here (again)

Twice-bereaved mother Gretchen, of Lost: Boys and Bearings, is our guest writer today.  After her first son B.W. was stillborn in 2006, life was shattered and then slowly and arduously rebuilt.  In January of 2014, Gretchen's third son Zachary was born prematurely but almost fully expected to survive and thrive.  On Zachary's eighth day of life, he contracted a bacterial infection in the NICU environment.  At fourteen days old, after suffering tremendously and having graced his family with more love than they ever imagined, Zachary died. It is our distinct pleasure to have Gretchen writing at Glow today.

It is strange and surreal and brutal to be here again. Now, after having lost our son Zachary, on top of having lost our son B.W. more than seven years previous, here is at once eerily familiar and completely foreign.  

I remember this flavor of devastation so intimately. The raw, desperate longing for my son. The instantaneous shattering of all that was, of long-held, treasured beliefs, of an entire imagined future. The unmistakable reinforcement that the universe will dole out some horrific shit, with no regard for merit or implication. The deep, aching sorrow, the guilt, the anger, the inability to make sense of any of it. And over the course of several years, the clawing back, the attempt to create a new meaningful life despite the tremendous and permanent loss.      

At the same time, I don’t recognize at all where I am now. In the aftermath of watching Zachary unexpectedly suffer and die, the devastation on top of seven-year-old, scabbed-over devastation, the absurdity of what I’m living now, is a nearly indescribable low. Two of my three children are dead.  Just as I had learned to really embrace life again, Zachary died. I am doubled down with grief, mocked and shamed at having hoped again. The grief work I did to assimilate B.W.’s death into my life feels absolutely irrelevant. Wasted. The patches I created and tended to in those years after B.W.’s death don’t even begin to cover the newly broken and reinjured places. 

I don’t think I can (or dare to) muster the same resilience this time, after Zachary has died. What’s the point when I fully expect to be violently pummeled again? The loss of one child felt random, but I find that I can’t relate to the concept of randomness anymore. The loss of my two children, to two completely different set of circumstances, no longer feels random. I glance around in terror now, paranoid and panicked about a target on my back or on the backs of my husband or living son.   

I can’t fathom who I am, can’t imagine what my future looks like, anymore. What I used to think of as my after—the me who emerged in the years after B.W.’s death—now looks as unfamiliar as my before looked, just one year ago when Zachary was still alive.    

*****

Every Tuesday, my living son C.T., comes home from school to report who will be the next Top Banana in his first grade class. The name is drawn randomly out of a bowl and the selected student, the Top Banana, is to prepare a poster about himself, his family, and share it with the class the following week. This is not an unfamiliar exercise for us, having participated in a variation of the idea in both kindergarten and preschool. Preparing for it has never been the effortless, mostly fun activity that I assume it is for most other kids and parents. Nonetheless, we have always found a way to incorporate B.W. into C.T.’s poster and into his somewhat rehearsed comments about his family. 

Before Zachary died, C.T. would say that there was a brother he never knew who came before him. That B.W. was a loved and cherished brother and family member, even though he was dead. He would mention one of the special things we do in B.W.’s memory each year. He would share how we light a candle for him every night at dinner. It was never easy, never painless, and always a bit anxiety-inducing for the three of us. But, each year up until this one, we walked away from the experience with a bittersweet sigh of relief, satisfied that C.T. was able to share honestly about his family, and this one sad thing in his life.

I just cannot fathom how we will do it this year when C.T. is chosen as the Top Banana. As open and innocent and curious as children tend to be, there is no way we can feasibly pretty this up for presentation. Not anymore. How will C.T. get up in front of his classmates and explain that he is now flanked by dead brothers? Only dead brothers. After watching Zachary suffer and die this year, his two week-old brother, his only living sibling, yanked from his life so cruelly—really, HOW will we paint an acceptably positive picture of this, for C.T. to share with his class? 

After Zachary died, C.T. has said how sad and angry he feels to hear his classmates talk about their living siblings. He knows what a massive mockery it is to be here, to have lost Zachary too.

Is your grief reminiscent of, or compounded by, other devastating blows in your life?  Where do you find yourself in your grief journey?  How do your living children cope, when sharing about life/family is required?  

the unrecognised life.

They shed tears for the woman describing the miscarriages which devastated her. They stand, applauding as she breaks the taboo of silence around her situation. "She is so brave," they say, talking about this. "No one used to speak of this. Nature can be so cruel".

And it is right that she speaks and right that she is heard.

