Zady's Strength

It would be hard to forget the story of little Zady. We introduced you to this beautiful family in the spring. In March of 2016, her mother, Yahayra, welcomed Empty Arms into her life and allowed us to walk with her as she awaited her daughter’s birth. Zady had anencephaly, a condition in which the brain fails to develop, and she would inevitably die shortly after birth. As Empty Arms companions and photographers, we were honored to be part of Yahayra’s pregnancy, and witness Zady’s birth and brief life here on earth. With her family, Empty Arms was able to help plan and fund a meaningful funeral and beautiful burial.

Yahayra and I have been in continual contact since Zady’s birth last April, but there was one last special delivery that had to be made. Several weeks before Zady’s birth, I arranged for a local doula to create a plaster belly cast of Yahayra’s pregnant belly. One cold, snowy afternoon last March, five of us gathered around her with tubs of vaseline to protect her skin and long, sticky white straps of plaster casting, surrounded her with love and creativity. We laughed as baby Zady poked and kicked the cast from the inside. At the end, the doula took the cast home with her to finish stabilizing the plaster and then handed it off to a local artist (see below), who had taken the summer to paint it with a beautiful mural. Finally, in October, the cast was ready.

After a drive up to Greenfield to get the cast, I brought the cast along with a box full of photographs I had taken to Holyoke, where Yahayra lives. She was waiting for me outside, sitting on some steps, and my heart almost leapt to see her. I could not wait to see her reaction to this beautiful piece of art. We hurried inside with the big box.

Doula:  Karen Kurtigan  Artist:  Cindy Kurtigan

Doula: Karen Kurtigan
Artist: Cindy Kurtigan

Yahayra covered her hands with her face when we got inside. “I can’t look- you open it!” she cried from behind spread fingers. Her bright blue eyes were laughing with anticipation. I brought the cast slowly out of the box and she lit up with joy. She lifted the cast and placed it right back where it had been, re-forming the body that she once had with Zady on the inside. It was a glorious moment.

After sharing the cast and all the photos with her mother and a friend, I offered to take Yahayra out to lunch before I headed home. She gladly accepted, and as we walked to the car, she mentioned again to me that she still had not been to the cemetery since the funeral. It was too emotionally difficult.

Moments after I began to drive, she suddenly grabbed my arm and fixed me with a piercing stare of her blue eyes. “Let’s go to the cemetery right now,” she said. And of course, we went.

Two hours later we were still there, lying on the warm grass under crimson and orange maples, our fingers tracing the lettering on Zady’s pink granite headstone. Yahayra had never even seen the headstone, and as we lay there, Zady's father joined us and we talked all afternoon. We re-lived the moments right after Zady’s birth, when we all felt such visceral relief that she had survived the birth and was mewling in her mother’s arms. We re-lived the funeral, and the people who had come to offer support. We re-lived the agony of knowing you’d never see your baby again. It may sound strange to say that an afternoon spent lying on a baby’s gravesite was one of the most powerful and beautiful ones I’ve had, but it was.

Yahayra will say that her relationship with her companions was life changing, but we would say the same. Each family that we work with changes us in some way. For many of our Peer Companion families, we meet them after their baby has passed away. We only know them in the throes of grief. Yahayra's birth story was different. We knew Zady was coming; we were able hold space with Yahayra in the hospital as she prepared for her daughter's birth and death. We were able to gather resources for her, professional photographers ready for whatever she needed. When Yahayra requested a belly cast, we were able to find a local doula willing to lend her services, and a local artist honored to decorate it. When Yaharya felt overwhelmed by the cost of a headstone and creating the funeral service she envisioned for her daughter, we started a GoFundMe campaign, and ensured Zady would have the memorial she deserved. Our companionship with Yaharya will stay with us always, creating a long-lasting and beautiful bond. In her short, but important life, Zady showed us the strength of our community, and importance of holding space for one another. 

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.

What We Let Go Of

Healing a Heart
By Sara Barry

I let go of my idea of how my baby would be born.

I let go of the notion of holding him to my breast, nurturing him right away.

I let go of holding him on day one. And on day two.

I let go of the idea that babies are born, stay with their mother for a few days in the hospital and go home.

I let go of the idea that babies just breathe, easily and naturally.

I let go of slings and cloth diapers.

I let go of long walks with the stroller and being woken up in the middle of the night by a baby’s cry.

