Community Spotlight Series: Lisa Hamilton

1)    Could you share your connection to Empty Arms and how you first discovered this organization?

I met Carol many years ago when we both had young families that happened to be in the same classes at the same school. We found that we had a great deal in common. It was a few years before I understood what Carol did and how she, “made up” her job! I volunteered the first year of the Syrup Stampede and I fell in LOVE with this community! I am an end of life doula and also a bereaved parent and when 1 of the TWO employee positions at Empty Arms needed filling, I was fortunate enough to come on board! Yes, you did read that correctly! Empty Arms has 2 employees in total encompassing 1 full time position!

2)   What motivates you to stay involved?

There are so many reasons! First, Hannah and Lucy are my star babies that I cannot hold like my earthly babies. The work that I am honored to do for Empty Arms helps me feel more connected to Hannah & Lucy.
Next, I was alone in my pain and the toll of carrying that burden caused me 18 years of suffering. When I am bedside with a bereaved family or facilitate a support group, I feel immeasurable gratitude to be of service to them.
And lastly, I hold hope for every single person we serve and there are so many. This community safety net needs all of our connected hands in order to lift up families. I am still making new connections to help strengthen our grasp to one another. It fills my cup to do this valuable work, to say the least.

3)   What do you do for a living?

I currently work with Empty Arms as the Project Coordinator and Development Director; I’m a bedside companion and I facilitate support groups: Twin Loss Support Group &  I co-facilitate the Miscarriage and Pregnancy Loss Support Group. I work far less in my end of life job right now because of concerns for safety with the pandemic. My work brings me into clients’ homes and that is just not possible right now. I look forward to providing that service to families again in the future! I also run mindfulness meditation groups for sexual assault survivors and hope to return again later this year.

4)   How do you spend your personal time and what do you like to do for fun?

Plants and I are inseparable. In my home, the indoors and outdoors gets quite blurry! I take walks in the woods and long, slow runs to process my thoughts. Yoga and meditation keep me grounded. I love to sing and dance and I miss live, raw music so terribly! My teenagers and I are working from home together and they are not psyched about hearing me break out into song or catching me kicking up my heels in the living room to my own impromptu dance party, so that’s fun! I also love to coach Girls on The Run and this March will be my 12th season! My husband and four living children keep me humble, grateful and full of joy. My three boys (24, 21 & 17) nudged me into dystopian & science fiction again (I liked it as a teen) when they were in middle school and I can’t stop reading this genre! My 13 year old daughter loves dogs more than life itself so we have been watching dog & puppy videos all quarantine long and it has been the greatest source of joy and giggly fun! We have an 11 year old fluff named Birdie, who truly is LEARNING NEW TRICKS! Dogs will save us all.

5)   It’s odd to some that we share tears and laughter in this line of work! Any funny stories or anecdotes you’re willing to share?

I recently companioned bedside with a family and the birthing person had just been to the salon to have their hair, nails, and eyelashes done. Hours later they had not expected to be taken by ambulance to the hospital with a baby born too soon to survive. I was holding the baby in my arms and noticed something on his perfect head that seemed out of place. The parent reached over and picked it up and put it in her hand to inspect it. She realized it was a large clump of her eyelash extensions and decided to look in the mirror for the first time in 30 hours. Hysterical laughter gave way to tears and then more laughter. We laughed so hard and took so many ‘Glamour Shots’ while they held their baby boy. We both ugly-laugh-cried right through our masks and down our faces! This parent and I still text these pictures back & forth and all the while, thinking about the relief of laughter amidst such heartbreak.
As a very important aside not to be ignored or forgotten, working alongside Carol McMurrich is pretty phenomenal! You never know when that gal will crush the workday tension by breaking into song and host her own impromptu dance party too! Laughter, song, & dance heals!

6)   What are YOUR HOPES for this year?

I hope for safe face to face time with all the people that I sorely miss without any barriers between us or fears of illness!

Miss You Every Day

Do I miss you every day?

Good parents say they will, they do. They will think of their lost baby, missing son, dead child, each and every day. I don’t know if I do that. I think sometimes I forget. Does it count if you are still a warm spot in my heart, even if I don’t name it? Does it count?

I get busy with your sisters . . . packing lunches for school, making breakfast, socks, shoes, hair, teeth. After I wave them off on the bus I should have time for you, right? But I shift to work, checking email and Facebook. Getting organized. What do I need to do today. And then meeting the bus, library, Brownies, field hockey, . . . I try not to get too busy. I try to remember the lessons you taught me:

Right here is all we have. Right now is all that matters.

I never learned that lesson well. I chafed against it. What about the bills? (The ones I was barely working to pay?) What about saving? And sometimes the right here, right now bogged me down. The dinner and the laundry and the groceries and the messages that need a response …

We tapped into the small cushion we had. We watched it ebb away, knowing that we would not be rebuilding it any time soon.

So much got drained. The small savings Brian had. The savings account I had built for my maternity. Our emotional reserves. The currency between us. That space you filled in my body. The space you took hold of my heart.

I felt the emptiness after you left, but it wasn’t really empty. You’re here but not. You’re missing but always with me—even if I don’t think about you actively. You don’t need my thought. You don’t need me wondering if you need speech. You don’t need me to schedule a dentist appointment for you. You don’t need me to help you figure out your big hurt feelings or settle you when you have “bad thoughts” at night. You don’t need me, but for so long I needed you. I needed to find out how to hold on and let go. I’m still figuring it out. I’m not sure I ever will.

Every morning, I turn off the memory lamp—the last one still working of the three we received when you died. I light it each night as the darkness gathers. It lights our way through the house to the bathroom at night. It stays on a reminder that there was always light, even in the darkest days. I used to have one of the lights in the window. If we went out in the afternoon, I’d light it, even if it was early, because in the earliest days, I couldn’t stand to come back to a dark house. If I forgot, we’d turn the corner to home, and I’d deflate, drained again.

These days, the turning on and off of the lamp is sometimes reflexive. But some days, still, I stop and look at your picture next to it. “Hi, Bud,” I whisper.

I need people to know about late grief. It’s not dramatic like early grief. It’s not (usually) a torrent of tears, visiting the grave, a release of balloons. It isn’t staying in bed or calling in sick or bailing out. It isn’t the exhaustion of the early days or the constant triggers. I’ve gotten to this place where I can talk without crying, where “how many kids do you have?” or “how old are your kids?” don’t drain me. I welcome a chance to remember, a chance to be Henry’s mom. So much has changed. We get to this place we call OK, getting through it, moving on.

Moving on doesn’t mean forgetting. It doesn’t mean all better. It’s more nuanced than that. It’s quieter, more internal. And because we’re supposed to “get over it,” because we’re supposed to stop crying and talking about it, often we do. And because the intensity is less, we stop needing to talk about it every day, blog about it, write about it, just as we eventually stop crying every day. And yet, we’re not done.

What does late grief mean? It’s so much harder to explain. I’m better. I’m whole and always missing something. Henry’s not here and he never goes away. Even if he isn’t at the forefront of each and every minute, even if I don’t actively think about him every day.

Holding Joy & Sorrow Together

By Sara Barry

Light and dark.

Joy and sorrow.

December is a time for these extremes that are parts of the same whole.

Darkness sneaks in early and lingers in December. I don’t mind much these days. I cozy up to the fire, hand the kids headlamps to run outside. I admire the dusky purple colors of the settling twilight.

Eleven years ago the darkness fell heavy. With light already dimmed, these long winter nights were long and lonely. Grief settled harder with the dark and cozy eluded me.

I’d wrap myself in his blanket, the one my nana made with yellow yarn and love. I lit candles, turned on memory lamps. Sit in the blue glow of my computer seeking other stories of loss and love, missing and memories.

Eleven years has brought big change from my first holiday season without Henry. It’s brought two births. It’s brought a growing sense of light and a greater comfort in the darkness. It’s brought new traditions and new ways of experiencing this full time.

And still, this month challenges me, every year different, every year emotionally complex and extreme.

I have learned to sit with light and darkness together. I have learned to hold both joy and sorrow cupped in my hands. I’ve learned that they don’t have to pull me apart, but that both can have their place.

I look forward to the solstice, when we turn back toward light. I look forward to sitting in stillness and quiet as the dark peaks. Days before this my own darkness peaks as we mark another year from Henry’s passing.

I will shut down my computer and silence my phone. I won’t take calls for appointments or show up for basketball practice. I’ll set aside Christmas shopping and my to do lists.

On that day, I will make space for quiet and stillness. I will make space for breakfast with a friend who knows what this day means and that I won’t know what I need until we are in the moment, and perhaps not even then. I will make space for a walk in the woods and a visit to the cemetery. I will make space to sit by the fire. I will make space for tears, and memories and reflection.

I will make space to break open, once again, to the enormity of his life and my loss.

Our life has gotten busy. I get my girls off to school and settle in to work, deadlines to meet, client calls. I bring my girls to piano and Girl Scouts and basketball games in two different places each week. We go to the library and the winter farmers market and the bank. We go and we do and we come home and read and snuggle.

But on this one day, each year, I make space. Even 11 years later, I give this day to Henry. I give it to myself.

I give myself over to the light and dark of this day. I allow for the joy even in the sorrow. I held his life and now I hold his death. And I make space for all of it.

In this season of busy and bustling joy, may you find space and stillness.

In this season when darkness hangs low, may you find peace and light.

In this season of giving, may you give yourself what you need most in this moment.

In this season of tugging extremes may you find a way to sit with the light and dark, hold both sorrow and joy knowing they both need space and both are complete and full.

The Body Knows: How Grief Shows Up

By Sara Barry

“How are you doing?” a friend asked, knowing that May is a charged month.

Mother’s Day is a complicated tangle of breakfast in bed and flowering plants, homemade cards, and immersion in what is with an undercurrent of what was supposed to be. What was and then wasn’t and always is.

The end of the month brings the birthday with nobody to blow out the candles. And while I have a tradition, one I fell into rather than creating deliberately, of tending my Henry’s garden since I can’t tend to him, it is another complicated tangle. Joy for his being. Sadness that he isn’t here. Edges softened over time, like a rock in running stream.

“I’m doing OK,” I say. “I’ve been so busy, I keep forgetting it’s May.”

And it’s true. I’m not deliberately avoiding facing this month, but I’ve been caught up in a swirl of Science Night planning and late evening ice cream, Teacher Appreciation and getting the garden ready.

My mind is busy. I forgot that Mother’s Day was coming, despite the signs by the flower store and the notification in my calendar. Henry’s birthday loomed and I hadn’t bought anything for his garden. I hadn’t looked to see if our neighbors would be home for cake.

My mind keeps forgetting that it is May, but my body knows.

I’ve felt it in the number of times I need to take a deep breath, in and out.

I’ve felt it in the tightness across my back and in the heaviness that settles in my limbs and then lifts a little.

I notice the sharp intake of breath when I see a cardinal dart across the yard. 

I tense at the unexpected mention of a 6 month old named Henry who died from a heart defect in a novel about the flu.

I come to tears easily, whether it’s a video about babyloss moms or talking to my neighbor about her own different, fresh grief.

