::::::::::Becoming::::::::::

i carry you with me...

2012-01-29T14:54:00.000-08:00

i carry your heart with me(i carry it in

my heart)i am never without it(anywhere

i go you go,my dear...

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud

and the sky of the sky of a tree called life;which grows

higher than soul can hope or mind can hide)

and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

e.e. cummings

Tattoos as a form of ritual and meaning are not a recent phenomena. The art of tattooing occurred even 5000 years ago. It is said that during the Crusades, Christians tattooed a cross on their hand or arm to ensure they would receive a proper Christian burial.

Bereavement or memorial tattoos using concrete or metaphoric images have become widely popular in the past several decades as adaptive mourning rituals. Grief rituals contain “symbolic elements, presence of emotions, presence of spirituality, meta-awareness of performing rituals remembrance, and chosen others to participate in the ritual” (Gowensmith, 2000).

I've had several regular readers ask me to post more information about my back tattoo. The reason for my own tattooing is very intimate. I do it mindfully so that I may mark those profound experiences of suffering, love, and transfiguration. And also, to furrow those enduring connections to my beloved Dead deep in my being.

The above photo was taken last week at Red Rock Crossing in Sedona, Arizona by Tim Condron, an amazingly talented photographer. It says:

The soul still sings in the darkness telling of the beauty she found there; and daring us not to think that because she passed through such tortures of anguish, doubt, dread, and horror, as has been said, she ran any the more danger of being lost in the night.

Nay, in the darkness did she, rather, find herself.

--St. John, Dark Night of the Soul

There are two alchemical symbols at the bottom of this verbiage, one for brass and one for gold. They represent something Sant Keshavadas once said which rendered me speechless:

Go ahead, light your candles, burn your incense, ring your bells, and call out to G*d, but look out. Because G*d will come and He will put you on his anvil and He will fire up his forge, and He will beat you and beat you until He turns brass to pure gold.

For me, there were no two more meaningful proclamations about the dark night of soul that so many traumatically bereaved endure. From formlessness into the kiln, and from the kiln into transformation.

The tattoo was done by a local artist, Siva Om, and they contain the ashes of my dead child.

To some, this may seem macabre.

To me, it is pure love born of the fire. And now, everywhere I go,

"i carry ^her^ with me"

*********************

If you have a memorial tattoo, what does it mean for you?

G*d closed my eyes: Now I can see

2012-01-25T07:44:00.000-08:00

"For a man to truly know his path, he must close his eyes and walk in the dark."

San Juan de la Cruz

The movie, Bella, was one of my favorite "happy-ending" films of all time. In particular, this scene moved me to tears.

G*d closed my eyes: Now I can see.

Those words, the first time I saw the film, elicited tears from deep within the well of my heart.

Sublime.

Blindlessness is the ability to look but not really see. I've been practicing mindful seeing for several years now ("practicing" being the key). And the world truly comes alive when we truly see it.

People. Emotions. Stones. Insects. Blinking lights. Engines. Cold breezes. Birds. Detritus. Flowers. Clouds. Soil. Garbage. Did I say people?

I've been noticing a man who is blind recently. I've seen him three times. And as I've watched him circumnavigate the neighborhood, I found myself marveling at the way he truly sees and knows the world far more intimately than I.

While at Starbucks this morning, I stood behind two people, as a large crowd came through the door. At the end of this crowd was the man who is blind. He came in last, behind the others. I watched him come through the door slowly, his probing cane leading the path, and he lined up, with deliberate accuracy, seven customers behind me as I was ready to place my own order.

Spontaneously as I placed my order, I surreptitiously added a $20 gift card for the cashier to give him anonymously. I didn't have a Kindness Project card ready, but it didn't matter at all. I whispered to the cashier, "If he asks, tell him its because of his beauty in the world as part of the Kindness Project."

I hurriedly left and sat in my usual spot outside, around the corner, thinking about my own sight, both the literal and the figurative. And my home. And my family. And my job. And two legs. And food and running water. And friends. And Chey... and feeling thankful. Yes, thankful.

About 15 minutes later, he came out, his coffee in hand, and with an ear-to-ear smile that brought tears to my blindless eyes.

Perhaps, in that moment, and without even knowing, that stranger opened my eyes so that I could really see.

FOX News and Alan Colmes: Is there any historical memory at all?

2012-01-03T21:10:00.000-08:00

There is outrage and deep sadness in the world of bereaved parents. Alan Colmes, of FOX News, called Republican Presidential Candidate, Rick Santorum, "crazy" for spending time at home with their newborn baby, Gabriel, who died two hours after birth.

Now, I don't talk politics because they are private and I prefer to protect my political views. What is not private about me is that I am fiercely pacifistic, give often and freely to charity, believe that human beings have a moral and spiritual responsibility to care for one another, and that I care deeply about Mother Earth, exemplified by nearly four decades of vegetarianism and other lifestyle choices. I will also say, and this will not surprise my readers, that I would not vote for Santorum.

So, politics aside, what Alan Colmes said was despicable. Not only despicable, but ignorant. In addition, the public commentary is even more disturbing. People politicizing the apolitical. The death of a child is not partisan. And I'm guessing that how much a parent loves and attaches to his or her child has nothing to do with being red or blue or green or tea. Jacques Ellul, law professor and philosopher, speaks of this politicization process in the book Political Illusion:

"...The first great evil from which most other evils spring is politicization (the act of suffusing everything with politics and dragging it into the political arena)... Anything not political does not arouse widespread interest; it is not accorded any independent existence in our politicized world."

Politicizing the death of a child.

Beyond that egregious violation, the thanaphobia and ignorance of death in our society continue to astound me. Public comments such as: "It's morbid to spend time with a dead body," and "Who wants to be around a dead person?" and "Only creepy people touch the dead" and "That's just not normal" baffle me.

Actually, on the Gaussian curve of history, the entire idea of strangers taking care of our dead is the abnormal thing. Do people truly believe the funeral industry has existed for centuries? Uh. Who do you suppose took care of the dead 100 years ago? Heck, 50 years ago in some places. Families did. And it was often a much more humane and healing process of farewell. Yes, people took care of their own dead. The institutionalization of birth and death, occurring around the same time, is a contemporary phenomena. Bringing your child home after death is common practice in many areas of the Western world today (New Zealand and Australia for example). Dead children were laid out in the White House. Today, indigenous cultures continue take care of their dead. And, the home funeral movement is making a strong comeback. Ethnocentrism = nonplussed. Has this "expert" ever taken an anthropology class or has she counseled bereaved parents for 15 years or has she been with a mother who had to give birth to a baby prematurely knowing the baby will die, or has she been with a father who just found his dead infant in the crib or has she been with a family in the hospital whose teenager was just struck by a car or with a family whose young child was dying of cancer or been with a family as they disconnected their child from life support? No? She hasn't? Well, in that case, Helen Merrell Lynd has something to say to this expert and others who engage more in judging, shaming, and blaming others than expressing metta (loving kindness) or karuna (compassion) to others:

‘It is relatively easy to entertain multiple possibilities of truth and of right action if one remains a spectator on the sidelines.’

-Helen Merrell Lynd

People. Get over your death anxiety/aversion/fear/avoidance. Death is, as Anne Morrow Lindbergh noted, the "great leveler". Let's hope its never your child, but even if its not, someday someone you love very, very deeply will die. Death will mark you. I assure you. Death will mark you. And He is a great teacher. Being with Death and accepting the reality of your fate- and the fate of all those you love- will make your life bigger, not smaller. Ritual is normal, human, and a sacred part of the human experience.

So, if you dare and if you have the courage it takes to live a very big life, take a glimpse into the life of Layla, a beloved friend's baby girl (*emotional*). We can learn much from this precious little child.

Parents have the right to say farewell to their child in any way they feel compelled. Some may choose to spend as much time with their child's body as possible. Some take memento mori photos, very common during the Victorian era and also very common in perinatal death because of the lack of tangible memories. Absolutely normal. Some will take a lock of hair, a foot and hand print or mold. Some will kiss their child's lips, hold them closely and say things they need to say. Some will drape their child's lifeless body across their lap- think Michelangelo's La Pieta. Some will choose otherwise, and some regret their choices.

In my 15 years of both clinic practice and research, most parents who do the former do not regret their decision to be with their beloved dead child. Many parents who choose the latter, who feel in the moment that they cannot tolerate the emotional surge and so turn down the chance to be with their child, or as Kristi-mother of beloved Danny says "bow" to the pressure of others- do regret it. Not always, no, but very often. Either way, to assert that this behavior is "crazy", as if no one in history has ever or would ever want to see and hold their child who died or is dying- well- it causes me to ponder what university issued that degree...

The MISS Foundation has issued a press release in response to this unbelievably cruel and ignorant blunder. I would hope that Mr Colmes would be mature and wise enough to respond swiftly with humility and compassion, bowing his head to bereaved parents around the world and asking their forgiveness.

Sadly, I'm not optimistic. This is, after all, politics. Colmes- give me a call. We'll talk.

The MISS Foundation Asks for Apology from Fox News to All Bereaved Parents

MISS Foundation families were shocked to hear the comments issued from Alan Colmes on Fox News on January 2, 2012. Mr. Colmes’ reference to Mr. Santorum's baby who died, and his desire to spend time with the baby's body during the postmortem period, as "crazy" exemplifies his lack of compassion, intelligence, or historicultural wisdom.

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To hold, see, photograph, spend time with our children after their death is a privilege, honor, and deeply important part of the ritual of grieving. It is not "crazy."

Phoenix, AZ (PRWEB) January 03, 2012

MISS Foundation families were shocked to hear the comments issued from Alan Colmes on Fox News on January 2, 2012. Mr. Colmes’ reference to Mr. Santorum's baby who died, and his desire to spend time with the baby's body during the postmortem period, as "crazy" exemplifies his lack of compassion, intelligence, or historicultural wisdom.

"Throughout history, humans have spent time ritualizing and saying farewell to their beloved dead. Mr. Colmes’ portrayal of such an innate and natural experience revealed far more about Mr. Colmes’ character than Mr. Santorum’s," said Dr. Joanne Cacciatore, founder of the MISS Foundation and a researcher and professor atArizona State University who studies parents experiencing the death of a baby. "This is absolutely normal and common and can reap significant psychological benefit. Spending time with their baby after his or her death is important to many families, according to my research."

The willingness of Fox News to air Mr. Colmes' portrayal revealed the deep-seated ignorance of our culture that is perpetuated by a very judgmental media. Beyond insensitive, the comment aired on the Alan Colmes show was more than a cheap shot. It was a slap in the face to bereaved parents. The death of a child can happen to anyone, it knows no boundaries of race, creed, religion or political affiliation. Attacking bereaved parents to score political points or using bereaved parents to further political goals is beyond shameful.

The MISS Foundation is glad to hear Mr. Colmes apologized to Mr. Santorum, and now, on behalf of millions of bereaved parents around the world, the MISS Foundation is asking Fox News and Mr. Colmes for a public apology to all bereaved parents. Cacciatore continues, "To hold, see, photograph, spend time with our beloved children after their death is a privilege, honor, and deeply important part of the ritual of grieving. It is not "crazy." Rather it is a choice, a practice, and a skill of choosing to be emotionally vulnerable and present to the resilience we are all capable of after grief comes -- if only we were all supported instead of ridiculed."

The MISS Foundation is a nonprofit 501c3 organization that CARES for families before, during and after the death of a child of any age and from any cause. For information about services the MISS Foundation provides, visit:http://www.missfoundation.org, email kathy.sandler(at)missfoundation(dot)org or call 888-455-MISS (6477).

###

The Irrelevance of Time

2011-12-31T14:58:00.000-08:00

ABC News recently published an article about a research study: Bereaved parents can die of broken hearts. Literally.

Yes, yes. We know this.

We bereaved parents know this.

Even if we physically survive our child's death, most of us experience the 'death' of our former self, and have to choose to be reborn- transfigured- into another being. Our worlds, too, are transformed.

Nothing, and I mean nothing, is the same. Ever. No sunset or sunrise is ever the same. No finch's call. No lapping wave. No moon glow. No north star's shine. No drive home. Nothing.

Time becomes irrelevant.

The past and future merge into every present moment, and time stands as a soldier waiting. Waiting for the pain to ease. Waiting to hear their voice. Waiting for others to understand. Waiting for some relief. Waiting to hold them again.

Time was irrelevant for me in 1994. Time is irrelevant in 2012. Yet, time seduces us with its illusion, doesn't it?

Until a few years ago, I found myself searching for her in the eyes of other girls with their long legs and their rock band t-shirts and their bubble-yum breath and their straw-colored hair. My eyes would pan the crowds for her identity. I knew that, for me, one way for me to quench that longing would be to transform the evanescent into the tangible. Tricking time, the photograph is an age-progressed forensic drawing, masterfully created from six newborn photos, of Cheyenne...

This is what I lost. And everything between 1994 and this picture. And everything from this picture until I take my own final breath. This is what I lost. Do you see her? Isn't she beautiful?

I no longer search for her in crowds, scanning the eyes of strangers and wondering... Like a cheap psychological trick against time, the charlatan, for a moment, is fooled.

And for that, I am thankful. Speaking of thankfulness...

It takes many years and a lapse of time- and much, much work- for bereaved parents to unearth the type of beauty, and gratitude, and pure joy, and vibrancy for life (speaking of time lapse, that is a link to a must see TED) which rivals the pain, loss, shame, guilt, suffering, and despair.

It remains, for me, one of the great mysteries of the human experience. That is, how the darkness tears our lives open and empties us into the giant chasm of the mysteriously unlimited. Time not only stands still but it feels irrelevant in moments of such profundity. My life has not grown smaller from the grief; it's grown larger, less constricted, more meaningful, and with a depth and breadth I'd not have imagined 17 years ago.

Ah, but what would I give to have her back?

All.of.it.

Zora Neale Hurston, in Their Eyes were Watching G*d, wrote:

A thing is mighty big when neither time nor distance can shrink it.

I trust that until we are together again, time will continue to be irrelevant, a mere drop trickling into the ocean of the love we share. And I trust that one day, I'll awaken and I'll hold her again, wherever and in whatever way that may be.

And I will understand why time and space was so inconsequential in the big-ness of her death.

May each of you experience the irrelevance of time as 2012 arrives with its hopes and wishes and aspirations. May you feel only the love, the big, boundless love that dwarfs time, space, and Death.

And to you, little-big girl: I love you Chey. Neither time nor space is relevant in our place of love. I just love you. Timelessly.

***************************************************************************

To the girl who would've been her best friend-

who hiked barefoot like me

and who was a proud, tree-hugging herbivore-

Happy 19th Birthday Katie Eide.

Your mom and dad love and MISS you so much.

Tell my girl hello and that I love her.

Can't wait to meet you.

The Great Ocean of Sorrow

2011-12-06T22:50:00.000-08:00

This has been a long, hard week. Sadly, many newly bereaved families joining our tearful tribe; many calls from the 'parking lot' of Christmas crises; and too much work with very few resources contributed to this 90+ hour work week. Exhausting.

When I'm exhausted, I know what to expect. I'm much more emotionally fragile, and that's okay with me. That is, when I'm not driving.

So, tonight, at 11:30pm while commuting over the long 125 miles from support group at the MISS Foundation office in Phoenix back home, I had what I'll call an ebb of contemplation which turned to sadness which turned to anguish which turned to you'd-better-pull-off-the-freeway-now-before-you-can't-see moment.

And so I did.

I cried and cried. Got back on the road. Pulled over again. And cried and cried.

Uh. Apparently, it was my time?

Okay, okay, okay. I get it.

Deep breaths, when ready, and back on the road.

I made it almost home before the tears came again. By the time I got into my driveway, it would be the full-on, gasping, suffocating, swallowing gulps of air kind of sobbing. I stood outside myself as it was happening: "Isn't this interesting?" I asked my subjective self. "What the heck?" I wondered. "What brought this on tonight?"

I went through the list.

Exhaustion. Check.

Emotional mimicry. Check.

Time of year (Merry? Merry? Really??). Check.

I just miss her. Check.

She should be here. Check.

Really feeling her non-physical presence. Check.

I don't wanna do this anymore. Why do I have to do this? Double check.

20 minutes later, and I pulled down the rear view mirror, wiped off the mascara from my face, and came into the house.

Sitting on the table was a box with my name on it. I recognized the return label as a woman I'd interviewed for a research study this summer and the summer prior. She is from a totally different region of the U.S., a sub-sub-sub-sub culture with virtually no shared commonalities with me. And yet, with the most important of all single commonalities: She is a bereaved mother. Her beautiful 8-year-old son died in a farming accident. I opened the package. Out fell a card and a rectangular shaped gift wrapped in Easter paper.