I let go of the ideal of health and the dreams of what we would do. I made new dreams and let go of those too as what seemed possible shifted and shifted and shifted.

I let go of living at home as a family. I let go of being the primary caregiver, turning that roll over to nurses even as I held fiercely to what I could do.

I tried and tried and tried to let go of fear—and expectation. Hope never let go of me.

I sang out his spirit as he died, never mine to hold or let go.

I let go of his body.

Slowly, over time, I let go of stuff. The stuff he never used. The things he and his sisters shared.

I let go little by little, inching my hands looser and looser, of the need to hold onto the sadness, though not the sadness itself. I let go of the need to remind people of Henry, his life, his death, my grief. I simply remembered and loved other people when they did too.

And now, nearly nine years later, what could there be left to let go of?

Last spring, I donated a pair of shoes. Tiny blue powder blue Merrells that had sat on my dresser, reminding me whenever I caught sight of them of the supposed Hemingway story: For sale, Baby shoes, never worn.

Henry never wore those shoes. He wouldn’t have worn them had he been well, had he lived. I didn’t have patience for baby shoes, and yet they sat there. A reminder. Until I passed them on. Never worn. To somebody who does have the patience for baby shoes. To somebody who may have a simple joyful experience of new motherhood or somebody who holds a babyalongside grief.

And just this week, I let go again. Every year since 2008, I have gone to Boston on the first weekend of November. I make my way down familiar streets past the hospital where Henry spent half his life. I enter a hospital owned building of meeting rooms and sigh deeply. The building is filled with grief—some longer sustained than mine, some raw and oozing.

Every year Boston Children’s Hospital holds an event for grieving families. Every year it breaks me open, wrings me out. I’ve gone back again and again. It’s my way to make space, hold that sacred space for Henry and my big emotions before I enter the heavy month of December and the approach of the day he died. This year, I got the invitation and I thought, “I’m going to let this go.”

I thought I was done letting go, but I let go of structure and tradition I had created within my grieving.

In a few short weeks, it will be nine years since I let sang out Henry’s soul and let go of his body. Since then I’ve let go of a lot. With each piece I let go of, I’ve worried that I’d let go of too much, that I’d lose the little I had. Maybe it’s time to let go of that fear too.

How do you hold on to your love, your hopes, your memories when you’ve been forced to let go of so much? What can you choose to let go of? 

I am the ocean.

Recently, a friend sent me a link to this podcast. It took me a few days to follow the link and listen, but when I did, the rest of the world around me fell silent. It was a beautiful, compelling story of a family who was able to intentionally create true meaning in the short life of their son, Thomas, in a most unexpected way. I truly encourage you to listen to this podcast, which is about 20 minutes long, when you can carve out a few moments for thinking. I listened while I folded laundry and was sucked into this family's story and the unusual places where they found their son's life impacting others. 

Most profound for me were the words of the mother, Sarah, towards the end of the podcast. After exploring a number of medical laboratories where Thomas's various organs had been donated, Sarah had this to say: 

(After the visits with these offices and providers) "I started feeling that these were Thomas’s colleagues and co-workers and he was a valuable partner in this important research that was being done. 

And I felt an even more fundamental shift- almost like, I had felt like I was a boat on an ocean that was like rocky, and choppy with waves. And I’ve had this feeling like, I’m not the boat, I’m the ocean. Like the decisions that I make are changing other people, as opposed to just, I’m a boat being slapped with waves all the time. It has made me feel powerful. "

What beauty I found in those words: in that thought, that perhaps, at some point, we can all find a point at which we feel less helpless, less controlled by our grief, and more like part of something bigger. Unpredictable, yes, and rocky at times, but also capable and strong. 

Thank you, Sarah. 

What Can We Do

Healing a Heart
By Sara Barry

What Can We Do? For people who want to help when a baby dies

Earlier this month at a family party, one of my husband’s cousins came up and asked if he could ask a sensitive question. While my girls splashed in the pool and burgers sizzled on the grill, he proceeded to tell about friends from their neighborhood and a baby recently stillborn.

What can we do?

He kept talking, wanting very much to do something, but at a loss as we so often are when faced with death, especially the death of a child.

Don’t be afraid to talk about it. Say the child’s name. Acknowledge the loss. I remember how hard it was in the early months to run into people and not know if they knew. Even now, when people mention Henry, I feel a burst of love.

