The things you aren't supposed to say out loud...

My husband has been writing lately about things that people have said that bug him, and it has me thinking a lot. Of course I’ve written about the top things that should never be said to a grieving parent and the stupid things people say and all the other things that bug me, but the thing that bothers me the most, that hurts the most, is probably the most controversial and misunderstood thing out there that no one wants much to talk about or think about and read about and so, well, let me just say it out loud:

A stillbirth is NOT a miscarriage, and a miscarriage is not a stillbirth.

A stillbirth is NOT a pregnancy loss.

A stillbirth is a dead child.

Period.

Now we could turn this into a political argument by left and right-wingers all day long. We could say technically in most states, a stillbirth is a child born twenty weeks or later and a miscarriage is 19 weeks or earlier. We can talk all day long about women’s rights and who’s on first and what’s on second but that’s not at all what this is about.

This is about babies dying and parents grieving, and people who want to compare that grief of a dead child to the grief of a miscarriage—and it is NOT the same.

I’m not saying miscarriages aren’t painful, horrible, undoing griefs. I’m not saying that we don’t grieve when we have them. I’ve had one. I had a miscarriage. I know what it feels like. I know how much it sucks. But no matter how much it sucks, it was not my dead child held in my arms after my stillbirth.

I’m not here to argue that moms and dads who delivered their baby at 16 or 17 weeks and held them in their arms aren’t parents. If you held your baby in your arms and you named your baby, then go ahead and tell me about it and let me grieve with you and let us talk about the child who died. I don’t care about weeks defining a stillbirth versus a miscarriage. And if you have a miscarriage, I will still show compassion and understanding, and I will long with you. I will share your grief. 

But, what I do care about is when someone asks me how old my child was when she died, and when I say “at birth” (because honestly when I say 33 weeks the look is even worse), I get that look of “oh” that look of “loss of potential” that look like “oh, well, at least she wasn’t a child.”

What the fuck? I hate that look and that inference. 

What I care about is when people refer to Grace’s death as a “late miscarriage” or a “miscarriage” or a “loss.” She was none of those things. She was a child that died.

Miscarriage and stillbirth are not the same thing.

I hate it when people post things on my Facebook page about miscarriage or people send me articles about miscarriage implying with that quiet gesture that Grace was a miscarriage, a mistake, somehow avoiding the reality that a child died.

My child was NOT a miscarriage. Got it?

My child was a baby who died for no good reason. Who was the perfect weight and height and size for her 33 weeks (and if you want to be really technical then 32 weeks and 5 or 6 days), who could have survived outside my body had she not stopped breathing inside my body. Why she stopped breathing, I’ll never know.

But I do know that holding her in my arms, her four pounds feeling like 100 pounds was a completely different experience than feeling blood run down my legs, watching my underwear and clothing become soiled, running to the emergency rooms as clots fell out of my body and watching that give way to intense cramping and pain and heartache. But it was different.

And that was a miscarriage NOT my dead child.

And those are two entirely different kinds of grief.

So if you want to sympathize with mothers and fathers who have experienced stillbirth, never refer to their child as a miscarriage. It does a disservice to the grieving parents of both.

Language matters. A great deal.

Even Wikipedia backs me up on this one when defining stillbirth, “…and the word miscarriage is often used incorrectly to describe stillbirths.”

So stop it, okay? It’s not the same.

And to a mother and a father whose experienced one or another or both, it matters. It matters a great deal.

It matters to me.

It matters to my Grace.

It matters.

This little light of mine...

Sacred Heart Memorial Service, Saturday, October 19th, 2 p.m. 

What I spoke:

If I’m going to be wholly honest, I will say this: none of us wants to be in this room today.

Each of you should be at home, holding your baby, feeding your baby, feeling inextricably overwhelmed by joy instead of grief.

And…we are here.

When your baby dies, your world collapses. I remember. I remember the overwhelming sadness, the inadequacy of the responses from the doctors and nurses. The question ‘why?’ hanging in the room. And the answers always failing in some way.

