We exist. They existed. Please, see us.

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. Our grief is not contagious. It will not make you sick. It will not cause those you love to die. You are already vulnerable even though you may not realize it. Grief is simply an expression of love; hallowed love with no where to go except to be enacted through our mourning tears, through remembering them the rest of our days.

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

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

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

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?

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.

(Note that space is very limited)

The Shadow and the Light

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

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

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

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!

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. 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).

Maybe the luckiest dog in the world. 
He'd been hit by a car, had a broken tail, 
had a rope around his neck six times,
and was covered with exrement and detritus. 
He was dehydrated and very hungry.

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.

All leading to the little toe wounding...

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...

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...

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.

The film didn't really move me. I shed some tears 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.

So, what is my real story, one I've been hearing from other parents since starting this work in 1996- the one I wish Hollywood would tell- so the non-bereaved could really experience some of the more authentic aspects of grief many families report 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 the tips of our toes to the ends of our hair. The pain is indescribably physical and merciless.

- 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 early grief and how, on the rare occasion when we do sleep, we awaken in the morning, wishing we hadn't.

- I wish they would tell the story of how we look in the mirror at our unrecognizable self and wonder at the stranger we see. And how every relationship in our lives changes, 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 the 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, 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 may over-protect to maintain illusory control or under-love to maintain illusory protection from recurrent grief. And how trauma stays in the body and, even if we have processed the acute agony, returns the minute we feel concern for one of our other children because there is something in us that reminds us of our vulnerability. This something whispers, "you are not exempt".

- 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. How we may beg and plead 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 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, meant to comfort but coming from outside our hearts often do not, and mindless remarks about G*d's will and His garden, the one which needs tending, and something idiotic about making lemonade. And how others may treat us as if we are lepers, turn the other way when we walk in a room, pretend that our child did not exist.

-I wish they would tell how even religious people may have two lenses through which they view the world.  Yes, even if we have a belief in the afterlife and our spirituality eases some of the angst, it often doesn't ease all of it. For most of us, there is no "better place" for our child than our own arms.

- I wish they would tell the story of how life goes on, and we can feel content and happy again, but that everything has changed, and that we have died in a sense, and must choose to be reborn when we are ready. And that the things that help us along- when we are ready- are unique to us but that we need nonjudgmental support and unrushed compassion, as oxygen and nourishment, along the way.

- 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.

Tonight, I watched a movie called 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.

I wish that somehow they could tell the true story of the anguish of loss without a contrived happy ending into the sunset. Not that we, at some point, aren't capable of pure love and joy, in fact, sometimes more than we could have ever imagined. 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? And wouldn't they appreciate, more fully, all they have, every moment?

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.

Worldwide Rapture of Kindness Day!

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

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

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

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

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

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.