The note said that she was, of course, sad for why we met. But that she "rejoiced that G*d chanced our paths to meet..." and that she thinks of me "so often" and how I've helped her. She had bought something for me at a thrift store... something I'd seen in her sister's home during the research study, and mentioned that it was a powerful image.

This grieving mother wanted me to have this as a token of gratitude.

I gently tore open the pastel wrapping, imbued with painted eggs and bunnies with fluffy tails, and found the painting, and I cried more. It is the image of a man, head bowed, hands together, praying or meditating, somber. I imagine him to hold deep sadness in his heart. I imagine his child died- or his wife- or his mother. I imagine he feels alone in the world. I imagine he doesn't sleep or eat much anymore. I imagine breathing is painful for him. I imagine many things about this man's grief, his story of life and loss and death...

I cannot express in words what this small token from her meant.

"Goodness, what's next tonight?" I thought to myself (dare I ask?).

I sat with my many emotions for awhile, and ended up in deep meditation, leading to some prajna around my emotional fragility. What came to me was this thought:

My tears are not my tears alone. My tears fall into the creek near my home, which lead to the river miles away, which then lead to the great ocean of sorrow; in this place, other creeks and rivers have carried the sorrows of many other mothers, and fathers, and sisters, and brothers, and grandparents, and friends, and aunts, and uncles, and neighbors, and strangers who have also deeply mourned. The myth of separateness is an illusion to keep us safe from vulnerability but which stifles realization of our connectedness; this great ocean of sorrow merges many to one, the knowing into the unknown, the wisdom into the wonder, and the questions into the big mystery, throughout history and across land masses and beyond culture. Every tear I shed tonight and all the countless tears shed over the past 17 years and five months since her death is a part of the painful love story in that great ocean of sorrow, where the tears of many others, yours included, have emptied into this vast ocean. We may not even speak the same language, yet we know one another more intimately than most all others. Our tears unite us through the pangs of longing and the unified sadness and horror and despair. And I know that I am not alone in my suffering.

And neither are you.

Hold that truth deep within your heart.

And neither are you.

Sarah Love, full of her name

2011-12-01T15:10:00.000-08:00

Thank you, Sarah Love and Arizona Foothills magazine for this lovely article about my work with the MISS Foundation. I do not exaggerate when I say that the recent two years of increased attention to the MISS Foundation from local media venues has been truly astonishing.

Listen- people are starting to hear and see you, bereaved parents. The world is hearing your collective voices... your children's collective voices. The silence of the bereaved will soon be a "once upon a time" story.

I want to send a very grateful nod to the little boy, RST, who is helping move this along at a very rapid pace. Thank you little man, and your mama.

The direct link to the article is here or you can read most of the interview:

Most of you know her as Dr. Joanne Cacciatore, founder of the MISS Foundation and professor and researcher at Arizona State University. Her expertise is helping those affected by traumatic death. As a mother of five, as she says, “four who walk and one who soars,” she understands how these parents are affected by this tragedy. These aspects made her start this nonprofit organization with 75 chapters around the world. These chapters help aid parents whose children are in the process of dying or have already died. As an advocate of “green” mental health care, she is also a member of Associations like the American Psychotherapy Association and more. Her work has been featured in People and Newsweek magazine, the New York Times, Boston Globe, CNN and more.

Arizona Foothills Magazine: In your words, what is your foundation and your main goal?

Joanne Cacciatore, PhD: Every day in the United States and beyond, infants and children die. The MISS Foundation has grown from a small, local nonprofit agency, which I founded in 1996 to a huge international nonprofit with 77 chapters around the world. The MISS Foundation C.A.R.E.S. for families who are enduring life’s worst tragedy- the death of a child. We can’t save children, so we help save their families. We focus our efforts on counseling, advocacy, research, education, and support- thus the acronym C.A.R.E.S.

AFM: How does it feel to do something amazing and give back and help counsel those in need?

JC: Well, it’s a bittersweet calling without any doubt. The degree of suffering I lmean, can you imagine, for a brief moment, what would happen in your family if a baby or a child were to die? Unspeakable and unthinkable loss. Yet, I am able to join them in their suffering and endure the pain with them as we navigate their own unique experience of traumatic grief. Not everyone has the tragic privilege to work with these profoundly beautiful families. The children who died—those are the really amazing ones—from beyond this world, they inspire us to live more fully, love more deeply, and to more fully inhabit our own lives. I feel honored to know all these children through their parents, grandparents, siblings, aunts, uncles and friends.

AFM: While in college, did you know this was the path you wanted to take? What pushed you into this field?

JC: This work was my calling. In 1994, my baby daughter, Cheyenne died, from unknown causes. I was catapulted into a dark night of the soul that would literally change my entire world. I could barely get out of bed many days, and I was in deep, dark abyss for a very long time. She died on July 27, 1994, and sometime in October, I made a promise to my dead child that if I survived the pain, because I wasn’t sure I would, I would make sure other families enduring this tragedy would not need to endure it alone. I started the MISS Foundation in 1996 making good on that promise to her. I hope one day I will see her again, in whatever way that might be, and that she will smile knowing that I lived up to that promise.

AFM: Tell us about an experience or moment that has touched or moved you, something you will not forget.

JC: There are far, far too many for me to describe. I will tell you that I have received thousands upon thousands of letters from people around the world thanking me for this work, from Romania to Africa to Italy to New Zealand. I learn something profound from every family, from every child who died. My heart grows bigger from every experience, and its truly the most rewarding, albeit tragic, work to which a person could commit his or her life.

AFM: This foundation is about helping others. What have you learned about yourself?

JC: I have learned that the capacity for a human to bear suffering is equivalent to their capacity to experience love. The reason for big suffering is big love. From exploring death, from facing death every day, I have learned to truly live. That is a gift, a gift I believe few know or discover. A gift for which I am grateful.

AFM: What is the process of helping families discover hope?

JC: I’m not sure I see that as my role. I join them in their suffering so they do not suffer alone. I know many do experience hope as a byproduct of having a willing witness to their pain, and that is a truly magical thing—to feel despair and then to discover there may be hope. I suppose I help them be with what is true for them, moment-by-moment, and the hope and the healing come, organically, from that relationship.

AFM: You say, “I don’t want to merely survive. I want to become.” How does this foundation make you “become”?

JC: I become more fully human by being a willing student of life. Every day of my life I am becoming more fully human. I learn from my students at ASU, I learn from the ant working in my yard and the clouds moving across the sky. I learn from my work at the MISS Foundation. I hope I’m becoming and learning and growing and evolving from now until I take my final breath. I believe that hubris incites stagnation, and I never want to be in that place. Humility is key. And death keeps us very, very humble.

AFM: You also said, “The more I am present with the reality of human suffering—my own and others—the more genuine and full life I am able to lead.” How does this make your life more fulfilled?

JC: It is impossible for anyone to escape human suffering. Someday, someone you love very, very, very much will die. And you will experience grief; profound suffering that will bring you to your knees. No pill, no wand, no magic spell, no prayer or mantra or bottle or book will fix it. Human suffering is a part of the human experience. When I constrict my willingness to enter the dark places, to truly feel the suffering of my life and my loss, then I also restrict my capacity to feel the kind of big, rushing, capacious love and joy and passion for life. The poet, Gibran, said that only ‘he who has looked into the eyes of sorrow will ever truly look into the eyes of joy.’ I absolutely believe that. We numb or distract or evade or deflect any of our painful emotions and we risk fragmentation our true selves. Our world becomes very, very small and very limited.

AFM: What impact do you hope to have on the future?

JC: I hope to see many more skilled practitioners in the area of traumatic grief. I direct the Graduate Certificate in Trauma and Bereavement program at ASU to help train specialists in this area. Frankly, there aren’t enough trained providers in the United States to help the numbers affected by traumatic death. I’d also love to see the MISS Foundation offices in all major cities around the world. We have a misperception that traumatic death is a ‘family’ issue. It’s not. It’s a social issue that affects every one of us. The effects of child death, in particular, are far more enduring that people realize. I’ve spoken to many families who talk about their grandmother’s loss and how ‘she was never the same after that’ or how ‘our family changed forever.’ We can, together, create a more sane and compassionate world for the bereaved. But it begins with education and a willingness to tolerate very, very painful and traumatic human experiences.

So ultimately, before my own death, I’d love to see the world transformed into a more tender and compassionate place for those suffering. Those are some big aspirations, indeed!

AFM: To those who want to help, what do you recommend?

JC: We desperately need funding. As you can imagine, the topic of infant/child death is hardly sexy for grantors, and thus we struggle obtaining financial support from philanthropic groups. We need skilled board members who can help in meaningful ways and who have connections to key community leaders. If folks are interested in our mission, a mission of the heart, mind, and soul, please feel free to contact Kathy Sandler, MSW at Kathy.Sandler@missfoundation.org or call the office at 602.279.MISS.

Many, many thanks for reading about our organization!

Kindness, Compassion, and Connor...

2011-11-13T13:45:00.000-08:00

Me and Connor at the Evening of Kindness

a fundraiser for the MISS Foundation

Connor and his little brother, Kyle

who offered the money they were paid for the night as a donation to our cause

The heart knows neither duality nor the limitations of time and space.

-Sri Sathya Sai Baba

Last night I spoke at the MISS Foundation's fundraiser 'An Evening of Kindness' to celebrate the more than 1,000,000 Kindness Projects which have been done (literally) around the world since the project's inception in 1997.

The event was held at the Merrill Estate in the generous spirit of Bruce and Janis Merrill, and with the aid of many amazing volunteers to whom I am eternally grateful.

Valley business leaders, philanthropists, and those touched by the work of the MISS Foundation attended. Ambassadors Maya and Woody Thompson came in memory of their beloved, gorgeous little boy, Ronan Sean who died in May of this year as a result of neuroblastoma. Leroy was there remembering Jason. Shawn and Theo were there remembering Zach. Melissa was there to honor Tyler. Michele was there to talk about International Kindness Project Day on July 27th and to remember Branden and to thank the compassionate folks at Circle K for helping Michele "be his mom for a day." Kathy was there to remember Lizzy. Mark and Sandie brought photos of Zach and Katie to share their love and their lives. And many, many more... Kathy Sandler's two children, who also worked the event, donated their money back to the foundation. Even the guitarist, hired from Flagstaff, decided to donate his time after the event in memory of his beautiful sister, Mandy.

To say there were many emotional moments and much, much suffering in the room would be an understatement.

Simply, there is no material place on Earth which can hold the anguish in that room last night. No matter how many beautiful kindnesses are born from the pain of this loss, the means never justifies the end. Ever. Still, exploring the beauty from pain is a choice we get to make, when we are ready, as bereaved.

I want to share one magical interaction I had with a young man, Connor, who reminds us that we have much to learn about time and space and age and wisdom. Our greatest teachers are, often, the youngest...

After all the speakers presented, Connor approached me. He had been volunteering all night, and I'd noticed his warm smile and quiet demeanor. He thanked me for our work, and he said that he nearly cried while I was speaking. He looked into my eyes and I could see and feel his compassion. Those moments are all too rare in this chaotic, no-time-to-pause-for-the-pain world. Yet, standing before me was a very young man who had given pause to my words and clearly felt them deep inside his heart. He said that he wanted to donate his earnings for the evening to help the MISS Foundation. He believed in our cause. My eyes started welling with tears. His did too. We just stood there looking at each other for a moment... this young man, a stranger, who opened his heart so far and wide, with such breadth and depth that time literally stood still. It's a rare thing in this world. I knew I was standing in the presence of a giant, and I was humbled.

As he promised, at the end of the evening, Connor approached me to hand me his earnings. So did his wonderful younger brother. They wanted to give. They weren't afraid of us like others often are. They did not recoil at the talk of child death. In the only way they could help, they wanted to help.

There were so many, many more magical moments last night. People who came to me and shared their sorrows and their losses and their sufferings. Those are the things which remind us of our humanity, of our shared connections to one another and to the bigger picture. I'm reminded of Trungpa Rinpoche's admonition to "hold the sorrows of the world in our hearts while still remembering the great Eastern Sun."

Connor and I exchanged numbers as he is off to college next year. He promised to stay in touch and offered to volunteer again until graduation next May. I want to express my gratitude and respect to his parents and his grandparents and his aunts and uncles and other family members who helped to raise him (and his brother) and who must have a surplus of generational loving compassion, as it obviously spills over his own heart and into the hearts of others.

And if those magical moments were not enough, in a Jungian twist of synchronicity, I discovered that Connor was born on the day we buried Cheyenne in 1994, and I wept. I imagine she'd have liked him very, very much too...

The Paradox of Suffering

2011-11-07T06:44:00.000-08:00

Yesterday I received an email from a delightful Italian man I met long ago. I didn't realize, ever, that he followed my blog:

I have been reading your blog, and I have a question for you: are you able to be happy? to have lighthearted moments? to laugh without a worry in the world? Or is the dark cloud of grief always hanging over your head? I know, this is none of my business. But I have been wondering this for a long time and I only got the courage to write you today.

Those who do not know me personally and intimately might believe my life to be macabre, full of sadness, grief, trauma, and loss. Oh, yes, and in fact, I cry nearly every day.

But, there is another aspect of me often unshared publicly because traumatic grief is the centerpiece of my work's nature. Here is my response to this lovely man:

My most honest answer is that I'm utterly and completely happy and fulfilled, even when I feel sadness and grief. I know it sounds like a paradox, doesn't it? But I cannot imagine feeling better and more content in my life than I do... I laugh at myself often and I wake up every day excited for whatever may come, even if it is tears. I might cry a lot, but I laugh too, and feel so much more connected to my authentic self and everything else in the Universe. Death does this for me... He is like a box of darkness which too is a gift. The more I am present with the reality of human suffering- my own and others- the more genuine and full life I am able to lead.

I do not want to be a fraud. I don't want to pretend to be happy all the time, like life doesn't hurt like hell. I don't want to pretend that I am not afraid, weak, vulnerable, or helpless at times. My life is bigger than pretense, and I owe it to my dead child and my dead parents and my dead best friend and the many beloved dead of the many families I know and cherish to live my life in authenticity.

That also means that with my big suffering comes big joy, the kind of unmitigated elation of life's simple gifts. An unbridled passion for budding flowers, and working ants, and glimmering snow, and pastel clouds, and the sound of children's voices... Everywhere around me I am surrounded by wonder and awe. I try to be awake to the preciousness of it all, even a single breath. Every day is sacred and vibrant. Vibrant in ways I never imagined before Death introduced Himself to me. My life went from fifty to fifty thousand colors.

How could I ever put the dark crayons back in the box now?

It's taken me a long time to see the beauty in the pain, the paradox of suffering. It's what's real. It's the only thing, besides love, that is real.

The First Josephine

2011-11-03T16:17:00.000-07:00

The past is never where we think we left it.

-Katherine Porter

Once upon a time, there was a very, very poor family who lived in Sicily. Rose and Nicola lived in a tiny cramped apartment in the largest city on a small island. She was a seamstress, and he was a barber who loved to play the mandolin. She was strict, direct, and detached. He was quiet, withdrawn, and private. They had three children: Mary, Josephine (my mother), and Salvatore. They had three children.

Times were hard in Sicily during the early 20th century. Child death was common; infant death rampant. The Grim and his ilk stood around every corner, pillars of salt, waiting with their baited breath for a communicable illness, or scarcity, or traumatic birth, or malnutrition. Then they rushed in, mercilessly, and took out, sometimes, an entire family.

I was cleaning out old boxes of family photographs just before my Nanny's death. She was in her mid-80s at the time. Photo after photo I searched in wonder. Some had edges worn from too much handling, others with faces faded beyond recognition. I stumbled on a photo of a baby on a horse.

"Who's this?" I asked her.

She took the photo and looked at it.

"That's Josephine," she said.

"Josephine?" I asked. "That doesn't look like mommy."

"Oh no," she said, "that was the first Josephine."

I stopped and looked up at her, breaking my gaze into the box, quizzically.

"What do you mean the first Josephine?"

In her strong Italian accent she explained that her first baby, Josephine, died at almost a year old. Pneumonia, she thought.

I nearly gasped out loud.

"So my mom is the second Josephine, named after the first?" I asked her.

She went on to explain that she had a second baby the next year, very soon after the first Josephine died. She named the second baby Josephine. The second Josephine lived for six months and died in her sleep.

At this point, I felt utter disbelief. I didn't understand. Two, wait, three Josephines? Enter confusion, frustration, and language barriers.

Indeed. It was true. "But - how could I not have known? Why didn't anyone tell me?" I thought.

Nanny's third baby, named Mary, lived.

Her fourth, she named Josephine again, was my mother. The third Josephine. My mother was the third Josephine.

