the fourteenth again

Jen’s second daughter Anja was stillborn in January 2012. Anja has an older sister, E, and a baby brother, M. Jen wrote this on the 22-month anniversary of Anja’s death. She blogs at March is for Daffodils, where this post first appeared. We are so grateful Jen is here at Glow today as a guest writer.

This morning on the walk to kindergarten, E and I talked about how we would buy flowers after school, flowers for Anja on the 14th.

‘Anja is an angel, Mommy,’ E said, full of the authority of a nearly-five-year-old going-to-schooler.

‘Do you think so, sweetie?’ I asked, non-committally.

‘I think so. But, actually, Mommy what is an angel exactly?’

‘Well, some people believe that there is a place called Heaven, which is where you live after you die, and when you are there, you are an angel,’ I explained.

‘Do you believe that Mommy?' 

‘I believe that Anja’s spirit has gone into all the living things,’ I said. ‘I believe that she is in all the beautiful things we see around us.’ (Do I? Do I?)

E thinks about this for a while, smiling. Then she looks up at me and says, ‘Mommy, I really hope Anja is not a zombie.’

Christ, kid, what are they teaching you at school?

‘She’s not a zombie, love. I know that for sure.’

‘How do you know?’ E is genuinely worried.

‘Because zombies are just a story. Some grownups like to tell stories about things that scare them, but they’re not real.’

‘OK, Mommy.’ We hold hands and walk down the tree-lined block. At the corner, we run into a little boy from her class and his mother and baby sister. E and Z start talking excitedly to each other. For some reason, the topic of zombies comes up again, and it turns out there is some movie character(?) zombie who is funny(??) and can talk to dead people(???). E and Z start chanting, ‘I can talk to dead people. I can talk to dead people.’ Z’s mom smiles at the zaniness of children; I try not to grimace. My poor kid. She wishes she could talk to dead people; she knows death in a way that it is obvious very few of her peers do. ‘I know, Z,’ she says, ‘let’s go to a place where people get dead and we can talk to them.’ I wonder what she would say? I wonder where she thinks that place is? I wonder how her nearly-five-year-old mind reconciles the real death she has experienced and this fascination with death that so many of her friends are exploring.

We go into her classroom, hang up her coat and switch her rubber boots for indoor shoes. The classroom is cheerful and noisy; her teacher is happy to see her. Every morning, for the first fifteen minutes of the day, families are welcome to stay and participate in what the teacher calls ‘Noisy Reading.’ I love this time of day. We find a cozy spot and E picks out a book called ‘Chestnut Dreams.’ I open the book and start reading… Anya. The little girl in the book’s name is Anya and she has curly chestnut hair and green eyes and E looks at me in wonder. ‘Her name is Anya. Maybe that is my baby sister. That is what she looked like if she didn’t get dead.’ We read the story. I say the name Anya over and over and over again and it feels good. To have an excuse. To use the name without worrying that I will make someone uncomfortable, without being made to feel morbid or strange.

The special helper rings the book bell and it is time to put the books away and say goodbye. E says ‘hi’ to her friend, I, who is absorbed in saying goodbye to her mother and doesn’t respond. There is a flash of hurt in E’s eyes, but she runs over to another friend, D, and says, ‘D, do you want to sit next to me?’ D crosses her arms over her chest, her face furious, and yells in E’s face, ‘No!’ That is it for E; she comes back to me, her face crumpling and reddening. She buries her head in my lap and sobs.

And I wonder, as I always do, how much of it is what we see on the surface – rejection by friends; the start of a busy day – and how much of it is what she knows and keeps secret when she is out in her world – the death of her sister, the sadness in her family?

I offer to take her outside, for a hug and a chat, but she rallies, wants to stay and finds someone else to sit beside. She waves and smiles as M and I go.

M falls asleep in his carrier on the walk home, so I veer away toward the water, get a coffee and walk under the red and yellow trees by the seawall. The ocean is glassy, grey, still. It is a beautiful morning. I turn back up the park path toward our building. I look into the red leaves of the Japanese maple trees. I think about how I told E that her sister is in all the living things. I try to believe it. I practice: I say, tentatively, quietly, yearningly, ‘Hello, sweet girl, my love, my baby.’ I whisper it to the tree, to the sky, and finally, the tears come.

