WARNING: This blog post is damned honest and may incite emotions

I am the mother of five children: four who walk, one who soars.

It's my standard answer to the dreaded question: "How many kids do you have?"

But it's been a very long time since I've told my story publicly, and the peculiarities I'll share here today, as in exceedingly rare form, will be such that many have never heard.

I have given birth five times to five beautiful babies. Only one of my babies made it all the way to her due date, the others being born several weeks early. And her, the one who made it to 40 plus weeks, died during her birth.

I lost my parents to death long ago, far too young; I've lost my best friend and mentor; I've had multiple pregnancy losses; I've lost partners... And for me (note: for me), nothing compares to the pain of losing my fourth child. From my journal:

When I arrived at the hospital... already eight centimeters dilated and without any pain medication... labor with you was more painful than with the others. I quickly learned why... the doctors told me they thought you died.  I laid there in disbelief.  I kept asking to go home, and I tried to get up from the bed.  I knew this could not be true... They were asking me silly questions, hundreds of them.  They asked if I wanted to hold you. They asked if I wanted pictures of you.  But I was trying to concentrate on giving birth with the contractions now one minute apart.  Anyway, babies don't die during birth anymore... Within twenty minutes after I arrived at the hospital, you were born.  My eyes closed tight... you did not cry or even attempt to breathe.  They offered no explanation, nor any reason.  The doctor said there was none.  There was only the deafening stillness in that room.  Not knowing what to expect, I was afraid to look at you... My body trembled with fear and adrenaline. My legs were shaking wildly and I felt myself leave my body...

I thought I, too, might die during her birth, as the women of the Victorian era did. And I remember thinking, "well if she doesn't live, neither should I."  There are no words, none, to describe the inexplicable horror, fear, terror, and maniacal agony of that hot July day. Even now, nearly 19 years later, I can feel the fear and the sadness and the searing pain travel from the tips of my hair to the tips of my toes. The juxtaposition of birth and death, like some cruel joke of Mother Nature, is the absolute antithesis of the feminine archetype, the ultimate betrayal of my body whom I would soon come to call "Judas."  

They didn't try to resuscitate her. Or me. We were treated with contempt, in my opinion then; contempt that I now recognize as death avoidance, provider guilt, and shame. The lack of psychosocial care during this time of traumatic loss would set the tone for my entire journey through grief.

I left the hospital within a few hours of giving birth, all the while listening to newborns around me as I held, in my quivering arms, her ample body, all eight pounds and 22" of her. I was pregnant, now, with an impenetrable grief and suffering that I never imagined could be.

The drive home was a bizarre, dream-like projection through time. Because something is very wrong with the world, my milk came in soon after her death (and remained for nearly a year because nature has a sense of twisted humor), and I raged against my body and evolution and the Creator and the UPS man and unicorns and the heavy box I lifted and pregnant neighbors for having killed her too.

A hot summer day

August of '94

Hotter than I'd ever felt

As sweat and tears poured from my cheeks

I buried my little girl. In a tiny, pink satin casket,

encircled with pictures of her mourning family

I watched as shovel by shovel,

The men in gray suits

Covered her tender body with dirt.

My heart screamed with pain.

Goodbye.

We said goodbye.

I laid on her mound of dirt in the scorching heat of the Arizona desert for a very long time. Everyone else went to eat. Food? Who in the hell can think about food at a time like this? I didn't care if I ever ate, or laughed, or jumped, or climbed rocks, or combed my hair again. I remember being there, dressed in black for the occasion of my baby's burial, staring at the clouds and thinking, "I will never be the same. I died with her."

