The Location of Loss

By Ryan O'Neil

My name is Ryan, and my wife had a miscarriage in December 2014. Since that time, one of the many things we’ve struggled with is recognition of our loss.

Katie and I have found small ways to integrate our daughter C.C. into our lives—writing about her for example, and taking photos that make us think of her impact on us. But we struggle with how to share her with people beyond one another. We explore this at the monthly miscarriage support group sometimes: Where in this world can we make C.C. known?

Recently in a class I’m taking for my master’s degree in geographic information systems (GIS) in Public Health, I had to work on a final project: mapping a broad set of data. Unsure exactly what I was looking for, I browsed the Connecticut Department of Public Health website.

I found the birth, death, and marriage data—“vital statistics,” as they are often collectively referred. I dug in and found there were data for fetal deaths: data that covered 17 years and recorded at the town level, which would be ideal for this project. I thought about whether I wanted to spend a number of weeks soaking in this data, of all the statistics I could submerge myself in. Resolute, I decided to steer into the skid and maybe help shine a light on the subject, even if only for my professor and classmates.

The information about this data said “fetal death” was defined as pregnancy loss at any point up to 20 weeks. We had lost C.C. at about 9 weeks. I went to the 2014 table and scrolled down and found our town. There was a “1.” Our C.C.

It felt comforting, in a way, to see that “1,” that she counted. Even if most of our friends and family had forgotten our loss, the State of Connecticut would always have a “1” there to count her.

I worked on the project steadily over the course of about four weeks, going back again and again to analyze the data, and adding things I wanted to do with it. I finally wrote the introduction to the project. I re-checked some things, including the state’s definition for fetal death. But I had initially mis-read the definition; it was any pregnancy loss after 20 weeks.

At the time, I couldn’t sit with what that meant for long. I had a lot of work to do and not enough time. I sighed and was thankful that at least the only thing I had to change was a single sentence in my introduction, since I had only used the term fetal death (as opposed to “miscarriage”) throughout the paper.

Since that time, however, I have had time to think about this experience, and my residual sadness about it. I had lost the comfort of our loss being counted.

Yes, that “1” belonged to another family in our town—a family that I felt sorrow for. And I wondered who they were and if I’d ever come across them at any point. But, as little consolation as it is, I felt envious that their loss had counted, statistically speaking. The State of Connecticut was just one more entity that didn’t want to know about our loss.

We’re still looking for where else C.C. gets to live, outside our hearts.

Happy Birthday, Johnny

by Ann Ward

When I was five or six, I started writing letters to my brother Johnny, whose 34th birthday would be today. I wrote them in a scented purple hardcover diary with a lock and key. Sometimes they just said, “Dear Johnny, I love you!!!” in huge penciled swoops. Sometimes they were poems.

When I was a little older, maybe ten, I would clear the books and Barbie clothes from the Rainbow Brite blanket my mum sewed and ask him to visit me. He sat, always in the same spot, at the foot of my bed. I talked to him, sometimes out loud, sometimes in my head. I asked him if he was an angel or a ghost, and if he was an angel was he very high up, like Michael (aka John Travolta), or was he just regular. And if he was a ghost, did he haunt any place other than my bedroom, or did he wander around all over the world? And if it would be okay for him to be my guardian ghost.

We never met Johnny in the flesh, but I know that Andrew, Jane and I each secretly thought he'd be our closest friend. But in the end it just made me more grateful for my siblings, whose cool talent I've spent my life trying to emulate.

Andy-roo and Janie, I love you brilliant, genius weirdos so, so much. The longer I live a border away, the more homesick for you I get.

Thank you, mum and dad, for having the strength to make Johnny a real and present part of our family. I can't imagine the pain of losing him.

Happy birthday, brother.

Author Ann Ward (Center) with living siblings Andrew (left) and Jane (right).

Author Ann Ward (Center) with living siblings Andrew (left) and Jane (right).

Our Stories: Estephany & Aaron's Babies

Empty Arms is highlighting our beautiful community members and their babies. We're so grateful that they're sharing their stories with us! 

Estephany and Aaron

Estephany and Aaron

Estephany and Aaron have a special place in their Living Room to honor their babies.

Estephany and Aaron have a special place in their Living Room to honor their babies.

Tell us about you.
My name is Estephany, and I'm 23 years old. My boyfriend is Aaron.

Tell us about your baby or babies. What do you want people to know about them?
We lost two pregnancies in the same year; although they weren't born yet, to us they meant the world.

How did your baby and your grief journey change you as a person?
After each loss, I felt like I lost a different part of myself. I became lost and didn't know how to deal with every day life anymore.

Is there a way that you can pinpoint a change in your healing and grief journey because of your relationship with Empty Arms? 
I felt alone and like there wasn't any one out there who understood what I felt. Being a part of Empty Arms has helped me accept and learn to do better out in the real world.