Where do you believe your baby is now? What do you want to believe?

If you have living children, how do you explain death and afterlife to your children?

Invisible Shadows

Silas’s invisible shadow leaves markers of emotion on the milestones of Zephyr’s life.  From birth to smile to first steps to sentences, I revel in Zeph’s vibrant growth overflowing with life, yet I feel the silent echo of our lost son’s nonexistent experiences reverberating through the house, Lu’s eyes, my soul.

Everyone sees Zeph as an only child.  That’s what he is in every obvious way.  But I cannot help wondering how different his life and personality would have been if Silas were here as his older brother.  That it is impossible to fathom how that fundamental variation would have transformed all of our lives is slightly maddening.  I try to picture it and vanish down the vortex of endless possibilities.

I dread the moment Zephyr realizes or is told about the friend and brother he should have had. That sadness is a shadow on my every gesture and thought, and I hate that he will learn, someday, what he doesn’t have. At night as I lay in bed, sometimes the pipes start to knock as they heat up and warm the house.  First it’s soft and light, then louder and more solid.  The knocks are intermittent but consistent and when they wake me up in the middle of the night and I lay there listening, anticipating, waiting for each next knock, I can’t help but think about the soft gray ashes in the drawer next to my bed, next to my head that are all that is left of Silas’s corporeal body and although I don’t believe in ghosts or hauntings or maybe even the afterlife at all, I can’t help but hear his shadow knocking on my soul, knocking softly every day and night, knocking softly on my heart.

I see his fleet shadow flying around the corner when I walk with Zeph down the block.  Silas is already ahead, already gone, but I’ve got to keep this little guy’s hand in mine as we amble along, going slow like only a two year old can do.

Do you have moments when you feel your lost child closely?  Is it a sound or a place or state of mind?  If you were fortunate enough to have children after your lost child, what was it like to explain to them what happened?  How do you deal with the what-ifs & should-have-beens?

inside the broken

There are things which broke on that day which will never be repaired.

My ability to give a toss, for one thing. I walked out of the hospital wearing pyjamas, clutching a yoghurt. Less than an hour after watching my 11 day old son die, I left the building having forgotten to dress but feeling it was important to not waste the money spent on a breakfast yoghurt that my throat had been too constricted to eat.

A million times I have reconstructed that morning, imagined that I screamed and howled and refused to be parted from him, imagined myself cradling him - illegally outside a car seat - on the journey home. Imagined his breathless body in our home, loved by us all, for a few hours. Just a few. Long enough for all of us to hold him.

A piece of me broke when I laid the body of my child upon the bed, turned my back, walked away, left him forever. I went quietly. I walked with measured steps, climbed inside my car, composed myself for breaking the news at home.

I stared at the car in front of us, proclaiming in a jolly yellow sign "baby on board" from the back window.

I didn't cry, or snarl, or instruct my husband to ram their smug, unknowing selves off the road with their sneering, crowing, baby sign.

I don't miss the drama queen, nor the woman who put her own needs and wants first and had a baby to suit herself. She broke. She is long gone.

The mother who arrived labouring and optimistic was not the one who walked out empty armed and brokenhearted. I wonder at what became of her on those haunted corridor days, the long nights hovering above a SCBU crib. I wonder at the mother who left, grief already put to one side, able to turn her back to a beloved but dead son and focus on the living.

I would not have believed that I had that in me. I would not have believed that my soft soul, so often such a shaken and shifting thing, would have hardened, frozen, stiffened and done the deed.

I am not sure if I want to be the mother who walked away. It does not feel honourable nor does the walking illustrate the love, or the desire to stay forever, suck him inside of me, curl up upon that bed with him inside my arms and keep him warm with my warmth until we both grew cold.

But the one who arrived home. Broken, yes, but strong. So very, very much stronger than anyone believed. Least of all me.