My mother, Josephine the III, died ten years ago tomorrow. I don't know where she is now, but I miss her in my life. My father, John, died six years ago tomorrow of what I'm sure is a broken heart, four years to the day after my mother. He was the first John, the only John. I miss him too. His parents had 14 children, many of whom died long before they did.

My mother's parents had five children. Five, not three. Josephine, Josephine, Mary, Josephine, and Salvatore.

Times were hard, indeed...

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Dear Mommy,

Tomorrow it will be ten years, an entire decade, since you left this Earth. How did that time pass so quickly? I am a daughterless mother and a motherless daughter now. And I miss you in my life. There is so much I'd share with you, much of which I'd have once been reluctant to share. There is so much I'd say to you, much of which I'd have once been too fearful to say.

I know you loved me now. I know why it was hard for you to show me. I get it. And I'm so sorry I didn't get it then. It's clear, so very clear now. And I feel I could've made it right. Damnit, I really miss you and daddy. And the kids miss you so much. And Joe misses you. And Mark and Eda and John.

I don't know where you are, but I can hope- can't I?- that you are with Chey, and Daddy, and Peppino, and your two Josephine sisters, and Nanny, and Grandpa, and all our other beloved Dead.

My throat is tight with sadness and I will cry many tears in the next few days. I remember the look in your eyes at the hospital. I remember watching them resuscitating you. I remember the anguishing life-support decision. I remember much that comes back to haunt me every Fall. But especially this year. Year ten. An entire decade.

Remind Nanny that she has five children, not three, and that I always remember them all, will you? Tell her that the first Josephine's photo is in my butsudan next to Chey's ashes. Nanny will understand that now, I'm sure. And tell daddy that I love him very, very, very much and that I forgive him, and that I'm sorry I was so willful and stubborn. I come by it honestly, you know?

Mostly mom, if you can hear this, tell Chey that I love her with my entire heart. I miss her presence in my life every day. I wish it was different. And that I'm sorry I couldn't save her. Let her know I've finally forgiven myself for that. Finally.

Thanks for visiting my dreams so often. And remember that I love you and I know you truly love me. I know. I know.

Joya

We exist. They existed. Please, see us.

2011-10-21T09:27:00.001-07:00

Dear World,

We are men and we are women and we are gender-free...

We are Democrat, Republic, Libertarian, Independent, Green, Apolitical, and ...

We are rich, and poor, and middle class, and classless.

We are Christian, and Jewish, and Muslim, and Buddhist, and Sikh, and Hindu, and Wiccan, and Atheist, and ...

We are employed, and unemployed, and partially employed, and recklessly employed.

We are Irish, and Native American, and African, and French, and Haitian, and Romanian, and British, and Tibetan, and Italian, and Mexican, and Germanic, and Norwegian, and Jamaican, and ...

We are high school dropouts, we are college educated, and we are streetwise...

We speak one language or many languages, and we are from all parts of our Planet Earth.

We are young, and middle aged, and old, even facing our own death.

We are from the north, the south, the east, and the west.

We are a family of one, and two, and three, and ten...

We are both traditional and non-traditional families.

We are engineers, and janitors, and doctors, and teachers, and firefighters, and lawyers, and athletes, and marketers, and taxi drivers, and pastors, and rabbis, and elected officials, and administrators, and nurses, and maids, and childcare providers, and artists, and poets, and landscapers and...

We are tall, short, and medium, and emaciated and healthy and round and obese.

We are all around you, everyday. Everywhere you go, we are there, but you may not see us.

We are bereaved parents....

We have suffered life's worst tragedy. We have suffered a reality you dare not imagine.

Our children have died from birth to toddlerhood. From toddlerhood to young childhood. From young childhood to the teens. From the teens to young adulthood. From young adulthood into middle and late adulthood. Our loss is anachronistic, out of time, out of place. Our children died from cancer, and stillbirth, and fires, and car crashes, and SIDS, and murder, and suicide, and drug overdose, and drowning, and disease, and premature birth, and wars, and natural disasters, and congenital anomalies and...

Despite all the differences in who we used to be...

Now, we are bereaved parents. And siblings. And grandparents. And aunts, uncles, godparents, friends. And our lives will never, ever, ever be the same. This common thread is woven through our lives, and will remain part of our painful tapestry from generation to generation.

You can help us.

Please visit the front page of the Arizona Republic to learn more about federal legislation for all bereaved parents.

Then, please, support us by signing this petition and emailing your Congress women and men and asking them to sign on to and support this important legislation.

We are bereaved parents. We are one, despite our differences. Our grief unites us.

English Breakfast Tea with Some Tears, Please

2011-10-05T08:34:00.000-07:00

It was an early morning start, unusually brisk for Phoenix. On my way to the office, I stopped at Starbucks for English Breakfast Tea which I often drink with a dollop of cream when I'm thinking of Elisabeth.

As I was mixing my concoction of stevia and cream, a man came up behind me.

"Nice art," he said. "I've never seen anything like it."

"Hmmm..." I said silently to myself. "What art? Is he talking to me?"

So I looked at him, nonplussed.

Then, I remembered that my hair, pulled back in a ponytail with a racer back, black organic cotton dress, allowed my very large back tattoo to be mostly visible.

"Oh, thanks much," I said.

I smiled and turned back toward the tea which reminded me of my Beloved Elisabeth and our many tea moments together.

As if possessed by a puppeteer, and against my innately shy nature which certainly keeps me less vulnerable to a sometimes cruel and unmindful-of-the-bereaved world, I said to him as he was turning away, "It's an excerpt from Dark Night of the Soul. St John of the Cross."

"Oh," he replied, unmoved by my disclosure.

I smiled. He smiled back. I started to turn again, and for reasons I cannot explain- as this is utterly uncharacteristic of me, and I'd never before disclosed this to a stranger, I actually said, "I got it for my daughter. She died." I waited. Paused. As if surprised by my own utterances.

"The tattoo was done with her ashes."

He looked at me. Straight into my eyes. Neither of us moved for what seemed like many minutes.

And his eyes started to fill with tears. I could see it.

Mine did too.

Then he whispered, "I lost my son."

And in the space between two strangers, a person who I will likely never see again, there was a knowing, an ineffable moment of knowing.

We both walked away from our moment in the Sun together. And my day was transformed.

Some English Breakfast with plenty of room for cream and tears, please?

Grief, Wilson Mountain, and Ro, Peanut, & Jason

2011-09-11T20:15:00.000-07:00

Look at the dark ridge, the very highest point. That was my destination today, >7000 feet

About 25% of the way up the steep trail

About half way up the trail

About two miles from the summit

Above the planes, and helicopters, and eagles

If you do not raise your eyes you will think that you are the highest point.

~Antonio Porchia

Since 1973, I've been awed by the soldier-like pines on Wilson's summit in Sedona. They have stood there for many, many years, proud, dignified, mysterious. From thousands and thousands of feet down, they appear like tiny fuzzy stick people.

Few have made the trek up the steepest, tallest, most majestic mountain to meet the pine soldiers. Since 1973, I've wondered if I ever would, if I ever could.

Today I did.

I stood at Midgley Bridge in awe - and also in some concern - as I stared up the vast expanse at the base of the colossal mountain. I could not discern a trail from the ground despite my willful concentration.

So I stood there deciding if I would do it, uncertain of the ascension, my ability, and my endurance. Thus, if I was to continue, I had to trust both the unknown and my self.

Then, I had a thought: This is like grief.

It's enormous. Overwhelming. Frightening. Untraveled. Uncertain. Tenuous. I wasn't sure how- or if- I could do it. I didn't know where I would go, where it would take me, what I would encounter. Was I strong enough for it? I had so much self-doubt. "How am I going to get all the way up there?" ran through all four corners of my mind. Repeatedly.

Nevertheless, I took the first step into trust.

I trusted through the treacherous rocks, and the steep climbs, and the never-ending hairpin turns back and forth, north to west, to south to east. I trusted through erroneous detours off my right path, and the back pain, and I trusted through aching feet and burning sun and dry lips. I trusted through many moments of doubt; moments when I wanted to turn around and return to the trailhead- when I wanted to give up the trek. But I endured.

I was surprised how I was able to persevere when I focused on each individual moment- as I put one foot in front of the other- taking it one small step at a time...

I started the day before 9am and hiked more than 15 miles up to the summit and back down until 4pm, stopping only several brief times for water and peanut butter. The ascent was to more than 7000 feet, with anorexic oxygen and unfamiliar plants, closer to the clouds and blue sky. Where the grasses were greener and the smells sweeter and the birds sang louder as the world disappeared into the red dirt below me. The soldier pine trees, much larger than they appear from the ground, stood tall in their majestic places on the ridge. A few had collapsed from lightening strikes, gutted by the sky's fire, and others remained unscathed having survived the storms. A red-tailed hawk soared hundreds of feet below, and I realized that the view from above changed my perspective about my former world.

Skinned knees, blistered heels, and sunburned skin. Well worth the journey. What a gift.

*I did this hike for Jason and for Peanut and for Ro as I hold their parents in my heart*

I am you and you are me: A goodbye letter

2011-08-26T16:10:00.000-07:00

I've written my own epitaph. I've contemplated my own Death. I've even planned my funeral in my head.

But I've never written a goodbye letter to my children.

I started thinking about the fragility of life: Death has many faces, and I could die, any day, at any moment.

What would I want my beloved children to know? I wanted to put it down on paper, grab the feelings in my heart, pull them in and sit with them, then let them manifest in letters and words and give them life.

Today, I did just that. What an emotional exercise. My heart literally wept as I imagined each one reading the letter in the event of my Death:

"...Live your lives well. Accept the sorrow with the joy, the ineffable grief with the love, humility with accomplishment. Don't take a single moment for granted. This is it. This moment is all that you have. Don't squander it... Remember me in the sunset and the sunrise and the birds and salty ocean breeze, and the crisp pines. Remember me in your children's eyes and their laughter and their shadows that dance between the clouds. Remember me in the gentle furrows of your face, archiving the ebb and flow- the beauty and pain- of life through the years. I am you, and you are me. We are one. And I will love you beyond this world and into eternity. Quiet your mind and listen for my voice. You will hear me whisper, "I love you and I miss you precious child" and you will know that it is true. Believe in your heart that I am with you always, and I will never leave you. I will be waiting for you to come one day, far off in the future. I will be waiting with your sister, and your papa and nana. And one day, we'll all be together again..."

I've placed the letter someplace safe, where it can be easily found. And while it may be many, many years before the letter is relevant, there was a peculiar sense of serenity in this chronicling. I'm going to call each of them, now, and tell them how much I do love them. And remind them how fortunate I am that I was chosen to be a part of their lives. How truly fortunate and blessed am I?

And once again, sitting with Death has helped me to appreciate, and to live, and to love more fully, more authentically, more wholly.

Sedona Grief Retreat-- where better to welcome healing?

2011-08-09T06:27:00.000-07:00

The magic of Sedona is ineffable. Surrounded by the majestic red rocks, panoramic and picturesque views, wide blue skies, and the brightest star-filled night skies in Arizona, something special happens here to visitors.

Literally.

My dear friends, artists Kara and Hawk Jones and I, invite you to join us for a very special healing retreat for the grieving...Selah.

Registration is now open, and we open our hearts and our city to you. Where better to welcome healing?

(Note that space is very limited)

The Shadow and the Light

2011-07-26T20:42:00.000-07:00

You carry in yourself

All the obstacles necessary

To make your realization perfect.

Always you will see that

within you

the shadow and the light are equal.

If you discover a very black hole

a thick shadow

be sure there's somewhere in you

a great light.

It is up to you

to know how

to use one

to realize

the other.

-Sri Aurobindo

***

Happy Birthday Dad. I miss you.

Chey, 17 years of loving you have passed but the love has not dwindled or grown weary with time. I have so many, many things to tell you. One day, I hope to awaken with your arms around me.

Thank you, Jimmy, for Starlight.

Kindness Project Day

2011-07-20T16:15:00.000-07:00

Live your life as a memorial to your beloved dead. -Joanne Cacciatore

One week from today, on July 27, is our International Kindness Project Day. Cards are available absolutely free from now until next Wednesday.

I never imagined, when starting this initiative in the summer of 1997, that more than one million kindness projects would be committed around the globe in only 14 years.

This project was born in my heart on Christmas eve of 1994. I knew I couldn't spend the money that was rightfully Cheyenne's on my other children. So I took that money and bought toys for underprivileged children, and I delivered them alone the day before Christmas. I dropped them off, wanting as much anonymity as possible, got back in my car hurriedly, and wept for nearly an hour.

I sobbed.

It was bittersweet, though much more bitter than sweet at this point.

Some months later, I was in a shoe store buying back-to-school shoes for my children. I overheard a family with many children debating which one of their children needed shoes more than the others. They all needed them, commented the parents, but they couldn't afford them. I found the store manager, bought a gift card with enough funds on it to pay for all the children's shoes, wrote on a little piece of paper "in memory of Chey", and I quickly left before he gave them the surprise.

It was only 18 months later that the MISS Foundation was born. I didn't name the MISS Foundation - or any of our legislative pieces - or our programs- after Cheyenne. I chose, specifically, not to do that. To do so, for me, felt exclusionary and indulgent.

Similarly, I valued helping others anonymously, knowing in my heart that Chey's death had left me with a greater sense of compassion and agape for others, but not wanting "me" to be recognized for it. Truly, it was not about some act of nobility. It was pure love for my child, a strong desire to make meaning, and newfound- profound- compassion for others. I wanted others to know that this little child lived, this little child died, and this little child continued to matter in this world.

And so my anonymous giving grew. And as it did, the paralyzing grief became more manageable, more reflexive, and I felt something in the core of my being- something inexplicable- that moved me.

At some point, I realized these acts- both the little and the big- were helping me. And, I thought perhaps it could help others who were bereaved. Because simply, you cannot serve others without serving yourself. You cannot give to another without giving to yourself. You cannot bring comfort to another without bringing comfort to yourself.

The Kindness Project was born about a year after the inception of the MISS Foundation. Born of pain. Born of compassion. Born of a love bigger than death.

And today, 17 years later, it is much more sweet than bitter.

I invite you all to join us. For them. For each of us. For the entire world.

***********

RSVP for Int'l Kindness Project Day here

Sticks, Stones, and Nomenclature

2011-07-13T07:53:00.000-07:00

Warning: This entry is sensitive.

Whoever said "sticks and stones will break my bones but words will never hurt me" was either disillusioned or a liar. In fact, the effects of stigmatizing, isolating, devaluing, and marginalizing language cause deep psychological and social pain that often endures long beyond physical wounding.

In 1994, on her due date to be born, my baby- all 8 lbs and 22" of her- with her long piano fingers and her rolls of wrist fat- her black curly hair and deep olive skin- her long torso and long eyelashes- died. Yes, you heard me: My beloved baby- my child- my daughter. Death came into my body, brutally violating me and my motherhood. I felt psychologically raped.

And then, in a flash, she was gone.

Only moments before I was to give life, my Judas body gave Death.

The shock of her death continues to reverberate through the walls of my life. And my suffering was prolonged and exacerbated by the dismissing responses of others, responses that lingered for many months and even years in the aftermath.

Her death also continues to inspire me to live more fully and joyfully. Nearly 17 years later.

Now, back to "sticks and stones".

Let me say this with great clarity to my academic and research colleagues. To the feminists who read my blog. To other bereaved parents and leaders of support groups. To authors of books about grief. To mental health professionals. To obstetrical physicians and nurses and social workers. To religious leaders worldwide. To anyone who will listen. To the dead and and to the living. To G*d and the constellations and the angels and the birds:

My baby daughter died.

I lost my beloved child.

Did you hear me?

I did not experience

the "loss of a pregnancy" or

a "failed reproductive event" or

a "negative outcome of pregnancy"

and the lying language you continue to foist on me is infuriating. I will never, ever, ever support events, books, research, and any other movement that propagate this lying, offensive, diminishing language.*

This process of naming- the nomenclature of death- has an outcome that can be measured by society's perception to the death of a baby. It's sublime effects are used for social and political manipulation and misappropriation. It is subtly powerful and insidious.

This misuse of language encourages the systemic dismissal of this tragedy, inferring that the traumatic experience of 10 months of pregnancy, hours and hours of excruciating labor, only to then give birth to a dead baby, followed by postpartum reminders such as breast milk, burning arms, sleepless nights, pacing the floors, hormonal insanity, physical recovery, and indescribable grief isn't worthy of mourning just as any other child's death.

Rather, the implicit message is that this trauma was merely an "adverse outcome of pregnancy" or a "pregnancy loss" - and not really the death - or loss if you prefer- of a baby- a son or a daughter. And thus, these children, themselves, are devalued. This translates to the social oppression of thousands of grieving mothers worldwide who are relegated to the depths of despair alone.

And this type of lying language is in part why- in 1994- her death was treated with contempt and disregard.