What was the most important way Empty Arms offered you support?
Being caring and listening.

What else would you like to see Empty Arms accomplish? How do you envision the organization could make that happen?
Keep being yourself and keep doing what your doing. You guys are amazing.

A reflection on a life.

Saturday afternoon, I had the heart-wrenching and soul-expanding experience of attending a memorial service for a girl in my son Liam's class. I'll call her B, and a year earlier, she had been diagnosed with cancer, a battle she lost at the close of 2015.

B was born just 8 weeks before my Charlotte, and I'd met her as a baby-- a baby who was a girl, a peer of my baby girl who had died. When I first saw her,  I took one look and I fled, leaping over chairs in desperation to avoid such a trigger, finding myself in another room with heaving sobs, out of breath and panicky. However, B kept re-entering my world, and at the age of 6 she became an everyday fixture in my life when my son joined her K/1 class. 

For years I watched B grow, and I felt an intense fondness for her. There were other girls present, yes, of course. They, too, were Charlotte's age mates, and I could have easily latched my quiet, private sentiments onto them. But I think the fact that I had seen B as an infant caused me to see her more clearly and realistically as Charlotte's peer. I also knew, from mutual friends, that B had experienced some difficulty early in her infancy, and I imagined that her parents viewed her with a gratitude, relief, and devoted love that I was able to honor. She was Charlotte's peer, but her parents recognized the miracle that was B, and so she was safe. 

It seemed a terrible, awful, and unbearable coincidence when B was diagnosed. I imagined, at first, that she would survive: doesn't it sometimes seem like other people always dodge the bullet? When it became clear that she would not, I could hardly think of it. I did not want to open the box, deeply tucked inside of my heart, that contained the anguish that I once experienced it every day. It would not be my sadness for her, though of course I would miss her. It was knowing what her family would experience, and on a completely different level. What would it be like to have 12 years, and then face death? I could not even contemplate the idea. 

When she died, that box cracked open for a moment, but still I was shocked at my own dissociation from grief. I felt awful, I felt disbelief, I felt horror for her family. But I could hardly get the tears to roll down my own cheeks. What had happened to me? How was it that I had become so practiced in holding back pain that I could barely experience it anymore? 

The memorial service gave me the gift of being able to grieve this beautiful soul, this lively, unique girl, and also mull over my own connection to her, and to Charlotte. Her parents created something so deep, so meaningful with personal readings, music from her brothers, and dozens of stories that brought B right back to life in the room. I know each person who attended, whether 6 years old or 60, left with a strong sense of gratitude for B's life, with admiration for her amazing courage and humor while she was dying, and deep sadness that she was no longer here. 

I was experiencing all those feelings as I began to leave the church, walking down the stairs from the choir loft where I had watched the ceremony. I was full of so many big, huge feelings: among them giggling to myself about the funny stories about B, feeling bowled over by the intensity of how brave she was, and reflecting on how small her family looked to me without her there. Suddenly, I remembered that it was B's birthday. They had waited until this day to hold her celebration of life, and suddenly something clicked in me. 

The box opened, all the way. 

I realized that B and Charlotte began at about the same time. B had filled up all the space in between, she had been there, vivacious, honest, herself, while I had lit candles on 12 cakes where there was no girl to blow them out. I had sang my sad, quiet birthday song to Charlotte with tears rolling down my cheeks 12 times, while  B was out there living. But now she had no 13th birthday to celebrate. With that one thought that those two girls who started out life so differently both had no 13th birthday to celebrate-- the box opened. 

Huge, wracking, heaving sobs overtook me. What could I do? I hurried back up the stairs to the empty choir loft, I dug a handkerchief out of my purse, and I cried in a way that I have not cried for probably a decade. I could hardly breathe. The photos of B at the front, with her wide, joyful grin, suddenly yanked me down somewhere deep and dark. Some element of guilt crept in, because I knew my tears were also for myself, and not just for B's family.  I was taking a moment to feel that desperate, awful sadness that had once consumed me on an hourly, daily basis. It was what her family was feeling, what they were living. The sadness, though also for me, was some sort of connection.

When it comes down to it, I think that anyone who has experienced deep, all consuming, life changing grief has a point of reference for being present with another who is experiencing that same thing. There is a primal, animal way that the desperation for another person and the hopelessness of facing life without them can swallow us whole, leaving us certain that we will never survive the pain. Yet, somehow we do. Somehow we do. 

I am grateful today for the life of B, and for the many, many ways that she brought me closer to my own baby girl. Through her life and through her death. she has continued to bring me back to my original child and my original experience of motherhood. I am also grateful that I have learned over the years to keep my grief in a safer, more manageable place, but it felt strangely fulfilling to have that box flipped open wide that day, to experience and remember what my days used to be filled with and to be aware of how much has changed. 

Thank you, B.