There are things that broke inside of me that day; faith, trust, patience and tolerance. Energy for the small worries, some measure of mercy for human foibles are long gone. I do not wish to be troubled by the minutiae of petty irritations. I do not suffer them gladly.

What was left, when all that cracked and fell away, was new, pressured hardened, solid, changed.

I survived.

My son died, in my arms, under my gaze.

But I survived. I changed, changed deeply to my core, but I have survived. Sometimes, I rather resent that it is possible to do so.

Can you identify parts of your personality that have changed since the loss of your child? Are there changes you welcome in some way or do you resent them utterly? People talk about 'becoming a better person' as an aspiration after experiencing loss; is it possible for that to happen? Is it damaging to even try? In what ways has grief been a journey for your 'self', your character and how do you feel about it if it has?

the scbu legacy

There is a boy on my lap, ten months old, and he's been gasping for breath all evening and the antibiotics that should be helping are making a red rash creep up his cheeks. It's getting harder to breathe now and I'm looking at him and I know what the doctor - kind, understanding - is going to say next.

"I think we need to admit him."

I'm all on my own with a million screaming voices in my head and I don't know how to help him - or me - and a tear splashes down on his face.

I'm always raining tears on my boys.

And then she says:

"He will be okay."

Beat. Follows Beat. Follows Beat.

I look up and I can feel the look that I give her.

"I've been told that before."

Flatly.

Don't tell me this will be okay. You know nothing. You people can't save my boys. I don't believe you.

***

There is a boy on his lap, ten days old, and he's arching and gasping and the room has stilled to a horror struck silence. He's been stable - doing better -  but suddenly the world has dissolved and a hiccuping gulp for air has become a desperate grapple for life and he's suddenly all ours, our responsibility and I can see that he's dying and it's going to be unbearable, painful, the cruelest and worst possible ending.

The antibiotics that should be saving him are doing nothing and no one knows why.

I know what she's going to say next. Kind, understanding.

"I think it's time to make a decision. If you wait, there won't be a decision to make."

Beep. Follows Beep. Follows Beep.

Damn monitors. Damn wires. Damn tubes that came between us and didn't save him. I don't know what to do to help him. Or me.

And then I do.

I look up and I can feel the look that I give her.

"Do it. One last chance. Only one. Give him till tomorrow to try to live."

Don't tell me this will be okay. I've been telling you for ten days that this won't be okay. And you can't save him. You don't know why, but you can't save him.

And I'm all alone, all night, with a boy who said no to his one last chance and who chose to give up on breathing and chose to reject the help that all the medics who wanted to save him offered and who left me, with a million voices screaming in my head, with the knowledge that I let him go because that was all the mothering I could give him. That was all the kindness I could offer. That was for the best, for him, for all of us.

***

We don't talk about the SCBU days. We don't talk about how the rhythmic beep of a monitor still sends us into silent meltdown. We don't talk about how each illness, erroneous blood test, each new health problem for our girls and rainbow boy forces us to silently confront the reality that our child died and when we needed them, the doctors couldn't save him. Didn't know. Can do so many brilliant things but couldn't save a little boy who lacked the fight to live. We don't talk about how one doctor said he would do well, that 24 hours later we crashed as another spelt out what 'do well' might mean for a boy who didn't want to suck. We don't talk about the peak as he opened his eyes and began to respond or the pit of despair that hauled us down as something inexplicable tore him away from us again. When our subsequent child is - repeatedly - admitted to hospital with breathing problems (and lives, I grant you) I go alone to care for him. Alone beats the companionship in terror of the SCBU parent bedside journey.

Just waiting for the balloon to go up. Just waiting for the hammer to fall.

Three years on, we do not let ourselves look at Freddie's 11 days and acknowledge how easily it could all happen again. And that means we do not look at his life at all.

***

They couldn't save him. They didn't know. And so how can we ever believe  in "it will be okay" ever again?

How has the loss of your child changed your feelings to illness since? How has it altered your parenting to subsequent or other children? Are you stronger or weaker in crisis since? Do you see death lurking around every corner or do you thumb your nose at it? And if you experienced a SCBU (NICU) journey, what is it's legacy in your life since?