It is in part why research funds have been channeled elsewhere.

It is in part why women have suffered in silence for decades, fearful to speak their children's names.

It is in part why- even at support groups for grieving parents and in textbooks about death- stillbirth vis-a-vis "fetal demise or fetal deaths" are segregated as the 'other.'

And it takes an enormous emotional toll on women to be faced with constant assaults on their child's dignity, fearful to tell the real story of their child's death for risk of the "Oh, well, at least..." comments, or "no big deal-why are you so upset?- glances." (For the record: I work with many parents who are survivors of suicide and they also face many similar effects of disenfranchised grief).

I implore you- use your voices if you share these feelings. Those who do not help to change this prevaricative language are complicit in this social misconstruing of reality, passively contributing to the suffering of women who will, in the future, face this unspeakable loss.

And to current or future potential colleagues: Please don't email me and ask me to support your research or your event or your whatever if your project makes reference to a baby's death as pregnancy loss or reproductive loss or whatever other lying nomenclature happens to be featured in the literature on that day.

Speak the truth. A beloved baby- a precious child- died. A child who is just as valuable and loved and worth of dignity and mourning as any other child.

Remember that sticks and stones can only break bones. But words can wound forever.

*Note, please read this part carefully: This is not about the use of the words loss vs. death. It is about understanding the difference between the terminology of "pregnancy or reproductive loss or reproductive failure" and "infant or baby loss (or infant death)".

Emery, Frances, and the Little Wounding

2011-07-10T17:37:00.001-07:00

Emery. The baby bird rescued from the Colony, in a nest I constructed from dry grasses.

Two other fledglings died but he's going to make it!

Frances. Maybe the luckiest dog in the world. He'd been hit by a car, had a broken tail, and was covered with detritus. He was dehydrated and very hungry.

After cutting off a very tight old rope from his neck and buying him a new collar and leash, Frances was one very grateful puppy!

All leading to the little toe wounding...

Turn your wounds into wisdom.

-Oprah Winfrey

Today, I nearly took off my toe: Call it an inexperienced, over-zealous tree trimmer gone wild. I should probably have had a stitch or three, but the idea of an emergency room visit on a weekend is powerful demotivation.

You see, I needed to clean the side yard because we saved a very-grateful, very-frightened puppy from certain death on the highway in Grants, New Mexico (see photos above). He has a happy new home in Sedona, and he's named Frances after Giovanni Francesco di Bernadone aka Frances of Assisi. His rescue, of course, came on the heels of saving Emery, the baby King bird (I am happy to report that Emery is doing well and is safe in a wildlife bird rescue in Denver, also see photo above).

I digress. The dog run on the side yard was overgrown with tree branches and needed attention. Note to self: Hire a professional next time.

During the process of the near dismemberment, I realized the stark similarity between physical and emotional wounding. Please pardon the imagery as I tell of my experience:

I felt some pressure on my toe, but didn't realize how badly I was injured.

I looked down and saw flesh hanging from my toe. I actually kept trimming the tree for about 15 seconds thinking, "Oh it's no big deal. This hardly even hurts."

Blood began to drip all over the ground. I was coherent and calm. I thought of how I might put my toe back together. The drippings increased. I realized I would not be able to put my toe back together. "Really?" I thought. "What a bunch of crap."

With astonishing dispassion, I called for aid, not for me, but, for Frances who would be alone in the yard when I went inside to disillusioningly attempt to fix my own toe.

Aid arrived and my gaping wound became the centerpiece of the discussion. I reiterated: "I'm fine, it hardly hurts."

Within ten minutes, my sympathetic nervous system via the endocrine system released glucocorticoids, norepinephrine, adrenaline, GH, and other helpful nasties into my blood stream. I was faint, felt nauseous, and dizzy. But still, no pain.

I desperately needed aid as my brain felt increasingly scrambled and I lost the sense of space and time. I kept insisting I didn't need aid despite my helpless predicament.

Some insistent, nurturing intervention from caring others put me horizontal on the couch with my foot elevated to slow the bleeding. My clothes were sweat-drenched, respiration was Indy-speed, and my heart was beating furiously. I tried my best to breathe mindfully and slowly to counter the physiological reaction. A cool cloth to my head, kind others, and all the time I needed to reground myself helped me establish chemical homeostasis.

Then, and only then, the shattering pain lambasted me.

The pain radiated from every nerve cell in my foot, up my leg and into my thigh. Ah, but I could think clearly and I felt more in control once the stress hormones began to diminish from this non-life-threatening injury. The pain was literally paralyzing. I could not move. I could not think about anything but the pain. I don't remember much about that hour on the couch other than the pain.

Slowly, the pain began to ease. I noticed, though, that it would ease, then increase again. Ease, then increase again. This happened quite a lot, and I was mesmerized by this pattern. Very, very gradually, the moment of "unpain" grew longer. The moments of pain, shorter.

I'm much better now, bandaged and mostly pain-free. Though life is different today, and will be tomorrow, and probably for the next week.

The things that were once so effortless and manageable now present significant challenge. Walking, for example... my gait has changed, so I'm much slower getting from one place to the next. I'm protective of my injury, aware of its constant presence. I have to change my shoewear and tend to my injuries this week. And of course, there will be a lifelong scar to remind me...

Toe amputation is nothing compared to losing a beloved one to Death. I'd have given all ten toes - and fingers - to save her life. And while physical wounds are quick to heal, the emotional ones are enduring, visible to us, often invisible to others.

So, today I learned that the process of wounding has a cadence. And if I pay close attention, living mindfully in every moment of my life, I grow wiser from those little woundings.

These little woundings teach us about the big woundings. And to understand, just a morsel, our true self in the midst of the wounding is a bittersweet gift.

One I wish no one ever needed to learn.

Civic love and gratitude...

2011-06-04T22:31:00.000-07:00

From Terece's beautiful brother

From Tashina's beautiful sister

God gave you a gift of 86,400 seconds today. Have you used one to say "thank you?"

~William A. Ward

This expression of gratitude is long overdue.

I met Jim Gregory many, many years ago. I can't even recall how he found me. I do recall that, characteristically, he shepherded a family to a support group I facilitated after their child's death. It was, perhaps, in 1997 when we first met. He wasn't a bereaved parent, rather, a bereaved sibling. His beautiful sister, Terece, was murdered many years earlier. Her tragic death left an inscription on Jim's heart.

Around 2006, I met Shannon LaRance and her four amazing children- three who walk- Justin, Kawani, Kaloni; and one who soars- Tashina. I was teaching a class on policy and Shannon, then a BSW student, stayed after class to tell me the story of Tashina, her first child, and how she'd tragically died in 1993. Her subsequent children, unaware that they had an older sister who died, became an integral part of the mourning process as Shannon finally shared her story, and we all recognized and grieved for precious Tashina, who was once silently inscribed in her mother's heart.

Every year since Jim and I met, he has sent me cards recognizing my dead child. Every birthday, without fail, he chooses and sends the most beautiful sentiments of remembrance and, with lovely handwritten words, touches my heart in the most tender way. He also sends cards on Mother's Day, and on my birthday (an otherwise bittersweet day when I long for her presence in my life, but which very few people recognize except this seeming angel-stranger), and even on the days when my parents died, in recognition of them. He recognized my precious child when others did not, could not, or would not. Many days, I have thought he must be sent directly by God, reminding me of a scripture that says something about strangers actually being angels unaware. I wonder... There is no way I can put into words how much his committed kindness has meant through the years...

A few weeks after Shannon took Tashina's box - her name inscribed on her mother's heart through all these years- from the shelf, sharing her story with her children, Kawani drew me a precious picture that I've kept on my wall since. It reminds me how important this work is in this world, as they now know and love their sister and openly recognize her as the beloved member of the family she has always been, albeit in her mother's heart. Her inclusion of me in the "family" picture warms my heart every time I see it. It nearly brings me to tears every time.

These simple, beautiful acts of civic love have helped to keep me going on days when I felt discouraged. Unappreciated. Defeated. Forgotten. Abandoned. They are a reminder that service to those in the abyss of grief is the most important of all work, and they inspire me to continue to fulfill my commitment to my dead child.

So, today, I wish to say, publicly, thank you to Terece's beautiful brother, Jim. And to Tashina's mother and siblings. And to all those who have expressed kindness and generosity to me, personally, and to the MISS Foundation for our work of the heart.

Today, I will use some of those 86,400 seconds to say: Thank you, thank you, thank you. It's long overdue, but no less full of loving gratitude to you. Thank you for remembering. Thank you for your loving kindness. Thank you for inspiring me. Thank you for sharing your beloved with me. I cannot tell you how much it has meant.

My heart is inscribed with their names: Terece, Tashina, and all those gone too soon from our sight but never from our hearts.

And thank you to my mother, Josephine, on her birthday today. I MISS you and wish I could tell you myself. Thank you, Mom, especially for loving my kids so big.

**** Is there anyone out there on whom you can expend a few moments of gratitude?****

Telling the Real Story...

2011-05-29T21:17:00.000-07:00

Faceless by Naomi Labuscagne

I waited a long time to watch the film The Rabbit Hole. It was intentional. There was too much media frenzy around the film, and I wanted to allow that to settle, wanted to be clear and present with the film in an unadulterated way.

Disappointedly, the film didn't move me. I shed a tear, maybe two, but there was an emotional lacking for me, an inauthenticity in Kidman's character with which I simply could not relate. But of course. How could a Hollywood actor possibly capture a mother's grief? It reminds me of a myth I'd heard long ago about Michelangelo's Pieta; he was hesitant to sculpt Mary's face for fear he could not possibly carve, with requisite honesty, the pain of a grieving mother.

After the film, I contemplated the many movies I've watched since my induction into bereaved parenthood in 1994. Many depicted traumatic death, and some even child death. Yet, none of the Hollywood enactments resonated any degree of substantive authenticity.

Tonight, I watched The Greatest for a second time. The first time I watched it, I found it to be one of the most sincere portrayals of parental grief and, though it still felt inadequate, I noticed that some memories unearthed during the second watching. Memories of the real story which had fallen victim to an ad hoc amnesiac state, but which were rapidly resurrected. These memories evoked powerful emotions tonight.

So, what is the real story- the one I wish Hollywood would tell- so the non-bereaved could really experience the truth about grief after the death of a child?

- I wish they would tell the story of how every single cell in our body hurts. Literally, it hurts from tip of our toes to the ends of our hair. The pain is indescribably physical and as merciless as the Mayan heart sacrifices of its helpless victims.

- I wish they would tell how difficult even basic bodily functions are: drinking becomes work as our throat is constantly tight and closes off to water, or food, or oxygen, or sustenance. Or how we are unable to carry groceries or the mail or the sadness in our arms as they ache with the phantom weight of our children. Or how we cannot breathe because of the concrete slabs on our chest, heavy and dense and gray. Or how our legs buckle and we cannot bear to see other children, especially the ones who are their age and with their names walking gleefully with their parents; parents who may or may not take a moment or two for granted but who will tuck them into bed tonight as we lay sobbing, our salty tears saturating the shag carpeting, in our dead child's room.

- I wish they would tell the story of how, on the rare occasion when we do sleep, we awaken in the morning, nearly every morning, wishing we hadn't.

- I wish they would tell the story of how we look in the mirror at our unrecognizable self every day and wonder at the stranger we see. And how every relationship in our lives change, even our conflicted relationship to the imposter-self. And how all the others- family, friends, colleagues- want us to be the person we were previously, but we know that person is irretrievably lost.

- I wish they would tell the story of how our primal mourning is most often done alone and that the supernatural sound of this mourning frightens us, like an wild animal being killed and eaten or like the flogging of human flesh or like the torturing of a prisoner or like Satan being cast from G*d's presence.

- I wish they would tell the story of grief's incessant state of craze: pacing the hallways late at night, the inability to focus on anything, the intolerance of music, or laughing, or expressions of joy, sensitivity to lights and other benign stimuli, racing video tapes that replay in our heads as we wish-for-changed outcomes, the constant self-accusations of blame and responsibility, the unconscious roulette of risk with Death as our challenger.

- I wish they would tell the story of how we are terrorized by insidious ruminations of our other children dying, and we either over-protect to maintain illusory control or under-love to maintain illusory protection from recurrent grief.

- I wish they would tell the story of the dark and ugly thoughts about other people and their happy and naive lives. Or how we become fierce imaginary protectors of children who are neglected, or unloved, or scolded, or abused by their "parents".

- I wish they would tell the story of how a mere turn of a corner in the grocery store that confronts us with baby food, or car magazines, or cereals can unhinge us to the point of utter helplessness and madness, frantically abandoning $200 worth of unpurchased frozen foods for an exit sign .

- I wish they would tell the story of how this brings us to our wounded knees. On the floor. Face in the dirt. Begging and pleading for a different life. Willing to do anything, anything to turn time back and go through another door. Or how we fantasize about time machines and contemplate self-institutionalization.

- I wish they would tell the story of a pain so deep and so wide that no word in the English language can begin to express it. That no subsequent child, no new job or house, no distraction- no pill- no drug- no G*d- no joy- no self-induced suffering is sufficient to fill the chasm of the loss.

- I wish they would tell the story of how we pray, even in the absence of a belief in a Creator- we pray, that the suffering would end, by any means.

-I wish they would tell the story of how well-meaning others cause us to recoil with their platitudes and mindless remarks about G*d's will and His garden, the one which needs tending, and something idiotic about making lemonade.

- I wish they would tell the story of how this mother and that mother and this father and that father would have given their life in a moment to save their child, and that we continue to negotiate that with a G*d in whom we may or may not believe for months or even years.

- I wish they would tell the story of how life goes on but that everything has changed, and that we have died in a sense, and must choose to be reborn.

- Mostly, I wish that they would tell the story of a bittersweet survival that does not include a fallacious or contrived "end" to the grief after a prescribed six months. This is not reality for most of us. Yes, I wish they would tell a true story of the anguish absent the "happy" ending. Not that we, at some point, aren't capable of pure love and joy and contentment. In fact, having really "looked into the eyes of such sorrow" is the only way to such pure joy, as Gibran says. But there is no bypassing the tortures of child death, it's effects perennial and relentless for much longer than the unsuspecting world believes.

And there is so much more I wish they would tell.

I wish they would tell the story because I wish others knew. Certainly, if the others knew, they would have to be kinder, more compassionate, more loving to bereaved parents. Wouldn't they?

Wouldn't they?

Yet, I find even my own words fall woefully short of the real story.

As the Michelangelo-myth goes, some things cannot be expressed in sculpture or form or film or with words. The real story is one we can never truly tell.

***What is your story that you wish they would tell?***

Worldwide Rapture of Kindness Day!

2011-05-24T06:38:00.000-07:00

FOR IMMEDIATE RELEASE: Contact: Dr. Joanne Cacciatore Phone: 928.554.4394 Web: www.KindnessProjectDay.org

WORLDWIDE DAY OF KINDNESS COMING SOON!

Imagine this: You go to the cafe counter and discover your coffee has already been paid for by someone else. Instead of a receipt, the clerk hands you a MISS Foundation Kindness Card saying, "This random act of kindness was done in memory of our beautiful child Peter." How will you pass the kindness forward? How does this simple Kindness Project act change your day? July 27th of every year is the MISS Foundation's International Kindness Project Day, and you are invited to visitwww.KindnessProjectDay.org to participate with us. Free Kindness Cards are available when you send an SASE to the MISS Foundation’s office, and free PDF templates of cards for DIY printing will be posted online in English and Spanish from July 20 to July 27 to encourage people to commit acts of kindness all day on July 27th.

Dr. Joanne Cacciatore started the Kindness Project in 1996 as a way for families to cope with the tragedy of a child's death. Since then, more than one million kindnesses have been committed around the globe in memory of children and other loved ones, gone too soon.

One father anonymously pays for others’ meals in restaurants. A 14-year-old bereaved sibling does yard work anonymously for an elderly neighbor when she leaves for the day. A woman leaves flowers at random strangers’ doors in honor of her partner who died. A man who lost his wife in a car crash tells of how he leaves a $100 random tip in a restaurant every year on the anniversary of his wife’s death. A bereaved grandpa brings homebaked treats to a local nursing home in memory of his grandson. One mother who lost her nine-month old daughter in a tragic accident pays for others children’s birthday cakes, the ones who are the same age as her daughter, in her local bakery. Still, another bereaved mother, the “fast food bandit,” tells of how she buys meals for the people behind her in drive through restaurants. All these acts of kindness are accompanied by a Kindness Project card so that the recipient will know it was done in honor of a special person.

“Both the mourners and the recipients benefit in so many ways,” says Cacciatore. “Imagine a gift like this, to remind us how fleeting life is… I wonder how many of us would immediately call our child or our partner or our parent and tell them how much we love them if we got a card like this?” And in this way, “these loved ones live through our kindness to another.” Around the world, from the U.S. to Romania to New Zealand to Paraguay, mourners will unite on this one day to make a difference.

