Context & Anger: MISS 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.

Breathe.

Breathe.

Breathe.

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.

About the Authors
Kara is a freedom fighting guerrilla artist who has recently taken to henna as a solace and form of expression. Check out her new site at: HennaHealing.com