Grief enveloped me, pulling me up into the darkest corners of its folds. Flashes of oblivion, hysteria, disbelief, confusion, like a scratched album, replayed over and over again in my mind. I played the scene and changed the outcome repeatedly, as if doing so would somehow help. I did not sleep for days. I paced the hallways at night, going in and out of her nursery with the little lambs and ivy I'd so carefully pasted on her walls. I felt like a wild animal trapped in a cage from which there was no escape. My mind was not my own. Nor was my body. I hurt. I hurt all over, in my eyes, my throat, my chest, my belly. God, it was so physical a loss. Hormones raged against reality sending maternal messages through all my cells but having nowhere to enact my primal, mothering instincts. This felt as much like madness as I had ever felt. I was filled with fear, and I had no where to turn:

Last night was horrible. The monsoons came. I heard the lightning and ran to the window. I sat on the couch and heard the rain suddenly pour down. Panicked, I realized that your fragile little body would become drenched. I grabbed a raincoat and headed for the garage. I don’t know what came over me at that very moment but I was determined to go to the cemetery, get you, and protect you from the rain. I looked for the shovel and just as I found it with my keys in hand, tears pouring from my eyes, your father pulled me back into the house. I fought him, yelled at him to let me go. I tried to explain that I had to go and get you. It was my job.

How does this happen? How does a woman carry a baby for ten months, fall deeply in symbiotic love, only to have that most precious part of her die? Neither my heart nor my mind could comprehend it then, or even now. Pure, unmitigated horror. And the others. Oh the others. They did mean well, they did. They had their words of comfort: "God needed an angel," and "At least it wasn't the older child," and "You're young, you can have another."

But you see, I didn't believe in God. And I didn't love my older children any more or less than I loved her. And I didn't want another baby. Ever. 

This wasn't about the loss of motherhood. This wasn't about the loss of any baby. This was about her, and I wanted her, not just any baby, I wanted her. No other baby would assuage my longing for her, and I knew this in my marrow.

At first, when she died, I was consumed with my own grief. I remember thinking that no one could ever know this pain. I searched for others like me, and I wanted desperately to be around those who shared my story. I wondered why I was so self-consumed, why grief felt so self-centered, even narcissistic. I had this constant impulse to- as Dickinson said "measure every grief I meet." I spent weeks, even months, researching what might have caused her death. The medical librarian knew me by name. And I began to grow weary of the never-ending battle against the stupidity of the world which believed, mistakenly, that because she died moments before her birth, her life was less valuable, less worthy of dignity. I felt like a mother bear, constantly defending her from the ignorance of devaluation. I suspected that, in fact, was the impetus for the narcissism: a clever and useful mechanism of defense against a world that would strip me of my right to mourn my dead baby.

I went to counselors and therapists. They pushed drugs, tapping, church, even avoidance, and I abruptly rejected them all. I found Compassionate Friends in Phoenix and met some wonderful people there who would allow me to share my grief once a month. Still, I was hurting. I finally discovered a book written by Dr. John DeFrain. He was researching the deaths of babies in the 70s, long before most anyone else cared enough to delve into the depths of this hell. And I started to understand the problem. Most of my existential angst came from feeling disenfranchised, disconnected from others. Their experience of Chey's death was vastly different from mine:

Dear Mom and Dad...

I'm so hurt. I want you both to miss her the way I do. 
I want someone to miss her the way I do. I feel so alone. 
If Ari died, you'd all be mourning with me. You'd share the grief 
because you love him and you know him... but with her death, 
it's as if no one really cares, as if no one really loves her, 
as if she never existed. Please help me. I can't bear this loneliness. 

And of course, around every corner, I was inundated with dismissive language: she wasn't real, she never existed, she doesn't matter. But if she doesn't matter, neither do I. That was the topic sentence, those were the underpinnings of my place in the world now. 

Within months, I dropped to a dangerously low weight, uncertain I could live in this pain and loneliness any longer. And then one day, something too sacred to write about here happened - I mean WOW sacred- and I made the promise to my dead child that if I survived, I would change things for grieving parents. Not just those who had my story. My heart was broken open for all parents whose children died.

And I did survive. Well, sorta. A voracious reader, more than a year after her death, I picked up a copy of a book by a physician who would become my dearest friend and mentor for many years, Dr. Elisabeth Kubler-Ross. Her writing would soften the blow of - not just grief but- grief that is unrecognized, invalidated, pathologized, and made invisible. Oh, and I pushed back against the invisiblization of infant and child death alongside the most heartfelt and committed men and women I've ever known (and we're still fighting it against entities like the DSM, funders, providers, and society).