Bring food (but maybe not right away). Food is nurturing. It can be comfort. And sometimes it is simply something you don’t have to think about.

Remember later. Send a note about seven weeks later. Send a card around the anniversary of the baby’s death. I tell people to put a reminder on their calendar; I do it myself. Because life moves on. Time moves fast, and while you may think of the person often, you need a reminder to act. It doesn’t have to be elaborate. I’m thinking of you. I imagine this is an especially hard time. I haven’t forgotten.

I mentioned Empty Arms. My husband talked about the tree somebody sent us to plant for Henry. One a lifeline. Another a symbol of life.

Later I talked to his daughter who had just visited the family. She said, “I didn’t say much. I was just there.”

Just be there. It’s hard to just be there sometimes, to not fill the space with words. But just being there matters. Show up, listen. Be open to tears or laughter or a messy mix wherever the person is.

Keep being there. I still have friends who check in with me in December, when Henry died. People still tell me, “I saw a cardinal and thought of Henry.” It’s been nine years, and I still appreciate it.

As we talked, tears welled behind my sunglasses. I still cry often when I talk about Henry. I cry when I talk about other people’s losses because I know how deep that hurt. And it’s okay. When I need to cry, I do. My final piece of advice: don’t be afraid of tears. They don’t mean you said the wrong thing.

What can we do? I don’t have the answers, just what stuck with me. Empty Arms offers more ideas about what to say and do here.

What helped you in the early days?

Round and Round Again: The Start of School Revisited

Healing a Heart
By Sara Barry


You know grief isn’t linear. But what shape, what path does it follow?

 

For me, grief has been a spiral. I come round and round through the months and seasons, again and again and again.

Each spring, as I prep my garden, I flashback to a very pregnant me. I squat, bent over belly, and plant seeds. Lettuce. Carrots. Hope.

Each summer, early August, I sit in the late afternoon glow, turning the world golden and remember the golden weeks when we thought Henry was better. His heart had been fixed, and ours started to heal over the wounds of fear.

And each year, as we get ready for the school bus to stop in front of our house for the first day of school, I remember sitting with Henry on our neighbor’s first day. I remember waiting for it, lost and broken, that first September I knew he would never ride the school bus.

I come back round to the distraction of a new baby the following year.

The ravenous hunger of another pregnancy after that.

Chasing one, holding one, missing one.  

Waiting for his turn that would never come.

Smiling as his sister climbed the bus steps for the first time.

This year, I’ll put my youngest on the bus.

We’re counting down the days. And I’m here, back thinking about the bus as I do each year as August turns to September. I started writing this post and had a sense of déja vu, because I wrote about missed milestones already.

But we’re here again. I’m getting ready to send my daughters to 2nd grade and kindergarten. And Henry would be starting 4th grade. I updated a few numbers from last year’s , but has anything else really changed?

 

It has. Each time I spiral back round, the experience changes. In the first years, I relived a lot of moments. Then moved to remembering.

Now, it’s not so much revisiting the past as growing onto it. Each fall is that fall we waited on the porch and the one when Henry should have gotten on the bus and the one when his sister did. And the one right now, where we’re anticipating my little one going on the bus for her first time.

On the first day of school, I’ll turn off the memory lamp by Henry’s picture as I go to turn on the coffee. I may pause and look closely at that moment of him captured in time or I may bustle past trying to get everyone ready. Either way he’ll be with me when we wait for the bus, caught in a chamber of the spiral. I can be fully present with the milestone unfolding while holding the hoped for milestone and the missed milestone and the previous milestones.

And next year, I’ll wait again for the bus.

Do you spiral back to the same events? How have things changed from this time last year (or 2 years or 5 years ago) to this time this year?

At a Loss for Words

Healing a Heart
By Sara Barry

In the first months after Henry died, my husband and I found it hard to communicate. We both struggled with our words. We couldn’t come up with simple, every day words like pencil or coffee or dinner. Our sentences would trail off as we poked around inside our grief swollen brains to find the name for something we were talking about. Often the other person found it first, but sometimes we’d stare at each other unsure what the other one meant.  

And then there were conversations where words simply weren’t enough. Words like sad and hurt, angry and unfair just weren’t big enough. But they were all we had. So we muddled through with half sentences and frustrated pauses.

