equations

This month's guest writer D. describes herself this way, "I fit into a unique niche that is becoming more prevalent; I knew my baby would die before she was born.  When I was twenty-three weeks pregnant, she was diagnosed with Trisomy 13 and we were told she may be stillborn or live minutes, hours, or the average of 2.5 days which is exactly what she gave us." D. blogs about raising her toddler daughter, grieving her second daughter, and the life that occurs in between at Still Playing School. Please welcome D. and join the conversation. --Angie

As we anticipated our second daughter's death and soon after we lost her, other parents would approach me with lowered eyes to start a conversation about loss by saying, "It's not anything like what you've been through, but we had an early miscarriage..."

My response before they can share the intimate and welcomed details about their child is to explain that there need not be any quantifiers.  This is your baby who you can't have with you each day.  It's a loss, a death, someone to grieve, whether you named, held, nursed your baby or not.

We learned when we were five months pregnant that Violet wouldn't live long after she was born, if she was born alive at all. Through the power of the internet, I found another mother 5,000 miles away whose beautiful daughter was also named Violet. Our Violets had the exact same rare chromosome abnormality diagnosis. Her Violet's middle name was also the same as my older daugther's first name. I got chills and emailed her.

While the coincidences that allowed me to reach out to her were uncanny, the differences were stark.  Her Violet had been still born.  They didn't learn of her diagnosis until after she was gone. Months later, when our Violet was born, she lived 2.5 days.

"I can't imagine knowing you were going to lose her," she sympathized.

"I can't imagine not knowing," I replied.

When we received Violet's diagnosis, we stopped the typical preparations, which was so unnatural.  My hormones urged me to buy diapers, set out the bassinet, and wash baby clothes as my belly swelled with her.  Yet we prepared for her arrival in other ways, meeting with funeral directors, gathering mementos to create, and planning with the palliative care team at our hospital.

We stopped decorating a nursery.

My friend returned to a ready and waiting home where her child would never sleep, to clothes she would never wear.  I cried when I saw the picture of her at her baby shower with pink clothes piled up beside her.

We hurt for own unique children, yet we mourned for each other as well and we felt those differences so deeply.

We might wonder if it is it better to have a fatal prenatal diagnosis or be caught off guard.

Is it more painful to lose a baby or a child at age 2, 5, 10?

Can we compare the shock of a car accident to the way your hope slowly trickles away as your child faces a terminal illness?

We can't create equations to compare the pain of losing a child.  There are no greater than or less than signs.  There are knowns and unknowns, but both have the same amount of pain attached to them.  The loss of a dream for your future, but also the loss of a very real person.

Did you know before your baby or babies were born that they may not live? Have you thought about whether you would have liked to know your child or children's fate if you didn't know, or not know, if you did? If you didn't know your child would die, would you have liked to know? Or if you knew, do you imagine whether it would have been easier not to know? Has the death of your child or children changed the way you will approach or have approached subsequent pregnancies in terms of prenatal testing? 

What They Say

Today's post isn't going to be lyrical or beautiful.  It's not going to uplift you or share a new perspective on the terrible tragedy of losing a baby.  And it also contains a fair bit of swearing so be forewarned.  

Today's post is about other people, the ones that have all their kids and don't know one single thing about how to talk to us, how to behave like a true friend, how to navigate in our dark depths and instead say incredibly stupid and insensitive things without using their heart or brain before opening their mouths.  So, let's start with my favorite:

"Well, everything happens for a reason."

What I want to say & do in reply:

Oh really?  It does?  So when I wind up my arm and clench it into a fist and punch that person directly in their disgusting, thoughtless mouth, I can just chalk it up to 'everything happening for a reason?'  What a relief!  I thought the Universe was just random, brutal and unforgiving, but here you are with your deep wisdom born of nothing, telling me I can do whatever the fuck I want because hey!  It all happens for a reason!  And the reason you are flat on your back from my knuckle sandwich is because you're an unthinking, insensitive ass.

What I say instead:

I disagree.  There could never be a good reason for my son dying.  What you are saying is very offensive to me, and I would appreciate it if you would keep those sentiments to yourself.  I know you're just trying to help, but it's not and you aren't and please, please stop. (or else, see above, I say with my eyes)

"Whatever doesn't kill you makes you stronger."