I find myself on the verge at church for no explainable reason at all.

I don’t say, “I’m having a hard month.” I’m not, but there is an undercurrent. My body knows what month this is. It is gathering energy like a storm moving in. The sky may still be sunny, but you can feel a change in the air, an electrical build up.

Come the end of the month, I will exhale. The pent up energy will expend itself in a torrent of tears or day of hard labor in the garden or it will just fizzle out and fade away like a storm that is pending but passes.

Come the end of the month, my body will relax and move on to June, a simpler month, a safer month. It will relax until the calendar turns to December, and then, even if I forget the date, it will start it’s wind up to the day he died.

The mind may forget, but the body always knows.

Does your body respond to certain dates? How does grief show up in your body?

Caught Off Guard, or Variations on Familiar Questions

By Sara Barry

“And are your kids healthy?”

Thankfully I was still clothed when she asked me, not sitting awkwardly on the crinkly paper at the end of a table with a gown tied in the back and a drape spread over my lap. Even so, the question caught me off guard.

Subconsciously, perhaps I had expected something, but this was a new variation on “Three kids must keep you busy” or “How old are your kids?” or “Boys or girls?” The answers to the latter two are in my medical record, though you may need a little bit of math to figure it out.

So I was sitting on a chair, vinyl padded, I think. The questions were routine for the most part. My myomectomy, c-sections. She puzzled over the way they were written in my record, and I clarified that there were three.

“And are you kids healthy?”

Deep in the bowels of my records, there should be a note that Henry died. If nothing else, a letter I wrote about my experience to help ease the transition to a new OB/Gyn years before, but perhaps when they were copying things that got let go. Or perhaps the person doing intake wasn’t privy to those things or hadn’t bothered to read. It’s a thick packet. Not nearly as thick as Henry’s was, but thick enough.

For her the question is routine, one more thing showing up her screen. A quick yes or no check box. For me the question is . . . charged.

I got really still. I held my breath and then took a deep one. My lips turned in as my brain set up barriers to keep me from lying back in the hospital bed while he was taken away, keep me out of the NICU, the slow tick-tock stillness of the waiting room when he had surgery, the shock of his ambulance ride, the tangle of tubes and cords around him as he turned blue, holding his foot as they tried one last time to save him.

My lips turned in to that pursed place they do when I am holding it together and they caught on my teeth. Tears welled up into my eyes and nose. It’s probably good they got my blood pressure already.

My brain supplies the facts: Down syndrome, heart problem. It fumbles with the word defect and A-V canal, terms that had learned to trip off my tongue. I am out of practice. I pull out pulmonary hypertension, I say he died at 6 ½ months or maybe I round and say simply as a baby.

She says, “I’m sorry” without looking at me.

She fumbles with her keyboard. “It won’t let me enter this.” His death becomes a technical issue to solve. Eventually she is able to start typing. “You said Down syndrome?”

“Yes.” I don’t say the rest. I don’t say died again. She doesn’t need more information. I wonder if died got in there or if they’ll ask about my son with Down syndrome and the heart problem next time.

“My girls are healthy,” I add almost as an after thought. I don’t know if that goes into my record either.

It’s not really an afterthought. I am grateful for their health. People make sure to remind me to be, as if I wouldn’t be, as if, because I talk about Henry’s struggles and about my experience with him that I don’t see how lucky I am. I love their vitality and vibrancy. I feel the rise and fall of their breath when I check on them at night, smile at their laughter and antics. I am aware. I am grateful. I never seem to make it clear that it’s an and. I am thankful each day for their lives and health and I miss Henry. I long for his potential. I wonder who he would be.

She doesn’t notice that I have retracted, that there are tears in my eyes. She doesn’t offer me a tissue from the box hiding behind her laptop. She just asks the rest of the questions and I answer.

Yes, yes, yes, no, yes. I talk about my dad’s high blood pressure and my mom being pretty healthy, taking deep breaths all the while.

It’s been 10 years. It shouldn’t be a big deal any more, right? And day to day, it isn’t. But sometimes a question catches me off guard. Sometimes I have to say it again: my son died.

And ten years later, people, too often, still look away, change the subject, gloss over. We don’t know how to talk about death. We don’t know how to deal with it. I didn’t need to say a whole lot about it. But I wish she had looked me in the eye when she said sorry. I wish we could have paused just a moment to acknowledge that something big had happened.

She finished up her questions. I was polite and wished her a good day as she left. Then before I stripped my clothes off, I grabbed my own tissue, wiped my eyes and nose. Then I put the gown on, ties in the back, and just managed to get on the table before a knock on the door.

There are no more questions about my children. We talk about me. My overall health. Tests I’ve had or hadn’t. My diet. Perimenopause. Fibroids. It was my first time with this provider. It was a good visit . . . and what I remember most was that question.

***

I’ve been back to that office once since this experiences, and there were no surprises this time, no questions that caught me off guard. I’m more adept these days at handling even the surprising questions, but I remember how very hard they were in the first few years.

What questions have caught you off guard? How did you respond, and how did you deal with the emotional surge of the question?

Knowing Hearts, Helping Hands

By Carol McMurrich and Katrina Van Naerssen

It was a warm June day when I got the call, curiously on a day where I had planned to work, but didn't have a dreadfully long to-do list. I was sitting in the office when one of my dearest midwives called from the hospital down the road. I have a family I need you to go to, she said, right now. And I was able to say, I'm on my way. Less than a mile down the road, and I was there.

This couple, they were lovely. Their home was light filled, with a small collection of tiny shoes by the back door, so I knew this wasn't their first. They had only just walked in the door, having come home from the appointment that revealed that their baby girl had no heartbeat. They invited me in, and we retreated into their living room. They sat together on the couch. Katrina was beautiful, glowing. Her belly was round and perfect. It was hard to believe their baby girl would not come home.

These early moments are so dark and sad for me. I know that the family is in shock, yet I also know the worst is yet to come: the birth, the beauty of the time together, and the saying goodbye. I know that they are dumbfounded, thunderstruck by the sudden change in plans that has been foisted upon them. I want to change it. I cannot.

Walking with Kris, Katrina, and their two daughters was a privilege beyond description. The grace with which they welcomed little Annika, and the strength with which they honored their time with her, was humbling. The beauty of seeing the four of them together on the bed, Elodie natural and light in her two-year-old curiosity of her sister, was heart wrenching. As with every family whose life touches mine, I learned from them.

It is my privilege to be able to share with you today the words of Katrina, mother of Annika, who has written about her journey. Hers is one of many stories of the families we have touched over the past year. As an organization, it is hard to put words to the feeling of gratitude we have to be able to provide these families with what they would never have otherwise had: a loving guide, permission, and resources. It is because of you that we can do this.

So today, with my words, and with Katrina's, I thank you. - Carol

When you first get pregnant, your imagination immediately takes over.  You quickly calculate the child’s birth date and you begin to imagine your new life together with that child.  You imagine what they will look like, and how they will sound. You imagine their personality and the many milestones that lie ahead.  Once we made it through the first trimester, we assumed that we were in the clear. Our worries subsided, and we turned to preparation and celebration.  

With our pregnancy at 35 weeks, my husband, 2 and a half-year-old daughter and I were smoothly sailing into the final stretch.  We were washing onesies and prepping our baby’s room. We were reading big-sister books and planning for grandparent help. We had a big yard sale to make room for the baby’s new things.  But then, in a flash, it was over.

“I’m so sorry.  There is no heartbeat” and with those fateful words, our world was turned upside down and changed forever.

I will never forget how bright the sun felt when we left the doctor’s office that day.  How raw and exposed, and utterly betrayed and lonely we suddenly felt. All we wanted to do was curl up in a deep dark hole somewhere.  Here we were - pregnant, the parents of a baby that would be dead before she took her first breath.

In those very first moments, we were referred to Carol and Empty Arms’ Companion Program.  “Would you like to talk to someone?” our midwife asked, “I have someone who I’d really like to connect you with”.  We had no idea what to do. Our older daughter was at daycare; we were supposed to go back to work that day. We desperately wanted to talk to someone, and to talk to no one at all.  It had never occurred to us that this could happen. Our baby girl was due in just a few weeks. Everything had been going well…

Like the angel she is, Carol from Empty Arms showed up at our house within hours of us learning of Annika’s death.  Carol listened to our story, shared her own experience of loss, explained to us what would happen next and what options we had.  She explained that we could take as much time as we needed before checking into the hospital for delivery; that we could spend time with Annika at the hospital after she was born.  We could arrange to have our older daughter and other family meet Annika; we could have pictures taken if we wanted to. So many things to think about…All so foreign and so very scary.  Carol assured us that we would be OK; that there was no right or wrong way to do anything related to the upcoming birth and to the upcoming goodbyes. She would be there for us every step of the way.  And she was. That night we picked up our daughter from friends, and took our first steps together into our new reality.

Two days later I gave birth to our baby Annika.  She was 5lbs, 18 inches and so beautiful. She had dark hair, round cheeks, a face like her sister’s and perfect little fingers and toes.  A simple knot in her cord had taken her life. We were able to spend a full day with her. Holding and rocking her, reading her books and singing her songs.  Our older daughter came to meet her and gave her the stuffed bear she had picked out for her little sister. She touched her sister’s soft cheek and asked us a lot of questions.  We sang Annika Happy Birthday and took family pictures together (thanks to another Empty Arms connection – Erin who volunteered her time and took amazing pictures). Her grandmothers were able to come to the hospital and hold her.  For a moment, in our own strange way we were together as the family of four that we had imagined.

Carol was there alongside us through it all.  Giving us the strength and courage we needed to put one foot in front of the other.  She made 3D molds of Annika’s hands and feet for us to take home and later surprised us with a gorgeous photo book that she had made for our living daughter.  The book lovingly explained that our daughter was still a big sister - she just had different big sister jobs to do now.

These memories and mementoes are some of the most precious things we have.  They are what got us through those early days back at home and out in the world, and that keep us connected to our sweet baby girl today, now nine months later.  We are now regulars at the Empty Arms support groups, as we navigate the forever changing landscape of grief and gratitude, loss and acceptance.

My husband and I regularly reflect on how incredibly grateful we are to live where we do, to have Carol and the Empty Arms Community here, cheering us on and offering a safe and loving space when we inevitably fall.  Helping us get back up when we do. What would we have done without Carol and Empty Arms? Would we have spent time with Annika? Would we have introduced her to our older daughter? Taken pictures with her that we so cherish now?  Would we have any tangible memories of her to hold on to? Who knows… Likely the answer is no, or at least not to the same degree. The thought of that terrifies us. It is those experiences, those memories, those mementos, the steady support of Empty Arms that is getting us through.

Losing a child is one of the worst things any parent can ever experience.  It can be so lonely and so dark. Knowing hearts, helping hands, a safe and loving community are what get you through.  Empty Arms has been, and continues to be, instrumental in providing this love, support and community for our family. While there is not a day that goes by that we do not wish Annika was here with us, we cherish the limited time that we had with her and the many gifts that she left us.