Other people didn’t know what to say either. I don’t fault them for that. I struggle for words when I hear of somebody else’s loss. Every time I write a sympathy card, I recognize the inadequacy of the words “I’m sorry.” I still use them to mean “I wish this hadn’t happened,” “I hurt for you,” “I know this sucks,” and “I wish I could make this better.”

Even knowing that there are no words, even having sat through people trying to fill anxious, uncomfortable space with words, I find myself wanting to do the same. I want to make it better though I know I can’t. I want to offer hope even as I acknowledge the pain. I want to offer up all the things that didn’t make it better but that helped me muddle along.

But I try to bite my tongue. I try to listen. And I try to sit in that uncomfortable space of grief with people. I have met people who do this much better than I do. I have had people stand in that space with me, with few words, not because the words won’t come, but because they recognize that they aren’t what is needed in that moment, and because they aren’t afraid of the emotional fullness of that empty space.

How has your own loss changed how you respond to other’s loss?

We’re home!

It’s official! We’re home!! 
 
Thank you to everyone who has made this possible for our organization -- our incredible donors who have come through time and time again, our bereaved families who through their grief and deepest sadness have built a most amazing community, and our fearless Board of Directors and Executive Director Carol McMurrich, who knew when to take a leap for the organization.

We hope you'll stop by soon, and say hi!

140 Pine Street, Room B2, Florence, MA 01062

The Invisible Sibling

Healing a Heart
By Sara Barry


“You’re lucky you don’t have a brother.”

The seven-year-old we had just met on the trail grumbled to my seven-year-old. No response, but the one in my head:

“But she does.”

My girls do have a brother. They just don’t know what it’s like to have one who bickers with them and chases them and bugs them. They have never sputtered in a fit of anger, “I wish I didn’t have a brother.” They also don’t know what it is like to have a brother share his legos or chase them in a game of tag.

My girls do have a brother, and what that looks like has changed and morphed over time.

Back when we changed diapers before bed, my husband would pull a picture of Henry down off the shelf and the girls would say goodnight. Some days they’d ask for the picture. Some days they kissed it. It was a tradition I loved, but I told myself not to get too attached, to let them decide. One day they stopped asking for the picture. We stopped getting dressed in the bathroom or we were rushed and getting to bed late or their ideas changed. Like so many things, it was what we did for a while, and then it wasn’t.

“We have five people in our family. Two boys and three girls,” the little one likes to say. She counts them off on her fingers. “Mom, me, and Kathleen are girls. Plus dad and . . . “ Are you expecting her to say Henry here? It would make a sweet story, but really she says, “Roscoe.” Our dog.

Some days Kathleen will remind her to add Henry. Some days she doesn’t. I can live with this. They know he is part of our family even if he isn’t here to count. I can live with this because they’ve also said, “I’m sad I never got to meet Henry.” I can live with this because I don’t want them to be crushed by his loss, because I can’t expect them to hold the same space for him that I do.

Before they were born, early in my grief, I needed to know Henry wouldn’t be forgotten. I wondered and worried about how I would make him real to kids who had never known him. I looked to other people for their stories. When Kathleen came along, and then Elizabeth, I stopped worrying about how to introduce them to this baby brother they hadn’t met and would never know. We simply talked about him. We showed pictures like we did with lots of family members. “That’s mommy. That’s Nana. That’s Henry.” We named him. We told stories and visited the cemetery. I cried and told them why.

I don’t know what effect having a brother who died before they could meet him has or will have on my kids. I’m curious if his death will hit them some day as their concept of death changes or what being exposed to death so early means for them. I do my best to let them know that I love Henry even though he’s not here and that I love them deeply and all the time. I show them know it is okay to be sad and to express that sadness, and I share the great joy and beauty around us even with sadness. We talk about Henry simply as part of our family.

So when somebody asks, as a friend did not so long ago, “Who’s that baby in that picture?” my girls reply nonchalantly, “That’s Henry. That’s my brother.”

So, little girl on the trail, you’re wrong. My daughters are not lucky they don’t have a brother, because they have one. Even if they don’t really get to know him. But I know what you mean, because I wish they had a chance to wish they didn’t have a brother.

“You’re lucky you don’t have a brother,” still catches my attention, but my mind moved on by the time we caught up with the girls who had rushed ahead. Not so long ago, I would have cried or gotten really quiet. Not so long ago I would have wanted curl up in bed when we got home. Not so long ago, I might have answered that little girl aloud or seethed my answer inside. Instead I quietly acknowledge Henry in my own heart. My son. My girls’ brother.