The KindnessProjectDay.org site hosts an entire page of Kindness Project ideas if you need a little spark of inspiration, and the MISS Foundation wants to hear all your Kindness Project stories during this year's events. With permissions, stories will then be shared forward in our newsletters and on our Facebook pages to keep inspiring others worldwide throughout the year. For more information, please contact info@missfoundation.org.

# # # # #

Here is what you do:

FREE KINDNESS PROJECT CARDS WILL BE AVAILABLE FROM
JULY 20-27th, 2011 -

Note:

There are two types of Kindness Project cards that will be available:

1. "in memory of our beautiful child"
2. "in memory of"

That way, anyone can participate in memory of anyone!

Here's what you do:

1. Visit the MISS Foundation's website (http://www.missfoundation.org/) or our Kindness Project page (link at the bottom) between the dates of July 20-27, 2011.

Don't worry- if you RSVP here, we'll send a reminder and a link to the cards starting on the 20th of July!

-as an alternative, send a SASE and we'll send you several cards!

2. Start thinking about acts of kindness - especially anonymous ones as those are the most powerful - you can commit in your neighborhood and community!

3. Print your Kindness Project cards in English or Spanish.

4. Share this event with others!

5. Then- drum roll please- on July 27, 2011, go out into this world and help to change it memory of your beloved!

6. Finally, come back here and tell us your stories of secret kindnesses and human connection!

We hope everyone will join us in this amazing experience! Don't worry- you can commit a Kindness Project act that costs nothing (mow someone's yard, offer a homemade gift, bring cookies to a nursing home), only your time and devotion to another!

Or, you can have fun buying Starbucks for the person in line behind you... or you can leave flowers on a strangers' door... or you can buy someone's meal at a restaurant anonymously, or you can leave a $10 bill on the ground where someone can find it wrapped around a Kindness Project card... the list is endless!

Imagine this: All around the world, on this one day of the year, mourners will be transforming their grief into a powerful message of love, hope, peace, and kindness!
The MISS Foundation's Cacciatore started the Kindness Project in 1996 as a way for families to cope with the tragedy of a child's death. Since then, more than 1,000,000 kindnesses have been committed around the globe in memory of children, gone too soon. TO ACCESS PRESS RELEASE VISIT HERE:http://missfoundation.org/pressreleases/PR_May2011_IntKindnessProjDay_MISS.pdf

We invite you to post your ideas and your miracles at the Kindness Project Facebook page below:

http://www.facebook.com/pages/Kindness-Project-tm-from-the-MISS-Foundation/120389111377780

and

http://www.kindnessprojectday.org/

In memory of all those who died too soon, we remember and honor them!

Pink crocs

2011-05-16T09:30:00.000-07:00

I awoke on Mother's Day at 4:00 a.m. to attend the Empty Strollers/Empty Shoes walk for the MISS Foundation. I wasn't feeling too well that day, but I didn't want to MISS this inaugural event.

The photos truly do speak for themselves. But what was the most astonishing for me was that, during a moment of solitude and silence, I looked around at the hundreds and hundreds of mothers and fathers and children and grandparents and aunts, uncles, cousins, friends- and I realized that this was hallowed ground.

On this day, we would set aside our political, social, economic, ethnic, regional, and spiritual differences. On this day, we would walk together in solidarity, in communion, from Arizona to Iowa to Romania, with one another. On this day, we would recognize our true self- the one of both suffering and mattering - in a stranger. On this day, we would reach out to comfort another.

On this day, families would bring their strollers and their shoes, children in absentia, though present in our hearts, and walk together to honor and remember. Thanks to hundreds and families and the efforts of a very special little girl, Kit Blouin, we would donate more than 620 pair of shoes to others who needed them as part of the Kindness Project. Together, our children would walk on in this world through our love for them. A love that is bigger and brighter and more enduring than others could imagine.

On this day, and perhaps each day, we realize that what we have in common as far more meaningful than any differences.

Because what we do share is the quintessential beauty of our existence and our identity: Love.

Tarrying, Phoenix to Boston

2011-04-25T06:16:00.000-07:00

Photos are of the Elmwood Historic Cemetery, Memphis

______________________________

Only when we tarry do we touch the holy. -Rilke

I saw an old, dead-tree skeleton yesterday walking from Sedona to the Village that I've previously not noticed. He was magnificent, taller than the others, his bones exposed to the elements slowly decomposing into his soil as he cultivated new life around him. I wondered what he looked like when he was dressed in gently whipping leaves, visited by birds and other creatures. He reminded me of Jack and the Beanstalk, his narrowing peak indiscernible from the sky.

One of the things I noticed about my life is that when I take my time, I experience so much more, learn so much, and have more opportunities to really connect with others.

For example, when I walk, I am much more aware than when I bike. When I bike, I take in much more than when I drive. And there's hardly a comparison between driving and flying.

Sure, it's faster but...

On April 1st, I left for a lecture tour that would take me from Phoenix to Boston, and 17 states between, in less than 10 days. That's right. Ten days, driving across the country, 48 hours each direction.

You know, those 2 am stops at Flying Js and mini-marts and Circle Ks bring unlikely people together. Surprisingly, at least eight of my conversations, while paying for badly blanched cashews and Dasani, went something like this:

"Where ya headed today?

"Oh, I have lots of stops. Texas, Tennessee, Pennsylvania, Boston..."

"Vacation?"

"Not really," smiling.

Followed by cashier's inquisitive gaze.

"I'm teaching."

"Oh really? About what?"

I learned about the death of his niece to suicide last year. His sister "isn't doing well" and he was worried about her.

And another person in Charleston whose premature baby died 23 years ago. He still visits the cemetery on his birthday. And another in Lebanon whose wife died of cancer, and he took her home calling his farewell time a "gift". Still another in Valley Falls whose partner was killed in a car accident. He was thankful that the last thing they said to each other was "I love you."

And there were more, some of whom said they hadn't spoken to anyone about their grief.

One became tearful. So did I.

Lives lost, stories untold became lives remembered and stories heard, even if for a moment. And I was thankful that I tarried.

Stillbirths: The Invisible Public Health Problem

2011-04-14T05:38:00.000-07:00

Contact: Kathy Sandler, MSW, 480 861 7511 (mobile), kathy.sandler@missfoundation.org

Stillbirths: The Invisible Public Health Problem

New estimates place annual global toll at 2.6 million stillbirths

“The time has come for this public health problem to be recognized…”

Some 2.6 million third trimester stillbirths worldwide occur every year, according to the first comprehensive set of stillbirth estimates, published today within a special series prompted by the World Health Organization in the medical journal The Lancet.

Every day more than 7,300 babies are born dead. A death occurs just when parents expect to welcome a new life. “The death of a baby to stillbirth is devastating to families, and we haven’t done enough, historically, to understand its etiology,” says Joanne Cacciatore, PhD, Assistant Professor and researcher on the psychological effects of stillbirth at Arizona State University and President and Founder of the MISS Foundation, an international organization that cares for families facing infant and child death. Kathy Sandler, MSW, Executive Director for the MISS Foundation notes that “the MISS Foundation understands first-hand how traumatic the death of a baby is for families… we’ve been spearheading efforts to pass legislation on how stillbirths are recorded- and how these mothers are treated in the process- in the U.S. and have been successful in 27 states.”

Yet, the number of stillbirths can be slashed, say most experts. Besides lacking visibility, the issue of stillbirth has lacked leadership both locally and internationally. “The time has come for this public health problem to be recognized, explored, and eventually to reduce the numbers,” says Cacciatore, referencing her participation in the first of The Lancet articles entitled: Stillbirth: Why it matters. “This is a clarion call for attention to a much-underserved group.”

“Parental groups must join with professional organizations to bring a unified message on stillbirths to government agencies and the UN,” says J. Frederik Frøen, M.D., PhD, an epidemiologist at The Norwegian Institute of Public Health and member of the International Stillbirth Alliance. “This Series shows that the way to address the problem of stillbirth is to strengthen existing maternal, newborn, and child health programs by focusing on key interventions, which often overlap with those interventions that benefit mothers and neonates,” says Gary L. Darmstadt, M.D., Director, Family Health Division, Global Health Program, Bill & Melinda Gates Foundation. The WHO has worked in collaboration with worldwide stakeholders to develop the first comprehensive, global set of stillbirth data by region.

In The Lancet’s series on stillbirth, clinicians, researchers, and experts call for action to reach these goals by 2020:

· For those nations with a current rate of under 5 per 1,000, to eliminate all preventable stillbirths and close equity gaps;

· For countries with a stillbirth rate of more than 5 per 1,000 births, at least a 50 percent reduction from the current rate;

· The MISS Foundation, additionally, advocates for all 50 states to adopt their version of the Certificate of Birth resulting in Stillbirth in addition to a death certificate, already passed in 27 states;

· The MISS Foundation also encourages systemic change in the societal perception of stillbirth, beginning with medical personnel, policy makers, mental health professionals, researchers, and feminist groups, and for comprehensive support services to women and their families suffering this traumatic loss.

For more information on the MISS Foundation visit www.missfoundation.org

Please See Us

2011-02-25T05:51:00.000-08:00

There are experiences in life which are, truly, unimaginable for most. The duty for the sufferer of such an experience is to ensure that others truly see them and that others do not forget...

On Mother's Day, 2011, the MISS Foundation will host its inaugural event, Empty Strollers, Empty Shoes: We walk for them. Mothers, Fathers, sisters, brothers, grandparents, aunts and uncles, friends, neighbors, caregivers, and supporters will come together with their empty strollers and empty shoes in solidarity and walk on Mother's Day.

We invite you, wherever you are, to organize an event in your area!

Our objectives are: 1) Public awareness: To help others truly see bereaved families who have experienced child death, 2) Honoring: To recognize and remember the children who died and the family member/s left behind to mourn their absence, 3) Solidarity: To commune with like others who have experienced the same knowing of the unthinkable, 4) Resource building: To help raise much-needed funds for the MISS Foundation so that we can continue our outreach around the world. Parents and others are building teams in their child/children's names and recruiting friends and family members to sponsor them for the walk.

One such team that has already started is "M-Bug's team", initiated by her devoted mom Ashley, a MISS Foundation member in Phoenix, Arizona who is walking to remember her precious baby, Mckenna Jodell, who died at nine-months-old. A clinical intern for the MISS Foundation, Bianca Mera, MSW candidate, has already raised more than $700 on her team. There are many stories- and plenty of love and tears- behind every team.

We hope you will participate with us. Because this picture will truly help others to see bereaved parents and families, really see them, in a very different way...

For more information and to organize an event in your area please contact MISS Foundation Executive Director, Kathy Sandler, MSW at Kathy.Sandler@me.com. To register for the Phoenix event, visit the registration page.

About the Walk: Each day around the world, parents walk their babies, safely nestled in their strollers, aroundparks, neighborhoods, schools, and even zoos. Each day around the world, parents hear the steps of their children come through the door at the end of their school day. Each day around the world, parents experience theirchildren's feet returning home for family gatherings and holidays.

But, tragically, not all children get to ride in their strollers, return home at the end of the school day, or spend holidays with family.

The Empty Strollers-Empty Shoes Walk is an international memorial walk to remember all the mothers, fathers, and families- and their beloved children - and to honor those relationships on the most sacred of days for families; Mother's Day. Because death is not bigger than a family's love, and because even intheir absence, they continue to walk with us, as we walk for them.

The Elusive Past

2011-02-24T05:25:00.000-08:00

The past is never where you think you left it.

-Katherine Porter

I was born by accident. My brother, Mark, enjoyed the crown of the family baby for nine years. Then, a very annoying sister usurped his place in the family and life would never be the same. This was the family story I'd always known, for more than four decades of my life.

But family stories are, sometimes, revisioned. And those important conversations about painful truths are sometimes pieces of the elusive past, better unspoken to once-passed generations.

I had a dream about my mom and dad a few nights ago. They hadn't yet died in my dream. Rather, I knew death was impending, and I wanted to video tape them to capture more memories. I spent very little time on my mom, focusing the camera on my dad instead. In a moment of sustained eye contact, he looked at me and said, "I love you baby." The dream bothered me because there was so little focus on my mother. In all my dreams of her since her death many years ago, she's looking away from me, I cannot quite touch or reach her. She is unapproachable and fleeting...

During my most formative years, I felt much closer to my father, seeking his comfort when I was hurt or afraid or lonely. He was affectionate, warm, and nurturing. He called me "sweetheart" and "baby" frequently. He was my caregiver, my primary source of life and sustenance on this Earth. And, when not angered by my innate iconoclasm, I could see love in his eyes even though he was not particularly effusive.

My mother, on the other hand, was detached, distant, and phlegmatic. She achieved remuneration once my eldest son was born as she showered him- and the other children who would later follow- with unmitigated love, devotion, and affection. She was a model 'Nana' to the children and they adored her. And while I was overjoyed at the bountiful relationships she had with each of my children, it never made sense to me that so much felt lacking during my own childhood. And the container that held my little-child-heart was always saddened by a sublime pining for my wished-for-mother.

After my dream this week, I called my older sister, Eda. I told her about my dream. We both cried. She called my older brother, Johnny, and during the triune conversation, whilst repeating my dream again, he said, "You know mommy almost died once before you were born."

"What?" I said.

He repeated himself.

"What are you talking about, John?"

"Mommy lost a baby before you were born and she almost bled to death," he said.

My sister confirmed my mother's near-death experience.

"When? What happened?" I asked, nonplussed by his delinquent disclosure.

"Oh, I don't know what year. Hmmmm," he mustered. After some brief bantering about years, he said she had become pregnant about two years before I was born, some seven years after the original baby, Mark. "A boy," John said. She was in her second trimester when she began to bleed. "She was very sad, she took it very hard," John remembered in a solemn tone. "Do you remember that, Eda?" My sister affirmed. He went on to describe the family as "changed" after that. My father was very sad and expressed his sadness. My mother, on the other hand, withdrew and spoke to no one of the baby or her own nearly-lost-life. She had depressive symptoms, slept more than usual, and remained stoic and silent. Not even two years later, I was born.

I was both perplexed and speechless. My mother said, in passing once, that she'd had a miscarriage long ago but when I pried her more, she told me it was "no big deal" and refused to discuss it with me. She certainly didn't mention the prolonged hospital stay or that she'd nearly lost her own life or that she loved and wanted the baby so much that her grief was untouchable for her.

When I hung up the phone, I got out the pictures I'd kept of my mother and a little-girl-Joanne. They were the photos that always gnawed at my sense of self in the world. She was rarely touching me, rarely smiling, rarely looked happy. The photos were a testament to the emotional dysplasia I'd sensed during my early childhood and that remained in my implicit memory. I looked at her face carefully, mindfully. I really looked at her. And then, I saw her. My mother.

For a moment, the dead were resurrected to a place of truth, where her ghosts and mine gazed into one another intently. The past became the present. A mere glimpse was all I needed. And I understood, and I forgave.

1944, Daisy, and all her Children

2011-02-03T15:15:00.000-08:00

I read an amazing story today, and I held Daisy and the little girl with whom I hope she was reunited close to my heart....

Lost sister finally found her four brothers after 65 years

More than 65 years after her mother gave her up for adoption, Suzanne Brett went looking for her birth family – and discovered four younger brothers, who knew nothing of her existence, living less than 30 miles away. ALICE HUTTON hears about her remarkable story

The envelope looked out of place on the doormat. Next to the bills, it had a neat, hand-written address label taped to the front. Chris turned it over in his hands, then slit the top open carefully and took out a letter. Its contents revealed a secret that had lain hidden since its inception on June 25, 1944, at Mill Road Maternity Hospital in Cambridge.

Blowing the cobwebs off a decades-old mystery, the letter was filled with wartime love affairs, a lost daughter and potential new families, which, if the landscape gardener from Fowlmere was honest, was quite a lot to take in on a Friday morning.

Step back to 1944. The officers’ mess at RAF Bassingbourn is filled with cigarette smoke and pilots with Brylcreemed side partings living on the brittle edge of life.

Young Englishmen are training, and dying, to protect Britain’s skies, while Cambridgeshire’s women are leaving the security of their parents’ homes and signing up to the Women’s Auxiliary Air Force (WAAF) in their droves.

Around the corner there’s a camp of American soldiers, their pockets full of treasures rationed to the point of myth; silk stockings, make-up and chocolate. Among the flocks of young WAAF members, caps perched on their victory-rolled hair, the often-doomed servicemen make love as well as war. It is, at the same time, a liberating, exciting and dangerous time for all involved.

More than six decades later, sitting around an oak table in The Fox pub in Bar Hill, Suzanne Brett, 66, and Chris Wall, 57, speculate about the events that led to the letter which brought them together.