I wish that I could hand you a formula for healing, a 12-step program, a guide through the overwhelming ebb and flow of emotions, but the truth is that we all fall incredibly short at offering one another solace because we will never truly walk in each other’s shoes. Even the death of my own daughter pales in comparison to your child’s death because your child is your own. And each of us has to own our terrible griefs in our own way. And I recognize how counterintuitive that seems—to in a sense embrace our grief with some kind of energy especially when our energy seems to be failing us.

There is a song from my childhood Sunday school classes that I remember well and it goes something like this:

This little light of mine, I’m gonna let it shine, this little light of mine, I’m gonna let it shine.

Hide it under a bushel, no! I’m gonna let it shine. Hide it under a bushel, no! I’m gonna let it shine.

It is a small light I hold—one that sometimes teeters on the verge of being extinguished, but I have to believe that this little light of mine, this daughter we named Grace, no matter how small a light, still shines inside of me, still guides me through those occasional moments of teetering.

And I have to believe that simply by seeing each one of you here today, you are doing what you need to be doing. Because each of us, having seen our children die has gotten out of bed today, taken a shower, dressed, brushed our teeth and hair, put on shoes and walked out the door and into our cars to drive here.

And however small that might seem, it is some kind of light.

Infant and Child Death Awareness Life...

Here's the thing. It's October. October is Infant & Child Death Awareness Month. I get it. I get that we need a month. But here's the other thing...My life is Infant and Child Death Awareness Life. There isn't a day when I'm not thinking about it. There are moments certainly, and hours, but even during those times my body is keenly and highly aware. It screams out even though you cannot see it screaming that it is Infant and Child Death Awareness Life! I know it...

These past few years with Facebook so prominent in all of our lives, we tag each other, virtual hugs, virtual memories, virtual reminders that we are not alone. We tag each other in our pictures and in our memories and on each other's pages and it makes me feel like someone, somewhere remembers and that makes me feel so loved.

And yet, this year, this day, this month, I find myself afraid to tag anyone. Why? Because I know too many mamas and papas without. I know too many children who have left this earth too soon. And I am worried I will forget. And forgetting, I also remember, hurts the most from the ones you thought loved you the most.

I do not want to forget anyone's child. I worry all the time about forgetting someone's child, someone's anniversary, someone's birthday, someone's day they found out, someone's day they had hope and then lost their hope, the day they brought their child home from the hospital, the day the knock came on the front door, the day the telephone rang with a different ring than it had ever rung before, the day the tubes were put in, the day the tubes were taken out, the day the crash happened, the day the shot rang out, the day the technician put the gel on the tummy and looked into my eyes and told me, the last day the child crossed the street, the last time he got on a motorcycle, the first day the doctor said "I think something is wrong," the first day the doctor said, "I think she'll be okay," the last day the doctor said, "I'm sorry," the last day they ran out the door together to go to the jewelry shop, the last day she got into the car with her best friend, the last time he was buckled into his car seat with his mom driving the car, the day he forgot to take her out of the car, the day the television fell on her, the day she was shot through the head, the day he was shot in the desert, the last day he got into the car, the last day she got into the car, the last day he came home with his mom and dad from the hospital, the last day....

I am terrified of forgetting each and every day of all of these children's beautiful lives, and still I know there has been a day when I haven't gone online, the day I didn't see someone's page, the day I forgot and for all of those days I am so so sorry. So for today I remember and hold all your children, each and everyone one of them and I hold them all because of my own child and this is in fact perhaps Grace's greatest gift: that I can remain in the company of so many beautiful children gone too soon. And this is never ever gift enough but it is something and it is beautiful and I remember you and him and her and all of them and I will never ever forget.

KA-POW...

I find myself staring toward the window to see if she might peer out

My 12-year-old daughter has a t-shirt that says POW! You know the kind...the cartoon POW inside some version of a star that they use in comic strips or in movies. She loves Spiderman right now and all things that reflect some sort of cartoon version of it so she likes to wear the shirt, a lot.


