Foundations > All About MISS
By Kara L.C. Jones
KotaPress Editor
WA
State Local Chapter
of MISS
ANNOUNCING: National MISS Conference 2008
Review
of MISS Conference
2006
Review
of MISS Conference
2004
Review of MISS Conference
2003
Review of MISS Conference
2002
WA MISS Local Chapter
from
Kara L.C. Jones
The WA State MISS local
chapter offers outreach
on Vashon Island, in West
Seattle, on the East Side (Renton, Bellvue, etc) and in the Eastern
Washington area (Spokane). See our
local chapter site for
details: www.missfoundation.org/seattle
2008 Conference
MISS
Foundation Annual
Conference 2008
Hawk and I will be presenting at this year's conference. We'll be offering "Grief: Finding Our Way" workshop as well as another poetry unSlam. You'll find the conference section of the MISS site here where they will post all information about workshops, hotel, registration, presenters and more. For inquiries or to request a subscription to their eAnnouncements, please email info@missfoundation.org.
To see photos from the 2007 retreat, see the MISS galleries.
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Continually Learning: support, poetry, community
at MISS
Foundation Annual
Conference 2006
by Kara L.C. Jones
"I am here because I have no where else to go. Everywhere else there are just heartless stone faces that cannot know, cannot understand, cannot feel the scream of my soul." -Hawk Jones, when asked why he was at the 2006 MISS Conference
When first attending a MISS Conference back in 2001, my husband and I were so taken by the experience that it seemed it must be a mirage, a fluke, a rarity. But then we went back again 2002, 03, 04, 05, and 06 -- every year was more astounding than the last. At first we attended only in our roles as bereaved parents needing support, but then we began to also offer workshops at the conference and took on parallel roles as mentors or outreach facilitators. The more involved we became, the more enriching the experience of the conference.
Conference 2006 was no exception. In fact there was such a learning curve for me, such an overwhelming emotional experience that it took me months to integrate all that I was exposed to there. I can never fully express in mere words how important a conference like this can be -- for bereaved parents, but also for caregivers! But I do want to use my mere words to share a few of my 2006 experiences with you. So here goes!
Vanessa Gorman
The first extraordinary experience I had at the 2006 MISS Conference was to actually meet filmmaker and fellow bereaved mom Vanessa Gorman in person. For years many of us here in the U.S. had been sharing her film "Losing Layla" whenever possible, and I was also so moved by the intimacy of her story. Meeting Vanessa in person, I was shaken to my core all over again. She was *present*, one of those people who looks you square in the eye and wants to know you and is willing to share of herself with you. Every time I looked at her I was moved to tears.
Vanessa's presentation was so much more than seeing "Losing Layla". There were two things Vanessa shared that I've never been able to forget -- her voice rattles around in my head sometimes. I hear her talking about the "missionary zeal of the newly bereaved" and the fact that grief can "redeem and destroy us -- sometimes in the very same day." YES! Hello World!!!! That says it all for me. Our own little KotaPress was started with the energy of our own "missionary zeal" when we were newly bereaved. It's something that you cannot full explain to another unless they've experienced it themselves. But when someone has experienced it, they grin at you and say, "YES! Exactly!"
Dr. Gutierrez
It is always one of my favorite things at the MISS Conference to catch up with Dr. Gutierrez, Nico's Dad, because he always teaches me something new, introduces me to a concept that completely expands my universe. He did an amazing presentation in 2006 in which he introduced the concept of "Multiverse" -- so he actually did expand the universe for me that day!
But he really rocked my world over dinner one night when we took the time to explain to me the research
being done at Tufts University
by Dr. Diana Bianchi.
Turns out with each
pregnancy, a woman is given
fully functioning white blood
cells from her child.
Regardless of the outcome of
the pregnancy, live or still,
full term or miscarried, the
mother is left with cells filled
with the DNA of the child in her
body. Cell that are fully working.
Cells that show up first on site of
infection or injury. Cells that
work in brain even. WHAT?!!!!
You mean maybe “mother’s
intuition” is something more
than our imaginations?