They admit they will never know the circumstances that saw their mother, Daisy Taylor, a member of the WAAF, unmarried and pregnant at 23 years old. Or why, soon after Angela Mary Taylor was born, Daisy gave her up, and died 60 years later without telling her four sons about their older sister.

For Suzanne, from St Ives, being given up at birth could easily have been the end of the story.

Taken in and re-named Suzanne by a loving couple at just six weeks old, she found out she was adopted at the age of 6. Determined never to hurt her parents, she decided to wait until they died before looking for answers. With just her birth certificate to go on, she scoured adoption websites, but came away empty handed and gave up.

Then, last summer, into the frame stepped two of the unlikeliest white knights: daytime chat show host Trisha and a Scottish woman called Liz. Sipping a glass of white wine, Suzanne explains: “I happened to watch a Trisha programme last summer and she mentioned websites to trace birth relatives.

“I posted a message giving a short history with my name, my birth name, date and my mother’s name. And then I waited.” She reaches into a folder bulging with papers and pulls out a well-read email. “This arrived in my inbox 48 hours later.” In just two days, the now infamous ‘Liz of Scotland’ had scoured endless registration-only sites and, free of charge, gathered up a gold mine of ‘lost’ information, including Chris’s name, address and telephone number, plus Daisy’s marriage certificate and death certificate, which told Suzanne that, whoever else she now found, she was six years too late to meet her mother.

“She must have been up all night,” Suzanne explains, looking incredulous. “And she didn’t want any payment, she just wanted to help.”

Suzanne immediately wrote to Chris, who lives in Fowlmere.

“I opened the envelope very carefully because I just wasn’t sure what was in there,” says Chris. “I was shocked, stunned, all those things, to read Suzanne’s letter. All the information she had given was absolutely correct. So the next step was to email my three brothers and say, boys, we may have a sister.” After comparing names and addresses on birth certificates, the five of them decided to meet, bringing all of Daisy’s children together for the first time. It was an emotional evening for everyone, not least because not one, but two crucial people were missing.

Daisy died in 2004, aged 84. Many years earlier, she had given birth to a stillborn baby girl, who she told her sons she always longed to hold. “It was a real sadness for us boys,” says Chris, “because we knew that mum had had a little girl. Now we know she was longing for the daughter she gave up, as well as the daughter she lost.

“When I was younger, I always wanted a little sister, now I have a big sister.” Suzanne, tears flowing silently down her cheeks, still finds the memory of that first night overpowering.

“I grew up as an only child,” she explains softly, “so this is a bit overwhelming for me. We met for dinner and talked all night; they made me feel like one of them.” Flipping through the pages of the photo album the brothers put together for their new sister, a beautiful, fresh-faced woman beams out from every page, and from the brothers’ stories emerges a picture of a fun-loving, kind mother who was well respected by the local community.

So well respected, Chris believes, that it explains how Suzanne’s birth almost remained hidden from them forever.

“I spoke to family members, widows of uncles, friends of the family, even the woman who made my wife’s wedding dress, and as it turns out, everybody already knew – everyone but us. What they said to me was it wasn’t a secret, they just never spoke of it out of respect for our mother.

“There must have been hundreds that knew, apart from us four brothers, including our father.” Daisy married Horace Wall in 1946 and the couple moved to Melbourn, where they raised four sons: Peter, Edward, Michael and Chris.

But what of Suzanne’s birth father? The section on the birth certificate is blank. Was he an officer she met when working at RAF Bassingbourn, an American soldier, or a local man?

For the brothers there is no proof that Horace, who died a few years ago, is not her father as well. And that is the way they would like it to stay.

“Horace and our mum were childhood sweethearts and got ‘married’ in the school play when they were 5 years old, so in our minds they were married 20 years before anyway,” says Chris.

“We will never know for sure, but that is what we would like to think.” For Suzanne, the journey is over and she is clearly overjoyed to find such warmth and acceptance.

“When I was growing up I never thought about being adopted, it never bothered me as I had such a happy childhood.

“But if I had met Daisy, I would have asked her many questions.

“Why did you give me up? Did you miss me?”

“I’m sure she did,” adds Chris quietly.

“If you want to trace your birth family then don’t give up,” Suzanne continues.

“I didn’t give up. I found my family and that’s what I wanted. I have my brothers.”

“Well, it might have worked a little better,” teases Chris. “We might have got a sister who was a bit taller.”

And that is what little brothers are for.

-- From Royston News, UK

The Truth About Grief? Oh really?

2011-01-25T14:21:00.000-08:00

Storms make the oak grow deeper roots.

-George Herbert

The past few decades have given birth to many loquacious books touting innovative bereavement hegemony. And recently, yet a new book was published about grief, with all the banality of yet another attempt at uncovering the mysteries of grief whilst railing against the Kubler-Rossian zeitgeist of our era. But this book came with a hulabaloo.

The author makes some broadly swathed assertions about grief from the safety of the periphery- a person who admits having never really experienced traumatic death. Merely, it sounds as if she's speaking for the initiates, the real experts. And I find the public discussions around the book disturbing.

So here is where the pedagogy of grief gets tricky; postulations and muddling by criticizing self-declared grief pundits who assert when mourners aren't doing it right; too little, too much, too long, too brief, repressed, indulgent, not expressive enough or too expressive. It reminds me of what Helen Merrell Lynd said in the book On Shame and the Search for Identity: It's relatively easy to entertain multiple possibilities of truth if one remains a spectator on the sidelines. Or what Shakespeare said from Much Ado about Nothing: 'everyone is a master on grief until it is he who has it.'

Yes. It. Certainly. Is.

Grief is a broad, vast, mysterious vessel of human emotion in response to many losses. And it can, like water droplets forming irreplicable cloud patterns, manifest in different ways for different people. And while I agree with some of the author's postulations, for example, that some people, indeed, are resilient and able "to accept", as she says, "from the beginning" (and of course, we need operationalize "accept"), she consistently fails to distinguish between traumatic deaths and non-traumatic deaths. And so does much of the public.

Some individuals aren't able or willing to "accept" so soon after the loss (if ever) and some, even well-adjusted otherwise resilient, people find themselves trying desperately to cope with the enduring, unbearable effects of traumatic death, however, and rightfully so.

For example, a couple whose two children were both killed in a car crash. Or the mother whose three children were killed in a house fire with her husband. Or the father whose daughter was raped and murdered. Or the mother whose baby died during a traumatic birth and she nearly lost her own life as well. Or the mother who accidentally ran over her toddler in the driveway. Or the father whose young son awoke with a headache and was dead hours later from a brain aneurysm. These aren't sensationalized versions of reality. These are real people, real stories. Real mourners. And the suffering is beyond this world, beyond human comprehension.

The broad swath method lacks circumspect and nuance. And it can cause individual and social harm to one of the most vulnerable populations, increasing the mythological public perception that people who were "well-balanced" before the loss will accept it readily, while simultaneously abnormalizing more intense and enduring responses (which under the above circumstances are in actuality more congruent).

Specifically, the grief that results from traumatic death... well, the darkness of that storm should not be deconstructed by someone on the sidelines. Step into the storm, if you dare. There exists the unimaginable, the experience you will never capture with words or wands or theories or regression analyses.

Certainly, bereaved parents- and the traumatically bereaved- can integrate and adapt over time. They can even transcend their losses, experience posttraumatic growth, become advocates in the community, and in a Franklian sense find meaning. However, I believe that a person standing miles from the eye of the storm should consider whether it is wise to tell those standing in the midst of its reality.

The roots that grow deeper do so precisely because of the storm's intensity. And that is the truth about grief.

Holiday Miracles

2010-12-19T07:40:00.000-08:00

The wonderful thing about Sedona is this sense of connectedness that complete strangers have with one another. Maybe living in a postcard evokes that sense of 'all as holy' in everyone. I've had profoundly meaningful conversations in parking lots, grocery stores, and on trails.

But yesterday, there was something Christmas-story-miraculous that happened between two strangers. Actually, there were about six of us present, but I was fully present with only one- (let's call him) Mr. Smith from South Dakota.

I was sending off a package for Christmas, and it was 9:30 in the morning. I was the second customer in line. There was an elderly man standing in line behind me, and several others behind him. With complete extemporaneity, he says, "I've been married for 63 years, you know."

I turned around and smiled.

"Really?" I said. "That's quite something! Congratulations to you!"

The man behind the counter looked up too, smiled, and continued his packaging.

Mr Smith continued, "I married the love of my life when I was 26 years old. Now, I'm 89."

My smile swelled, and I said, "I'm so happy to hear that. You must be having an amazing life together."

"Yes, we are," he says, "but I've outlived two of my boys. We moved here from..." and he continued for several minutes telling the story of moving from South Dakota to Sedona.

Right there. In the brightly lit UPS store with cardboard boxes and packing tape at attention, greeting cards pronouncing "Welcome to the world, Baby!" and "Get Well Soon!" He said it. He outlived two sons.

My heart literally sank. The others in the room missed the painful disclosure that surely cost him and his wife years and years of pain, tears, and suffering. But I heard it. (Sometimes I wonder if I wear an invisible "safe-hearer-of-trauma" sign or maybe I just hear the real stories beneath the sanitized versions?).

We spoke for several more minutes, and he shared that one loss was many, many years ago, a baby boy he would "never forget" and that one was his grown son about 20 years ago. As the clerk was putting the final touches on my holiday delivery, I turned and took his hand.

I looked in his eyes and I said, "Thank you for sharing your sons with me. I am profoundly sorry that you've outlived your two boys. No parent should ever have to outlive their child. I will think of them this holiday season, as I am sure you will miss them both."

He looked at me, tears welling in his eyes.

"Thank you," he said softly. "Thank you."

I don't really know his name, and I don't know if I'll ever see him again, but in a single instant, the magic of shared memories, laden with both love and tragedy, brought forth a moment of shared mourning and compassion between two strangers.

I got into my car but didn't start it. Instead, I cried. I just cried.

The best gifts we can give to one another are the gifts of pause. Love. Remembrance. Compassion. Intention. Kindness.

That's where the holy lives. That is where we give, and receive, the miraculous.

And that was my holiday miracle. Thank you, Mr. Smith.

Death is everywhere. So is Life.

2010-11-28T16:34:00.000-08:00

Tri-colored Fall

In 1984, I was driving my Pontiac Fiero down the road when I felt a thump-thump under my rear wheel. I looked in my rearview mirror, confused and wondering what that unusual sensation was, and to my horror, I saw a cat flailing in the street.

I immediately pulled over and began calling for help. I was very young in 1984, not at all prepared to deal with a crisis like this. Neighbors came out from their homes. A kind man- I will never know his name but will never forget his face- sat me down on the curb and told me not to look. I wept. And wept. And wept. The non-insect-killing, animal-loving vegetarian took the life of cat. It was not a moment of glory for me. Literally, I was inconsolable for days.

Yesterday, a woman driving ahead of us down our street in Sedona hit a small bunny. The bunny appeared to be fine; that is, she wasn't bleeding. The woman, shaken, stopped and asked if I would help. I immediately got out of the car with a soft towel and slowly approached the bunny. I wrapped her gently and placed her in a small box.

She was breathing, but her placidness meant she was badly injured internally. I took her home and began calling animal clinics. Images of the cat I'd killed 25 years earlier intruded. This was my chance for redemption. I will save the bunny, at any cost.

I called three clinics to no avail. Finally, a vet referred me to a woman who was "very skilled at small, wild animal" care. Hopeful, I dialed her. The bunny sat next to me in the box. Her breathing labored, I stroked the area between her eyes gently. It seemed to calm her.

No answer. I called again. Still, no answer.

I dialed animal control for guidance. They were, let's say, less than helpful. "Let nature take its course," they said, clearly misunderstanding my quest for redemption. I hung up frustrated. Then, in a matter of seconds, right before my eyes, the bunny leaned back in her warm box I'd intended as a place of comfort and recuperation from her injuries. She stretched out her front paws and looked at me as she took her final breath. Helpless, completely and utterly helpless.

"Death is everywhere!" I cried out loud through the house.

I wept, and wept, and wept.

And when I felt as if I'd wept enough, I dug a hole in my meditation garden, under the patina fountain where squirrels drink and birds play.

I wrapped the bunny-I-couldn't-save in velvet, designer shoe bags, and named her "Joy-Chen".

And I whispered to hear, "I'm sorry I couldn't save you."

"Goodbye little Joy." Atonement would not come on this day.

This morning, I woke up to small snow flakes dancing through the wind. The birds were singing, and the squirrels feasting on red berries and juniper.

I was quiet, contemplative, thinking about Joy and the cat and redemption.

And I said, in my mind, to the cat I'd killed so long ago, "I'm so sorry I killed you. I'm so sorry." A single tear ran down my face.

Perhaps, atonement did come that day, ever so subtly, and disguised as something else.

Death is everywhere. So is life.

They are inextricably intertwined.

Finding crumbs of gratitude amidst many tears...

2010-11-24T13:31:00.001-08:00

I know that Thanksgiving is about being thankful. Full of thanks. Giving thanks.

I remember my first Thanksgiving meal of 1994, only four months after I watched Mother Earth swallow her body. The pain is indescribable. I can actually reach the pain, after 16-1/2 years, I can actually still reach it.

I sat at the table that day, my head down, meal and accoutrements provided by anonymous others who were too afraid of my suffering to do anything but drop-and-run. I remember thinking, "I cannot be thankful. I cannot be thankful. There is nothing, nothing. Just emptiness and aching and pain."

Indeed.

So I noticed a bread crumb on the table and thought, "Can I find a crumb of gratitude? Somewhere amidst all this pain, is there anything for which I can find gratitude?" Yes. There were many things, looking back. But then, I could only be grateful for one thing: love. The kind of big, overflowing, unconditional, reckless, and fearless love of a mother for her children. And for the year 1994, that single crumb had to sustain me.

I can say that my list of sufferings since her death are endless. I could write (and have written) pages and pages of the agony and despair, crumbs enough for many loaves of bread. Ah, but now, I have equal loaves, probably more in both breadth and depth, for which I am grateful.

And today, I'm reminded of Rilke's precious words:

. . . So you must not be frightened

if a sadness rises before you larger

than any you’ve ever seen, if an

anxiety like light and cloud shadows

moves over your hands and

everything that you do. You must

realize that something has happened

to you. Life has not forgotten

you, it holds you in its hands

and will not let you fall. Why do

you want to shut out of your life

any uneasiness, any miseries, or

any depressions? For after all, you

do not know what work these conditions

are doing inside of you.

and Rilke's delicious words continue in E Sonnets to Orpheus,

Want the change. Be inspired by the flame 
where everything shines as it disappears. ..

What locks itself in sameness has congealed.
  Is it safer to be gray and numb?
 What turns hard becomes rigid
  and is easily shattered.

Pour yourself out like a fountain. 
Flow into the knowledge that what you are seeking
  finishes often at the start, and, with ending, begins.

Every happiness is the child of a separation
  it did not think it could survive. And Daphne, becoming a laurel,
  dares you to become the wind.

And for the fire, and the earth, and the water, and the wind, and for all of this, and all of that, I am truly thankful.

In a Flash: How dying can teach us how to fully live...

2010-11-16T05:12:00.000-08:00

This existence of ours is as transient as autumn clouds.

To watch the birth and death of beings is like looking at dance.

A lifetime, like lightning flashing in the sky,

Rushing by, like a torrent down a steep mountain.

-Buddha

If you bring forth what is within you

What you bring forth will save you.

If you do not bring forth what is within you,

What you do not bring forth will destroy you.

-Jesus

I've always loved the Tibetan Book of the Dead for its willingness to stand face-to-face, letter-to-letter with the Big D. Oh sure, there are plenty of books about loss and grief and death and trauma and even some books for the gero-group on becoming psychologically ready... and, and, and... but few books are written to help prepare people- at any age- for Death. Heck, its even one of the reasons why I'm so intrigued by Johnny Depp. Who else tattoos "Death is Certain" on his arm?

One of the things I've learned from the great wisdom traditions is that dying well requires a mindfulness and intention about living well. And this mindful intention helps to enhance our lives each and every moment in which we allow our self to confront our mortality. And how, precisely, do we engage with life in such a way?

Some suggestions from a few wisdom traditions that have helped me include:

1) From Buddhism: Accept suffering as part of the human condition and then (when ready) transform it. Forgive others. Forgive the self. Realize that everything is spiritual or numinous, even if you're a secular humanist. Be humble.

2) From Christianity: Serve others with loving compassion unselfishly. Don't talk about loving others- do it. Let them experience, firsthand, the Light within you, do not speak of it. Recognize the futility and transitoriness of the material world. Believe in grace and offer mercy. Practice humility.

