T.E.A.R. Study is Launched

I've been planning this study for nearly two years, and its finally come to fruition. Please share this link with other bereaved parents, grandparents, aunts, uncles, friends, siblings...

Please participate in the T.E.A.R. Study! If you're interested in reading some of my previous research, you may do so at the Center's research page. Thank you so much.

Research is to discover what many have already seen and to propose what few could imagine.

-Albert Szent-Gyorgyi

Grief lessons from my barefoot walkabout

The first, intentional step into pain takes a lot of courage.

I can avoid those things that would add unnecessary suffering to my suffering.

The others who came before, those protected from the Earth, won't be able to know the experience in this way.

Things (I) will get broken.

I can miss the stickers if I pay attention.

Even when I cannot see it, the sun exists. It's vanishing is an illusion.

Rocks hurt when they get between my toes.

It's not all uphill.

There is more than just one way.

Sometimes I have to get on all fours to make it up the crags.

I've been to the edge and not fallen off.

Sometimes I need to pause on a cool, smooth rock or a mound of soft dirt,

and breathe through the pain.

I need to shed a few things, perhaps-once-helpful-but-now-a-hindrance -things, along the way to make it through the journey.

Beauty exists there, right next to the pain.

I can't always see around the corner, but I trust and continue.

There are no real short cuts.

If I am open to it, I can find love along the way.

Others have come too.

The destination matters.

Sometimes, I can lean on the unexpected.

I am grateful for the easy steps.

I cannot always identify things on my path.

Sometimes I must look back at where I've been for the strength to endure.

I cannot shade myself. Only another can provide shade for me and me for another.

From pain and sacrifice, I am able to become more fully human.

A Tree Full of Angels

"When you can lovingly be present to yourself,

your presence to others takes on a deeper quality".

I read it in less than two hours. A magnificently languaged, numinous book by Wiederkehr, a Benedictine monastic. I admit the title pulled me into this book. The idea of seeing the 'holy in the extraordinary' has always been appealing to me.

She calls this process 'harvesting angels from the crumbs' while living in a theophanous, rather than corporeal, world. The hallowedness of nature becomes apparent early in her writing as she strives toward intentional awareness of life, cognizant of those tiny miracles which are so easy to overlook, yet within with are contained the truly extraordinary: a spider's web, morning dew, a falling leaf, or a tree full of angels.

Mostly, one chapter resonated with me: Little-Great-One, Come Home.

Little-Great-One, Come Home.

I repeated this several times.

Little-Great-One, Come Home, Little-Great-One, Come Home, Little-Great-One, Come Home.

Myriad gravel paths of interpretation in that simple phrase for me. Probably different than for the author, yet still meaningful.

Near the book's sunset, she cites an anonymous quote: When we walk to the edge of all the light we have, and we take that step into the darkness of the unknown, we must believe that one of two things will happen... there will be something for us to stand on or we will be taught to fly.

To soar from the darkness of suffering? Pain? Even Death?

Certainly the book is Divine-God-focused. Yet, it seems that even secular humanists who have been to the edge of all their light would appreciate this book.

Because there is a contradicting humble, holiness in nature and her miracles. Because there are morsels of holiness in those every day moments with our loved ones. Because a leaf dancing to the ground or a raindrop falling from the sky or a dragonfly skimming water or the sound of a running stream are all truly sacred experiences. We need only walk to the edge of all our light to truly see. And one day, our ruptured hearts - the ones that have seeped onto the floor and into the crevices beneath our feet- will be transformed by this darkness of which she speaks and be able to look past the mundane into the miracle.

And we realize with certainty that the extraordinary is wrapped in the ordinary.

Yes. She was. Yes. She is. And yes, the Little-Great-One came home.

Standing in the Shadow of my Sun

In the beginning is the end.

T.S. Eliot

Many days, 5094 to be precise, have passed since my Sun set on my world. I stood outside my house in an empty field, crusty daffodils peeking through the cracked dirt beneath my feet. I watched silently as my Sun snuck behind the moutainous silhouette, saguaros reaching toward the sky, as a tether against its descent into the night.

I could not resist it's leaving. I was powerless. I gazed at it, seduced by the pain of losing something so beautiful. I wanted to run toward it, but I was suspended in time and space. The crowning vestige of my Sun vanished and left me there in a blackness so black that even my own hands, the ones that would have held her body against mine, were indistinguishable from the nothingness that surrounded them.

