What the sixteen-year-old brother reveals about grief, loss and his missing sister...

Written by Carver Bain, age sixteen, on the reflection of the death of his sister ten years ago.

Deaf Five-Year-Old Ears

I think I knew that something was wrong when I woke up to familiar but unexpected faces. Doubtless I was glad that my best friend Will had shown up unexpectedly with his mom, yet it was the tone of his mother’s voice and the absence of my parents that clued me in that something was going on.

At the age of five, I had a two-year-old sister and another sibling on the way; as I recall I was not pleased when I discovered that the incoming child was to be another girl. Everything was normal and good. I was as content with my life as any five-year-old could claim to be content with anything. I cannot speak for my parents, for adults tend to put on masks in front of children, but it can’t be too much of a stretch to say they were happy, preparing for the arrival of their new daughter.

Why is that always when things go terribly awry?

It started the day I awoke to my best friend and his mother. I asked Angie, Will’s mother, where my parents were. I cannot remember how blunt she was about the malign shroud that had enveloped our house the previous night, but I at least gleaned from her that my mother was in the hospital, and my father had gone with her; I don’t know whether I knew it was because of the baby.

Whether this news was particularly jarring to my five-year-old ears or not, I do not remember.

Regardless of how I felt, it wasn’t long before I went to visit my parents in the hospital.

My mother lay in her bed, draped in hospital sheets; my father sat beside her, eyes weighed down by exhaustion, worry, and desperation. As with all hospitals, there was a thick film that permeated the room, dampening the fluorescent lights and wilting the plastic flowers outside the door, and everything was gray.

I won’t ennoble death by giving it any sort of magnificent description or detail.

She died on May 29th. She was born on June 1st.

People seem to cluster death and black together, but I think gray is a far more fitting candidate.

They gathered like flies to a light, the family and friends, with their “I’m sorrys,” and, “I understands.” These empty comforts slammed into my parents like a waterfall, and dripped off them like tar.

I did little to support my parents through the stillbirth, as I don’t think I fully understood what had happened. I waited in rooms with televisions. I visited my mother. The adults adorned their masks and reassured me everything was fine. Someone gave me a Batmobile. That was exciting. I’m pretty sure I knew what was going on in a very basic way, but the implications and the impact of the event fell on deaf ears. Deaf five-year-old ears.

I remember being there when she was born, the sister I would never learn to begrudgingly love, or inspire with my older-sibling-perfection, or see with flush, rosy, life-filled cheeks. I just wanted to see her. They asked if I wanted to hold her. I did.

I said no.

“We named her Grace,” my dad told me outside the hospital while we waited for my mother to come out. Grace Susie Bain, he said. As we sat there, freezing in June, I imagine you could see the ripples of cold steam rising off of us, under the hot sun. My dad hugged me closer, warming me, or perhaps I was warming him.

The toll this event took on my parents is at a level I hope I won’t ever fully understand. When they didn’t think I could hear them, they would take off their masks and be sad and cry and even yell. I could sense a heavy sheet, stitched with iron that had drifted down to enfold our household, and the walls slowly beginning to crack.

It went like this for some time. But as time tends to want to do, it kept on, rolling through days, then weeks, then months, then years. But despite the dullness that time brings with it, ten years later Grace never left. Though strange it might seem, being that she never arrived, she is still here.

My mother would tell me that it was a gift. That God works in strange ways. (This God I keep hearing about does seem to work in the most—eccentric—ways.) She would say that if it had not been for Grace’s preemptive tip of the hat and slam of the door, our lives would be very different. My now seven-year-old brother probably would never have been born, maybe we wouldn’t have been able to feed another mouth at that time, and maybe if she hadn’t died my mother would have. Maybe, maybe, maybe.

Maybe.

All this can be boiled down to, we just don’t know and there’s nothing we can do about it anyway, so quit your blubbering and move on. But humanity demands a little blubbering, which is just fine.