3) From Judaism: While alive, fully engage in rituals both celebrating and mourning the transition to Olam Ha Ba. Remember that saving one person is like saving millions. Be humble.

4) From Hinduism: Be aware of your deeds and thoughts, both spoken and acted and also those unspoken and unrealized. Surrender your self to the needs of others. Self-efface.

5) From Sufism: Practice futtuwah- loving the other in an empathic way before loving self with humility and service.

There's an awful lot of anti-narcissism going on here, isn't there? So contrary to the natural state of human existence when the "self" is so porous that it often absorbs every molecule in its path, like the Dyson of humanity. Makes me want to anonymize my blog and yank the photo. Hmmm. Is a dollop of vanity okay?

Thank goodness I didn't name the foundation or the CBRS movement after my dead child.

Joking aside, there is clearly something here.

This mindful and intentional living is hard work. It's so much easier to live mindlessly and accidentally and recklessly and wantonly and self-indulgently and all-about-me-ly. But the latter brings an unpleasant death, I'm certain.

So, I've sat with the sagacious thoughts of the desert fathers and mothers on many nights, through many sunrises, and sunsets, and rainstorms, and warm days, and barefoot walks. Those great wisdom traditions have inspired me to live such that I strive to bring forth the beauty that is within me rather than the ugly. I want to live in the way of my true self, in such a way that I am ready for Death when Death calls me by my true name.

And so that as I'm taken down the steep mountainside of our momentary, lightning-flash existence, standing face-to-face with Death one day, I will die well because I have lived well. And I will be truly going home.

From Research to Practice: The system actually works!

2010-11-15T22:30:00.000-08:00

Long ago, in a little Mexican restaurant, the smell of cilantro and lime dancing across the room, while normals around us laughed over margarita lunches, I met her. And the collision of two lives - and two deaths- would incite a paradigm shift that would change many other lives.

Rewind to 2004 when I was contacted by a grieving mom, Jodi, after the traumatic death of her daughter, Nia. Jodi and I would go on to form a therapeutic alliance that was very private. This was because Jodi was both a lesbian and a grieving mom.

Over the course of several years, I came to realize how unique her experiences as a single, lesbian, mother of a dead baby were... and a research study was born.

The manuscript, set to be published in a top tier academic journal early next year, was based on a qualitative, exploratory study on this subculture of the bereaved. All because of Jodi. Well, actually, Nia.

Here is what I found in the abstract:

____________________

Research on parental bereavement has focused historically on single or partnered, cross gendered (heterosexual) bereaved parents (Rando, 1986; Miles, 1978; Donnelly, 1982; Knapp, 1986). No studies to date have yet been conducted on the unique experiences of same-gendered bereaved parents. This multiple case study focused on child death in same-gendered parent families. The goal of this study was to yield information that will expand on the existing body of knowledge regarding parental bereavement as well as add to the dearth of literature on lesbian parenthood and challenges that lesbians may face as a marginalized group. This research study was conducted using in depth interviews with six self-identified lesbian mothers who have experienced the death of a child at various ages and from various causes. Results suggest that lesbian bereaved mothers experience a type of double-disenfranchisement after their losses, and that social support is often insufficient to meet their psychological needs. Because previous research has not been published on this specific population, the findings may be worthwhile for both the lesbian and gay parenting community, community advocacy groups, and clinicians who serve them.

__________________

Now, lo and behold the system actually worked!

From micro-practice ------> hypotheses --------> research --------> outcomes ---------> practice.

Thus, Nia's death gave birth to an support outreach for a doubly disenfranchised group, featured in Echo Magazine.

Now this is how the academy is supposed to work!

Margaritas anyone?

Oh, and thank you Jodi. Thank you Nia.

T.E.A.R. Study is Launched

2010-10-22T07:06:00.000-07:00

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 walkabout

2010-10-17T10:11:00.001-07:00

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

I can avoid those things that would cause me further pain.

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

2010-10-15T07:00:00.000-07:00

"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

2010-10-04T18:21:00.000-07:00

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. And me.

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

2010-10-01T20:39:00.000-07:00

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.

One of my more recent pubs...

2010-10-01T11:49:00.000-07:00

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.

Dreaming my Dead

2010-09-27T06:36:00.000-07:00

I awoke, quite suddenly, at 1:40 a.m. last night. I opened my eyes, slowly, disoriented by the chirping crickets that hadn't been part of my dream imagery moments earlier. I looked at the night sky through the window and reality smacked me on the still-foggy-head.

It was all just a dream.

I wanted to go back to sleep to re-enter the dream, but my emotions took over and I began to weep.

It's been 16 years and two months since Chey died. In all those nights I've laid my head to slumber, I've tried to will myself to dream of her countless times. So much, in fact, that I'd given up the ghost on that wish.

So in total, I've dreamed of her only three times in 194 months. Seems so odd to me. This person who has occupied so much of my heart and my soul and my body- this person who is such an integral part of my being in the world- to dream of her so rarely seems an injustice of my unconscious mind. To add to my quandary, the three dreams I had of her left me terribly distraught upon awakening. In the first, one week after her death in 1994, she was running through a field of white daisies. She wore a big white brimmed hat. She turned briefly to look at me, but I couldn't see her face, as she ran through the field. I pursued her, calling her name, begging her to come to me. But she just ran, and ran, and ran. The next two were similar dreams. Elusive and ephemeral. The most recent, about six months ago, I was in a big conference center. I heard someone call her name amongst the sea of people and I saw the top of her head in the crowd. I pushed and pushed to get to her, frantically calling her name. "Cheyenne, Cheyenne, please, please, wait," I cried to her desperately. The emotional urgency, even now, remains evocative.

One night, in 2006, I dreamed of my dead father. It was such a powerful dream that I awoke saying sternly in my own head, "You are seriously not going to try to convince yourself that was just a dream, Joanne."

I dreamed my father visited me. We both realized he was dead, and I kept saying, "Oh my gosh, Daddy, oh my gosh!" He said, "Joanne, I have something very important to tell you and I don't have much time. " But I kept interrupting him, "Daddy, daddy, oh my gosh" over and over and over in disbelief! Then, I said, "Daddy, are you with Chey? I have to know! Are you with her?" and his image began to fade in front of me. "Daddy, don't go, please don't go," I begged, sobbing out loud as I slept. He faded before either disclosure. I awoke crying and continued, intermittently, to weep all day. Again, frustratingly fleeting and intangible.

Freud believed that dreams were incited by nuggets of the unconscious mind: feelings, thoughts, images, beliefs, experiences. Jung believed similarly, and added that dreams make us whole, more integrated. More concrete researchers admit they don't really know why humans dream or what function they serve, other scientists believe dopamine (L-dopa) plays a role in dreaming. Across cultures, the spiritual or religious believe, often, that certain types of dreams may be God's way of communicating between worlds.

Last night, for some unknown reason and literally from out of nowhere, I had the mother of all dreams. I dreamed of all my dead. They were corporeal not conceptual, concrete not evasive, and indelibly present.

I saw Cheyenne. I touched her. I hugged her. I told her, repeatedly, how very sorry I was that I could not save her, that I had given her death instead of life. I wept. She wept. We held each other and she said, "Mom, I forgive you. It wasn't your fault." I wept more, and felt such overwhelming love between us that to try to speak of it here would be insufficient and vacuous.

The moment was too sacrosanct for language. I could feel her.

My father and my mother were there too. Elisabeth was there. My grandmother was there. All recognizably dead. But all integral in the dream, except my grandmother, a woman with whom I was never close, who appeared, briefly, back in my mother's room as a sort-of-disconnected-apparition who never made eye contact with me.

The night sky looked barely real this morning. I saw the bright stars against the darkness and the full moon lit the sky just enough that I could see dew glistening on the leaves. The crickets sang in full orchestra. For a few moments, I had trouble distinguishing the world of dreams from the world of reality.

I haven't accepted a particular theory of why we dream. This morning, it's inconsequential. I dreamed of her. Finally. After all this time, I dreamed of her and saw her face and touched her and held her and spoke the words I've waited so long to say. And for that, I am filled with tearful gratitude. Even if this dream never re-emerges, it has incited a looking-within my self today that I've never before experienced.

And I wonder if it was, in fact, just a dream, at all.

(Photo for M-bug)

October is Infant and Child Death Awareness Month

2010-09-23T00:30:00.000-07:00

We invite you to join the MISS Foundation in our 1st official

Barefoot Walkabout to Remember (tm)

as we walk for and with our children...

This is a profoundly meaningful practice of mindfulness-based grieving which I discovered a few years ago. It has since taught me more about my self in the world, and in relationship to my dead daughter, parents, and friends than I could have ever imagined.

Please, see here for more information and join us...

Special gratitude to Kara and Hawk Jones for the amazing artwork,

as we do, every day, walk for and with them...

Wait, is that my heart spilled onto the ark's floor?

2010-09-13T14:05:00.000-07:00

Like animals entering the ark, they gathered, two-by-two or three-by-three. Even four-by-four. But rarely one-by-one. They sought shelter, respite from the unsympathetic world.

And for three days, they found sanctuary, within the self and in the space between the self and other.

There were rituals all around, moments with tears and laughter and learning and growing and solitude and sharing and contemplation and confronting and love and compassion. And everywhere you turned, hearts were spilled onto the ground. Glasses brimmed with the tears of mourners. The recently acquainted held one another and weeped. The palisades of language, socioeconomic status, religion, ethnicity, and even age of child or cause of death were stripped away as we all stood naked in the midst of each other, clothed only with our suffering. On days like these, we realize what is truly important in our lives. On days like these, we bear no crimson masks. On days like these, we are reduced to our true, authentic selves, able now to recognize our own despair in the eyes of others. Magnificently painful and painfully magnificent.

On the final day, many hesitated to leave what we'd all come to recognize as a holy place. There were talks of the "painful re-entry" and the "envy of the normals." I believe one of the reasons people want to remain in this place is the sense of community we share... this communal milieu brings forth an aliveness in us that perhaps we've never before experienced. It's a sense of aliveness so palpable that it breathes into us.

Confronting death- and more importantly the carnage He left behind - seems to have given a renewed sense of life to hundreds of people this weekend at the MISS Foundation's 2010 gathering. It's not the old life of the normals. It's not the delicious naiveté in which we once existed. No. And it never will be again.

Many of us will remain indelibly changed by those extraordinarily raw moments in the ark. There, as our truth leaked out through fissures in the walls of our self, onto the floor, others tiptoed carefully around, so as not to disturb, recognizing something really big and really sacred is happening here.

And they stood with us, two-by-two or four-by-four, as witnesses to our spilling.

The most healing three-days a bereaved person could spend...

2010-08-10T13:30:00.000-07:00

The MISS Foundation's conference is almost here.

We hope you can join us Sept 2-4, 2010 in Tempe, Arizona for an

unspeakably life-changing event!

View our program here.

Grief, the Great Leveler

2010-08-07T17:21:00.000-07:00

"When you find a person who has the same thought as yours, you cry out for joy, and you go and shake him by the hand. Your heart leaps as though you were walking in a street in a foreign land and you heard your own language spoken, or your name in a room full of strangers."

-Anne Morrow Lindbergh

On March 1 of 1932, Charles Lindbergh, Jr., aged 20 months, was abducted from his home in the middle of the night. Most of us have heard the horrific story of this kidnapping and murder. Anne Morrow Lindbergh, his mother, went on to publish a number of books, making significant literary contributions. My two favorites- A Gift from the Sea and Hour of Gold, hold within their pages exquisite truths, some rarely spoken with such eloquence:

Contrary to the general assumption, the first days of grief are not the worst. The immediate reaction is usually shock and numbing disbelief. One has undergone an amputation. After shock comes acute early grief which is a kind of "condensed presence" -- almost a form of possession. One still feels the lost limb down to the nerve endings. It is as if the intensity of grief fused the distance between you and the dead. Or perhaps, in reality, part of one dies. Like Orpheus, one tries to follow the dead on the beginning of their journey. But one cannot, like Orpheus, go all the way, and after a long journey one comes back. If one is lucky, one is reborn. Some people die and are reborn many times in their lives. For others the ground is too barren and the time too short for rebirth. Part of the process is the growth of a new relationship with the dead, that "véritable ami mort*" Saint-Exupéry speaks of. Like all gestation, it is a slow dark wordless process. While it is taking place one is painfully vulnerable. One must guard and protect the new life growing within-- like a child.

One must grieve, and one must go through periods of numbness that are harder to bear than grief. One must refuse the easy escapes offered by habit and human tradition. The first and most common offerings of family and friends are always distractions ("Take her out", "Get her away" , "Change the scene", "Bring in people to cheer her up", "Don't let her sit and mourn" ). On the other hand, there is the temptation to self-pity or glorification of grief. "I will instruct my sorrows to be proud," Constance cries in a magnificent speech in Shakespeare's King John. Despite her words, there is not aristocracy of grief. Grief is a great leveler. There is no highroad out.

Courage is a first step, but simply to bear the blow bravely is not enough. Stoicism is courageous, but it is only a halfway house on the long road. It is a shield, permissible for a short time only. In the end, one has to discard shields and remain open and vulnerable. Otherwise, scar tissue will seal off the wound and no growth will follow. To grow, to be reborn, one must remain vulnerable-- open to love but also hideously open to the possibility of more suffering.

-Hour of Gold, Hour of Lead, 1932

And how is it that 78 years ago, a bereaved mother in 1932 could have spoken truths that resonated so with me today, her thoughts the same as mine? Lindbergh speaks my name. She speaks my name in rooms full of strangers. And grief, of course, remains the same: It is, certainly, the great leveler.

Grief's Fire at Sweet 16

2010-07-28T08:15:00.000-07:00

A circumspect message from my fortune cookie yesterday, 7/27/10

It brought both a smile, gratitude, & some tears

Indeed...

Chey's butsudan

Sometimes, when I am visited by grief, words to describe our time together drip from my fingers, like anxious rain drops drip off my redwood patio, onto the thirty rosebush below, and over the heather river rocks.

At other times, words forsake me, march into hiding, and my fingertips dry up like the crusty, desert soil. I become overtaken by grief that is word-less. When this happens, I often find myself more emotional than usual, unable to transform my tears into neat little letters of the alphabet, the ones my children tried so hard to sound, the ones that make feelings more sensical and manageable, ordered and less chaotic.

I realized that one of the central points I've learned is that my grief mastery requires a constant balancing between staying close enough to the fire that I feel its heat, but not so close that I am entrapped and burned by it. I don't want to forget my pain, or disinvite grief from my life. Certainly not. To do so would be to relinquish ties, and to do that would be to dismiss my love for her. No. Yet, I could not constantly remain sitting so close to the fire that it seduces me into its flames, harkening me to stay, don't leave, persuading me to come closer. It would paralyze me, capture me, and surely I could not see anyone else sitting 'round the fire, entranced by its dark and delicious ambiguity.

I sat by the fire this week. I was mesmerized. 16 is a big-girl-year, and it hit with hot fury. However, I choose not to sit so close today, stare too long, or give up my place in the world of the living. So I am scooting away, and turning my back to the fire until it, again, needs attention- a piece of wood or some oxygen to breathe.

There are too many hurting others, too much love in my life and the world, too much beauty yet undiscovered, for me to stay in that place right now. We had our time together, deeply enmeshed, and the flames of grief have reminded me of their power. That energy is better used elsewhere, for now, though, and it's a new day.

Happy 16th Birthday Chey. Like the flames of grief, my love for you will never, ever die. You are, indeed, that which casts its shadow on all that is both painful and beautiful in my life.

**And, a very special thank you to all those who remembered, sent notes, and lit candles. You cannot imagine how much it means to have others think of her life. Thank you so much**

Sarah- thank you for this.

Cultural Experiences in Death: More in common than that which differs

2010-07-21T07:40:00.001-07:00

Love is the only possible explanation for the extraordinary suffering throughout the world.

-Oscar Wilde

Ethnographic research is one of my favorite, wherein the outsider becomes part of the system in which she is studying, not intending to incite change, but simply to learn. I spent this summer on a Hutterite colony, an Amish-like communal, Germanic society built upon faith, pacifism, and agriculture.

And learn I certainly did.

I am working on the paper now, which I hope to publish in one of my favorite thanatology journals. But I do want to, out-loud, express my gratitude to each and every mother, father, sister, brother, uncle, aunt, grandmother, grandfather, friend, and neighbor with whom I spoke who shared, so openly, the painful struggle of infant and child death on the colony. I know none of you will ever read this, but your stories have touched me in profound ways. I will carry the memories of all your children and grandchildren with me, in my heart, all my days on Earth. I am grateful.

What did I learn from this primarily homogeneous culture? Our family systems and structures are contradistinct. Housing structure and proximity vastly different. Religious practices vary a great deal. Even language and garb differ.