After The Bear Hunt

The discussion boards for Glow in the Woods are truly that warm, welcoming campfire to so many of those who find us in the darkest of journeys. Throughout Glow's five years, the boards have grown tremendously. We are so grateful to how graciously our community continues to abide, listen, and support one another. Through our growth and feedback from our community, we felt it was time to expand and add another board--Parenting after Loss. Whether you were parenting children before your loss, or parenting a child born subsequently, Glow felt it was time to create a space to talk about the specific issues around parenting and grief.  We hope this space will be welcoming to those in all stages of grief and parenting. As always, if you have any suggestions or feedback on the community section of Glow in the Woods (the general board or the ttc/pregnancy/birth after loss board or our new board parenting after loss), please contact us here. We'd love to hear your thoughts. 

Today, we are thrilled to introduce Merry of Patches of Puddles as our new Board Moderator and a regular contributor. Merry's support and love permeates all the nooks and crannies of this community.  Merry's fifth child Freddie lived for eleven days in SCBU before dying of pneumonia. She is parenting Freddie's little brother and four older sisters in the UK. We are so lucky to have her keen eye, compassionate heart, and eloquent voice among ours. --Angie

“You can’t go over it, you can’t go under it…Oh no, you have to go through it.”

So say the words of a rhyme my children sing; lines that have played in my head since I stepped upon this grief path. The Bear Hunt; the long, difficult, fearsome journey.

I tried to find a way to scramble over grief, glide upon its surface and slither down over the other side of a glass dome that reached skyward, holding my baby and my pain inside it. I pledged to write him out of my mind and memory, believing I could escape the trite truisms of the steps of grief. With no intention of reaching acceptance, I relished denial. Busy, stretched beyond measure by the damaged children surviving Freddie alongside me, I pushed my tears to the quietest moments, the dead of night, the bathroom, lonely car journeys of the parent taxi trail. In the daylight, fear and pain on the faces of his sisters when I cried was too awful to behold. Keep it together, put on a brave smile, hold them when they cried. Just keep swimming. Just keep gliding.

Just keep scrabbling desperately to hold on to the life that had been ours, when we could count our children without confusion. When we could hold them all in our arms. When there was no space on the sofa, no space in our hearts, no empty spot between us all.

And then came despair. Choking, horrifying, utterly consuming and black as night and twice as bitter, despair. And I tried to go under it. I told the world and all her wives of my lost son, just to see the shock, see the horror, see the recoil from all the checkout women and frightened postmen who wished the crazy lady away. Begone, with your foul, mud soaked, horrifying grief. Get over it. Move on. Be on your way with your inappropriate love for a boy made of ashes. His loss rose up between us all, the husband and girls who went on and relearned a smile and the mother, woman, wife and now barren and broken part-human who tunnelled through days and wondered how to make another life. Month after month, I sunk beneath blood and anger and disbelief as a never birthday loomed and a life mourning a baby stretched impossibly - broken - in front of me.

You can’t go over it.

You can’t go under it.

Oh, no… you have to go through it.

Through the mud. Through the tears. Through the river that takes the feet from under you. Through the grass that sways above your head, disorientating, blocking the view, all you can see. And all the time dragging my broken children along with me, committed to the path I had chosen - the hunt I had wanted - which was punishing them so utterly.

The work and effort of grief, a journey, a slog, all to find a big black cave and a big black bear and turn tail and run for home, retracing steps, trying to find the place where once you were, trying to keep my other children safe as they bumped and scurried alongside.

And then… and then… lying on the bed, chest heaving from the chase, bones exhausted, tears all cried out and heart hammering. A memory of horror and fear and the jawed yaw of utter destruction, of unimaginable pain, right there, in your mind’s eye.

Slipping… sliding away.

A memory.

He was here. One of us. I do remember him. We did love him. I do love him. He was a person and he is – always - my boy. He was also a journey, one that broke me on every step and which brought me home, but not to the same place.

And, having gone through it, I tell you a truth now. Life goes on. Not the same life. Not the same person. Not scarred exactly but somewhat brutally reshaped.