Hmm? Maybe we physically
are altered, for the rest of our
lives, with each passing
pregnancy? Hmm? Maybe
there is an actual, physical
reason a bereaved mother can
FEEL her child even after he is
dead? Maybe she isn’t crazy
afterall? OMG, imagine that. I was touched and honored that Dr. G took the time and energy to talk with me about this research because he remembered from past years that I had talked about feeling like Dakota was with me. Can't thank you enough GG!!
Dr. Peter Barr
Dr. Barr took the whole audience on a journey through a slideshow and discovery of "Reframing Dysfunctional Grief". When I listen to Dr. Barr present, I'm always Zen'd out to another perspective on all we've been through on this grief path. Peter consistently advocates that we bring even the most "shadow" or dysfunctional aspects of our grief to the conscious surface to be examined, questioned, redefined. He reminds me that in our "grief denying culture" we have to be extra vigilant in our quest to stay conscious and make honest choices in our lives after the deaths of our kids.
This time around he presented so many new ideas for redefining our experiences, that it took me months of mulling over the paper copy of his slideshow to integrate all of it. Here are just a few quick glimpses of what Dr. Barr presented:
- "To suffer one's death and to be reborn is not easy." -Fritz Perls
- "Our lives do not simply fall apart, they collapse in structured ways, and the fault lines are marked by our concepts [personality]." -Jerome Neu
- "What we call 'nomal' is a product of repression, denial, splitting, projection, introjection and other forms of destructive action on experience...It is radically estranged from the structure of being." -RD Laing
- "When the heart / Is cut or cracked or broken / Do not clutch it / Let the wound lie open...Let it all unravel...it can be / A path on which to travel." -Michael Leunig, The Prayer Tree
- "I have largely forgiven myself for not being able to save them. I have reconciled myself to growing old without them ... I have forsaken any belief in an orderly universe ... But I have not relinquished my love for them..." -Gordon Livingston
- "I look on the dark side (when I do -- which is not always) in order to look both at and through the darkness." -Leslie H. Farber
Molly Greist, Stone Sculptor
It's odd -- the weird things that happen at MISS conferences. We live our every day lives on a little island in the Pacific NW. But we had to go all the way to Arizona to meet Molly Greist who lives right here on a neighboring island in NW! We had never heard of her or seen her work, and yet we all had so much in common in our grief experiences.
Molly again talked about our "grief denying culture" which defines grief as just crying while ignoring the raw wounds that must have time and care in order to just turn into battle scars. Long before attending this conference, we had written here in the Kota Journal about how grief is like a boulder that falls in the middle of your garden, and you have to figure out how to work with it, around it. Well, Molly literally works with boulders found in gardens. She found the first one after the death of her own son. It was a "rock" sticking out of the ground on her property. They began digging it out to discover it was a boulder! And she began to carve it. She had never worked with rock before, but suddenly the "missionary zeal of the newly bereaved" (as Vanessa Gorman would have said) was zooming through Molly, pushing her to carve the boulder in the garden!
Nina Bennett
It was also very exciting to finally get the chance to meet Nina Bennett, Maddy's Grandmother, in person!
Photo left: Nina, moi, and Ellie the Elephant we won in the silent auction!
Nina presented a great workshop for and about bereaved grandparents. She based a lot of her talk on her own experiences with Maddy's death and shared a lot about her book "Fogotten Tears" which I have always thought is such a great resource for grandparents!
Nina also wrote her own review of the 2006 MISS Conference and shared that article with us here in the Kota Loss Journal later in 2006.
Many Others, Too!
Though we didn't get to see or participate in sessions this year with Dr. Joanne Cacciatore, Dr. John DeFrain, Dr. Elio Frattaroli, Todd Hochberg, Janet George, Sarah Bain, Carla Hoffman, Anna Kennedy and more, I heard nothing but fabulous feedback and reviews from other attendees who did get to those sessions. Todd Hochberg is doing photography for families after the death of a child, much like the organizations Now I Lay Me Down To Sleep and Souluminations. But in his presentation, he also gave a lot of information about older traditions where degerrotypes were taken as memorials after the child died. This history is so interesting to me!
