not about abortion. You keep your abortion politics. Do whatever you want. Keep your laws, your protections, your visibility. BUT I AM A WOMAN, TOO, AND I DESERVE THE SAME RIGHTS FOR MY CHOICES.




So, you can see, that this year's MISS Conference was a very mixed bag for me. I never feel more comfortable, as FULLY myself as when I am around other bereaved parents who understand me. They understand that my journey is not about "grief' -- it is about "a different kind of parenting". They understand that the time, love, money I would have spent on my child if he were alive -- these things are energies that still exist and in my son's name I am doing awareness and support work. They understand that this "different kind of parenting" is a style of parenting that had to be integrated with the parenting I do for our living children and grandchildren. They understand me as a WHOLE person because they do not seek to silence the FULL experience I've had, they do not seek to stuff my dead kid into oblivion. They accept me whole.

And at the same time, this year's Conference was full of anger for me. I'm learning things. I'm seeing how my experience fits into the world. I'm seeing how we are systematically being erased. I'm seeing how we are everyone's biggest fear and they'd rather stash us under the bed with the "monsters" instead of seeing us. It's a hard pill to swallow.

Ultimately, I cannot thank the MISS Foundation enough for their time, energy, love, money, coordination, volunteers that all bring this Conference to fruition each year. It is truly a crucible for me in the very best way possible. I learn more in four days than I do all year long. I learn about myself, my partner, my family, my society. And it is amazing. I hope everyone at MISS fully knows how much they are changing lives, recreating the world. Because of you, I am more whole. Thank you.


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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!!


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Weekend in the life of a bereaved mother:
Attending the MISS Passages 2002 Conference
"The Culture of Grief: when a child dies"

by Kara L.C. Jones

This year's conference was held on May 23-25 at at the Scottsdale Paradise Valley Resort in Scottsdale, AZ. This time I attended the conference as a bereaved parent and as a professional presenter hosting a workshop for others. And instead of attending with my husband like I normally would, I met my mom (a bereaved nanna) at the conference.

It's very difficult to have such an amazing and overwhelming experience that lasts for three full days, and then come back and try to explain in mere words what that was like for me. But I learned so much and my heart was touched by so many bereaved parents, professional care givers, and the spirits of so many dead children, that I cannot let it go and drop the ball on sharing this experience with you.

The most stunning presentation I saw there was one given by Dr. Guillermo Gutierrez. This session was titled "The Caring Physician: Reconnecting Your Power." Now if you've read my works before, you know I have no great love of health care providers. Dr. Gutierrez has a good reputation, and many parents have told me they had wonderful experiences in his care. But when I saw the title of his session, I imagined a bunch of professionals reconnecting to their power over us poor, bereaved parents (said with much sarcasm). I wasn't going to this session.

Then I ran into Joanne (Founder of MISS) just before Dr. Gutierrez stared his session. She insisted that I attend. She told me I "had to" and that I wouldn't be sorry if I would just go and hear him. Jo is one of my mentors. I love her to the bottom of my heart, and I generally don't question her because she has been an amazing guide for me. I went to Dr. Gutierrez's session.


Dr. Gutierrez's son Nico was killed in an accident on Thanksgiving 2001. His entire presentation was about honoring the connections that bereaved parents continue to have with their children after their children have died! What?! I was in shock as he presented his session, offering us proof of his continued connections to Nico. He said that obviously he'd rather have his son back, but now that Nico has died, he knows he has a mission to make other professionals aware of these connections between bereaved parents and their dead children. His mission is to make *professionals* aware of how to honor the parents in their care!!! WOW!

He presented a myriad of events that have happened since Nico's death. At first he thought he could understand them as "coincidences," but then he had typed up a program for the memorial service. This program was comprised of excerpts from Nico's diaries. Dr. Gutierrez was going to translate the program into French and Spanish as well, but he wasn't sure it was right. So he asked Nico to send a white dove to him if the program was okay as it. This is Arizona in January 2002. So a while after he put that request out into the Universe, his other son, daughter-in-law, and grandchild came over to his house. He told them about his request of Nico. They went about fixing their car in his garage.

So there he is in January, standing in his garage, holding his grandbaby, his son and daughter with their heads in the car fixing it, and he looks out to the street in front of his house. Yep. A white dove in the middle of the street. Just sitting there looking at him. He taps his kids on their shoulders, and they look. Someone runs for the camera. They take 8 photos of it, several of which include the bird and his daughter-in-law and grandbaby.

He had at least 30 other stories like this. I was encouraged to try this theory out myself. It used to work for me, but I hadn't paid much attention in ages. I put out a request and told my son Dakota that I needed to see his name in writing, in all capital letters like I had once seen it written in the snow, and *not* in reference to the conference nor to the states of North or South Dakota. Several days later a friend sent me a link to a Rumi website. I surfed there, then surfed their links to other Rumi websites. Then I came across and interesting one and decided to see who ran that site. In the owner's bio, there was a listing for a short film he is working on called "DAKOTA" -- all caps.