The journey, now part of me, has the air of a badge of honour to it. I would not be without it. Here, in the unasked for afterglow of grief, I find myself, us, a family, with every decision we make infinitesimally altered by the knowledge that one of us can die.

The lens is different. Everything I do is tinted by the grief lens. My girls go out and I hope to see them safely back. The telephone rings and I hope to not hear of death. A baby is born and my head reels that people ask for weight and gender, not first breath safely taken. My child, admitted to hospital, makes it safely home. I am stunned by survival. The car breaks down, expensively. Nobody died. Our livelihood is precarious. Nobody died. The toddler ballpoint pens the expensive sofa. It’s just a thing. Nobody died.

This is my story, 3 years on. Mine is a journey complicated by my travelling companions; the living children I brought with me, guilt that they know grief, regret that they see fear in my face when illness strikes, sadness that they fumble answers to simple questions about brothers and sisters. Nothing has been the same for them since Freddie died. They do not have the same mother, or father, or family. Everything is a fight to weigh the knowledge of loss against the right to independence. They trod the terror of the subsequent baby path with us and their life is changed because of that.  And his life, the precious princeling who came after, is a kaleidoscope of the fragments of loss, love, longing and fear and joy and wonder that he has as yet no knowledge of and cannot change.

I am not the mother I was. I am twice the mother and half the mother, a patchwork of unwanted experience. I am surviving the hunt and the fear, but I will never be home, not quite.

Where are you on your grief journey? Have you tried to move under it? Over it? Tell us what it is like to move through it.

a hard talk

It is my distinct honor to  welcome our newest regular contributor Brianna from  Daily Amos.  In 2010, her first son George was diagnosed with heart failure caused by supraventricular tachycardia at 24 weeks gestation. Over the next four weeks, the doctors tried to slow his heart rate down with medication. After stopping treatment, Brianna developed Mirror Syndrome and had to have an emergency c-section. George died shortly after birth. Brianna brings her wisdom and sharp insights to Glow in the Woods. We are grateful to have her. --Angie

When I was a kid one of my favorite books was Maurice Sendak’s Where the Wild Things Are.  I often imagined myself as Max (and what child who has ever read that book has not done that same exact thing) throwing off the shackles of parental subjugation and escaping to a place where I was beholden only to myself.  To this day I still love that book and get a thrill every time my nearly eighteen-month-old daughter asks me to read it to her and yells, “Max!” as we flip through the pages.  There is something pure and honest in the way Sendak writes about childhood that is completely unique to him, which is probably why his books are beloved by so many people.  Maurice Sendak died last year at age eighty-three having written and/or illustrated hundreds of pieces.  Given the subject matter of what he wrote about I was surprised to discover that he never had any particular fondness for childhood and was more than a little preoccupied with his own death.

During one interview Sendak explains what he believes to be at the root of his morbid obsession.  He tells a story of being a small child, about the age of four, and seeing on the front page of a newspaper a photograph of the remains of “The Lindbergh Baby,” the twenty-month-old child of the famous Charles and Anne Lindbergh who was killed during a kidnapping for ransom attempt.  Sendak goes on to recount how profoundly the image terrified him and that his parents never really adequately addressed his distress.  His parents, in fact, denied that such a photograph existed and insisted that little Maurice must have fabricated the entire thing.  It wasn’t until many years later, long after Sendak’s obsession with the Lindbergh baby had matured and developed into the fixation he had about his own death, did he actually get confirmation that the photograph he claimed to see on the newspaper did actually exist.

I don't know why his parents chose to ignore their son’s obvious difficulty processing what he saw.  Maybe they really believed their four-year-old son had lied about the photograph.  Perhaps they thought convincing him that the entire incident never happened was the best course of action.  I assume they were doing what most decent parents do when faced with uncomfortable situations like these; the best they can.  But whatever the reason behind their decision, the result, at least in Maurice Sendak's mind, was that the little boy grew up to be fixated on his own death.