Lost. Truly. Lost. Rivers flowed. Birds hunted their prey. Trees dropped their leaves. Snow fell. Children laughed. And cried. Daffodils found water and the cracked Earth drank until it had it's fill. Clocks ticked, tides rolled, and time marched.

I asked for the world to stop. But nothing stopped that day. Save me.

When I was ready to surrender, I explored my world of darkness. I could not stand there in that field - for that Sun on that day in that place was no longer mine in this way. I was now an explorer of nothing and everything, birth and death, past and the future, heaven and hell, the day and the night.

And so, I walked the night. And walked. And walked. Miles and miles, feet bare against each stone and crevice. I came upon strange creatures. Some would glow just enough for me to find my way to the next place. Others, not many, would take my hand awhile, help me over the big rocks on the path and across the wide rivers that carried ones who came before down helplessly. A few, not many, even carried me when I grew too weary for another step. Many more, gremlins of the night, would trick me with breadcrumbs and promises, leading to even darker places, with wider rivers and eternal canyons.

Until up, up, over the horizon, peaking over my Sun's grave, there was my Moon. Just a sliver, a fragment, but enough light to get me to safety.

And I rested in its reticent glow, still wishing and longing with every cell in my body for that Sun on that day in that place. The one that was no longer mine in this way... until, finally, golden slumbers filled my eyes.

T.S. Eliot goes on to say that, "at the end of our exploring, we will arrive where we started, and we will truly know this place for the first time."

I awoke, salt on my tongue, moving ever-so-slowly. Like the transposed caterpillar emerging from her taut cocoon, sore and and scrambled, like the between station channels in the white noise of the world. I reached my arms, stretched to the sky, and looked over the horizon to see that I was standing in the field, my field, outside my house. Beneath my aching feet, daffodils were peeking through the cracked dirt. I watched, breathlessly, as my Sun ~the One of a different time and place and moment, yet mine still~ began its resurrection from behind the mountain top that had once been a place of internment. I watched its ascent breathe life- pure and unadulterated life- into the dirt and the trees and the birds and the stones and the clouds and the bugs and the children and the buildings and the world. With me. And you. And the presence of your absence.

And I truly knew this place, for the very first time.
In my beginning is my end.

In my end, my life began.

...for V and R

Position Statement for the MISS Foundation

Position Statement of the MISS Foundation

Co-Authors, Dr. Joanne Cacciatore & Kara LC Jones

Whatever is unnamed, undepicted in images, whatever is omitted from biography, censored in collections of letters, whatever is misnamed as something else, made difficult-to-come-by, whatever is buried in the memory by the collapse of meaning under an

inadequate or lying language –

this will become, not merely unspoken,

but unspeakable.

-Adrienne Rich

Definitions for purposes of this document:

Stillbirth: The intrauterine death of a baby after twenty completed gestational weeks until birth. Stillbirth is always a naturally occurring event and often occurs at or near full term for no apparent reason.

Miscarriage: The intrauterine end of a pregnancy anytime from conception to twenty completed gestational weeks. Miscarriages are also spontaneous, naturally occurring and unpreventable events.

Qui tacet consentit

Those who are silent tacitly agree:

In response to the promulgation of the term “Pregnancy and Infant Loss” used in Awareness Campaigns during the month of October:

The MISS Foundation recognizes October as Infant and Child Death Awareness Month. Our organization has also been asked its position on the Pregnancy and Infant Loss Awareness campaigns.

Several years ago, after careful consideration with the bereaved parents advisory board, the MISS Foundation made an executive decision for our organization not to utilize the term “pregnancy and infant loss,” but rather recognize October as Infant & Child Death Awareness Month. We use this language to describe all the awareness campaigning we do for the month of October and on the day of October 15^th.

The key reason relates to the use of the vernacular "pregnancy loss" when addressing the issue of a sudden, intrauterine death of a child. Language chosen to describe social issues is very powerful. Historically, euphemisms are used to sanitize social problems. Yet, if we do not call it what it is, in the case of stillbirth, the birth of a dead baby, society will never pause to pay attention and the 'cause' will take longer to establish firm roots. And, for our members, the use of this term does not sufficiently express the magnitude of trauma involved in giving birth to a dead baby.

Indeed, for most of our members, the use of the phrase “pregnancy loss” was not an acceptable description of their grievous and traumatic losses. Rather, the language, for them, felt diminishing. In dissecting the phrase, some perceive the inference that a child, in fact, did not die. Rather that a pregnancy was "lost." For many women, the phrase decries and derogates their experiences.