Written by Katrina van Naerssen, with help from Kris van Naerssen

Finding Support When You Need It

By Lindsey Rothschild, Reposted from her blog Lindsey's Guide

Living in a community is not only about the good times. What can be the most telling is the support your find during the toughest times. Having moved here to start a family, we were overjoyed when I became pregnant with twins in the summer of 2010 (after 2 years of trying unsuccessfully in NYC). We were nurtured through this process first by the excellent  midwives at Holyoke Midwifery Care and finally through science at Baystate Hospital. However, our excitement turned to despair when we learned at our 20 week ultrasound that both of our babies were afflicted with genetic abnormalities that were “incompatible with life”.

Somehow the Empty Arms Bereavement Support pamphlet found it’s way into my hands. I nervously called the number one evening expecting to leave a message. Instead, the loving voice of Carol McMurrich, Empty Arm’s founder, answered the phone, listened to my story, and immediately I knew that I wasn’t alone. That began my relationship with Empty Arms. The support groups and community that Empty Arms offered us was our lifeline through that devastating time. We carry the love and loss of our twin daughters with us as well as the loving and supportive community of Empty Arms.

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.

How many kids do you have?

By Sara Barry

by Sara Barry

Lights flashed and the disco ball made shapes on the floor. Kids shrieked and balls and bins clattered. Typical bowling birthday party.

“I don’t know you manage with three,” said one mom of two. “I thought I wanted three or four until I had kids.”

The conversation unfolds with “You get used to what you have” and “Two is good for me” and “I always thought we’d have three.”

I don’t chime in. I don’t say, “I always wanted two or three. Three really, but as I got older and hadn’t started yet, two seemed more likely.”

I don’t add, “I wanted two or three and somehow I got two and three.”

I have three children, but in so many ways, I get only two.

***

A few weeks later, we’re at the lake for my girls’ swimming lessons. I point my little girl to a mom nearby with somebody in the same class and my big girl swimming to the side.

“So you have just the two?”

Pause half a beat.

“Yes.”

***

How many kids do you have? Since the day Henry died, that has been a hard question. He was our first, so I had one but none. I was not the person I was before he was born, but I didn’t fit in with other moms either.

A year later, my older daughter was born, and I re-entered the world of moms with kids. But the questions, How many kids do you have? Is she your first? Do you have other kids? still stymied me.

I know I am not the only parent who has lost a baby who struggles with these questions. There is no one answer. There is no right answer.

“How many kids do you have?” might be simple enough but for the follow up: “Oh, how old are they?”

I recently joined a writing group. We’re all moms, and one of the getting to know you questions was “Tell us how many kids you have and how old they are.”

I have three. 8, 6, would be 10.

And yet, “So you have just the two?” Yes.

Both true in their way.

I suppose I can explain my thinking sometimes. For the writing group, I’m going to write about Henry. I’m going to write about babyloss. He’s going to come up. That day at the lake, the meeting was likely a one-shot deal and I was tired. I wanted the short answer, not the essay answer that the question seems to require.

***

I give the full answer sometimes because I need to claim Henry. I need to keep him present in this world.

I give the full answer sometimes because a mom of three, one who died is who I am.

I give the full answer sometimes because I’ve learned that sometimes when I give the “three, one died as a baby” answer, I open a door for somebody else who may have an unseen child too. I open the door for people to say, “My sister’s baby was just stillborn” or “My best friend’s baby is dying.” And “I don’t know what to say to her?” or “What can I do?” And when that door opens, it pours light in on all the hidden losses, the tiny, powerful lives unseen.

***

I have three kids. My daughters are heading into first and third grades. My son died as a baby.

I have three kids, but I’ll only ever know what it is to have two.

I have two daughters that I love to the moon and back and a son I love and miss always.

How many kids do you have? Three, or just the two, depending on the day, my mood, the asker, the reason for asking.

It should be a simple question. It isn’t a simple answer.

I still pause when I get the question. And sometimes, some variation—How many kids did you want? How many do you have? How old are they?—still catches me off guard.

How do you answer the question: How many kids do you have? Would you answer differently here than you would at a store or the park? Do you have a set answer or do you decide each time what to say?

Still not over it?

By Sara Barry

In the lead up to Mother’s Day this year, I almost forgot it was coming. Almost. But my body knew what was coming even if I didn’t acknowledge it. On the day before Mother’s Day this year, I broke.

Anger seeped up. And sadness. This sense of missing that comes for Mother’s Day. It astounds me with its intensity. Every year.

“Focus on your girls. Enjoy them. Cherish them.”

“Count your blessings.”

I’ve heard these things again and again.

And I do. I look at pictures of them as babies, and I’m amazed at the strong, spirited people they have become. I love that they still want me to sing their songs at bedtime, the ones I made up when they were newborns.

I feel the warmth of their bodies, the solidity of them, the radiance, as we snuggle together to read. I marvel that they are both reading on their own.

I watch them run. I snap at their bickering. I spend time in their classrooms at school. A big hug from one of them or a quiet smile can change the tone of my day.

We sit together at dinner and tell three good things about our days. We count our blessings.

I see my blessings. I open expansively to my girls. I notice the details, the asymmetrical color of the eyebrows, the mole I always think is a tick, the gusto of one in a school show, the relieved and fully dimpled smile of the other after a presentation is over.

I focus on my girls. I enjoy them. Cherish them. I count my blessings.

Most days, Henry is there too quiet inside, like a sleeping baby who needs no attention. He’s a picture on the shelf, a short “Hey, bud” as I switch on the light in the morning.

Most days, from the outside it looks like I’m “over it.” Most days what it looks like is true—even to me.

But I know it’s not over, it’s through. You get through the worst of it. The darkest days, the heaviest grief. Some people would tell you it gets better. Others would say it gets different.

Either way, you come to a point where you don’t break down on each trip to the grocery store, where you don’t wake to a weight on your chest that gets heavier as you become more alert, where a baby brings a smile not an ache. You feel that smile rise all the way to your eyes. You feel the sunshine on you face and it penetrates all the way through you.

You open more and more to joy. And that joy is pure and full, even as it sits squarely beside grief. You simply manage to hold both.

And then one day you realize you don’t have to hold it all the time. It’s still not gone. You can put it down, but you don’t control it.

When a thunderstorm is approaching, our dog starts to pace and pant. He’s restless and anxious. The lead up to Mother’s Day was a little like that. Saturday before Mother’s Day, anger bubbled up in me, and tears of sadness. I felt tender and on edge, waiting for the storm to come, for the storm to pass.

“Aren’t you over this yet?”

We’ve all heard some variation on this question or an admonition to “move on” or “count our blessings.”

Most of the people in my life have been respectful of my grief process. They’ve understood that my grief wouldn’t end in a year or even two, that it didn’t go away with the birth of another child. Even so I’ve gotten nudges to look at the positive.  

But on the Saturday before Mother’s Day, I was the one asking the question.

“Aren’t you over this yet?”

Henry would have turned 10 at the end off this month. I’ve been grieving his loss for almost as long. And most days now, that looks pretty smooth and calm. Most days it looks like me smiling, on the inside as well as outside. Most days it looks like me eating breakfast with my girls or making up a story in their beds.

It looks like spelling words and “yes, you can go ride your bike.” It looks like coffee and a journal in the early hours of the day and tick checks and songs at bedtime. It looks like volunteering in classrooms and going out for ice cream.

It looks like a busy, full life. And it is. All of that is true.

And yet some days, usually around Mother’s Day and his birthday and around the day he died, I still break. And I ask, “Aren’t you over it yet?” Not because I expect to be, but because I want to be.

I don’t want the undercurrent to build in me in these months, my life an earthquake waiting to happen as the built up tension on the fault line of grief shifts.

But that tension comes unbidden, and often under the surface. That tension builds. I can’t control it any more than I can control a late frost like the one that killed last year’s peaches. I can’t control it any more than I could make Henry’s breathing easier or stave off infection.

That tension builds, and then I crack open. I snap. I cry. I release. And I settle back in to a life that is full and beautiful, a life where I cherish my girls and count my blessings, a life where one of my babies is always missing and I know that missing will bubble up again in time.

When Henry’s birthday passes this year, I will exhale deeply. And settle back into that life where love and joy and day-to-day annoyances reign. Until the next time, the anniversary of the day he died, some milestone I didn’t anticipate. Then tension will grow again and release. It is simply part of the rhythm of my life now, like it or not. Ten years later, you could say I’m still not over it, or maybe that this is what over it is.    

Mother's Day

Beth made some small edits to this beautiful poem, "For Those Who Hurt On Mother's Day," to focus on baby and pregnancy loss. We hope it speaks to you. Thank you to John Pavlovitz for these compassionate words. 

Mother's Day.

For many people that means flowers and handmade cards and Sunday brunches and waves of laughter. It means celebration and gratitude and warm embraces and great rejoicing. It means resting fully in all that is good about loving and being loved.

But not for some people.

But for some it only means tears.

For some it just hurts.

In the hearts of many, this day is a bitter, unsolicited reminder of what was but no longer is, or a heavy holiday of mourning.

Maybe it is such a day for you.

It might bring with it the scalding sting of grief for the emptiness around a table.

It might be an annual injury you sustain.

Consider this a personal love letter to you who are struggling today; you whose Mother’s Day experience might be rather bittersweet— or perhaps only bitter.

This is consent to feel fully the contents of your own heart without censorship or guilt or alteration.

If you are hurting, then hurt.

May you feel permission to cry, to grieve, to be not alright.

May you relieve yourself of the burden of pretending everything is fine or faking stability or concealing the damage.

May you feel not a trace of guilt for any twinge of pain or anger that seizes you today, because it is your right to feel.

Above all though, may you find encouragement even in your profound anguish.

May you find in your very sadness, the proof that your heart though badly broken, still works.

Let the pain you are enduring reassure you that you still have the capacity to care deeply, despite how difficult it has been.

See your grief as the terrible tax on loving people well, and see your unquenched longing for something better as a reminder of the goodness within you that desires a soft place to land.

If on this Mother’s Day you are struggling, know that you are not alone.

Let them be hope packaged and personally delivered to the center of your heart, and may they sustain you.

In this time of great pain, know that you are seen and heard, and that you are more loved than you realize.

Be greatly encouraged today.

A Pastor and the loss of his child.

The following sermon was given during Lent of 2016 by The Rev. Nathaniel S. Anderson - Pastor of Church of the Epiphany-Christ the King in Wilbraham. Pastor Nathaniel and his wife Carolyn Starz are the proud parents of Inga, born February 2017 and James, stillborn at 34 weeks in November 2015.

As a part of your seminary training, Lutherans and Episcopalians (and pretty much every stripe of Christian) spend one summer as a hospital chaplain. Clinical Pastoral Education, or CPE as it is called, is a bit of baptism by fire - you’re thrown into patient rooms with nothing but a prayer book and a name tag. As the low chaplains on the totem pole, your first unit of CPE usually means being on call once a week during the overnight hours. You sleep in the hospital, usually with one eye open, as you wait for the pager to wake you from some very poor sleep. I spent roughly a dozen nights on call and I saw everything from sudden deaths and traumas to an urgent call from a nurse in the Emergency Department who was convinced a patient was possessed by the devil. Literally 5 minutes into my first ever night on call, I walked through the doors in my collar, and was immediately asked, “Father, would you please perform an exorcism?” My classmates still laugh about that one. Despite quickly becoming experienced at handling intense situations, I was still anxious just about every night I was on call. Each and every night I prayed the same prayer, “Please God, don’t let a baby die tonight. There’s no way I can handle that. I won’t know what to say.” I never expected that one day I would be standing over Carolyn’s bed after we lost our son James, facing a just-jostled-from-sleep chaplain intern confronting that very situation.