Our Turn To Teach
Hawk and I did get to facilitate several workshop at the 2006 Conference, too. We had a great time doing art and poetry with both adults and kids. But our "Poetry UnSlam" was, by far, the most extraordinary experience of any of the classes we offered in 2006 or any year for that matter!
UnSlam works much like "slams" where there are three rounds of writing, but an UnSlam doesn't involve any judges or "slamming" of writers. In this way, we create a fun AND nurturing environment for everyone to participate! So our rounds were 1) write alone, 2) write with a partner, and 3) write with a group of people. In each round we gave participants 10 words that had to be incorporated into whatever they wrote.
I'm excited to share with you here, photos from that session, the words we gave in each round, and then also poems written that day! The works shared here were sent into me by Kahlilia, MIRAcle's mom, so this is 1) the poem she wrote herself, 2) the poem she wrote in partnership with Cherie, and 3) the poem she contributed to as part of a large group. I'd be thrilled to share other individual and partner poems -- even the other large group poem -- but unfortunately, I've haven't heard from any of the other participants. Or it's possible, I lost track of those I was to get in touch with afterward!!! If I dropped the ball, I'm sorry -- and if you are reading this, please feel free to email me!
So here's what Kahlilia sent me:
Round 1
- alchemy
- pizza
- barren
- pillow
- hoopoaqua
- reclaim
- witness
- bullshit
- kilter
- forgive
by Kahlilia
In the beginning I ate pizza and dreamt of the alchemy blossoming in my womb
Nothing could succeed in throwing me off kilter
Though my family tried due to the fact that I would be a single mother
After a while most of the bullshit they had to say dwindled away
And we began to recclaim our connections as my belly grew
Anyone who could have been a witness to those long, long sleepless nights
With a pillow tucked under every spot of my body, in attempt to sleep better,
Would certainly see pregnancy as an extremely tiring bit of hoopoaqua
But I loved even the sickness that came with it
In the blink of an eye
Despite my conscious efforts and longing,
Not only was my womb barren
But so were my arms
And my entire life
Now my journey of forgiveness has embarked
Round 2
- soften
- liberation
- vavoom
- stars
- attract
- anoint
- lurching
- rage
- wretched
- multiverse
Key: Kahlilia (K)
Cherie (C)
Rage jumps out (C)
I remember those days when my handwriting lurched on my journal page (K)
Why me?(C)
Of all the wretched (C)
fucked up (K)
people in the multiverse get to keep their children (C)
Yet ours are amongst the stars (K)
And then one day (K)
Vavoom! (C)
My heart softened a bit (K)
I felt liberated from the darkness of death (K)
As if annointed with cool water (C)
To attract a new dawn (C)
-Written by Kahlilia Woodlon & Cherie Golant
Round 3
- elixer
- shatter
- venom
- fire
- mistake
- valid
- zeal
- prescription
- ice
- dance
This is the large group poem! Each line was written by a different person who took one of the words from our list. They didn't look at each other's lines as they wrote. They just wrote their lines individually. Then they put them all together at the end. AMAZINGLY it comes together as a wonderful poem!
Photo left: This is a photo of the large group who wrote this next poem!
Death is the elixer of our lives (Katie & DJ Salch)
All of our dreams have been shattered (Melissa Anderson)
The poisonous venom spews from others mouths as they speak empty platitudes of comfort (Janet George)
Red- like a fire- is what I see when I learned my daughter was taken from me (Kahlilia Woodlon)
This must be a mistake It can't be happening to me (Nina Bennett)
All grief is valid beyond any measure (Ammeloes)
With great zeal I seek the coping skills needed to meet the days needs (Gerry Haggard)
I asked my doctor to write a perscription for the pain in my heart I was feeling (Cheryl Haggard)
My cold iced heart melts from all the love I feel and healing begins (Teri Blanton)
Someday we'll dance again (Heidi Combs)
Wrap Up
All in all it was another mystical, magical, practical, educational, emotional MISS adventure! We're looking forward to seeing all of you again -- and meeting any of you attending for the first time -- in 2008.
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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.
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.
~back
to top~
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!!
~back
to top~
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.
W-O-W-!!!!!!!!!
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
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