Today was the first day of school, and just like that, in the midst of the excitement, the taking pictures, the nervousness of starting middle school/seventh grade (the 12-year-old), the ambivalence of going back to high school for the sophomore year (the 16-year-old), and the sheer joy of the new elementary school and the beauty of the new building (the 7-year-old), it hit me:

KA-POW!!!!

Grace is still missing. Grace is still gone. Grace will not be entering fifth grade this year.

KA-POW!!!!

And just like that, my eyes start to water and my mind starts racing and I'm standing in the hallway talking to other moms with the seven-year-old nearby, and inside my head I'm screaming, no no no no no no no. Don't you DARE start falling now tears. Don't you DARE take this moment of joy, of elation for my children starting school! DON'T. YOU. DARE!!!!

KA-POW!!!!

And I do my best all day to hold back the tears because you know, well, you understand, no one wants to really see this grief in the midst of all this excitement. No one wants to see the anguish on a mother's face on the first day of school. Who knows? Maybe my tears will just make someone else start crying and who wants to be responsible for that?

KA-POW!!!!

I read a quote today that a friend posted on her Facebook page, and it was one of those quotes that made a KA-POW sound inside my body when I read it:

"Grief is subversive, undermining the quiet agreement to behave and be in control of our emotions. It is an act of protest that declares our refusal to live numb and small. There is something feral about grief, something essentially outside the ordained and sanctioned behaviors of our culture. Because of that, grief is necessary to the vitality of the soul. Contrary to our fears, grief is suffused with life force."           --Francis Weller, Entering the Healing Ground

Yes, yes I shout to myself as I read it. That's it. It is both feral and vital to the soul.

Here's the thing: My children are growing. They are lovely human beings falling into themselves as they have fallen slowly (though it seems ever so quickly) out of my arms. And the more they grow, the more I fall deeply in love with them. And this, THIS is why today hurt so much: because the more I get to know and love my living children, the farther away from Grace I fall, the greater the distance between her death and all these other children growing up becomes. And the greater that distance, the deeper the chasm.

This is why grief doesn't end. This is why grief after all these years can arrive so intensely, so powerfully, so present on an ordinary day when I just wasn't expecting it, wasn't planning for it, didn't store up enough time in my day to have it side swipe me like that. 

KA-POW!!!!

And here's the convoluted juxtaposition of all of this: This feeling, this grief does not take away the moments I share with my living children. The more this grief hurts, the more I fall deeply in love with my other three walking hearts. And the more I fall in love with them, the more this grief hurts. And herein lies the madness of it all--for it is a kind of madness. My grief and my love are so inextricably linked that sometimes it still, after all these years, makes it hard to breath.

I am in awe of the power of grief.
I am in awe of the power of love.

KA-POW!!!!

Light at the end of the summertime grief tunnel

Summertime grief looks different to me than spring grief. Summertime grief is my sabbatical, my respite from most things grief-filled. It is my light at the end of the tunnel.

I took the picture above about three weeks ago, during a writer's retreat—eight bliss-filled days at Fort Worden Park in Port Townsend. Eight days of reading, writing and critiquing other writer's work. Eight days on the Sound with the blue water stretched out before me on the bluff and this photograph at Artillery Hill in Fort Worden.

Eight days to reflect, to revise, to create, to explore.

Inevitably my writing turns to grief. Whether it’s the grief for my daughter, the grief for my father or the two of them together inextricably linked no matter how different each of the griefs actually are.

My childhood grief was of a different sort. My childhood grief began on a dark late January day when my father died. It began with a complicated, misunderstood, misdirected kind of grief that was hardly understood or explored in the 1980s when people still died mostly in hospitals, often alone, and children were discouraged from going to them even for daytime visitations. It occurred during a time in my childhood when I wasn’t equipped with the right kind of questions, and no one was encouraged to otherwise explore alternative methods for dealing with a young child’s grief.

So that grief of my childhood was mostly unexplored, under-developed, uninformed.

Then Grace died thirty years later. And the only thing I was certain about was that our family would not grieve in the same manner of my childhood. Grief would not be hidden. Grief would not be tucked away. Grief would not be buried with our daughter.