Everyone knows there are certain things you just don’t say when a baby dies. Especially as the chaplain. Silence is preferable to easy answers or saying ‘something.’ I’m pretty sure every chaplaincy department drills that into you on the first day. And yet early that morning, the chaplain that met us apparently didn’t get the memo.

“Well,” she said, “Though we can’t say how, we know that this is a part of God’s plan.”

Normally, when a chaplain utters such a simplistic and insensitive platitude, those on the receiving end rip them apart. And yet, seeing her discomfort, the deer in the headlights look in her eyes, her complete inability to do or say anything else, Carolyn and I could only feel sorry for her. This chaplain was completely overwhelmed and didn’t know what to do. And I’m almost certain if I had been in her shoes during my first year of seminary, I wouldn’t have done any better. Ideally, I would have just kept quiet. But I don’t know.

When I first came back from my leave of absence, I said that it would be a while before I could talk about what happened with James. And quite frankly, I’d rather not talk about something so raw and painful. But with this morning’s Epistle from 1 Corinthians, I feel compelled to address this. Because, unfortunately, these words from St. Paul are so often misunderstood and used to perpetuate incorrect and unfaithful interpretations of how we deal with tragedy. This reading brings to mind several unhelpful and grossly incorrect sentiments. These include:

“God is testing you.”
“You must have done something wrong and are being punished.”
“Everything happens for a reason.”
And, “God won’t give you anything you can’t handle.”

Most pastors have a very specific theological term to describe these type of sayings:

Bullshit.

“God is testing you”

First, I’d like to address the notion that God tests or punishes us. Jesus himself dismisses these claims out of hand in our Gospel reading. Jesus recounts a couple of recent tragedies - Jews that were killed by Pontius Pilate, as well a freak accident - the tower of Siloam falling and killing eighteen innocent people. The common thinking at the time was that such events were not accidents or simply the actions of an evil man, but rather were retribution for some affront against God. Jesus asks the crowd, “Do you think that they were worse offenders than [anyone else]?” Jesus decisively answers his own question, “No, I tell you.” Jesus is clear - such tragedies are not punishment for sin, but rather death is an inevitable reality of our existence. In addition, we need only look at Jesus’ temptation in the wilderness, our reading from two weeks ago and a central theme to our Lenten observance, to address this notion that “God is testing you.” Jesus is brought into the wilderness and tempted, not by God, but by Satan. And when the Devil encourages Jesus to test God, Jesus replies decisively that we are not to put God to the test. While events and issues in our lives may test our faith, that is in no way the same as God himself doing the testing.

“God won’t give you anything you can’t handle”

Next, and somewhat related, the middle part of 1 Corinthians 10:13 may bring to mind this trite expression. Paul writes, “And he will not let you be tested beyond your strength.” It’s important to note that this tangental section of 1st Corinthians comes about when Paul is discussing one of the many controversies in the church at Corinth. Specifically, is it ok to eat meat that was previously sacrificed to idols. Paul is describing the temptation to eat food that is not kosher. This is far from a struggle with crushing adversity. It also must be said that Paul had nothing close to our modern understanding of mental health — no one was overdosing.  And when you consider all that Paul did not experience — how privileged he was as a Roman citizen, how he wrote these words before enduring his most arduous trials, we must consider the obvious possibility that Paul was just wrong. Never let anyone tell you that “God won’t give you anything you can’t handle.” Because it isn’t God who causes us to suffer, and there are indeed situations, circumstances and illnesses that are far beyond what any one person can reasonably be expected to handle. If you feel overwhelmed and without hope, ask for help. Seek treatment. Look for support. This is not evidence of a weak faith but rather a courageous step toward healing and wholeness.

“Everything happens for a reason /
It’s all part of God’s plan”

And of course, this unhelpful sentiment uttered by that chaplain. Such a view implies that God wanted our son James to die. That God wants children to go hungry, and cancer to kill and addiction to ravage. All to fulfill some greater purpose. Brothers and sisters, I do not believe in that God. Instead, I believe in a God who takes all that is evil and wrong in our world and transforms it into something good. I believe in a God that took something as horrible as the death of Jesus on the cross and transformed it into the means of our salvation. I believe in a God who promises that the dead will be raised, that war will cease, that the hungry will be fed and the poor lifted up. The Easter promise is one of redemption — of God transforming our world and our lives. The work of our Lord Jesus, who, as our Episcopal Presiding Bishop Michael Curry says, “Will change the world from the nightmare it often is into the dream that God intends.”

Those who have been there

Finally, I would be remiss if I didn’t hold up the beginning part of verse 13. “No testing has overtaken you that is not common to everyone.” This has been one of the most striking realizations following James’ death. As horrible as the experience has been, we are not alone. I have found great support in the nearly dozen women within our very parish who have suffered a stillborn loss. And many others who have struggled with miscarriage. Beyond this specific type of loss, I’m amazed when I look around this church and see so many who have lost a spouse or a parent or a child. Amidst the fog of our grief, I wonder, “How do you keep going? How have you found that ‘new normal’ in your life?” I have heard from so many of you who know exactly what we’re going through, or who have experienced something equally as devastating, and heard that, “It gets better. It takes a long time, but it gets better.” And I find great hope in that. That though death and loss and suffering are an inescapable part of our human experience, that somehow, and by the grace of God, we move forward.

The chaplain who met with us in the hospital didn’t know what to say — and she didn’t need to say anything. Sometimes there is nothing you can or should say. The death of our son continues to be a struggle for us. When I preach words about the hope and promise of God, at times I believe them stronger than ever — and at other times I’m preaching to myself and need to hear these words as much as anyone of you in the pews. But in many ways, I’ve come to the realization of my ultimate and overwhelming dependence on the Gospel. How I really need to believe this stuff. Really need to place my hope in these promises. Before this, life was easy, I had never suffered any major setback, it was easy to be happy and carefree. I can no longer say that. Like so many of you I have suffered and cried out to God in despair. My faith has been tested. And yet I know that it is not God who tests me, but rather God who stands by me and supports me. God who hears my questions and my anger and my praise. God who promises that at the last day, our beloved James, and all of us, will know God’s ultimate redemption. Amen.

Our Stories: Our son, Cameron Brooks LaValley

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

Tell us about you.
I am a 46-year-old father of three, with one more on the way. My wife and I lost our son Cameron at 38 weeks in between our second and third living children. I have been a police officer for 18 years.

Tell us about your baby or babies. What do you want people to know about them? 
Cameron Brooks LaValley was stillborn on July 5, 2013.

How did your baby and your grief journey change you as a person?
It made me realize what me and my wife could get through together. It made me understand how incredibly strong my wife is. I never needed reasons to appreciate and love my family every day...our experience just reenforced everything I had been doing. A year after our loss, I had several experiences involving anxiety attacks. It led me to a place where I discovered many things about myself, good and bad, but things that have made me a better person, husband and father. It made me slow down and live in the moment more than I ever had.

What was the most important way Empty Arms offered you support? 
It gave me a connection with others who have experienced loss. It supported and did not judge the ways in which we chose to incorporate the loss into our lives. It helped us feel less lonely and gave us a resource that allows us to grieve and celebrate in many different ways.

Our Stories: Our daughter, Emma Elizabeth Dias

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

Tell us about you.
My name is Kate Dias. I am a registered nurse, born and raised in the Pioneer Valley.  My husband (Jon) is a teacher, also born and raised in the Pioneer Valley.  We are the parents of two daughters, one who is with us and one who is not. Our missing baby remains in our hearts and is very much a part of our day-to-day living.

Tell us about your baby or babies. What do you want people to know about them?
Our first daughter, Emma Elizabeth, was 6 lbs 4 ounces, 20 inches long. She had a perfect little nose, flawless skin, big hands and feet, and a little crooked toe on each of her feet. She barely had any hair, just a little bit of peach fuzz that was kind of reddish in color. She was due December 17, 2014 and had been a very active baby in utero. I used to joke that the first thing I would do was grab her feet to get a good look at the weapons she used to kick my ribs.  I went into labor December 7, labored for 28 hours, and in the morning of December 8 things inexplicably and unexpectedly changed. Emma had been handling labor “perfectly,” but then she didn’t. I was rushed to the OR for an emergent c-section but Emma died before she could be delivered. We were able to hold Emma and have her body with us for 38 hours after she was born. That was instrumental in our grief journey.  Those are the moments I cherish the most with her.  I was able to spend time dressing her, holding and kissing her, talking to her, and just feeling her close to me and in my arms.  I didn’t realize it at the time, but that was so incredibly important and really shaped the memories of and connection I have with her today.  Emma’s grandparents, uncles, aunt, and extended family members were able to come see her, hold her, and show her how much she was and is loved. We had Emma cremated and have her ashes in a beautiful glass urn. We were able to receive hand and foot castings, ink handprints and footprints, and professional photographs of our baby. We display our Emma mementos and her urn in an area of our house dedicated just to her. We also have some really beautiful photos of Emma sprinkled in rooms throughout our house. She is very much a part of our daily lives and is mentioned daily in some way or another. Emma has shown us what truly matters in life.

Our second daughter, Grace, was born April 2016, 17 months after Emma was born. Grace came sooner than expected, but much to my relief she was born alive and healthy. She was 6 lbs 8 ounces and 19 inches long. We chose the name because we felt like she was a gift of grace during our grief. Unlike her older sister, Grace had a head full of wild hair.  She looked a lot like her older sister, even having the crooked toe on each foot. We had some feeding issues immediately after birth, and Grace developed jaundice and required light treatment for it, but everything eventually got back on track.  I remember asking why things had to be so challenging after her birth. Hadn’t we already paid our dues? I felt like we deserved an easy road after what we had already experienced with Emma.  It was frustrating.  Also, I wasn’t ready for the comments people made assuming Grace must make Emma’s death a little easier to deal with.  That angered me the most.  Grace is our second child--a continuation of our family.  What I wish the most for people to understand is that although she followed Emma, Grace is not a replacement for the baby we lost.

How did your baby and your grief journey change you as a person?
Emma’s arrival and her death have changed my perspective on life. Certain things that once bothered me now seem insignificant. Material possessions now have no meaning.  I also feel like I have little to no sympathy for people who choose to create and focus on drama that they willingly create for themselves.  Conversely, what I have found is deep empathy for those who are experiencing terrible things that they have absolutely no control over.

Another way I am changed is in my ability to give any of myself to other people.  My job requires an ability to provide compassionate care and support to patients and their families.  It requires a lot of energy and a certain amount of emotional reserve to tap into when need be.  It was particularly difficult for me to provide emotional support to anyone (family, friends, or patients) in the first year after Emma died. It was hard to give to others when my own emotional reserve was depleted. It has changed somewhat over time, but I find it sometimes is still hard.