Watching Sendak recount what a traumatic experience he had with his first encounter with death made me think about the first time I learned about the concept myself.  It was when one of our cats died and I must have been six at the time, maybe seven.  She was a tortoiseshell beauty we called Puzzles, name owed to the interlocking swatches of orange and black fur on her back.  She had been sick and my parents sent us down the street to play at a neighbor’s house while they took her to the vet.  At the time I was not aware that they were taking her there to be euthanized.  I assumed they were taking her to the doctor’s office to get medicine in the same way they did when my sister or I was sick.  They returned later that afternoon, driving on our street past where we were playing outside.  I knew something was wrong when I saw my dad in the passenger seat and that my mother was driving, an unlikely sight in our family.  My sister, four years my senior, must have also known something was wrong as I don’t remember her saying anything to me the entire walk back to the house.  When we arrived we found my dad, with a grim look on his face, along side my mother, waiting for us at the front door.  “Puzzles was too sick to get better,” they told us, and that they “had to help her so that she would no longer be in pain.”  They explained that they had her put to sleep, that she was not going to wake up, and what exactly all that meant.  There might have been talk about heaven and what happens after death but I honestly don’t remember what was said mainly because I don’t think that part of conversation was as jarring as the idea of actual death. 

They brought Puzzle’s body back from the vet’s office so that we could say goodbye by having a funeral for her.  I realized that was why my father had been sitting as a passenger instead of his usual place in the captain’s seat: he had been holding on his lap the body of our much-loved cat, wrapped in plastic and placed in a cardboard box.  Later that day my dad dug a hole in the corner of the backyard under a tree where we said our goodbyes.  It was about as gentle an introductory experience as a child can have to death.  I don’t look back on that memory with any fear or resentment but rather with an appreciation to my parents for making the hard choice to talk to us frankly about such a difficult subject.

In an ideal world the introduction I had to the concept of mortality and death is the one a child should get about such a profound subject.  The introduction should not happen by being faced with a black and white photo of a stranger’s murdered child, or by the death of a sibling, or by watching mama come home from the hospital without baby brother or sister… Sadly though we don’t live in an ideal world.   We live in a crazy, often beautiful but just as often fucked-up, world.   Sometimes children do get murdered and sometimes babies do die.  Some of us do not get to decide when and how our children learn about death…for some of us circumstance chooses for us.

Since George died Leif and I have had frequent conversations about how and when we are going to tell his sister about him and why he died.  I guess in a way we are the luckier ones in the spectrum of unlucky baby loss. He was our first child and so we have the luxury of deciding when our daughter learns that she had a brother. Still I can imagine that no matter how or when we do it I will always wonder if we irrevocably damaged in some way her impressionable young mind.  When she is fifteen and painting her nails black, listening to her generation’s equivalent of The Smiths, I’ll be certain that it is a result of my failure as her mother to adequately address her brother’s death.   When she expresses any hint of anxiety while being pregnant with my grandchild, I will have no doubt that it is because she is convinced that her baby is going to die just like her mother’s did.   I don’t think it is possible to escape those kinds of doubts or, if there is, I’m still trying to figure out a way to it.

The truth is that I am not afraid of telling her about death and mortality, per se.  What does frighten me about explaining to her that her older brother died is the part where I have to expose her to ideas like sometimes bad things happen to good people and that there are not always good reasons for why terrible things happen in life.  I worry about having to explain to her at some point that occasionally even our best efforts are not rewarded with happy endings.  I don’t know how or when as a parent you tell your child these things as it seems to me it must at least partially steal away some innocence, and there is such precious little time they get to keep that as it is.   What I do know for certain is that I will tell her about her brother George and that he died even though we wanted him so badly to stay.  I will do my best to give her honest answers when she asks questions about him, as I know that she inevitably will.  I will make sure she knows that no matter how scary this world is that I love her and her brother so very, very much.  Maybe that is all she needs and the rest will work itself out.  

What are your thoughts on discussing the topic of death with children?  Have you had to explain the death of your baby to his or her sibling?  How did you do it?   If you haven’t yet had to address the topic, how will you or how would you do it?  Or maybe you won’t address it.  Tell me why.  What do you wish your parents had told you about death?