If you have other kids, how has the loss affected them? How do you feel about the way your living children think about the baby they don’t get to grow up with? What questions or worries or wishes do you have?

Day 9, TLCF

I'm here at Turkey Land Cove, gifted with endless hours of time to think, discover myself, and create. There's no doubt I've learned much about myself during the past 9 days I've been here. It's been over 12 years since I've been by myself and as many of us know, there's no better way to learn about what we do every day than to go somewhere else. 

I imagined, before coming out here, that I might spend hours revisiting years past, connecting to my own identity as a bereaved parent. Instead, I've poured myself into my work: creating for Empty Arms. I imagine perhaps this is because this is the way I've reinvented myself as a bereaved parent. I've taken that energy, once expended on planting flowers in Charlotte's memory garden and blogging furiously about my loss, and turned it into outward work. I have given her life purpose, and my motherhood purpose. 

But that is not to say that there is not an unhealed part of me, because there certainly is, and there always will be. When I picture the wound that is Charlotte's loss, it's the wound from a week- old burn: shiny and smooth, but still red and angry. Graze that spot against anything and it could open easily, the pain fierce. I carry that wound tenderly, careful not to disturb its edges. I've learned well over the years. 

At night here, it is silent, a drastic difference from my home in Westhampton, where the river roars outside my window and cars pass with regularity. Here, the sliding doors to my bedroom remain open at night, and while on warmer nights the frogs call to one another, some nights it is purely silent. I have learned to sleep alone here, something that took me about five nights to accomplish, and now that I sleep, I dream. I dream deeply and meaningfully. Last night, it was this. 

My beautiful bedroom overlooking Great Edgartown Pond

My beautiful bedroom overlooking Great Edgartown Pond

I am with a therapist, a woman in her fifties, with round glasses and bobbed hair. She is warm and kind, and as we walk into her office, she offers me a seat at the low, round table. The chairs are molded plastic, the kind you'd see in a kindergarten room. I sit, and as I ease down, I am filled with relief that I am finally here. Here, with a woman I somehow trust, and she will listen to me. I feel anxious to talk to her because I know that I need her to understand. I need her to understand how this experience drowns you, how it colors every single thread in the fabric of your life, I need her to understand how inescapable it is. I'm not sure what the intended focus of my therapy is, but somehow I know this is what I need to communicate to her. 

I'm so glad to be in therapy. I know I've needed this. I can feel myself sinking into the chair, ready to ease into the experience of sharing myself and learning about myself. But then she says something, and I'm standing up, and I'm pacing around the room. I'm looking at her while I'm walking, and I'm telling her this: I think I thought of Charlotte once every minute for at least the first four years. I'm not kidding. And I had three new babies during that time, I tell her, even though I know this is not true. I am exaggerating because I want her to believe me, to see that new babies do not erase those who are gone. I tell her then that even now, 13 years later, I would be surprised if ever an hour has passed where a thought of either that baby, or the aftermath of her death, or my wounded identity, has not crept into my thought. I'm trying to make her understand. 

And then, it's over. People are walking in. Suddenly this is a school, it's a classroom, and it's time for me to leave this room and gather my living children, who are waiting outside. I'm thrust back into the busy-ness of my daily life, and I'm not sure she understood. I'm not sure I was validated. I'm not sure she believed me. 

Is this what my life is now? An unconscious desire to advertise what roils inside me: a loss so incomprehensible that I wouldn't be able to get someone to understand its depth even if I tried? Is this dream describing perfectly what happens when I start to contemplate my loss, that life interrupts and gets in the way? Is it communicating to me my subconscious wish that all of my friends, many of whom did not know me at the time of Charlotte's birth and death, would somehow understand the depth of what I've experienced and look upon my life with deep reverence? 

And then I take the step back, and I think about those who have survived war, and those whose personal losses are far more numerous and complicated than my own. And I must remind myself that my own dear baby's death was the one that was the most important to me, and I have a right to feel the need to be seen. I have a right to still be reeling, recovering, and trying to figure out what this means, even now, even 13 years and 23 days later. 

On Teaching.

I used to be a teacher. Way back, when I was "passing the time until I could have a baby". As a young, enthusiastic post-grad, I got a fellowship to Smith College, was handed my Master's degree. I went off to teach kindergarten at a local private school. It was a beautiful way to pass the time.

