Monday, May 20, 2013

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.
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:

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.

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 17th 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.

Friday, May 10, 2013

As we near Mother's Day...NASCAR to the rescue!

What an interesting day as we approach Mother's Day 2013.

I got an email today from a grieving mom, formerly from the Arizona group, recently relocated to Kansas and is starting her own MISS Foundation support group there.

It said:
Dr. Cacciatore,

My husband Brian nominated the MISS Foundation for an award from the Jimmie Johnson Foundation. He received a call this morning saying MISS Foundation was chosen as a winner and will receive a $10,000 grant, and an ice cream party sponsored by Blue Bunny, and the MISS Foundation logo will be worn on Jimmie's helmet during a NASCAR race. We are thrilled for this news... As it comes on Brianna's 2nd Birthday.

This is why our families are so extraordinary, even in their deepest sadness.  It is their precious daughter's birth and death day, and this news came, serendipitously, today.

A few things I want to say about this.

First, it came in honor of Brianna today which I find pretty danged awesome.

Second, I'm in awe that it actually came at all.

You see, the MISS Foundation has applied for countless grants. I'm not kidding here- countless. We are consistently turned down, time after time.  Why? I've heard many excu...uh, reasons, not the least of which is that we aren't "sexy" enough. Huh? Say again please?

That's right. Grantors want "sexy" causes.  And the deaths of babies and children just ain't sexy.

But really, I take issue with this nonsensical postulation.

First, we help - literally - thousands upon thousands of families every year from all socioeconomic classes, all religions and regions, all ages and causes of death, high profile cases and the invisible and marginalized deaths. We help parents, siblings, grandparents, and entire communities. We offer counseling. We advocate for families. We have support programs. We conduct and support research. We educate. No one does all that we do for our families.

Second, people may not want to think about child death. But it affects us all, through generations. That is not an overstatement. What we do not address now, for lack of compassion, training, and awareness (incited by death avoidance)- will come back to bite us in the ass - hard - later. This, I promise. I've seen it enacted over and over in family systems and narratives.  So the death of a child in the community represents a loss for us all, one that will ultimately affect your children, my children, all of us.

Third, yeah, yeah, we're not sexy and no one wants to associate with us. Until they need us. Until it is their employee, or neighbor, or friend. And when it does happen within their circle of perceived safety, who do they call? Yep. But how soon folks forget who helped in the community when it was most needed. Rather, some- many even- go on to support other causes. They needed us, desperately, at those desperate moments, then all too soon forgot who helped and forgot that many who will follow in their footsteps will need help too (I could rant here but I'll withhold). 

Finally, the big secret is that by confronting death- by helping families dealing with life's most tragic sacrifice, we gain as a culture. We gain because we give during the darkest hours of others. And nothing, nothing, nothing can give a philanthropist more value than that. Nothing. Clear? Nothing. Listen, I hate that we need money to do what we do. I really hate it. But the reality is that we do. The breadth and scope of this work can't happen without financial resources. And what we do with our resources has changed lives and aided families.

We have countless binders with handwritten letters and cards from people around the world:

"Thank you for saving my life!"

"You helped our family stay together through our child's death, thank you!"

"We don't know where we'd be without the MISS Foundation."

"When others shunned us, you were there."

"We cannot express our gratitude enough."

"Seriously... you saved us... thank you."

"The help I got from you was help I could not find anywhere. 
I was headed down a path of self-destruction... now I have my life back."

Still, talking about the death of a child and a philanthropist's association with this organization takes courage, and lots of it to support us not only financially but also philosophically. Did you hear? The great NASCAR driver will be proudly wearing our logo on his helmet at a race. That's the epitome of cool.  You see, those who have turned us down don't get it. They'd rather be involved with fixing- curing - preventing. All fine and good. And there are so many worthwhile charities which do that. Death just doesn't give them that warm, fuzzy feeling. And of course, they must then confront the reality that their own child may die. Awful, I know.

But guess what? Through history and in perpetuity, a percentage of babies and children die before their parents. We cannot eradicate death, we will not - ever- cure all children from every disease. When we find a cure for X disease, another will supplant it.  Y disease? Same thing. So some children will always precede their parents in death, tragically. And what about those families who don't get a 'miracle' or a 'cure' or just good damn luck? Do we forget and discard them and let them figure out how to navigate a child's death on their own? Nope. We don't.  When the worse possible thing happens in a family, sexy or not, the MISS Foundation is there. Nothing- not homelessness, hunger, joblessness, or disability- can tear a person apart the way a child's death can. Nothing is sadder than this.