What I want to say:

Hmmm, let's see, no.  Not true.  Some things that don't kill you make you weak and fragile and bitter and sad.  Some things, like losing your child before they had a chance to make a breath or live a day, make you hollow and desolate and open your eyes to how bad life can get.  The strength I relied upon to live through that terrible experience came from who I was before he died.  His death did nothing but rip the naivety and innocence from my soul and lay the world bare in all its brutal viciousness.

What I say instead:

My son dying didn't make me stronger.  It made me nearly dead myself, and I'm not stronger for his death. I would have been made stronger by getting to be his father. What you are saying is painfully insensitive.  Please stop.

"At least you're young, you can have another."

What I want to say:

Wonderful!  Thank you so much for being a fucking idiot.  Because as you know all kids are replaceable. One breaks or dies, just go out and pick up another one.  How about this?  How about I take one of your four kids and raise it as mine?  After all, you've got plenty!  Spare one for someone who misplaced theirs when they fucking died.  How about it?  Since you're such a dumbass you will probably raise awful children anyway.

What I say instead:

Nothing.  I say nothing to those people.  I just look at them for a moment, shake my head and walk away.

"God works in mysterious ways."

What I want to say:

Fuck you.  Get out of my house.

What I say instead:

That's the stupidest thing I've ever heard.  If this is God's mysterious way of teaching me some kind of lesson, He/She/It can go fuck themselves.

"Is he your first?"

What I want to say:

Why do you want to know?  Or are you just asking things without thinking about it?  Do you really want to know about my first, about how he died?  About how we are still devastated by his absence?  About all our hopes for him and us dashed against the black shards of death?  Or are you just some blissfully ignorant stranger who can't keep their mouth shut and don't really give one fuck about us at all?  Ah, I thought so.

What I say instead:

No, our first son died due to complications during birth.  Then I just look at them while they crumble into despair and I think to myself be careful what you ask people, they just might tell you the truth.

~~~~~~~~~~~~~~

What insane, awful and horrific things have people said to you when they learn that your child died?  Let's rage on this together with the only people that know the truth and feel a little better by getting it all out for once.

a girl on the train

I am going to tell you this story. I don't think I ever told it before.

 photo by .aditya.

This was a few years ago, and I was less than a year from Lucia's death, and I was pregnant again and coming home from a midwife appointment in the city. I was on the train. I was listening to Stereolab, holding onto a pole, staring out the window at graffiti and darkness passing underneath the city.

Then I saw her waiting for the train. I couldn't believe it. She walked onto the car, brushed past me. I smelled her without being weird. And she even smelled like I thought she would. She had dark hair and eyes like my husband. I couldn't stop staring at her. She was Lucia grown up. I mean, I thought Lucia could look like her. Then I guess I thought she was Lucia. She must have been twenty-two, or so. She looked athletic with wide shoulders. She wore orange and red, and carried a small purse crossed over her chest, nothing ostentatious. She checked her iPhone and listened to music and tapped her toes. She wore cool, sensible shoes. Clogs. Just like me. And a scarf around her neck.

I whispered Lucia's name, but she didn't budge. I turned away now and again for the sake of convention. But I situated myself so I could mostly stare at her while pretending to look through her, like she was a specter, which of course, she was. And when the train pulled into my stop, I stayed on. I stayed on the train to see her longer. To look at her face. Praying she would smile, or talk. She was my baby, but she didn't know it. I wanted to see the way her neck eased into her shoulder. It was a very adult part of the body, and Lucia was never adult.

My God. Lucia will never be an adult.

The fact hits me like I fell in front of the train instead of rode in it. Lucia will never kiss a boy. She will never go to college, or eat a peach or dance in a rainstorm. I will never run into her randomly on the train where we can ride home together. I sometimes forget the details of all she will miss in my missing. She will not wear sensible shoes on a Tuesday, or crazy heels on a dark New Year's Eve. She will not hate basketball, or love it, even. Lucia is missing everything too. This body, this youth, this sexiness, this life we lead when we are young and death is something conquered, not an inevitable destination. Lucia never left the station.

I have nothing left of her. A wisp of hair, and grief. If there was a tea to take away grief, I wouldn't drink it. It is all I have of her--grief. An astrologer said I ride the train through two worlds--the living and the dead. I will never fit in either place. It is my destiny, he said. By the alignment of the stars, and my birth time, and this life, he said, Remember,  you made this soul contract. You picked your suffering. To me, he said, it looks like you picked the express train to spiritual growth, which means this is going to be a hard life.

I want this grief, this dis-ease of the heart. The grief is love, I think. It is the aching part of love. It is the sad part of love. But it is still love. Grief ties me to her. Aching. Pain. Suffering. They are her calls to me, and in that way, the pain is sweet and beautiful. She is just a name now. To my children. They stopped asking me about her weight, and what age she would be. She is Lucy, the very sad story I told them one afternoon. She is a butterfly now, and maybe a ladybug. She is the dedication of a song, or a picture, but not a real girl. She doesn't ride the train, and listen to music. She doesn't wear her hair down. Not like the other sisters.

This ride home felt like a journey between two worlds. I am Orpheus, walking again with a lyre into the underworld, and it invigorates me. It is not unlike going into 8th Street station. It smells of piss and cigarette smoke. There is a darkness in me. One I finally see. If I embrace it, the astrologer says, I will be happier. Even way back then, before I knew about the darkness in me, I paid the conductor, and followed the girl that could have been my daughter. My Lucia is dead. Her ashes are lumpy (so is my soul.) I probably wouldn't recognize my little girl walking and talking like a twenty year old. After all, I never saw her live. But that girl on the train was her for twelve minutes. And I loved her like my baby. The girl gets off the train and runs down the stairs. I watch her disappear behind a wall. Lucia is dead again.

I cross the platform to the train going back to my home. It's only two stops. The car is empty. It is hard not to cry, so I don't fight it.

Have you ever seen a stranger who reminds you of your child? Is there any adult in your life that reminds you of what your child could have been? Who is it? Do you want to be close to them, or far away? What parts of your child's adulthood do you miss most? 

The Ambassador

I had that call again.

A friend of a friend. Someone’s brother. A former colleague.

I shake my fist at Jimmy Stewart, because every time my phone rings an angel gets its wings, but it doesn’t seem so uplifting when the angel is a dead baby and you don’t believe in angels anyway.

I hope you don’t mind me getting in touch, I just didn’t know what to do and I thought of you immediately…

It reminds me that I am a denizen of a bruised nation with a missing population. We stand invisibly united under a knitted, never-used flag.

We did not choose to come here. We cannot leave, cannot flee. Yet we are dispersed. Grieving refugees. Missing a home we hardly built, earth we barely touched.