Is there a way that you can pinpoint a change in your healing and grief journey because of your relationship with Empty Arms?
I know that I felt like I had been dropped into this deep, black abyss the day Emma died. Everything that I thought was my life now looked completely different. I remember being in my hospital bed thinking, ”I am supposed to live after this?”  Any thoughts of healing or putting a shattered life back together seemed insurmountable and impossible. Our first contact with Empty Arms was through their companion program, when Carol came to our hospital room the evening of the day Emma died.  She introduced herself, sat down next to us, shared her story, and shared with us the ways Empty Arms can help. I don’t remember what exactly she said, but I remember how it made me feel, which was less alone and hopeful that I could maybe, someday, be in a place where I, too, would be a survivor. It meant so much for someone to come into our room, look at our baby, and see past the fact that she was dead.  Carol commented on her little face, and how beautiful she looked. She validated our baby’s existence. I could see that I  was facing was painful and hard road, but there was someone who could hold onto the hope that I would eventually be living a meaningful, functional life again, even though I felt like it could not  possibly exist.  

The Empty Arms support groups have been instrumental in my healing as well.  It is healing having a space where I can talk about my daughter, not be judged, and say the things about baby loss that my non-baby loss friends could never relate to.  Coming into a group and sharing my feelings and experiences, then having other people in the group share that they have had similar feelings or experiences has helped normalize a lot of the ways grief affects me.  

Another way Empty Arms helped was during my subsequent pregnancy with Grace.  I was terrified throughout the entire pregnancy. I was constantly waiting for the other shoe to drop, so to speak.  It felt like death or tragedy was right around the corner.  I had no pregnancy milestone to pass where I could take a deep breath and think, “We’ve made it farther than we did with Emma.”  The only time this pregnancy would be different is if Grace was born alive.  I participated in the Subsequent Choices support group with several other loss parents. Having that space to voice my grief for my dead baby and the tempered excitement over our new baby was instrumental in helping me make it through the pregnancy.  Many non-bereaved people I knew couldn’t understand why I was worried or so anxious about this pregnancy. Someone actually told me, “I have never heard of this [meaning stillbirth] happening twice.”  Yes, it does happen, and yes, I was worried about it.  Many of the other people in the group worried about it, too. We all had common fears and feelings regarding our subsequent pregnancies. It was helpful to have that support.

In what way do you think your connection with Empty Arms and its members has reached outwards to impact other people in your network?
One of the ways Empty Arms has allowed us to reach outwards and affect others is by allowing us to have a fund in our daughter’s name that is designated for a specific use.  In lieu of funeral flowers, we asked that donations be made to Empty Arms. We didn’t have a specific plan for the funds at that time, other than we wanted to give back to an organization that had been helping us from day one.  A few months after Emma’s funeral, Carol talked with us to see what we would like to have the donation money put toward.  Her thoughtfulness and willingness to incorporate us into the decision making was a huge gift to us.  My husband and I decided to create the Emma Dias Fund (or Emma’s Fund) to serve two purposes.  The first is that we really want to help cover costs of the photography printing and delivery for families.  Our personal experience with this was hard. We had a few hoops to jump through when we tried to get photographs printed for Emma’s funeral. In between crying and lying in bed waiting for the days to pass, it was very difficult to make phone calls or try to get things sorted without outside help. My husband and I decided we wanted to make it easier for families to have that type of service available (if a family feels like it would be helpful to them).

Our second purpose for the fund is to help educate nurses on compassionate caregiving regarding perinatal loss. Nursing education is something near and dear to my heart, and I felt like providing this education to future nurses would be valuable to both the nurses and their future patients. The hope is that all local nursing schools will make space for this lecturing. Right now there are several schools who are utilizing this service. In addition to nurses, Emma’s Fund recently helped support education to OB-GYN residents at an area teaching hospital.   

We were able to create Emma’s legacy, which we hope will help our community and those who are thrust into the club no one wants to be a part of.

What else would you like to see Empty Arms accomplish? How do you envision the organization could make that happen?
It saddens me to know that there are some area hospitals, OB GYN practices, and other medical facilities that do not utilize the services provided by Empty Arms. Whatever the reason, it is important that these services be available for bereaved families. It was really so important to my healing that someone came to me, in my hospital room, on their own time, to offer their help and guidance on the worst day of my life. The support continued through the following weeks, months, and now years.  To not be aware of this organization and its resources is a real disservice to our entire community.    

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 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.

Reminders.

For our families, the world is filled with reminders that they are not parenting. Sometimes that reminder is a pregnant woman passing on the street, or a child at a grocery store. Other times, the reminders are at home, making daily life complicated, exhausting and somber.

One day, father of C.C. and our community member, Ryan, felt compelled to document the changes in his home that were not. The electrical outlet uncovered. The stairs without a gate. The pantry without baby food. The car without a car seat. The cabinet door without a safety latch. A night stand without a baby monitor. Each of these serve a marker of loss.

Empty Arms offers a safe space for our families - free from reminders and full of support. Wherever you are in your healing journey, we welcome you. Thank you for sharing these with us, Ryan.

C.C.

Ryan and Katie during their pregnancy

By Katie and Ryan

Early pregnancy loss can be an especially isolating experience. Society tells us not to share that we’re pregnant until the end of the first trimester, as if it is some magical threshold after which nothing bad can happen. (For the record, Empty Arms is full of grieving parents who can tell you that’s not the case.) But for those of us who have had something bad happen during the first trimester, it becomes that much harder to share the news of our loss, often leaving us to mourn in silence.

When we said goodbye to “our little Chocolate Chip” nine weeks into our pregnancy, two days before Christmas 2014, we were devastated. We weren’t ready to leave the house, let alone celebrate anything, but we also weren’t ready for all the questions that would invariably come our way if we just cancelled. We didn’t want to ruin everyone else’s holidays either, so we told only our siblings (to help us deflect attention when conversations turned in our direction) and slogged through all the scheduled celebrations. Neither of us remembers much of those celebrations. Still in shock and unable to fully grasp the reality of our loss, it felt like we were sleepwalking.

A month later, we attended our first local (Connecticut) support group meeting for people who had lost a child. This group was full of compassionate, supportive people who had also suffered loss, but at times it was painful to listen to others talk about how something like a picture of their child, a memory of their son, or one of their daughter’s possessions would trigger them. It hurt because we didn’t have any of these things. We didn’t have any objects to hold onto, no pictures of our child.

After hearing all of their gut-wrenching stories, we felt overwhelmed. Even as we witnessed their grief, we felt envious of the time they’d had with their children. We felt inadequate to explain the depth of our own loss. We felt resentful that we felt we had to explain that our loss was just as real.

After a couple meetings we decided to look for a support group with a more specific focus. Even though we live an hour’s drive from Northampton, we made the trip to our first Empty Arms meeting in March. The Miscarriage Support Group was exactly what we needed. These were people who fully understood that our loss can seem invisible to the outside world. Our loss was full of hypothetical moments — watching her grow, celebrating birthdays, helping her learn her ABCs, taking her for rides in a running stroller, making Halloween costumes, driving lessons, prom, college graduation, her wedding day — a whole life with our child. We were mourning the loss of our very real child. We were mourning the future we pictured with her.

For the first time since our loss, we left that evening with our hearts feeling a little lighter. We felt heard. We had found people who truly understood our loss and could help us on our grief journey. We no longer felt alone. We’ve been back every month since.

The Empty Arms community understands that grief is an ever-changing journey that doesn’t always look like sadness. There are plenty of tears, and anger, and depression, but there are also times of lightness, with smiles and laughter. There is time to hold our children in our hearts.

They hear and understand where we are in our grief journey because they’re right there with us now, or they’ve been there at some point during their own experiences. They don’t judge us. They don’t try to fix us, or minimize our pain. They don’t say things like “You can just try again,” “Everything happens for a reason,” or “It’s probably for the best.” And we can be there for other bereaved parents as they share their experiences.

Although we don’t live in the area, we very much feel a part of this community and are glad to have found them.

Introducing our Bilingual Peer Companion: Yahayra Luciano

waiting at the operating room door

When they wheeled Yahayra out of the operating room, her tiny, 4 pound, 10 ounce baby lay on her chest, bleating like a newborn lamb. Her friends and family-- numbering close to 20-- were gathered around the door of the surgical suite, and when baby Zady let out her first audible cry, the adults all gasped in unison and broke into enormous smiles. Laughter and coos began to echo down the hallway as mother and baby were wheeled down to a postpartum room, and excited chatter began to replace the hushed silence that preceded those operating room doors opening. What would follow was truly magical. 

I first met Yahayra nearly a month before Zady’s birth. At that time, she was seven months pregnant with a baby girl she knew would not survive. It was the first time I’d ever met a mother during her pregnancy with a baby who would certainly pass away. When Yahayra had gone for her 20 week anatomy scan, the ultrasound had shown that her baby girl suffered from anencephaly, a rare neural tube defect where a major portion of the brain fails to grow. Babies with anencephaly sometimes live for a short time, but they also frequently pass away in utero or die during the delivery. Mothers in this situation are always given the option to medically interrupt the pregnancy, either through early induction, or a medical termination through a surgical procedure. Because babies with this diagnosis can not survive, this option is often encouraged by health care providers. However, Yahayra felt compelled to spend as much time as she possibly could with her daughter.  So onward she marched, her belly expanding-- patiently explaining to her two older children and numerous family members about Zady’s unique condition.                      

Over the weeks as I met with Yahayra we spoke of her fierce love for Zady, and we laughed together as we watched little Zady’s feet poke Yahayra’s expanding belly. We shared the hope that Zady would be born alive and we would all get to spend some time with her before she died. During our visits we also made plans for how we would capture as much of Zady’s life as we could. Right away, we made plans for a belly cast (thanks to Karen Kurtigan) and prenatal photographs (Thank you, Erin Long). We brought Yahayra roses, her favorite flower, and helped her to create a birth plan that felt just right for her. Yahayra knew that when Zady was born, her goal was for a peaceful time together. Sadly, there was no way to save Zady’s life-- her brain was not formed enough to sustain her for the long term. It was Yahayra’s goal to hold her daughter and be with her while she died peacefully. A sad, dreadful, and awfully brave goal.                                     

Yahayra was scheduled to be induced on Monday, April 4, at 36 weeks gestation. I can hardly imagine what it was like for her to anticipate that date. Her body was essentially keeping Zady alive and stable-- delivering to her all the nutrients and oxygen she needed. There was no telling what would happen to Zady when she was born, if she even survived the birth. For Yahayra, to deliver her baby was to hasten her death-- an impossible predicament. Yet she also knew that for Zady’s birth to be induced while she was still alive increased the probability that she would be able to spend time alive in her mother’s arms. So onward Yahayra marched, hands clasped around her ever-growing belly, facing an impossible future yet head held high. 