Instead, grief was and is out on the table—raw, changing, and filled with surprises of its own.

Now, ten years later, most of my writing around Grace’s grief takes place in the months of May and June. Most of my writing around Grace’s grief takes place in the lonely nights and early mornings of my ruminations.

Then, just like that, sometime in early June, it disappears again, tucked away to shift and lean toward something new that arises the following year.

In the early days, grief was raw even in the summer months. Grief was building toward the due date, when the real birth was supposed to happen in July. And so the month of June was counting weeks until the due date.

But in the later years, grief no longer presents itself the same way. Grief melts back into my bones and tucks itself away—far enough that most people hardly notice, but close enough that when I wake up each morning, Grace still presents herself to me in ways that are surprising.

Grief in the summertime is closer, more intimate, more private.

Grief in the summertime provides me the space to write about and explore other topics.

Grief in the summertime allows me to breathe. And sometimes in those breaths, other surprising kinds of feelings emerge.

And once again, I am changed by all things Grace. 

A love letter

Grace,

If I could sing a song to bring you back, I would.

If I could cry a river to float on and find you, I would.

If I could tie a rope onto a tree and swing into the heavens and find you, I would.
If I could connect the umbilical cord back to your belly, and breathe life back into you, I would.
If I could walk barefoot through the streets, across mountains and into the deserts to find you, I would.
If I could stand in the midst of a tornado to be carried and tossed back out to find you, I would.
If I could swim into the ocean, beyond the waves and toward its center to find you, I would.
If I could dive to the bottom of the ocean floor to pick you up again, I would. 

You are my child.

You are my love.
You are my heart.

You are the missing piece in these three walking hearts.

You are the crack in my being.
You are the hole in my heart.
You are the catch in my breath.
You are the tears in my eyes.
You are the empty place inside of me.
You are the air in the photographs between the second and fourth.
You are the box in the closet collecting dust and holding memories.
You are the name on my lips as I fall asleep and as I rise.

You are the cheeks of Carver, the eyes of Sophia and the chin of Sawyer.

You are missing.

You are the song without its refrain
The book without its epilogue
The river without its lake
The poem without an end

The rest of my days, I will look for you in the gestures of your sister, the sighs of your brothers, and the catch in your father's voice.

The rest of my days, I will love and I will weep and I will sing until my song brings me back to you again.

What death feels like when you are alive...

What death feels like when you are alive is big darkness, a hole so black that even sitting in a planetarium watching a movie about black holes isn't terrifying.

I am not talking about the kind of death where you imagine your own. That kind of death can seem welcoming, refreshing and even holy perhaps.

I am talking about the kind of death when your child dies, before you, making the world into a nonsensical one, twisting words and spitting them back at you in ways that never make sense again.

If I were to write her obituary again, it would say this:

Grace Susie Bain
died on May 29th, 2003
born on June 1st, 2003

And since that time, no language has ever made sense.

That's what death feels like. Language flipped onto its back, ripped out from underneath you so that cards arrive in the mail with sayings like:

"There are no words."
"I will be praying for you."
"God's will is hard to understand."

I don't know about you, but the God I know does not kill babies. The God I know when I cried out in the middle of the night at 3 am with blood all over my sheets, with a kind of silent scream so loud that my cry echoed through the hallways and into the night sky, falling deep into black silent holes, that God, that One that appeared in my hospital bed, He showed up with his hands, these large, gentle hands cupped together to hold me as I contemplated ripping out my IV, tearing out my eyes, jumping out of the three-story window. He just sat there on the bed with me, his hands holding onto my entire body as I felt a single tear fall from His eye, as I shook, my large belly filled with death and empty at the same time. He sat there and said nothing.

And I cursed the night sky, I cursed my failed body, I swore against the injustices of the world and I swore at God, the same one who ripped my father from me when I was five years old. And He just sat there bewildered with me while I screamed obscenities into my pillow and my husband and two-year-old daughter and five-year-old son all slept together wrapped up in a king-sized bed three miles from the hospital.