Every care giver on the planet should meet and hear Dr. Gutierrez.

There were many other sessions at the MISS Conference, too. A clinical psychologist ran a very interesting session about "gender differences in grief" and again if you have read any of my stuff before, I am not a fan of segregation in the bereavement world. So I attended with somewhat of an attitude. But this clinical psych proved to be very insightful and open-minded. She was saying that we have to start looking at how people grieve differently and help them from wherever they are. But then she offered slides that has lists titled "men" and "women." So of course, I can't keep my mouth shut about this.

I raised my hand and asked if I could play devil's advocate. She said that was fine. I asked how we can ever start looking at how people grieve differently when she was still offering lists based on the segregation of gender. I asked how these lists would apply to same sex couples enduring the death of a child. She said that with same sex couples, you have to delve into the relationship first and see what roles the partners have carved out for themselves in that relationship. Then, she said, you work from wherever the partners are individually in relation to each other and in reference to their grief. I countered that this might just be the model that we should all be using to work with bereaved people in heterosexual couples or single parenting situations. She said that just might be right, and she was very conscious during the rest of her presentation to talk about differences between people rather than "men" vs "women."

It was wonderful to have an exchange like this with a professional who is open to the flaws of the current support system and who is willing to look at new ideas for correcting those flaws and consequently offering better assistance to those in need.

I'll share one other amazing experience. Dr. John DeFrain, author of "Stillborn: The Invisible Death" and "How Strong Families Endure the Death of Their Child," was a FAB speaker and most sensitive professional! He came to the front of the room, showed us a bunch of pages he had typed up to read as his presentation, then tossed the papers over his shoulder. He said he wanted to learn from the bereaved parents in the audience instead. He presented 10 questions and proceeded to facilitate an inclusive, moving, overwhelming, room-wide discussion. He shared his experiences along the way, and he was open-hearted and open-minded about everything the bereaved parents in the room had to offer. I believe this kind of presentation had the *most* impact on the professionals in attendance that session. They were forced out of their "15-minute" physician consults, or the EMT "emergency" situations, or the focus on paperwork that case workers normally have. They sat for for an hour and a half and * Listened * to bereaved parents about the long term effects of grief after the death of a child. It became real, and even safe for them to remove some of that thick skin.

Imagine if all care givers would take the time to hear the story and acknowledge their own experiences of grief. Imagine if they were encouraged to feel and connect rather than distance and disconnect. If their own grief processes were acknowledged and addressed, just imagine how they might offer that same care to their patients. It certainly would be a different world.

That day, that session, Dr. John DeFrain made a significant contribution toward offering better support for care givers and parents. I cannot thank him enough.

Joanne Caccitore (Founder of MISS) held an amazing all-day session on "The Power of Compassion: A Phenomenological Approach to Child Death" on that Thursday. This is my second time attending this CE course. She's amazing and right-on in her presentations. She shared part of an upcoming PBS show called "Losing Layla" a documentary by Vanessa Gorman. If you don't get what the big deal is about stillbirth -- even if you do get it -- you need to see this film ! This should be mandatory viewing for care givers, family, friends, potential parents all over the freaking world.

I did bite the bullet and purchase the manual that maps this CE course. I've put the buzz in Jo's ear that I really want to turn this into an online certification course for her. My feeling is that there are parents and professionals who cannot get to AZ, but who would take the online class. And Jo would be a dynamic online facilitator given the tech tools needed to make that happen. Hopefully, I'll be writing soon to let you all know how you can get this training, too.

There was much more. I enjoyed teaching my Creative Healing class tremendously. The parents and poets in that session shared soooo much. In particular, my mom wrote a piece for my dead son Dakota. My mom and I had a wonderful connection there. We did enjoy the pool and sunshine, too. But it was most moving to share this grief conference with her. To that end, I want to honor her love and care and sensitivity and her own grief over the death of her grandson by publishing her poem here. Thanks Nanna-Memoo for being with me at this year's MISS Conference!

I sit among rocks
visions of Kota in
hummers sipping from flowers
in the garden
heat, sand, wind
surrounding a cactus
resembles a grandson
sitting & watching
I dream of could have been
sharing awareness of the
desert around us
Keeping an eye out for
scorpions, snakes that
Nanna fears

-poem by Dakota's Nanna-Memoo


~back to top~


Author's Note:
For more information about the 2005 Gathering, please click here to get the PDF version of the Conference brochure & registration or email inquiries to: info@missfoundation.org. To see past conference photos, visit the gallery here:

This page is dedicated to Dakota and Cheyenne.

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