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?