I do not know what death feels like to anyone else, but this death I felt, this kind of death is the kind that cracks open your heart, sucks out your soul and spits you back out spent and confused. And you stay like that for a very long time. A time so long that if someone were to have told me that, I might have jumped that night. But these are the kind of things you don't want to speak out loud.

There are no words for any kind of death. And still we try to write them. I try to write them.

So that every day, when I sit down to an empty page, the first word that appears in my head is death. Then love. Then grief.

And everything else that follows is something for which my hands are just a vessel.

How I own my grief...

1. Write about it. Write about every curve, intonation, juxtaposition, curl of the lip, gut-punch in the stomach, facial expression, door slamming shut, every feeling that happens because of the door slamming shut, eyes burning, just write and write some more.

2. Say Grace out loud as often as I can.

3. Connect Grace to my father, my father to Grace and then connect them again.

4. When people ask how many children I have, say four! Four. And mean it.

5. In the same way that I own my joy. Live it every day. Grief and joy side by side.

6. Connect my five-year-old self when my own father died to my son who was five when his sister died.

7. When people ask how old my children are, tell them. And every year increase their age by one, except for Grace's in which you respond dead every time and never change your answer. Dead.

8. Remember when your grandmother told you that she never for one moment forgot her first born son who died, and that she was afraid to talk about him out loud because she was supposed to "get over it." Never get over Grace. Remember your grandmother each time because you miss her too.

9. Remember that the depth of your grief is equal to the depth of your love and no less. No. Less.

10. Forget about the stupid people and how they still say stupid things once in a while. If you are feeling especially gracious, say a prayer for them. But don't be hard on yourself if you don't.

11. When someone brings up "God" and "Grace" in the same sentence, put up all your protective walls. Remember they mean well, but it never comes out sounding that way. God does not kill babies.

12. Be with my other children, fully present, and teach them kindness, empathy, compassion and love. Because nothing else matters. Love just love.

13. Sometimes by crying, but rarely in front of anyone else, and mostly by myself in the car while driving. Sometimes, late at night when everyone else is asleep.

14. Sometimes by simply feeling like the loneliest person in the world.

15. By listening to other people's stories and grief and giving them a safe place to say the darkest things.

16. Once in a great while still, not wanting to hold someone else's baby. Very rarely. But still sometimes, it stings too much.

17. By remembering every day, I am alive, and Grace is not. And being okay with both things some of the time. And some of the time, not being okay with it at all and wanting to throw yourself down on the ground and kick and scream.

18. Each May, each May succumbing to my body's own darkness and sitting with it and still learning to be okay with it.

19. By shouting expletives and saying them under my breath too.

20.  Say Grace out loud as often as I can.

Do I stay in this recurring dream...

I am torn. I do not dream about Grace. It is one of my failings that bothers me most in these later years. No matter how much I try to conjure them up on my own (and I do try), I do not dream about her. I envy people who dream about their children. I have found from the many families I've met over the years, that some people dream often and many not at all. So once again, I am not alone. I am never alone.

And still. Still, I envy the dreamers.

So last night, when I dreamed about Grace, when I knew I was dreaming about Grace, I was torn. Do I stay in this recurring dream that keeps happening over and over again or do I leave it? 

A few months ago I was intrigued by a podcast I heard about Lucid Dreaming so I did what I do and I went a bought and read a book about it: Exploring the World of Lucid Dreaming. And much to my questioning mind's eye, it worked. With a few nights of practice, I could remain in my dreams with just a few tweaks in the moment.

So last night when Grace appeared in my dreams, when my body was re-living her birth and death over and over again in my dream, I asked myself this question: Do I stay in this dream or do I leave? I was there with Grace. I could see her and touch her and hold her and feel her. I could feel her in my body and then out. 

The problem of course is that this dream was filled with so much trauma. I kept waking up and falling asleep and giving birth over and over again to my dead child. In this dream, I could feel my body splitting open and pushing her out and my breasts filling up with milk that would first turn painful and then turn red and then turn dry. I could feel her head crowning and myself pulling her back in just one more moment before my body did what it did and before she came sliding out, Grace and I still connected with an umbilical cord whose jobs of providing nutrients and oxygen was no longer needed.