One such war took me seven years. Seven years and countless battles with special interest lobbyists of Herculean proportion. For the Biblical scholars, what transpired is nothing short of a David v. Goliath story, and the slingshot was the victor repeatedly in state-after-state. We were opposed by lobbyists- bizarrely all other women, some of whom were mothers- and who actually said, "Those women aren't really giving birth" and "Those aren't really babies." Yes, really, and yes, in those words. Um, no offense Allison S. but yeah fuck off. 

So let's just say that John DeFrain was right: social disenfranchisement, invalidation, and lack of compassion doesn't do wonderful things for an individual's emotional well-being. This is a mentally ill society that incites intense emotional duress for people. Yes. Society is mentally ill. We need a stocky manual for society's mental illnesses.

I digress. I suffered many wounds from the many battles I would fight, some on principle, some on law. All the while, the world carried on and, transformed, so did I:

Resolutions

Another Year

Time passes so quickly

A new home, new job, new friends, new school

The New Year and the new promises it holds

So many changes since July of '94

But some things never change

Even though my life goes on

Even though the tears don't come everyday 

Even though it seems my heart has finally begun to heal

Even though 18 months have passed since your death

There are things which the sands of time will never change 

No matter where I am, no matter what I do

No matter how much time passes

No matter what I become

I will always be your mother

You will always be my daughter

And I will always love you.

What saved me? Many things. 

Elisabeth who would say, "Keep working and don't worry about the idiots. Just keep working and right will always win in the end." She never was one to self-edit. Gosh, I miss her.

John who would say, "All children's lives are of equal worth and someday the world will know that." What great fortune I have had to know this man.

Randy who would say, "I'm so sorry." Friends like this are treasures.

Grief. Grief saved me. Oh yes, grief saved me. What a delicious paradox.

The many babies and children and adult children who died before their time, and the families who shared their stories with me- they saved me.

Today, I met a man whose 3, 5, and 6 year old children and wife were killed in a house fire. His story was unfathomable. We talked for a long time... Actually, he talked. There was absolutely nothing I could say or do except cry with him. I hate it when people say that God never gives you more than you can handle. This is exactly why I want to punch people who say that.

Sometimes, absolute strangers would save me. And sometimes, I'd save myself.

The Kindness Project was probably the single most important thing I did for me and for her. The MISS Foundation, which started in 1996, was created to help other families through counseling, support, advocacy, and research to help families whose children were dying or had died. The countless beautiful volunteers in this organization have been a force for good in the world. Seriously, the most beautiful children are the foundation upon which this organization has been built and maintained over the past 16 years.

And, I went from being atheist to believing in something beyond this world. I know, it's usually the reverse, isn't it? But for me, well, I've had things happen through the 19 years since her death that just defy statistical probability. I know, I know what you're thinking. And some days, I still question- and that's ok.  Traumatic death does this to some people. For years after she died, I lived with one foot in the world of the living and the other in the world of the dead. I took up residence in a liminal space between worlds. I exist in a world where pedicures and pop stars are irrelevant.

The American Dream

Baseball and apple pie

White picket fence

2.5 Children

A good job

Wall Street Success

A day at Gymboree

Three weeks paid vacation

To a faraway island   

Silver S.U.V.

Braces.

I am not one of them.

My dream is of another world.

I dream of the day

When all babies cry at birth, never silenced by death.

I dream of the day

When every child wakes from his quiescent slumber.

I dream of the day

When every child comes home from prom night

and no child gets cancer.

I dream of the day when every child grows to be old

And all parents die first. As it should be.

I dream of the day                  

When parents celebrate life, ignorant to any other way.

I dream of the day when others realize how very much it hurts,

and offer unconditional compassion

I dream of the day, when I will hold the little girl I buried in 1994.

This is my American Dream.

I had to surrender, to let go of the reins and allow myself to just be and be broken. And I opened myself to that which cannot be explained or understood within the framework of the material world. I opened myself to the numinous.

I'm reminded, actually, of what Santkeshavadas (सन्त केशवदास) said: 

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

Yep, on the beat you and beat you part. True that.

The monsoon season is here again. 

Unpredictable just like grief…so the rain fell and fell 

And from the inside of the store, I saw its fury 

I hesitated

Should I wait out the storm? 