How I adored tying those shoelaces, blowing noses, and getting hugs and kisses every day from those sweet little faces. I did drink in the challenge of teaching children the mysteries of decoding text and exploring unfolding monarch butterflies, but most of all, I just wanted to nurture them. I wanted to hold them and settle them and ground them in the world. I think what I really wanted to do was mother them.

And then, only a few years in, we decided, to heck with it. Let's just have a baby. And we did. My kindergarten class watched as my belly got bigger, and bigger, and bigger. They clustered around my ultrasound photos and helped me choose names. A few days before my due date, we all gathered around a huge cake to celebrate, and I cried when I said goodbye to them. 

I'm sure not a single one of them will ever forget that their kindergarten teacher's baby died. But she did, and strange as it was, I crept back into the school the next fall. This time, the children held me. They settled me and honored me with simple phrases such as, "You must feel really sad", and "Charlotte was really cute." Their honesty taught me so much. They were the only people in my life who did not expect to get the "old me" back. They accepted that something was changed, and they thoughtfully explored what things were like for me. They asked questions that would have sounded shocking coming from the mouth of an adult, but they were the questions that I longed to answer. I was grateful to go to work every day. 

Those little children shepherded me through that next year, and through my pregnancy with Liam, with their honesty and their love and their small, wet kisses and sticky, dirty fingers. I could never appreciate anyone more than I did those children, that year. Those children represented the truth of what my life had become. I knew they had so much to teach me.  

And now I am back to teaching, in my own way. It has become one of my fiercest passions to work with the community of caregivers who will one day be faced with a frozen-faced mother who is learning that she will never take her baby home. It's become a hunger for me to determine what tools I can possibly provide these caregivers with so that they will be able, like my students, to lovingly but thoughtfully take someone by the hand and speak honest, true words in the face of an unthinkable tragedy. Those children taught me so much. And I'm trying to pass along their legacy. 

I was pleased, then, to receive an email recently in response to a small class I offered to a group of aspiring midwives. 

I just wanted to write to thank you so much for sharing with us today. I feel so honored to have had the opportunity to share a space with you. You were filled with so much wisdom and honesty, I was so wholly grateful for your presence.  

A few weeks ago, we had a class on Pelvic Exams. Our instructor got on the floor - whipped her legs apart and very relaxed, introduced us all to her vagina. It was astonishing - and definitely set the stage for comfortability with our own bodies following. It struck me while you were talking at one point today - that you were doing the exact same thing on an emotional level. Even more so than the pelvic exams, I truly cannot fathom the courage that takes, and I am ever so grateful to you for it. Your expression of accessibility and honesty was such an example for ourselves to be just that to ourselves, for each other, and for the women we will one day (hopefully) be caring for. Thank you so much for coming to talk with us -  It was truly a 'life-thought' changing day, and I am so thankful to you for it.

So perhaps, then, I am figuring out how to bring myself down to the level of a five year old, who has no long skirt under which to hide her emotions. She doesn't have the tools to try to mask the pain or the awfulness of what's happening. If I can demonstrate this, then may be some of the truth of it will seep through to those I am teaching. 

I can only hope. 

Nobody to Blow Out the Candles—Finding Birthday Traditions after Your Baby Dies

Healing a Heart
By Sara Barry

Last year, as I spread the rich chocolate frosting on Henry’s birthday cake, the smoothness that wouldn’t be punctured and punctuated by candles broke me open. I let loose tears that had been waiting for something to free them.

Birthdays are like that. Winding me tight, waiting for release, and as we move further away from the day he was born, that tension seems to happen under the surface. I almost don’t notice it. Until I do—because I’m snapping at my kids or crying over a song—or breaking down over perfect frosting.

Part of me is in denial that Henry’s birthday is coming up fast.

It’s OK because I don’t need to send out invitations or ask what kind of party he’d like to have. I don’t need to think about a present or hope the weather cooperates.

His birthday isn’t about what he wants, but about remembering him, celebrating his life. And to do that I fall back on tradition. Birthdays are hard, and not having to figure it out every year helps.

I keep it simple: on Henry’s birthday, there will be cake for breakfast, and I will work in his garden. 

We’ll eat chocolate cake and sausage with our neighbors—the once little girl who offered to sit with Henry on the first day of kindergarten and with her brother, who came in every day the winter after Henry died asking, “‘Enry ‘ome?” The tradition started with the living after he died, but we extend to Henry. He’s part of us.