Another family crosses our border and we do not bring them casseroles. Or, y’know, we may bring them a casserole, but really we’re giving them some kind of painfully extended metaphor for what the next weeks/ months/ years will be. There is no silver lining, so perhaps a free casserole is the best we can hope for.

I feel like I should stand on something and proclaim:

Friends, Mourners, Undiscovered Countrymen…

But no one here wants a rousing speech, or maybe you do. I don’t know. We do not speak a common language, or share common customs. We hold different politics, different faiths, different aesthetics. We are connected, but only nominally. In reality, babylost covers an extraordinary diversity of experience. There are so many ways for babies to die. It still shocks me.

The friend of a friend. Someone’s brother. The former colleague.

I do not know what they want. I barely know what I want, truthfully. I want to make some weak joke: …something something DIPLOMATIC IMMUNITY, am I right folks??!!

I am an undeserving emissary, chosen by default.

Yet I am your Ambassador.

And you are mine.

Have you encounterd a babylost ambassador? Someone who had walked the path before you and helped you navigate your grief? Who are they and what did they do that helped?

glass words

I am so honored to welcome this month's guest writer. Merry's support and love permeates all the nooks and crannies of this community.  Merry describes herself as a "38 year old mother of four girls who came before and then Freddie who was born and didn't breathe but then did and lived for eleven days in SCBU before dying of pneumonia. In January this year we had Ben, our rainbow baby born 21 months after Freddie died." Merry writes at Patch of Puddles.

When I say the words, they remind me of the twinkling, polished nuggets of pretty glass that surround his memorial tree. Smooth, splendid, finished, perfect.

"He's their second brother. We had another little boy but he died when he was very young."

"They did have another brother but we didn't get to bring him home."

"We had another one who spent some time in SCBU. No, he didn't come home unfortunately."

"I've had six children... I have five children."

"He is number six. I have four girls at home."

Sometimes I phrase it so I don't have to say the words. Their brother died. My baby died. Our son died.

I've perfected the words so they skitter around like handfuls of decorative glass pebbles held high and dropped, bouncing in the sunlight.

photo by dalvenjah.

I'm guilty of an art of careful word architecture that parcels up our family pain and speaks it in a way that acknowledges but protects. I sometimes worry I phrase it in a way that make people think we weren't allowed to keep him rather than had him brutally taken. By the time I spit those artfully shaped words out they have been shaped to make them glisten and slide from my lips, not rip . I'm guilty of trying to make it palatable. I worry people think it means I have got over it.

I worry he hears.

+++

The world at large says words back at me that my world in miniature says politely.

"At least you have the others."

"The girls must have helped you get through."

"Thank goodness you didn't have to bring him home for a while. At least you never got to know him before he died."

As if the eleven days bent over his cot, praying to every god I don't believe in to grant a miracle didn't count. As if having four healthy children makes a difference to the pain of losing one. As if, at the birth of a good to go child, someone could say "Do you mind if we keep him and you just pop off home?" and the answer would be "Well of course, it's not like I know him yet!" As if, knowing his sisters, loving them deeply, makes his loss more bearable and not the yawning, gripping pain of knowing exactly how wonderful and beautiful a person we lost.

"It must be so much easier to cope with losing Freddie now that you have Ben."

Out pops a pebble, a shiny glass pebble.

"Yes, it helps. Of course it helps." Treading a path neatly between the socially acceptable and my listening daughters hearing and thinking he became expendable and forgotten. I break my teeth on another palatable pebble.

+++

It's because of my daughters that I had to give up fighting for Freddie. With disability and long term care looming hard and fast, I vomited up the words that we had to let him go. Losing him was not better because we had living children, it was made bitter and bile filled by the knowledge that I could ruin six lives by fighting for him or let him go and save us all.

"It's time to stop."

There was nothing polished about those words, they were molten and then jagged and my cheeks and tongue and throat are throbbing and scarring still.

Don't let anyone tell you that having other children makes it better. Different, but not better.

+++

Just 30 minutes holding the body of my son without wire or tubes.

With the image of my frightened and barely whole children waiting for news burned into my head, I watched my son die, packed my bag and went home to comfort them, to break the news, thank the people who cared for them - and have lunch.

Home to an eleven year old standing at the top of the stairs and sobbing "Is he dead? It's not fair."

Home to a ten year old who took one look at our faces and turned and walked away, the brother she had longed for gone before she ever held him. She never let herself cry.

Home to a seven year old who screamed "You shouldn't have had him! You had too many children already! Have other one now!"

Home to a five year old already shattered to pieces by her parents having been absent for eleven days, who had kissed the bump every night and made him a space in her heart and loved him as only a five year old can and who sat in our arms and seemed to understand and two hours later asked when we would go to get him and bring him home.

Who asked repeatedly, "Is he still alive really?"

All our grief, laid out and raw in the faces of the children we loved. Our children dragged through the splintering, wounding carnage alongside us.

