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!


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

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