Saturday, December 31, 2011

The Irrelevance of Time

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?

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.

Tuesday, December 6, 2011

The Great Ocean of Sorrow

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.

She weeps when she is alone.
She hopes when she is able.
She longs every moment of every day.
She breathes only because she must.
She wishes it was different.

She would give her life for her child.
This is a mother's love.
She is a grieving mother.

Thursday, December 1, 2011

Sarah Love, full of her name

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 or call the office at 602.279.MISS.

Many, many thanks for reading about our organization!

Sunday, November 13, 2011

Kindness, Compassion, and Connor...

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...

Monday, November 7, 2011

The Paradox of Suffering

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 (nod to Mary Oliver). 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? No, because she is mine, for all eternity, and I am hers for just as long.

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.

Thursday, November 3, 2011

The First Josephine

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.


Friday, October 21, 2011

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.

Wednesday, October 5, 2011

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?

Sunday, September 11, 2011

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*

Friday, August 26, 2011

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.

Tuesday, August 9, 2011

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.


(Note that space is very limited)

Tuesday, July 26, 2011

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.

Wednesday, July 20, 2011

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

Wednesday, July 13, 2011

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)".

Sunday, July 10, 2011

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.

Saturday, June 4, 2011

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?****


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

Follow me on Facebook