Yahayra smiling through labor

Yahayra’s water broke early in the morning of Sunday, April 3. It was as if her body knew it was time-- she had been in countdown mode for so long, and she was ready to go. She came to the birth center and was greeted by a warm, supportive staff who had been anticipating and preparing for Zady’s birth for weeks. They settled her into the largest birthing suite, right at the end of the hall, and began to wait. 

The people streamed in. By the time I arrived at 1 pm, the room was full. Husbands, wives, uncles, aunts, cousins, grandparents, and friends surrounded the laboring Yahayra and Gilbert, Zady’s father. A baby slept in the corner. A few small children darted in and out of the room. I entered with photographer Erin Long, who had also developed a strong friendship with Yahayra during her pregnancy. The two of us came in and were instantly wary of the apparent chaos in the room. There was Yahayra, in hard labor with a baby who would not live, and we worried that all of these visitors might just be too overwhelming. In hindsight, I cringe with embarrassment at this thought: this opinion was me looking at the situation through my own eyes. Later, I would learn that all these people were a gift. Erin and I gave Yahayra hugs and Erin took some labor photographs, and Yahayra welcomed us to join the crowd, to stay and join the wait for Zady’s arrival. We settled in and waited.

A family photo taken during labor

While the labor had begun on its own, for a variety of reasons in the early evening the midwives determine that the best course of action was to deliver Zady by c-section. I breathed a sigh of relief myself. Watching this woman labor with enormous physical pain and knowing the emotional pain that would follow was exhausting. I wanted her pain to stop, I wanted her daughter to be delivered safely and alive into her arms, and I wanted her anxiety about whether or not Zady would survive the birth to be answered. Erin and I stepped out of the room as Yahayra was prepped for her surgery. Her family was given another hospital room to use as a waiting area. 

In our own little room, Erin and I talked candidly to each other about how important we thought it would be that Yahayra and Gilbert would have some time alone with Zady in the surgical suite. We felt that given the volume of guests at the birth, and given the emotional intensity of meeting Zady, the quiet moment of birth for just the two of them might be preferable. Erin trustingly passed off her professional camera to an assisting midwife to photograph in the surgical suite, and then we sat back and waited. 

Not too long after, the midwife re-entered. She held the camera in her hand, her expression grave. Zady had been born, and she was alive. She had a heartbeat and was blowing some bubbles, she said. She didn’t think she’d last very long. Erin pushed the camera back at her. “Please, then. Go back and take some more photos of her while she’s alive”. The midwife left the room.

When she returned, the news was better: Zady was pinking up, she was making noise. Yahayra was stitched up and they would be moving her back to her room in a few minutes. We were invited to the hallway to greet her. The family gathered around. The doors opened. 

This brings us back to the beginning of our story, where Zady and Yahayra emerged from the surgical suite. Yahayra was beaming. The family all leaned in, craning their necks to catch a glimpse of the tiny, swaddled Zady. The two were wheeled down the hall and the family followed. The doors to the postpartum room opened and everyone streamed in and surrounded the bed. Yahayra lay there, her long, red hair surrounding her on the pillow, her icy blue eyes sparkling. She smiled down at her darling little girl, a petite, dark haired beauty wrapped in a blanket. Zady opened her mouth and let out a tiny cry, like a kitten. Everyone gasped, and laughed, and cried. It was the most adorable noise any of us had ever heard. Yahayra leaned down and kissed Zady’s little face. The family gathered quietly and respectfully around the bed, their faces glowing with pride and love. Everyone was taking photographs and doing the things you’d expect people to be doing-- whispering about how adorable the baby was, cooing when she made her sweet noises, and reaching out and touching her soft newborn skin. Yahayra raised her face to her family and said, “I know you all want to hold her, but right now the most important thing for her is to be with me”. No truer words were spoken.                     

I have rarely witnessed such beauty as that time around Yahayra and Zady, when dozens of people gathered around this baby whose life was limited and witnessed her beauty and her reality so honestly and openly. Suddenly, all these people-- who I had somehow, for some unexplainable reason, feared-- were a gift. They were all there as part of Zady’s family, as part of Yahayra’s community. They were gathered together in recognition of Zady’s life and to honor her parents during the short time they would actively parent her. What followed was an experience so authentic, so real, it made me think that as an Empty Arms companion I ought to have planned it thinking ahead to what would happen. Zady was absolutely confirmed and welcomed into a circle of love. Yahayra was confirmed and validated as a mother of three, Zady was confirmed as a sister, and her siblings were able to meet and interact with her immediately. In fact, they were able to help to dress Zady, diaper her, and interact with her just as siblings would.           

Yahayra with her children 

Cousins and aunts, uncles and brothers, and the pastor from Yahayra’s church gathered around, hearing Zady’s voice, telling her parents how beautiful she was, and filling the room with joy. There was not a hint of grief, anticipatory or otherwise, in the room during that time. Zady was perfect and beautiful in everyone’s eyes. They loved her for who she was, as she was.                        

Everyone gave their time, their presence, and their love to Yahayra, Gilbert, and Zady, and then slowly, one by one, they kissed Zady’s tiny face and said goodbye, just after midnight. Nobody knew how long she would live for. They all hoped for more time.              

Yahayra and Gilbert had three more hours with their darling girl, just the three of them. They changed her clothes, they held her some more, they slept some together. At just past three, Yahayra’s dearest pre-natal nurse, Megan, the only one who hadn’t yet met Zady, came on shift. She came into the room to give Yahayra her pain medication, and Yahayra woke up and excitedly shared her beautiful newborn girl with Megan. It seemed a miracle that Zady was actually there, that she had been able to experience everything that her mother had waited so long for her to experience. She had been held, loved, and cherished. She had been met by family, shared, and blessed. Everyone who had waited for her, who had hoped she would live to meet them, had gotten their chance. 

And then, just like that, quietly and peacefully, Zady passed on. In her mother’s arms, right there, warmly and softly. I was not present for this moment, but I have an image in my mind of her little soul rising from her body, contentedly rising to another place, having fulfilled her time here on earth. Yes, her time was much too short. Yes, her parents desperately wanted more time. But the experience she had was beyond value, and the sweet, love-filled memories that her family will carry of her will last forever. 

I have companioned with many families over the years, but I have never had the opportunity to build a relationship with a mother the way I did with Yahayra, as our friendship grew in anticipation of Zady’s birth and death. Being part of her birth experience, and being able to witness Zady’s life and her time with her family was a privilege beyond words. I feel so blessed having been able to know Zady, and to be part of her short life. I feel so grateful for having been able to feel her warm cheek beneath my palm, for having been able to laugh along with her family when she let out her beautiful cries, and to be able to shed authentic, love-filled tears after her death. Little Zady, whose full name is Zadhayra, taught me so much. I will always remember her. Her life was short,  but her mother and her taught me so much about patience, and bravery, and love. 

Pieces of Healing: The Birth/Death of Kaia

Pieces of Healing: The Birth/Death of Kaia
By Anne Ellinger

Waiting

Is today your birthday, Kai or Kaia? Tomorrow? I'm scared of what labor might be like, yet I want it NOW! I've been holding my breath since two weeks before my due date, and now it's nearly two weeks after. All night part of me is tense, waiting, expecting. Now? Now? I awaken at midnight, 1:00, 3:30, 4:00, full moonlight pouring onto the bed. I stumble to the bathroom. Maybe standing up will break my waters? Nothing. Full moon, are you talking to my womb, whispering to this child, tugging sweetly on the waters? "Come out...come out...

From the outside, these last few weeks look like a wonderful break from my busy life. But on the inside, deep in my cells, my bones, my hormones, deep in mother history, I am a raging mother bear: "I WANT MY CHILD!"  Every second screams out. Come on! Come on! Come on! Come on! Come on! Now? Now? Now? This impatience feels deeply biological.

Even though people have been gentle and sympathetic towards me, I feel very alone.

Death and Birth

This morning, I can't stop crying. Not the angry frustrated crying of the past few weeks, but a deeper despair, sobs that come and come without thoughts. I call the midwife in desperation. "Isn't there something we can do? Tomorrow I'm supposed to come in for a stress test -- can't we do it today?" Molly reassures me that the baby did wonderfully on the non-stress test a few days ago. Has the baby been moving this morning? No, but that's not unusual for the morning. She suggests I drink some juice and lie on my side for a while to feel for movements.

Two hours and three glasses of juice later, I still haven't felt the baby move.  I'm not that concerned, because lately he or she has been quiet until evening and then kicking up a storm. But usually when I push firmly on an arm or a leg the little limb will shift out of the way, and today that's not happening. Molly suggests I come in, just to be sure. My partner Christopher and I set off on the 40 minute drive.

Molly greets us at the hospital. She finds a spare room with a doptone, the hand-held ultrasound that will let us hear the baby's heartbeat. I lie down on the table as I have done dozens of times before, ready to hear the familiar fast "whhhish, whhhish."

Molly keeps searching my belly with the doptone.

The silence is deafening.
I feel in a dream, my heart icy.
Molly finds a nurse to check again.
Christopher holds my hand.
"I don't believe it. I don't believe it," is all I say.
Christopher is crying.
I've cried so much in the last few weeks.
There are no tears left.
I feel dead.

We walk to an elevator, Christopher holding one of my hands and the nurse holding the other. Another room, another ultrasound machine, this time with visuals, a doctor looks, he says "I'm sorry, your baby is dead, There's the chest cavity, you can see -- no heartbeat."

I'm dazed, leaden. We're brought to a delivery room. The nurse explains what will happen: she'll insert a prostoglandin gel tonight to soften my cervix, and around 7am tomorrow they'll start me on intravenous pitocin to induce labor. No, they won't do a cesarean unless absolutely necessary -- I'll have enough to recover from without the additional burden of surgery.

"You'll want to spend time with your baby -- hold and talk to him or her.
We will? The idea stabs my heart.
But this nurse has been wonderful, so loving and genuine and gentle.
I trust her knowledge.
"Oh yes" she says. "It really does help to say goodbye.

Christopher phones our labor-support team. I hold him tight as he shakes and tells the news: "The baby's dead." Two friends offer to phone everyone on our birth announcement list --a heroic task.  We're grateful. Just this morning my parents had decided to drive to Boston to await the birth. I phone their hotel every fifteen minutes. At last they've arrived and my father answers the phone.  "Dad, the baby's dead..."  I hear my mother cry out in the background.

We're exhausted. I'm still numb. Bedtime, Christopher and I cling together on the narrow labor bed. The nurses put up the bed railings around us, saying, "Here, you might be more comfortable."  I awaken around 3am and finally cry.

Morning. Molly is there, even though this is her day off. "I want to be here. All I'm going to do today is think about you, anyway," she tells us. The doctor from yesterday says he'll do the delivery, even though it's not his day to work either.  I appreciate his sad, gentle manner. My parents arrive.  Months ago we had invited three friends to be at my labor.  Now they arrive, bringing several other close friends of ours who want support our labor team. I feel cushioned with love.