My children, crumpled and bewildered and somehow supposed to filled the gaping hole in my heart, who listened and watched my every move, weighed up my love, weighed up my grief, looked to see if I would last. Looked to see if I could still be mummy.

Home to gymnastics sessions and maths that needed doing and laundry and presents waiting to be given to a new baby brother. I spent the first night after his death not in my bed and my husbands arms, but on a mattress on the floor of a pink bedroom, each of us with shell shocked girl lying either side of us. There was no hiding in a darkened room for me. There was no going to pieces. The greatest betrayal was that we had to put Freddie neatly away ourselves and carry on - go forward - to keep our living children safe.

Life goes on.

Don't let anyone tell you it makes it okay if the babylost have other children.

Sometimes what hurts most of all is accepting I was one of the luckiest of the unlucky people. That my pain is a little more bearable because of my children. But that my pain is magnified ten thousandfold by seeing them hurt.

+++

When I think I can't be any more sad, I hear them speaking pebbles. Polished, perfect pebbles that drop and scatter as they dance the linguistic dance of having two brothers but only one that anyone can see.

That is a special kind of heartbreak.

Look what I did to my children. I wanted another baby, who died, and I made my children learn to speak the language of the grief stricken. I daren't look inside their mouths. I am too frightened to see if there are scars from the glass. I'm horrified, but happier, to see the pebbles.

How do you use word architecture when speaking to others about your child's (or children's) death? Is there one phrase you use consistently? Do you use different words or phrases depending on if you are talking to a stranger, the casual acquaintance, close friend or family member? If you have older children, how to teach them to talk of their sibling's death? Do you overhear them mirroring your words?  What kinds of things do you overhear them saying about death and grief and their family since the death of their sibling?

To The Pain

I don't have a picture of Silas handy.  I know I can go to my blog and look at the photo we have posted there, and we have a framed memorial with his image and footprint and handprint and a photo of his name in the sand.  In the drawer next to my bed, I keep his ashes in a small orange jar with a cork in the top.  Lu got it for me for other reasons years ago, but when we needed to transport a portion of his remaining physical form to the memorial site in the park up the street, that's what I had and that's what I used, and that's where I keep that part of him.

I have a tattoo on my arm that is the most present aspect of Silas in my life.  Like him it is part of me, forever.

The ink in my skin has become the perfect metaphor of my mental picture of him.  Long ago he ceased to be a person and transformed into a force.  His energy blows at my soul and turns in me in ways I never expected.  All these years later and I can feel his brief life exerting its pressure on my heart, my consciousness, my view of the world.

The exact same white EMT truck just blew past my window as loud and terrifying as the day he was born. I dread where it is going.  That is Silas as real and true as anything I can conjure.

When I hear of a new pregnancy, when I see women round with life, when someone unknowing tells me about plans for the perfect birth experience I feel Silas in my nervous system.  My thoughts and memories and ideas of "him" are transcribed into the way I feel the world in a terrible, tangible, painful way.  And I love it.

Those sensations: the feel of the tattoo under my skin, my terror for those beautiful mothers-to-hopefully-be, the raw reality of a toddler boy exactly his age, I need them.

Silas can't be anything for me himself.  He doesn't have the voice to speak to me about his needs and wants, doesn't have the face to draw my gaze and steal my heart.  I don't know anything about who he would have been, but I can feel in those grievous sensations all the hopes and expectations I had for both of us, and I love them.  After all, those brutal sensations are all I have to keep my connection to the son I never knew.  Funny huh?  No, not really but no one else gets how fucked up this all gets besides us, the ones that are in the midst of this furnace that never stops burning.

We aim to have a Glow here in the Woods, for people to find when they are lost.  The part we don't often mention is that we don't just use this fire for light and warmth.  We use it to sear our souls over and over again, to touch the pain and drink it deep.  When I saw his ashes in my drawer only moments ago while looking for some random object it generated a sensation in my body that few people know.

This, this is what I have.  This is the most and all that I have.  This is more than what I have because his ashes are years older than he ever was.  That little jar.  That little life.  The wrongness of a life snapped off so short is gut-wrenching and violently wrong, and that's my life, his life.  So the sound that came out of my face wasn't a laugh or a grunt or a groan, but something all the way in between.  It was a guttural acknowledgement of how fucking awful life can be, and how much I miss his life never-to-be, and how little I can do about any of it.

I don't have him or a picture of him handy, but I have so much more of him in and with and around me than anyone would ever know.  My grief for his lost life burns bright in my soul and I love hating how much it hurts.  I step right up to the moments when it hurts the most because that's how I can feel him in the most visceral, literal way.  His absence burns me to a crisp, and I relish in the charred memories and the hopes made of smoke and tears.

How do deal with the pain when your lost child or children is suddenly present in your life?  Do you seek out experiences that will hurt, in order to feel them close?  Do you grieve in secret, special, private ways?  How has your view of grief and pain changed?