And so this work is worthy of recognition, support, and funding so that we can continue to help these families.

Ironically, a fantastic and one-of-a-kind dog toy company in Golden, Colorado, KONG has been one of our sole and very consistent donors. 

Another nonprofit in memory of a spicy little monkey, the Ronan Thompson Foundation, has also helped us immensely. 

And, today, a compassionate family man and NASCAR driver, Jimmie Johnson, stepped up to help where many others have not. And I am personally and professionally grateful beyond words.

So to Jimmie Johnson and his family, I pause- look into your eyes- and bow deeply and slowly for the heroic generosity which will help us continue our valuable work. Really, thank you, on behalf of so many very sad families who have had to say farewell to their beloved babies and children.

And to Brianna- we remember and honor you today. Your life matters, now, then, always.

Special thank you to all the families whose $5, $10, $20, $50, 
and $100 donations have, through the 17 years of our existence, sustained us. 

Tuesday, May 7, 2013

(Grieving) Mother's Day Manifesto

Because being a bereaved mom is the hardest job of all.
 I wish you all a tender, beautiful Mother's Day filled with love and support.

Friday, May 3, 2013

In Not-So-Loving Memory of the DSM5

The American Psychiatric Associations's soon-to-be-released 5th iteration of the DSM was dealt a fatal blow today by the federal research agency, the National Institute of Mental Health (NIMH).

The agency's director, Tom Insel, announced it's plan to abandon the manual in its future research endeavors, noting it's "weakness is the lack of validity." Thus, the NIMH will be "re-orienting its research away from DSM categories," said Insel.

News has hit the public hard as, just prior to its demise, many esteemed researchers, clinicians, professional organizations, and members of the public rallied to oppose the manuals extreme medicalization of normal human conditions. Several boycotts have already been organized by the American Psychological Association, the Committee to Boycott the DSM5, and grassroots organizations like the MISS Foundation which have a vested interest in ensuring that bereaved parents are not affected by the too-common, over-ambitious diagnoses of mental illness and inappropriate medical intervention for normal grief.

Indeed, Insel is right. Field tests revealed very poor outcomes for the DSM5 in many categories including Major Depressive Disorder (MDD), often mistakenly treated in the bereaved parent population because of common markers which render distinguishing parents' normal enduring and painful grief from MDD a challenge, even for the most experienced clinician.

In fact, particularly in the case of child death, providers are more likely to avoid grieving parents and also experience their own psychological discomfort and vulnerability, further risking a misdiagnosis (Ah, death anxiety and denial of death (thank you Ernest Becker) are alive and well in 21st century America).

Some supporters who are particularly attached to the DSM5 may experience denial, shame, and protracted mourning for the much-revered manual (no worries, there's a pill for that). However, many of us only mourn momentarily and then we will pick ourselves up by our bootstraps and move on with our lives. Just give us two weeks, tops, to get over the loss. We won't ruminate on what we could've done differently to save the DSM5. We won't harbor guilt or shame or self-blame. Our eating and sleeping patterns won't change much in the aftermath of its demise. We won't withdraw socially or ruminate, and we won't feel worthless. No, we will celebrate a life well-lived and bow our heads as we say farewell.

Now, let's hope, in an attempt to find a new object of affection, we don't replace the former love with a new love prematurely in an attempt to fill the empty hole. And let's hope that we don't repeat the same egregious mistakes with the next trend in nosological systems. Let's hope that we can exercise some self-control and not collude with powerful corporations to create illnesses which either do not exist or wherein the 'treatment' is far worse than the purported psychological or behavioral concern.  We need not go down that path again.

We have a long way to go in the way we care for humans in suffering- a very long way to go. But we move mountains one stone - or in the case of the DSM5, one boulder - at a time. While I know that final disposition will be prolonged (this really is an historical moment), I know we are making the right choice to bid the manual adieu.

I, for one, will sleep better tonight knowing the DSM5 is well on its way to the other side.


"Empathy can cause revolution... a revolution in human relationships."

"Highly empathic people get beyond the labels."

Now that's my kinda revolution!


Note to clinicians: Do not buy the DSM5. You need not spend the hundreds of dollars it will cost on what will soon be an irrelevant book.


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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