I’ll buy something new for his garden and give myself space and the soothing work of weeding and tending.

These traditions evolved over the years as I settled into what felt the most right on a day that never will be.

The first year I was at a loss. I stressed about finding the perfect way to honor Henry’s birthday, convinced that it would be what we did every year.

I read about things other people did:

  • Planting a tree on the first birthday
  • Random acts of kindness in their child’s name
  • Balloon releases
  • Delivering bags to be distributed at the hospital
  • Buying and donating a gift for a child your child’s age
  • Fundraisers for causes related to the child or grieving parents
  • Taking the day off as a family

There were lovely ideas, but many of them were too much for where I was. I felt like I should do more, but I did what I could.

For Henry’s first birthday, we gathered with family. We released one heart shaped balloon and gave others to Henry’s cousins. We planted the peach tree that I had intended to plant for him had he lived—and a red flowering hawthorne that family had sent to us.

And we received a gift—a sign for Henry’s Garden. From that the lasting birthday tradition grew.

Henry’s Garden is a mishmash of perennials that people have given us and the I have selected each year. It’s dotted with heart shaped rocks. Each year on Henry’s birthday, I clean it up—weed it, move things around, plant something new. I’m at home in the garden, so spending time there is soothing for me. I’ve been out there in mist turning to torrential rain and in unrelenting heat. I’ve wiped away sweat and swatted at bugs. And through it all, my heart opens wide to my boy not there.

I’ve spent parts of Henry’s birthday eating burgers and keeping my kids from falling in a pool. I’ve set up for Science Night at school. I’ve read stories and breathed through meltdowns. But there is always cake. There is always time in the garden. Every year I hold space for my boy in a world that keeps on moving.

Do you have a birthday tradition? How do you honor—or just get through the day?

 

Meet Our Board: Jacqui Kates!

My name is Jacqui Kates and I am an Obstetrician/Gynecologist in the Pioneer Valley. I have lived and worked in this area since 2006. It was soon after that I first encountered Empty Arms. At the time, I was in private practice in the Northampton area and had a strong desire to provide extensive emotional support for my patients.

As an obstetrician, I am fortunate to share the moments of immeasurable joy with my patients; I am also honored to be present for, and bear witness to, the overwhelming sorrow that is experienced when a child dies. Therefore, I am forever grateful to be able to guide my patients and friends toward Empty Arms. This is a welcoming community full of caring, non-judgmental folks who offer meaningful support and compassion that extends beyond the clinical setting.

I have recently become a member of the Empty Arms Board. In this role, I am very hopeful that I will be able to help reach more individuals and their families to assist them at such pivotal moments in their lives.

I currently work as an obstetrician/gynecologist at Women's Health Associates in Westfield and Springfield. I am also on staff at Baystate Medical Center, where I supervise and teach residents and medical students. I have been fortunate enough to have an outstanding medical training, but traditional training often ignores this particular aspect of our patients’ lives. I consistently strive to incorporate the psychosocial aspects of medicine into my teaching.

My professional interests include the psychosocial determinants of health, adolescent gynecology, community outreach, and perinatal mood disorders (including postpartum depression and anxiety). I have worked with MotherWoman, training other healthcare professionals to diagnose, treat, and support patients with perinatal mood disorders. I also volunteer and am the vice-president of a local private school board. I live in Northampton and in my rare and ever so precious free time, I try to spend every second soaking up time with my extraordinary family. 

Thank you!!

Thank you. 

We are grateful for your generosity.
We are honored by your compassion.
We are overwhelmed by the voice you have given
our community and our babies. 

Over 250 individuals and families donated more than $11,000 to Empty Arms. We received an additional $13,000 in matching grants and prizes from the Community Foundation of Western Massachusetts, the Howard E. Stark Charitable Foundation and Jeanne and Norman Reynolds (Charlotte Amelia's grandparents). Combined, Empty Arms received almost $25,000 in donations. 

Truly incredible.

You've funded our organization's new home for the next year.
You've funded our Peer Companion Program, supporting families one-on-one from their time in the hospital to their return home. 
You've funded our support group meetings.

Thank you.

C.C.

Ryan and Katie during their pregnancy

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.

Zady

                                     

waiting at the operating room door

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 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

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 

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. 

Is the Time Before Your Baby Died a Bittersweet Memory?