Yet soon I hardly notice who is there, because the pitocin has my contractions rolling right along. For months I've been wondering and fearing and preparing for labor, and at last I'm just doing it.  I can't even think about my baby being dead, because the sensations command all my attention.   It takes every ounce of concentration to relax, relax my feet, my legs, my arms, my belly, breathe, notice any tension, relax. The contractions fascinate me. They come on so subtly, from nowhere and everywhere at once, yet before I know it they're as intense as any sensation I've ever felt, I can't believe it, I watch my fear, afraid the sensations will, grow even sharper...and then they mysteriously evaporate.

Molly said whenever I've had enough I can have an epidural to make me numb from the waist down. No point in suffering -- don't need to protect the baby. But when do I want it? I want to experience this miracle called labor, to satisfy my curiosity and to know that I can deal with it. Yet I don't want needless pain.

Hours go by, and they feel like minutes. Friends are in and out of the room but I hardly notice.  I move from the bed to the bathtub, dragging my pitocin tubes with me.  The contractions now are like jagged peaks. I ride up, up, up the sharp pain -- will it ever stop?  Friends spread wash cloths across my breasts and belly and baste the cloths with warm water. It feels so good. Is it true my baby is dead?  I can't let in that reality at all.  Around Ipm I decide I've had enough.   I know what labor feels like. And dealing with all this pain, there's no way I can be present emotionally with my baby's death -- I could be giving birth to a truck and it wouldn't matter to me. I want to aware of what's in my heart.

I get the epidural. Within minutes my insides are bathed in numbness, and the contractions are reduced to a mild tightening on the surface of my belly. The relief is blissful. Is this what it feels like to die? Released from pain, I'm suddenly exhausted and melt into sleep. Molly comes in to check my dilation. "Can't I sleep a little more?" Iplead. "Sleep any more and you'll miss the birth! The head is just inches from crowning. It's time to push! Now I'm awake, and terrified.

O god, if I push
the baby will come out
and be dead
and what if the baby's deformed
or decomposed
and when I see my baby's really dead
my heart will
break
break
break

"You don't need to push until you're ready," Molly says. "Take all the time you need." I shake and cry, and cry and shake, friends close around me. After a long while, miraculously, I do feel ready.

Pushing is almost fun. All this effort from the waist up, and nothingness from the waist down. The doctor and midwife cheer me on. The baby is out. A putrid smell fills the room. The doctor says gently, "The smell is from infection after death."

My baby girl is wrapped in a white blanket with a little white cap on her head. Loving hands place her on my chest. I'm astonished -- instead of searing grief, a deep joyful peace fills my heart! "She's beautiful! She's so beautiful!" I keep saying. I know she's dead -- it's not that I'm deluding myself. But the sense of fullness I feel upon holding my baby is overwhelming.  I can't believe I'm feeling this serenity, so opposite of what I thought I would feel. I gaze at her -- bright red lips, a chin like mine, long toes like mine, my god, it's really my child...

Everyone takes turns holding her. Many tears. I'm grateful so many of my loved ones are here, seeing and holding my baby, making her real, she who will disappear so soon.  Christopher and I spend some time alone with her, before we hand her for the last time to the nurse. The doctor keeps taking my temperature -- I have a fever that climbs quickly to 102 degrees. He puts me on intravenous antibiotics. Christopher goes out to say goodbye to all those who had been at the birth.  I fall immediately asleep.  When I awake we sadly leave our wonderful nurses and I'm wheeled from the labor and delivery wing to another floor. I nearly pass out in the wheelchair. Christopher sleeps in a cot next to me. The birth/death day is over.

Limbo Time

Christopher and I spend the next five days in the hospital as my body fights a strep infection, the kind that used to kill women in childbirth.  I'm relieved to be in the hospital.  I couldn't bear to be home and face life-as-usual without my baby. The hospital is a no-where land, a limbo time, a chance to fall apart as much as I need.

Our friends move in during the days, and the hospital wing becomes our community center. Betsy is there from morning till night, coordinating our visitors. My parents visit every morning. Dakota comes every afternoon, letting her kids romp in the playroom down the hall. Many people offer food, counseling, massage. When friends aren't seeing us they're visiting with each other, getting more time to talk than they have in years! This death brings us all together.

My strength slowly returns. At first I need help just to walk to the bathroom. The third night is misery, my hot swollen breasts covered with ice packs, my uterus cramping intensely from medication to help it shrink. Christopher lies in the cot beside me, holding my hand as I cry. He attends to my every need.  I'm glad we have so many visitors in the day, so he can get outside and talk and receive lots of attention. He and I need such different things. I can't stand more than one person at a time, can't stand to talk about anything but Kaia. I just want to sleep and cry.

On the fourth day my fever breaks, and by evening I'm straightening my room and strolling the halls. By the fifth day I have the strength, emotionally and physically, to go home.

Kaia's Ceremony

We've been home a week. All morning I've been crying. I don't want to do this funeral. I don't want to be around people. I don't want to see or touch Kaia's ashes. I don't want to let my baby go.

The ashes are in a clinical-looking white cardboard box, about eight inches square, with the label BABY GIRL, SLEPIAN. With dread and fascination I open it. The fistful of ashes are tied in a plastic bag. Rough and light-brown, with lots of bone chips, they look more like broken up concrete than like ashes. I pour them with numb detachment into a small ceramic box made by Christopher's beloved mother, who died when Christopher was fourteen years old.

We set off for Cranes Beach and arrive around 5pm. To my dismay, the beach is far from deserted! Couples lie greased on their towels, children shriek at the shoreline, groups play volleyball and dig sandcastles. We head across the sand to find an area less crowded. Friends arrive. Strong hugs, people seeing us for the first time since the death, relieved we're OK. We spread a scarf for the center of our circle. We place on it some lilies and mint brought by a friend, a photo book with pictures of Kaia, some of the many cards we have received, a Tibetan gong, and the dish with Kaia's ashes. We light a small torch pushed into the sand.

The only thing I know I want is to cry with other women. So we begin with the women and men in separate circles, about forty feet apart from each other. The men sing a simple chant Christopher leads. I motion the women to huddle close, and we put our arms around each other and cry. We sing some, echoing the men's chant, and cry some more. I wish we could do this for hours, but I'm aware the men are ready to move on, so the women and men join together in one big circle.

I'm shocked how many people are here on such short notice -- close to fifty. I feel grateful for every one. I feel the presence of all the mothers and babies, especially the women with whom I had shared the discomforts and anticipation of pregnancy. It hurts, but I'm glad they're here.

In the big circle, Christopher tells the story of the Kaia's birth, and others who were present add in. Songs and heartfelt comments from friends. But I feel frozen with hurt until one song finally pierces my shell: "So let her go/ she's a feather in the wind/ gone back to wherever life begins/ and for all the love we know/ she was only here on loan in flesh and bone/ so let her go..." The refrain of Betsy Rose's song goes deep into my heart. I don't want to let her go! Held by friends, I cry a torrent of tears, delicious, relieving. While I cry, Christopher passes around Kaia's photos and the clay vessel of her ashes. People cradle the ashes and cry over the pictures, saying hello and goodbye.

And now it's time.
Christopher and I take the ashes,
and step away from the group towards the sea.
Suddenly, I'm filled with the most unexpected joy!
Like the shock I felt when I first held Kaia!
I'm expecting grief,
and instead I receive deep peace.
I'm letting go.

As we step across the sand the sinking sun lights up the edges of a cloud with orange, and great streams of light, like God's fingers in a Renaissance painting, pour down towards the beach.Kaia! I laugh out loud. I suddenly feel so happy, so in love with Christopher, so touched with magic by the whole memorial.

To get to the sea we have to wade first through a little canal made by the tide. As I lift my skirt and stride in, I feel mythic.  I'm crossing the Red Sea, stepping through a boundary after which I will never be the same. We reach the sea and dance with the ashes, taking turns flinging each fistful into the wind.  "Kaia, we release you!"  "Kaia, thank you for your gifts to us! We rinse the last ashes from the vessel and with our arms around each other turn back towards the group. Again, I laugh out loud! I thought we were utterly private. But when we turn, we see the whole group watching us, standing with their arms around each other, faces glowing from the sunset, crying, smiling, singing.  A wave of love coming towards us.  "Breathe!" I coach myself, and we walk grinning back to the circle. We close the ceremony by singing Kaia's name together three times, each time raising our joined hands above our heads, sending her spirit off.

Before we know it Christopher and I are alone in the car heading home, dazed and exhilarated. How did that service become so powerful? We feel the awe of tapping into something much larger than ourselves. We decide to go out to eat to talk it over, and sit cuddled and exultant in the restaurant like two shining newlyweds.  The waitress would never guess we just came from our daughter's funeral!

A few days later, a friend slips a letter under our door: "Friends, I will never forget that evening on Cranes Beach. I came to it mourning a life I never knew, mourning a lost connection with Anne, and fearful for my own baby. I left with deep love and appreciation for a little girl who has helped me to celebrate life and the loving connections it brings and who has reminded me that every person, no matter how small, can have a deep impact on others. She has helped heal my terror of death and its finality. I will never again walk at Cranes Beach without thinking of your beautiful child and how she, and you, have deeply touched me.

Day After Day

The space around me is vibrating. Around my arms, chest, breasts, belly, in all the empty spaces where a baby would be, the emptiness shimmers and aches. The silence around me thunders in my ears. No baby's cries. Every molecule of bone and flesh was poised for one thing, and one thing only -- to mother this baby. How can the flesh let go?

Only through time and tears. I cry whenever I feel like it. It doesn't matter where: in a Mexican restaurant sharing hers d'oeuvres with friends; alone in the car on the way to a business appointment; at a barbecue, when I'm struck in the heart by the squeals of children running through the sprinkler. I know that the most important thing I can do is to let this pain pass through me whenever I feel it. I know this is how I will be healed. I remind myself that even though it's embarrassing, sharing my pain is not a burden to my friends. The pain they imagine for me is often more fierce than my actual experience, so when I cry around them they actually feel reassured. They see that the tears come and go, and life goes on. Sharing my pain gives them permission to share their pain too, and we all grow closer from it.

One day at a time. Don't think about how I'll deal with next month or next week or even tomorrow. My job is to heal. There's nothing more important for me to do than to take the best care of myself I can. My life is simple: one or two hours a day I set up specific times with friends when I can cry as hard as I like. The rest of the time I hang out, talk if I feel like it, sit by the pond, go shopping, watch videos. I don't feel like doing much. I contact some other mothers whose babies died.  I read a book about recovering from stillbirth.  I try to eat and sleep and exercise so I don't turn grief into sickness. I wait for the days to go by.

I want to wear a giant sign around my neck: BE NICE TO ME! MY BABY JUST DIED! I can't stand being around people who don't know I'm dealing with this momentous loss! The cashier at the grocery store. The couple down the beach, swinging their little girl between them. They all think I'm an ordinary woman going about her ordinary day. They don't feel the scream beneath the surface, the heart rubbed raw. I hate my pain being invisible. I can't stand being around people who don't know.

I can't stand everyone knowing. Pregnancy is so goddam public, everyone who has seen me in the last five months knows there should be a baby in my arms. Where's the baby? Pregnancy is public, yet this pain is as personal as the cells in my own body. I can't stand it. I walk down to the pond at the end of my street to draw in some comfort from the ducks and the quiet waters. I imagine the eyes of my neighbors, pitying, concerned. "There's that girl whose baby just died. Poor thing!" I feel conspicuous. I dread when we'll first meet, their gooey eyes, their awkward silence. I dread hearing again, "Don't worry, you'll have another one," and other tactless things people say when trying to comfort but not knowing how.