This dream came at me in waves over and over again, the pushing and sliding out and there she was in my arms again and again and again.

And throughout the night as I lay there dreaming, and still lucid and still wondering if I should end these dreams or stay in them, I remember thinking Here she is. Here she is.

I'm  certain you know what I chose. Because dead or alive, I would if I could choose my child over this absence. I would choose to have this dream every night, no matter how worn I feel the next day because Grace was present and I was holding her and I could feel her and she was here among us.

Everything that you expect to happen, happened next. I woke extremely early in the morning, exhausted, spent and sad beyond words, beyond senses. Sad. 

But then I realized the gift in all of this. In the ten years compressed into one night, taking time and bending it in ways I didn't know was possible. Giving me another moment with Grace, suspended in dream-like fashion, to hold her, to be a mother again to her, to whisper things into her ear that only a mother and daughter share, to be her mother. 

And the question of staying or leaving my dream need never be asked again. 

I grieve because I love...

One of the most complicated relationships between humans is the mother-child relationship, and if I'm being wholly honest, the mother-daughter relationship must rank among one of the most complex. We place on our daughters unfulfilled expectations, complex issues that we ourselves wish that we understood better. We worry about how they will be treated, how they will fare without us. We worry if we did enough. We worry when they bleed. We worry when they arrive too soon at bleeding and how do we teach them that delicate balance between being a woman and holding onto their childhood. We want them to be like us and nothing at all like us. We want them to be strong. We want them to understand their weaknesses. We want them to find careers that they love. We want them to love being a mother as much as we do. We want everything for them and nothing at all but what they themselves believe to be love and truth.

We worry.

And so when a daughter dies before all of this happens, then the mother wanders in a desert without direction.

There are so many firsts that never happen, so many seconds and thirds. There are no first kisses to worry about. There are no tampons to buy. There is no hair to braid. There are no late night conversations into the night about what in the world the boy-toy band One Direction might actually be announcing.

There is in all of this the pull of the umbilical cord, the line that first connected mother to child that is still there in the invisible dark and the tug is ever present.

Add to that mix a complicated relationship with your own mother (okay, let's be honest what mother-daughter relationship isn't complicated) and then you mix in guilt and frustration and confusing and panic into all the rest.

Yes, yes, there are other children. Yes, yes there is another daughter. But this missing daughter, the one who fails to show up for the pictures so that you notice the distinct space--head and shoulders between the youngest and the middle child. Why does this picture look still unfinished? Yes, the picture always looks unfinished, as if something has been erased, someone is absent.

Recently someone implied that I spend a lot of time writing about the absent child and not so much about the present children.

I am sure that many others are thinking this same thing. I am sure the unspoken thoughts of many would cut immeasurably into a grieving mother's heart. You know who you are.

But here is the thing. My other children, the ones I see every day, the ones I speak to every day, the ones I hug and kiss and talk to and have conversations with, they are fully present human beings, engaged in their lives, their own lives and don't necessarily want me talking or writing much about them. They are living the lives that they are designing with us by their side. They have voices and speak a similar language as the rest of us. They are alive. Did I mention that?

But this silent one, I'm her only voice, I'm the only one who can keep her voice fresh and present. And believe me, her presence is immutable. I can pretend to forgot (oh, but who would?) I can place her in the recesses of my mind, but that does nothing except bring her closer to the forefront of my mind.

This silent one? She is ever-present. She speaks in ways that I am willing to share bits and pieces of because she cannot do it for herself. Other bits and pieces I cling to on my own in the dark.

"(i do not know what it is about you that closes and opens;only something in me understands the voice of your eyes is deeper than all roses) nobody,not even the rain,has such small hands." -ee cummings

...not even the rain...

Indeed.

I do not pretend to have any answers or any wisdom around the right way to grieve.

For me, I grieve the only way I can: Wholly present and honestly. I grieve because I have no other choice.

I grieve because I love.

And I wouldn't give up my love for anything.