Yet, the hearts of grieving parents who have lost children bleeds the same from one culture to another, traversing any differences, and creating an invisible bond of shared pain. No words needed to be exchanged to know this. It could be felt resonating throughout the walls of rooms where tears were so generously expressed, and the eyes of grieving parents resembled so many others I'd seen in my 15 years of work.

Love and suffering, and love, connect us all.

The Wounded Platoon

2010-05-21T09:03:00.000-07:00

Tragic, just tragic, in so many, many ways. Many victims here. While it is long, it is well worth watching. And so important.

This, in addition to traumatic bereavement in families, is why the CTB is so important, and clinicians well-trained in being fully present in healing relationships with patients is one very important factor for many.

As a society, this should serve as a clarion call for change.

"It is not from ourselves that we learn to be better than we are." -Wendell Berry

A Grieving Mother's Manifesto

2010-05-05T20:43:00.000-07:00

These yellow butterflies are in honor

of Alec and Asher... I will never forget you darling boys.

Mother’s Day Manifesto

This is my path. It was not a path of my choice, but it is a path I must walk mindfully with intention. It is a journey through grief that takes time. Every cell in my body aches and longs to be with my beloved child. I may be impatient, distracted, frustrating, and unfocused. I may get angry more easily, or I may seem hopeless. I will shed many, many, many tears. I won’t smile as often as my old self. Smiling hurts now. Most everything hurts some days, even breathing. But please, just sit beside me. Say nothing. Do not offer a cure. Or a pill, or a word, or a potion.

Witness my suffering and don't turn away from me.

Please be gentle with me.

Please, self, be gentle with me, too.

I will not ever "get over it" so please don’t urge me down that path. Even if it seems like I am having a good day, maybe I am even able to smile for a moment, the pain is just beneath the surface of my skin. Some days, I feel paralyzed. My chest has a nearly constant sinking pain and sometimes I feel as if I will explode from the grief. This is affecting me as a woman, a mother, a human being. It affects every aspect of me: spiritually, physically, mentally, and emotionally. I barely recognize myself in the mirror anymore.

Remember that grief is as personal to each individual as a fingerprint. Don't tell me how I should or shouldn’t be doing it or that I should or shouldn’t “feel better by now.” Don't tell me what's right or wrong. I'm doing it my way, in my time. If I am to survive this, I must do what is best for me.

Surviving this means seeing life’s meaning change and evolve. What I knew to be true or absolute or real or fair about the world has been challenged so I'm finding my way, moment-to-moment in this new place. Things that once seemed important to me are barely thoughts any longer. I notice life's suffering more- hungry children, the homeless and the destitute, a mother’s harsh voice toward her young child or by an elderly person struggling with the door. So many things I struggle to understand.

Don’t tell me that “God has a plan” for me. This, my friend, is between me and my God.

Those platitudes seem far too easy to slip from the mouths of those who tuck their own child into a safe, warm bed at night: Can you begin to imagine your own child, flesh of your flesh, lying lifeless in a casket, when “goodbye” means you’ll never see them on this Earth again? Grieving mothers- and fathers- and grandparents- and siblings won’t wake up one day with everything ’okay’ and life back to normal. I have a new normal now.

Oh, perhaps as time passes, I will discover new meanings and insights about what my child’s death means to me. Perhaps, one day, when I am very, very old, I will say that time has truly helped to heal my broken heart. But always remember that not a second of any minute of any hour of any day passes when I am not aware of the presence of her absence, no matter how many years lurk over my shoulder.

Love never dies.

So this year, on Mother’s Day, don’t forget that I have another one, another child, whose absence, like the sky, is spread over everything (C.S. Lewis).

Don’t forget to say, “How are you really feeling this Mother’s Day?” Don’t forget that even if I have living children, my heart still aches for the one that is absent—for I am never quite complete without my child. And because love is much, much, much bigger than Death.

Becoming::::::Unhinged

2010-02-20T07:16:00.000-08:00

It's been a long week. Too many newly bereaved families. Too many big decisions about life. Certainly, stress.

I was looking forward to a quiet evening, at home, unwinding with my beautiful family, anticipating the weekend. We thought about yoga. We contemplated a bike ride. But a movie and the chocolate colored pillows spread across the crismon carpet sounded so much better by the time I'd answered my emails from the day.

We watched a movie I'd heard about from a friend in Italy. And I embarked on a rollercoaster of emotions from confusion to rage to disgust. Then, even to a softening of my own heart. If you've watched the film, you know what I mean... and then, then I felt surprised- perhaps even consternation- directed at my self for having experienced what I felt, but knew it could not be, empathy.

My emotions were completely manageable throughout the entire duration of the film.

But, the zenith of the movie, the end bedroom scene, unhinged me. Completely, totally unhinged me, as the main character in the film spoke words that I have spoken myself, many times, outloud and reverberating through my own mind.

I turned over on the floor face down, like an ostrich, and tried to breathe through the tears, swallowing them whole and drowning myself in the process. I was quivering as if I'd been left naked in the snow. My heart was pounding. And my body aching from the tension of sorrow. Then, it came over me. "What am I doing?" I thought to myself. I knew better. "Why am I fighting it so much?" So I got up and went to the bathroom and cried. And cried. And sobbed. About 15 minutes later, I felt so much relief. I was tired and my eyes red and swollen, but I could breathe again. Nearly 16 years later, and the grief can, occasionally, return with a fury. How truly reassuring.

No really. How truly reassuring.

Why?

Because it is my grief that has brought me to life. And He visits to reassure me that I'm still alive, amidst the mundanity of chaos. More than many others I've met along my path, I feel so alive. I've never felt depressed, or bored, or mindless in the nearly 5700 days since Chey's death. I've felt many other emotions, but never emotions of complacency or apathy or death (death in the sense of anhedonism, emotionless, or bland). So, my grief revisits me, like a relative from a distant place, often without notice. I may not have time to wash the sheets for His arrival. Or prepare for the extra meals. Or even tidy up a bit. He just shows up.

Nevertheless, when He leaves (and though He always leaves morsels behind He really does leave), I'm always thankful for the visit - eventually.

I woke up this morning, remnants of my guest still visible- my eyes still swollen and stinging and my heart still heavy with grief. But I looked out the window and I noticed the overcast sky, and the birds flying from tree to tree, and how the branches of my emerald palo verde are growing long enough to shade the summer's heat soon. And I noticed the sounds of those I love around me, and the clean water coming from my faucet, and the smell of vanilla in the air, and I know that I am alive. And for all of that, I am grateful.

Resisting grief never works for me. I think because I realize, in some visceral place, that it's in the unhinging when the beauty of life becomes truly salient.

Oh, the movie- "I've loved you for so long..." -- highly recommended.

Thinking of you too and your momma, Blakey.

The Wild Storms

2010-02-15T07:22:00.000-08:00

For my dear friend, Pete, thinking of all our wild storms...

MISS you Pete.

I am too alone in the world, and not alone enough
to make every minute holy.
I am too tiny in this world, and not tiny enough
just to lie before you like a thing,
shrewd and secretive.
I want my own will,
and I want simply to be with my will,
as it goes toward action,
and in the silent, sometimes hardly moving times
when something is coming near,
I want to be with those who know secret things
or else alone.
I want to be a mirror for your whole body,
and I never want to be blind, or to be too old
to hold up your heavy and swaying picture.
I want to unfold.
I don't want to stay folded anywhere,
because where I am folded, there I am a lie.
And I want my grasp of things
true before you. I want to describe myself
like a painting that I looked at
closely for a long time,
like a saying that I finally understood,
like the pitcher I use every day,
like the face of my mother,
like a ship
that took me safely
through the wildest storm of all.

~Ranier Maria Rilke

Death Studies: Spring 2010

2010-02-06T20:58:00.000-08:00

The moment one gives close attention to anything, even a blade of grass,

it becomes a mysterious, awesome, magnificent world in itself.

~H. Miller

Nearly 50 students filled the classroom this Spring, their anticipation apparent in their early arrivals on the first day of class. They were eager to learn that of which we, even in the Academy, rarely speak.

For five days, at least eight hours at a time, they listened, watched, touched, and experienced. We laughed. We cried. We contemplated. We questioned. We wondered. We reached. We grew. We bore witness to pain and loss. And we entered that space willingly and honestly. I don't know if there are words to express what happened in our five days together, but for so many, myself included, it was too powerful to ever forget.

And so, I won't. I won't ever forget my Spring of 2010 students and the many miles of journeying we've done together. These brief moments will endure long beyond my tenure at Arizona State. And I hope that, one day, when they need a lesson about life, love, trauma, and death, our time together will be a catalyst for healing, both in receiving and in giving.

Thank you each. Thank you.

Tears of the Young for the Past

2010-01-25T11:05:00.000-08:00

Creative expression of trauma is a powerful means by which to share emotional responses of loss with others.

Artist, Kseniya Simonova, 24, is featured in this video as she expresses historic loss through a series of pictures on an illuminated sand table. This mesmeric artist is creating a visual image of the German invasion during World War II.

It's known as the Great Patriotic War in the Ukraine. Tragically, one in four of the population were killed, totalling eight to 11 million deaths out of a population of 42 million.

Can you imagine the collective horror of families?

Beyond the Imagining

2010-01-15T08:00:00.000-08:00

"PTSD is caused by contact between the individual and the darkest and most violent forces of human nature. take the victim over the edge of life into serious confrontations with death or uncontrolled violence. Some individuals are therefore transformed and become, at some level, bearers of the traumatic experience." (Blank, 1985, p. 88)

Mass trauma has come to Haiti. Trauma so overwhelming that it is difficult to comprehend, within the limitations of the human brain, the enormity of the losses. I suspect even witnesses on the ground in Port-au-Prince- those seeing with their own eyes- still cannot process the magnitude of this tragedy.

While the mass media is clearly focused today on Haiti, public attention is not long-lived.

Weeks, month, years, and decades after the clean-up of Haiti- when the bodies are gone, buildings rebuilt, freshly sodded playgrounds bless the land, and children's schools are born into the new generation of, as one reporter said, a "better" Haiti, I cannot help but think to myself that this traumatic incident is infinite.

Much like Columbine, September 11th, Rwanda, the Lost Boys of Sudan, even the Holocaust, and other highly publicized tragedies.

Yet, all the media attention brings much needed help. And so, that is good.

But I hope we don't forget that long after the new anti-violence educational programs in Colorado were initiated; long after the last scrap of metal rubble at ground zero was taken away; long after the Tutsi and Hutu basket weavers came together to raise money for orphans in Rwanda; long after the Lost Boys started running track in American high schools-- long after all these things, there remain profoundly painful psychological wounds of the survivors. For some, time does its job well in promoting healing and helping those affected by these tragedies find meaning again in life. For others, the struggle with grief in the aftermath of such trauma will be paralyzing.

So when I hear stories today of the tragedies from years ago, relegated to the back of the public's book of memories, I think of those families, and I imagine how life has changed, irreparably, for them. And in ten and twenty years, I will probably do the same for the countless numbers of people in Haiti who are suffering in ways I cannot begin to imagine.

How to help:

•The American Red Cross is pledging an initial $200,000 to assist communities impacted by this earthquake. They expect to provide immediate needs for food, water, temporary shelter, medical services and emotional support. They are accepting donations through their International Response Fund.

•UNICEF has issued a statement that "Children are always the most vulnerable population in any natural disaster, and UNICEF is there for them." UNICEF requests donations for relief for children in Haiti via their Haiti Earthquake Fund. You can also call 1-800-4UNICEF.

•Donate through Wyclef Jean's foundation, Yele Haiti. Text "Yele" to 501501 and $5 will be charged to your phone bill and given to relief projects through the organization.

•Operation USA is appealing for donations of funds from the public and corporate donations in bulk of health care materials, water purification supplies and food supplements which it will ship to the region from its base in the Port of Los Angeles.

•Save The Children has launched an emergency relief effort for Haiti. Donate to their fund to provide medical attention and clean water to children and families.

**The U.S. State Department Operations Center has set up the following number for Americans seeking information about family members in Haiti: 1-888-407-4747**

Hans Christian Andersen "Historien om en Moder"

2009-12-18T06:19:00.000-08:00

"Did you see Death go by with my little child?"

"Yes," said the blackthorn bush. "But I shall not tell you which way he went unless you warm me against your heart. I am freezing to death. I am stiff with ice."

She pressed the blackthorn bush against her heart to warm it, and the thorns stabbed so deep into her flesh that great drops of red blood flowed. So warm was the mother's heart that the blackthorn bush blossomed and put forth green leaves on that dark winter's night.

And it told her the way to go.

The Story of a Mother, Hans Christian Andersen

I read The Story of a Mother in 1995, only a year following Chey's death. The horrors of the story were matched only by the very reality I faced every morning when I awoke, in the evening before I closed my eyes, and in the space between them. I related so much to his careful construction of the story because I'd often personified Death. He, this abstract being- the enemy- came into my life, through my front door, into my home, and into my very own body and took her against my will. By so doing, I could begin to process my own unthinkable experience. Yet, the story evoked only indescribably painful emotions at that time, and I could not yet begin to see (note the relationship to the mother's loss of her eyes in the story) the entire picture of His "taking of her".

Angie, Dallas' mother, shared with me an artistic rendition of the story. The symbols had entirely new meaning to me, more than 5600 days, nearly 135,000 hours, and countless tears later... and this morning, I wept. And wept.

Words and Broken Bones...

2009-11-21T14:53:00.000-08:00

"Passed away, gone to be with the Lord, expired, departed, went home".

These are all very nice euphemisms for the ‘D-word.’

"It was God’s will. Time will heal. Everything happens for a reason. You’re young so just try again. God needed an angel to tend his garden. At least she's not in pain anymore. At least you have others at home".

Yet, more euphemisms intended to comfort the bereaved. I don’t like death euphemisms. I prefer to tell the truth. My daughter died and I don’t like Death for taking her from me. Often, my frankness affronts others.

Death was an abstract entity before Chey's death in 1994. I knew that Death was a part of life, yet somehow, its potential soiree in my life seemed too comfortably distant for reality. Frankly, I rather feared Death, avoiding discussions about Him. Once in awhile, I would hear a story about a friend’s parent who died and I would think to myself, “One day, Joanne, mom and dad are going to die. You'll have to face it one day.” But my insulated idealism quickly hurried the reality of Death out the back door.

Naïve? Perhaps so, but it is oh so comfortable.

Then, Death found me. He knocked on my door, not concerned with justice. Or timing. Without thought to the crime He was about to commit. Death came, and He left me in the carnage. And, instead of minding proper order, He violated every righteous law of nature and took my little girl one hot summer day. I tried to fight. I kicked and screamed. I hated Death and begged Him to leave her and take me instead. I negotiated everything I had. To no avail. I lost myself in the war.

I did not even recognize myself in the muddy waters of grief. I was hollowed. Every cell in my body ached for her presence. Like Gretel, I collected crumbs, trying to find my way through the darkest forest I’d ever faced. And before I knew it, the minutes turned to days and days to weeks and weeks to years. I’m often not certain how I survived. I’m not certain that I did survive.

Seven years passed, and my mother suddenly died. I felt like Death was taunting me again. I watched my mother die as we disconnected the tubes that forced air into her lungs. I thought about many things as she was dying. I thought about how much I'd miss her- and I missed her for my children. I thought of how thankful I felt to have had 65 years with her. I thought about how much my father was going to miss her. I thought about Chey and wondered if she’d be there to greet her grandmother. I thought about how unfair it was that Death and I had to dance once again. Then, yes, again, five years to the day after my mother's death, it was my father's turn. I felt orphaned.

What wreckage Death had brought.

It has now been nearly 5,600 days since I buried my little girl. But love does not decompose as flesh. Edges from her photographs are worn from too much handling and the colors are fading but my love for her transcends time. At times, I juxtapose scenes from our two worlds, and I imagine the moment when I will see her again. I am not sure what follows this life but I believe that something does.

So while this was not a path of my choice, it is a path I must walk with careful consideration. And as time passes, I have discovered new meanings and insights about her death, and more importantly, her life. She has taught me that love is unconditional, that you cannot sit back and watch injustice; that Death is not to be feared because love is much, much bigger and stronger; that it is okay to dance in the rain; that time is merely perception; that one person can truly change the world; that kindnesses last forever; and that words really can ‘break bones.’

Euphemisms don’t ease the suffering of the bereaved. Telling someone that “God has a plan” or that “They’re in a better place” is often not helpful to many grieving people. Until society starts really talking about Death, using the dreaded d-word, and facing the realization that one day we’ll all deal with it, we won’t get any better at offering compassion, comfort, and camaraderie to those in grief.

So, in the hope that I can help another, I simply say, “My daughter died and I don’t like it. Nor will I ever accept it. Tell me your grief story and I’ll share your pain.”