We also found that some women who have experienced the loss of a child to miscarriage also reported feeling offended by the term “pregnancy loss.” Author and artist Kara LC Jones says, “I did not lose my children or my state of pregnancy in a crowd. With my stillborn son, I had a c-section. With my miscarried son, I was in full, natural labor for two days before he was born. When I chose to raise awareness about the life, death, grief experiences, I wanted to use a term that gave full gravity to what happened. Infant & Child Death Awareness expresses my experience, because so much more happened here that is deserving of honest language.”

Scientists illuminate some important factors to consider when addressing the issue of perinatal death:

1. Loss is complex. The responses to loss are even more complex. Bowlby’s theory posits a continuum of responses seen in parents who lose children to death more closely associated with the degree of attachment than "time" spent with a child. In other words, quality of the attachment not quantity of the attachment informs the psychological responses of the bereaved. Ambiguous losses tend to cause "complicated mourning" and these are often the most difficult to resolve. There isn't 'more love or attachment,' rather, mixed or ambiguous emotions, either from internal or external sources (meaning that often society assigns taboos and stigma to some losses), that discombobulate the parent's response (they know they feel overwhelmed, bereaved, and desperate but may not feel their feelings or loss are acknowledged and they struggle for validation from the 'social group' which they often do not receive). These are often disenfranchised losses such the death of a "less than perfect child," AIDS deaths, deaths by suicide, stillbirths, and even some highly conflicted relationships that end in death.

2. Stillbirth has been demonstrated to evoke strong and enduring psychological distress and emotional responses in women, similar to any child's death. In addition, there is a physiological paradox stemming from the many physiological responses that occur during the final trimester of pregnancy and in the postpartum period to prepare the woman's body to give birth and to facilitate the many changes that occur, including pain receptor preparation. These nuances coupled with the final outcome, a dead baby, at the end of the birth process, seems to incite an impasse for many women. Her body knows she gave birth and responds accordingly however there is no baby.

3. Miscarriages evoke a variety of responses in scientific data. The continuum ranges from grief responses similar to any child's death to little or no grief responses. There are many hypotheses in the scientific world about this phenomenon. One posits that women who conceive easily and are younger handle early miscarriages "better." Thus, older mothers or the women who endured years of infertility might respond differently. Some studies demonstrate that women with unplanned pregnancies who miscarry report feeling "relieved". Other women who were not particularly trying to conceive but who were happy with the pregnancy appear to be somewhere in the middle of the continuum. Another hypothesis has to do with spiritual beliefs about when life begins. For women who believe enthusiastically that life begins at the moment of conception, the miscarriage, at any stage, is the death of their child. For another woman who may not hold the same spiritual values, or who may not "attach" early in the pregnancy, the miscarriage may be viewed as a "pregnancy loss" and not the death of a child.

Yet, even in these studies, there are many disparate responses.

Because love and loss are nuanced and complicated, and because language is so powerful, the MISS Foundation chooses to channel its energy into campaigns that align with our philosophies about supporting women, men, and children after the death of a child at any age and from any cause. Indeed, love – and sometimes predictive grief- are not always measurable in a scientific test.

There is never a good age or a good time to lose a child to death. Whether at birth, one year, ten years, thirty years, or sixty years, it is simply out of life's expected order in the West. And the pain that ensues is indescribable for most. This is the cornerstone principle of the MISS Foundation, and this policy is what we believe to be the best for our members.

© 2010 by the MISS Foundation

One of my more recent pubs...

Clinical Obstetrics & Gynecology:

September 2010 - Volume 53 - Issue 3 - pp 691-699

doi: 10.1097/GRF.0b013e3181eba1c6

Stillbirth: Patient-centered Psychosocial Care

CACCIATORE, JOANNE PhD, FT, LMSW

Arizona State University

Abstract

Evidence-based practice and patient-centered practice are not mutually exclusive clinical ideals. Instead, both styles hold tremendous potential for complementarity in healthcare and should be used to enhance clinical relationships in which caring is humble, mindful, and nuanced. The onus of the responsibility for many decisions about care after stillbirth falls on clinical staff. Yet, even in the dearth of literature exploring standards of care during stillbirth the results can be conflicting. Thus, research in both patient-centered and evidence-based approaches suggest that less emphasis should be placed on the standardization of care; rather, the focus should be on relational caregiving that underscores the uniqueness of each patient and their family, recognizes culture, and encourages affirmative, rather than traumatizing, provider reactions.