Down at the pond I see a friend of a friend feeding the ducks. My heart thumps as I approach. Does she know yet? Now she sees me, and I can see it in her eyes, yes, somehow she has heard the news through the speedy grapevine. We hug. There are tears in her eyes. Now what do I do? I don't feel like telling the story for the hundredth time. Yet all this person probably knows is that my baby died. She doesn't know why or how, or how I'm dealing with it. I wish I had a card with the whole saga written up. "Here, read this, see you later.”  But I know information is not the essence of what she needs. She needs to be with me, to sense my pain and my intactness, to express in the silence her own pain and fear and love. Oh, but it's work. Telling each person is grueling, but afterwards I'm relieved. Another person who knows. One less person to tell. Once again, to my surprise, after my initial resistance I feel nourished by the recounting, by sharing the pain and letting in her love.  I return from the pond a little peaceful.

Could I have done anything to keep her alive? Maybe if I hadn't sat so much at the

computer... If only I had charted her kicking more closely ... Maybe if I had asked to be induced... I let these thoughts pass harmlessly through me, like the annoying but innocent buzz of a fly. There's suffering enough, no need to add to it. We've been over the evidence with the doctor and midwife. Kaia gave no advance clue. There's no medical explanation. There is nothing anyone should have done differently.

Why did my baby die? Was it a meaningless accident in a meaningless world? Was it Kaia's choice, to leave just in the nick of time? Were we being punished for not wanting her badly enough? Were we divinely chosen to receive the special gift of her death? More sharply than ever, I see there is no way to know the "true" meaning of anything. There is no meaning to her death, except whatever meaning I choose. For the time being I choose that she loved me and that leaving is what she wanted. Not because I believe it's "true", but because that is what gives me greatest comfort. I'm glad there's no medical explanation; it makes it easier to believe the spiritual one.

Everything in my daily life shouts "WHERE'S THE BABY?" Here's the chair where I was going to nurse her. Here's my neighbor who had offered to babysit. Here's my favorite greasy spoon diner, where I looked forward showing her off to the waitress. I refuse to avoid what's painful. What am I going to do -- hide in my room? The hardest part is being around the other new morns in my neighborhood. How I had fantasized the hours I'd spend with them, nursing our babes together, comparing joys and tribulations! Now there is this painful awkwardness between us, jealousy and guilt, fear and sorrow. Deliberately I go visit them all, hold their babies, ask to hear their motherhood stories, and cry about Kaia with them. The opportunity of being new moms together is forever gone, and we mourn that together. Loosing Kaia is bad enough -- I'm determined not to lose the friendships, too.

Sympathy cards come pouring in. Christopher and I savor every word, even the dumb Hallmark ones. Each card brings relief -- ah, someone else who knows, someone else who shares the sadness. As weeks go by and the mail continues, we feel compelled to let people know how much their cards matter. Although we know no one is expecting a reply we send a letter to over 120 people.

Many of you expressed pain at being powerless to lift the burden of sorrow from us.  Yes, the grieving and healing is ours to do; But it's not true that you are powerless. The oceans of love and concern we received transformed our experience of Kaia's death. We feel deep loss, but at the same time we feel magically enriched cradled in a community of caring more vast than we ever imagined...

It feels good to give back to those who have given to us. Each time someone is moved by Kaia's death it makes her existence feel more meaningful. When she touched so many, who are we to say she didn't live a complete life? I'm amazed by the expanding ripples of her influence. I suspect there must be hundreds of strangers I will never meet who have heard of Kaia. So much for the self-deprecating notion many of us carry stubbornly in our heads: “I don't really matter." Each of us touch more lives than we ever dream of, and Kaia is proof.

Christopher and I try hard to be patient with each other. We need such different things these days! He's engrossed with work, busy writing his book, ready to move on from this death. While for me, as time goes on my grief comes up even sharper. Though he's always kind, I can tell he's bored my pain. I'm hurt and angry. Why isn't he grieving like I am? It's not fair! How come he gets to have his baby -- his book -- and mine's gone! Once I'm reassured that he's not just avoiding feelings (to emerge later as ulcers?) I have to accept that he just experiences this death differently from me. Kaia didn't live inside him for 42 weeks, she lived in me. I cry with Christopher often, but I try to get most of my support from other women.

For nine months I've been anticipating becoming a parent, imagining everything in my life changing. Suddenly time has jumped back a year, like the needle of a phonograph skipping back just when it was about to move to the next song. I feel profoundly disoriented. I'm not pregnant, and there's no child. I remind myself that time did not skip. I'm a parent right now -- I'm just a parent of someone who died, and that's a different challenge. With a friend's help, I arrange a small gathering of mothers.  We cuddle on the blue carpet of what was Kaia's room, light a candle, and affirm my motherhood. "Children are our teachers. You're certainly learning from yours, just as I'm learning from mine!" "Who knows, in the future I might also have to face the death of my child. You just sped into it. Instead of feeling like time moved backwards, you could consider that it fast-forwarded!" I feel nourished by being one of the moms. Most new mothers are asked every day about their children. "He's pooping a lot today." She had me up half the night!"  I can't talk about diapers or sleep, but I decide to coach my friends to ask me, "What are you learning from Kaia these days?"

How do I have a relationship with a dead person? I've never been this close to a dead person before. I will never know Kaia the infant, toddler, child, adolescent, grown woman. That is the Kaia I grieve. But Kaia the spirit, whose life touched mine, will always be with me. What do I mean by that? I don't know, but I feel it's true. I talk to her. I let her talk to me. I realize I need another way to feel connected to her besides feeling my grief. I can feel myself caressing the pain, milking it as proof that Kaia was real, our bond was real. But after I die, I don't want the thought of me to fill my friends with pain -- I want the thought of me to make them feel loved and happy. I'm sure that's what Kaia would have wanted, too.

It would help to have something visible, something in the physical world which can represent my relationship with this invisible child. I imagine a ring. And I find the perfect one in the first store I try, a smoky round moonstone flanked by crescent moons of silver, simple and magical. Just as a wedding ring makes everlasting love visible to the world, my ring will show the world that I am a mother, and my child is always with me. I touch the ring a lot, and it brings me a surprising amount of comfort.

Going On

Two months after Kaia's death. Christopher and I and our housemates finally pack away the baby clothes and put the crib in the basement. I tried to do this a few weeks ago, but ended up sitting on the floor crying in my friend's arms, telling her how I had marveled at each tiny soft t-shirt and jumpsuit, imagining my baby in them -- my baby!  But today I'm suddenly ready. Goodbye baby clothes. Packing up the room I feel sad but relaxed.

By now I've heard dozens of stories of other dead babies. Almost ever person I talk to knows someone who had a stillbirth. Why is this kept so hidden? Why did I think stillbirths only happen to the malnourished, to those without medical care? The myth is that if you eat right, exercise, and get good care then your baby will be fine -- as if life and death were so under our control! I read the statistics:  stillbirths are 16 out of 1000 in the U.S.  That's almost 2 in 100!  But in our death-denying culture, you would think stillbirths ended with the pioneers.

I keep thinking about the women in my pre-natal exercise class. By now most of them must be attending the post-partum class, carting rosy-cheeked infants with them. I feel bad just disappearing, as if women whose babies die fall off the face of the earth, but what should I do? I call the office manager. She's so pleased to hear from me! Yes, most women whose babies die never re-contact the Center. She knows of two other women who disappeared from classes after their babies died.  Would I like to contact them? I'm nervous, but I do. The three of us have a wonderful time over lunch, comparing our recoveries and talking about how deserted we felt by the Center. Later we attend a staff meeting at the Center, share our stories, and suggest ways they could reach out to folks like us. I feel healed from this work -- completing what feels unfinished, giving back, helping others who may go through similar loss.

I used to fantasize about my greatest fears for the future. How will I ever survive if

Christopher dies? What if I get a debilitating illness -- could I manage chronic pain? I acted as if practicing my pain would make me better prepared!  Now, having lived through a pregnant mother's worst fear, I see the futility of such practice. When something happens, you deal, that's all, because you have no choice. In this crisis, I've discovered resources within me and around me I never knew I had. Whatever happens in the future, I trust the same will happen. I'Il deal. I can let my fearful fantasies go.

My need to grieve is like being in a room with the radio on. The first week after Kaia's death the volume was turned up so high all I could do was listen to the radio. The next week, I could ignore the radio for a few minutes at a time -- hold a discussion, admire clouds and flowers -- but the radio's chatter was always demanding attention.  Weeks went by, and it turned into background hum, more like an air conditioner, always present but easy to tune out. A whole hour could go by without me noticing the gentle roar. And then one week I noticed with a start that the radio was still in the room, but most of the time I didn't even notice it was there.

I feel blessed. I feel connected with every woman who ever grieved a child, the tens of thousands who mourn with me right now, the mothers in war-ravaged Eritrea, the mothers in Armenia who dug babies from the earthquake's rubble, my great great grandmothers in the Russian stadtls, and the hundreds of women in US hospitals this very day who are holding dead newborns in their arms. When you risk being a vehicle for life you may also be a vehicle for death, for they are inseparable, and the power of each is the same power. We women do this, and have done so since the species began. Our hearts break, and we are strong enough to go on. And I, who have been protected all my life from misfortune, have joined the ranks of the unbearably human. In one humbling blow the security of my life's plans was ripped from me, and with it the illusion of control. I stand naked and proud, just human, like all of us, with nothing to do but go on.

Thank you, Kaia, for this gift.

All responses welcome!                             
Anne Ellinger
anne.ellinger@gmail.com
written September 1990

Grief Doesn't Knock

By Sadie Dybizbanski
November 25, 2015

Grief doesn't politely knock on the door of your heart and wait to be invited in. Grief doesn't greet you politely with a warm hug and hostess gift.  Grief breaks down the door, shatters the glass panes of the windows and fractures holes in the walls.  The roof caves in as the grief arrives and barrels through the structural beams.  Grief threatens the security, warmth and joy where your heart desires to reside.  Once the walls have come crashing down, the cold wind blows through with memories, what-ifs and deep dark sadness of how you dreamed your life would be.  And then the absence arrives, the emptiness where she should be spreads out among your thoughts.  You are now consumed with this grief that wasn't invited but feels known so you ask it to stay.  Where this grief is there is also closeness to her, the familiarity of the pain reminds you that she was once in your arms, a thought that seems distant when grief has left.  Grief is messy and clumsy.  The destruction left behind by grief leaves you feeling broken.  Grief slowly slips away, as love and the distractions of life arrive to the torn down door.   Distractions barge in, but love stands at the door and waits to be invited in.  She tells you of her friend Joy that is on her way to your heart if you just says yes.  Love promises that your heart can be rebuilt, that windows will let light in again, and that the roof will provide shelter and keep you warm.  If only we had this same choice when Grief arrived, the choice to say yes or no, not today.