I will never know Grace. Of course this still saddens me, even more so than it did ten years ago, but if I were to walk around my house right now and talk with my parents and my sister, I wouldn’t see any negative consequences. What I would see is my little brother, and my dad cracking a joke, and my mom rolling her eyes, and all because—and in spite of—Grace’s death. Good and bad are far too black and white for something like this, and Grace found life in that gray area.

Testimony to the Washington State House Health Care & Wellness Committee on Friday, November 22, 2013, 1:30 p.m.

Working Session: Birth Defects, Premature Birth, and Stillbirth.

Testimony on TVW in the Archives. 

Madam Chair and members of the committee, Thank you for allowing me to speak today as a mother and a MISS Foundation Facilitator about how stillbirth has affected so many of our lives. I flew over from Spokane, Washington solely for this working session. The MISS Foundation is an international organization dedicated to providing support and advocacy for families after the death of a child from any cause.


• Ten years ago, I was eight months pregnant with my third child when I didn't feel her moving. My worst fears were confirmed a few hours later.
• My daughter Grace died on May 29, 2003.
• She was born on June 1, 2003.
• After my daughter died, I experienced a level of trauma that I was unprepared for: loneliness and isolation, prolonged depression, PTSD, disenfranchisement from my family and friends, marital problems, problems at work, prolonged health issues, financial difficulties and the list goes on.
• I was required to file a death certificate, but I was not given a birth certificate. To say Grace died but was never born was a contradiction around which I could not wrap my mind or heart.
• When I was five years old, my father died of cancer. I am here today in part because we never spoke about his death when I was growing up. The affect of that silence has been palpable on my life. Ten minutes after I found out Grace died, I turned to my husband and said, “Her life cannot remain silent. Something good must come from all of this.”
• Two days after Grace was born, my grandmother, 91 years old at the time, called me and said, “My first child, a son, was stillborn in 1934. I never forgot him though I felt I could never speak about him. I didn’t even get to go to his funeral. You will never forget her.”
• While some things about stillbirth have changed in those 70 plus years since my own grandmother delivered her son, there is much to do around this often-taboo topic. So much so that the prestigious medical journal the Lancet dedicated an entire series to stillbirth, putting out a public health warning and a call for more research and improved public policies which support grieving parents.
• My 16-year-old son, Carver, who has worked with Rep. Riccelli in the the YMCA youth legislator recently wrote a reflective essay for an English assignment. Reflecting on the time when he was five years old, he wrote: “The toll this event took on my parents is at a level I hope I won’t ever fully understand. When they didn’t think I could hear them, they would take off their masks and be sad and cry and even yell. I could sense a heavy sheet, stitched with iron that had drifted down to enfold our household, and the walls slowly beginning to crack.” I hope you will take time to read the essay in full. It is a reflection on how this affects so many families in Washington State and in particular our own.
• One in 110 births in this country result in stillbirth—10 times more common than SIDS, yet SIDS is a continual public health conversation while stillbirth struggles to find space among policy makers, clinicians and society in general.
• I facilitate a support group in Eastern Washington through the MISS Foundation for bereaved parents. A new mother recently shared her story: When her son Michael was stillborn, she immediately asked the doctor if it was a cord accident because she’d had a dream about that during her pregnancy. He said no, definitely not. However, when she received her son’s death certificate, despite the coroner’s finding of no cause of death, the doctor listed cord accident as cause of death. When she investigated this further, she discovered that the doctor didn’t want to list unknown. The impact of these words on her son’s death certificate has been traumatic for the parents. And the fact that their trauma is increased by a professional who should have known better is unconscionable.
• We need to continue to explore policy changes, education, research and advocacy to give voice to our grief that is often misunderstood and marginalized.
• My daughter was born dead, but her voice rises up inside of me and deserves to be heard on behalf of our family and on behalf of all the infants born too soon and too still.

Thank you. 

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.