But she has taught me not to wait 

And what is wrong with wet hair and sticky clothes? 

And so, with good intentions of running through the lot,

safely to the car

leaving behind the croissants and paper towels, I walked to the door

... And she caught my eye, 

to the left a mother and her little girl 

She was protecting her from the rain 

She removed her coat, kindergarten-yellow 

and held it over her daughter's head 

Maybe she was afraid of wet hair and sticky clothes or pneumonia? 

And they ran through the puddles, and they splashed,  and they laughed. 

And then safely got into their car. 

My mind attacked me as I stood frozen on the sidewalk 

I wasn't expecting the assault ...and my mind rewound to August of 1994 

The monsoons that fell, suddenly like your death 

As I was watching the television 

But it wasn't on 

I rushed to the window and the rain poured like the tears

Panic struck like lightning 

And as any good mother needing to protect her little girl from wet hair, sticky clothes,  

and maybe pneumonia, 

I took what I would need to shelter her from the storm 

A bright blue tarp and a mother's heart for comfort

...

Then, the shovel hidden beneath the gardening tools collecting dust, just like her nursery 
screamed madly, "Take me! Save your little girl!" 

I could not rescue her from the storm that day 

or protect my child as any good mother should 

Her body, surely drenched no splashing, no laughing 

And through the night thoughts of wet hair, sticky clothes, and pneumonia 

haunted and scorned me 

Sleep does not come easily 

For a mother who cannot safeguard her child 

We did not get into our car safely 

I could not deliver her from death.

Grief ceases to be narcissistic at some point, and it matures (we hope) beyond the center. At some point you're sitting in group really listening to the other and not needing to speak your pain.  At some point your story doesn't need to be told over and over again. At some point it is more about the other's pain than your own. At some point your heart will break open to other grieving parents with dissimilar stories. And then, your heart will break open to grieving widows and widowers, and to hungry children, and to the homeless, and to abused animals.

At some point we grow beyond the rather hubristic belief that we can eradicate death, even when anachronistic, and we realize that this moment is all we really have. This moment with our children, our partners, our family, our neighbors, our friends. Death comes too soon for some, eventually for all. What we do in the aftermath of death and loss and trauma for each other is what counts. So alongside the volunteers of the MISS Foundation and academic colleagues who share research interests, I will continue to advocate for social change on behalf of mourners. We need - and deserve - to be treated better by society. So do widows and widowers, so do the homeless, and the hungry, and the abused.  And an open heart of compassion to all others not only helps their heart, it helps your heart. That's what seeing beyond the self, an outwardly turned heart, can do. And this is what will change the world. And this is what will change the world. And this is what will change the world.

Nearly 20 years later, my life is divided into two parts, before her and after her. I am wildly happy and content in my life. But that doesn't mean I don't have grief. I will say it over and over: Just as the sun and the moon exist in the same sky, beauty and grief coexist in the same heart. And that is how it must be, at least for me...

This has become a disproportionately lengthy blog about my then and now. I suspect I'm setting the stage for my two decades without Chey. I decided I would revisit her journal on her 20th year of birth and death. This may well be the segue into that process as her 19th birthday approaches and I reflect, so rarely shared in such intimacy:

I still love and miss Cheyenne very much, yet her life and death has a different meaning today. In the Spring of 2007, I had her body disinterred. I brought her ashes home and placed them in a Japanese butsudan from the Shinto period. I took a small portion of her ashes and used them in a tattoo on my back for her 17^th birthday, an excerpt from St John of the Cross, Dark Night of the Soul: 

The soul still sings in the darkness, telling of the beauty she found there. Daring us not to think that because she endured such anguish and torture, she ran any more the danger of being lost in the night. Nay, in the darkness did she, rather, find herself. 

When I think of her, it's no longer as a small child. Rather, she feels ageless and enormous, larger than life. I'm reminded of what the philosopher Lao Tzu said,“Silence is a source of great strength.” 

I’ve always believed that all I needed could be found there, in the silence.  

Cheyenne’s voice is in the silence. 

And I am still listening. 

Thank you for reading. Thank you for your non-judging mind. Thank you for your open heart.