Healing a Heart
By Sara Barry


The sun was bright in my face, the soil warm and soft beneath my bare feet. My belly balanced on my thighs as I leaned forward to pick up a clump of dirt. As I shook soil from the roots of weeds, the memory came as it does each year.

Planting holds muscle memory for me. Each year as I prep the soil to plant the earliest seeds, I remember May 2007, when my belly full of life balanced on my thighs, when leaning forward was a little harder. My neighbor did the hard work that year of digging and turning the soil with a shovel. I squatted and broke up the clumps with fingers and hand tools, tossing the weeds into a wheel barrow.

 

This year, like the last  eight, I remember that hopeful me, planting seeds for a garden I wasn’t sure I’d tend (I was going to be busy with a new baby after all). I remember that hopeful me waiting for new life, both a fuzz of green sprouts and the baby I had known for nine months but had yet to meet.

For the past eight years, the smell of freshly turned soil, the feel of dirt underfoot, the shaking and tapping of root-bound clods of earth brought me back to those last weeks before Henry was born. I’d remember the hope, the anticipation, the expectation—and how much went unfulfilled. What do you do with hope that gets stunted like that?

The earliest prep work in the garden with all it’s connected hope became one of the strings of bittersweet memories that followed me through the years.

But this year, as I bent my face away from the sun, clearing away weeds earlier than ever before, that muscle memory came back to me. But I stayed in that moment where I was squatting and leaning over my big belly. I stayed in that place of hope and expectation that all would be OK, and I realized what a gift this memory is. That moment is not tangled with beeping monitors at the hospital or the anxiety of waiting for surgery. It isn’t a moment of joy and love wound tight with fear. It’s love. It’s hope. That’s it.

Sometimes, I get tired of telling my story. I feel like I’ve felt it all, said it all before too many times. And then something new catches me. A new memory, a new angle, a new understanding. My beautiful, loving hope is as real as the grief that came after. They are connected in a way that can’t be severed, but I can sit with that hope and the love that surrounded it. I have sat with the grief, with the what ifs, with the won’t ever bes. I can sit with the before, the possibility, the pure hope and delight. I can sit and hold that memory too.

***

It took me a long time to see the gift in this spring ritual memory. For years it was a reminder of what I had hoped for—expected even—that didn’t happen, not the reminder of that place of love and joy and hope.

Have you been able to get back to that place, to cherish those memories, or is it too hard, your memories too tangled? What action triggers your memories most?

 

VERY exciting news!

Hello Empty Arms friends, supporters, and followers,

We are so excited to announce that after almost 9 years of patiently (and sometimes painfully) organizing our meetings in generously loaned spaces, Empty Arms Bereavement Support has found a home.

Tucked into the front corner of the Florence Business and Arts Center (formerly the Florence Community Center, and also known to many as the old Florence Grammar School), we have secured a room that will be large enough to house all of our current programs and allow us the ability to offer far more than we are currently able to offer without a location that is exclusively ours.

We are beyond excited. For years, we’ve longed to tuck people into comfortable chairs with cups of tea or coffee and make them feel at home. It’s our belief we will truly be able to do that in our new space. We are so grateful that we can design a space that truly allows us to provide a physically safe and comfortable environment for our community. No more will we face the over-formal setting of the conference room table, and we can say goodbye forever to fluorescent lighting.

We also see incredible options for expanding the support we provide with space of our own. No longer will people in crisis have to wait until the next support group meeting to connect with someone from Empty Arms in a private, safe setting. Our space will be large enough to not only host support groups but also trainings, potlucks, and parenting after loss playgroups. Our staff can work out of organized offices and become more productive. As our capabilities continue to expand, we look forward to learning what other types of programs and events we can offer.

You’ll see more details about our new space in upcoming emails. This is a HUGE step for Empty Arms! In the past, we’ve always felt compelled to scrimp on our expenses, but we feel the time has come to prioritize a home. It’s going to take everyone’s participation to make this happen. On May 3rd, Empty Arms will be participating in the Valley Gives Day campaign again! Our fundraising this May will be specifically targeted towards starting a nest egg to ensure that we can stay in our own place for years to come. We’ll be asking every person involved in Empty Arms to reach out to their communities to help us fundraise to acquire and maintain what we believe will be a true asset for all Empty Arms families now and in years to come.

With great hope and anticipation,
Carol and the team at Empty Arms