***

They shed tears for the woman who laboured to bring a silent baby into the world.  They sympathise, imagining the pain without hope and the sound of silence at the final push. "So awful," they say. "I can't imagine. Lessons should be learned."

It used to be that a stillborn baby was not named, not spoken of, wrapped and taken without even time in mothering arms.

And it is right that we have changed this and the sound of silence is more readily acknowledged.

***

Hearts break for the child who left suddenly, inexplicably, horribly."I don't know how they carry on," they say. "I'm holding my child tighter tonight. I'd die if that happened to mine. How can life be so cruel?"

It is right we give our dead children a place now. It is right to see the space and honour it.

***

Then there are the heroes, the little fighters, the ones born too early or too sick, who battled on against the odds and through tenacity of spirit or luck, fought the fight and triumphed, made it home.

Their pictures, wire covered but surviving, festoon the walls of Facebook. "Such an inspiration," people say to still stunned parents. "I don't know how you did it."

It is right to have their photo on the graduation wall. Right that parents who survived the trauma can work out the pain and repackage it into a success story.

Medicine can be amazing when nature lets us down.

***

But what of me?

I did not miscarry.

He was not premature or known to be sick before his birth.

He was not stillborn.

There is no once occupied empty space inside our home.

There is NO WORD to describe us. There are no films for undiscovered damage and a baby carried to the morgue, not by midwife but by quiet faced SCBU nurse. There is no soft edged happy ending for my arms that screamed for him. He was born - and he lived (just) - and he was grabbed from me and all his days were outside of my control, more cared for by a nurse than by me, more chosen for by a doctor than by us. He died by my command and circumstance tore me from his soft and lifeless body far too soon.

Later, I had to register the birth of a boy already dead. We did the two certificates in one. How convenient.

Do you think the words "neonatal loss" do him justice? He was a person who died. He died in my arms, after 11 days of loving him, 11 days of SCBU terror, of decisions and fear and roller coaster highs and lows. But when they speak of heroes, they only speak of the ones who made it. When they speak of fighters, they don't remember the ones who fought and lost.

The lack of understanding falls in a gap between "at least you never knew him" and "thank goodness you had a little time together".

And I'm supposed to be grateful for both of those.

***

The truth is no one wants to know that a baby born safely in hospital might die anyway. No one wants to hear about dashing to SCBU and the medic-magic not working. No one wants to hear about the ones without a picture on the going home board.

I think the taboo of us - of mystifying early death inside the hospital but outside the womb - may never be broken.

And so the platitudes come and I, to be politic, suck it up and stay silent; I am the black widow at every birth story, the hovering witch shadowing every pregnancy. I am the spook and the death wish and the unspoken horror of the space between nature and medicine.

I am when everything fails. And no one wants to hear.

Do you feel you fit one of the loss pigeonholes? Or do you feel you fall between the gaps? Or is every situation so unique that in fact we are all in the gaps? Do we only see the pigeonholes that other people seem to sit in?

spring

As we ready ourselves for hibernation and winter sets in here in the Northern Hemisphere, those in the Southern half of the world have already left winter behind and are in full bloom. One such writer and babylost mama is Jo-Anne Joseph. Many of you who frequent the forums know Jo-Anne, a dedicated Glow presence and support for so many. Jo-Anne, who writes at My Little Light Zia, is a mother of 2 children, one living, one gone much too soon. Zia was born still in July 2013. Jo-Anne writes, "Everyday I miss Zia, everyday I wonder what she would be like on that day. Zia is deeply loved and I live my life in honour of her. Each day I am alive is another day her story lives, she lives." We are so pleased to have Jo-Anne as a guest writer today.

The first day of Spring brought with it an immense amount of sunshine,
A gentle breeze,
But there are still some trees, brown and empty
They stand, the sun burning into every branch
They stand after enduring the harshness of the winter
Their leaves have withered away,
They seem dreadfully alone
The spring brought with it the inflow of birds,
flying back from a long winter away
they chirp happily every morning and inhabit the other trees
building nests, making homes,
Those trees began bearing leaves again,
But there are still trees brown and completely empty,
Awaiting the rain to grant them life again
The winter cold has abandoned me
Taking coldness to another place in the world
I am in the spring with the grass which has started to green around me
The spring with winter trees still brown and dry,
With a yearning for rain which may never come
And when it does
the brownness will end,
It may flower again,
But just not now,
Not today,
Today those brown and dry trees are a reflection of me.

What season are you in? How do the seasons affect your grief?