Talismans and Touchstones: What Gets You Through

Healing a Heart
By Sara Barry


I found my forget-me-not charm the other day while scrabbling my fingers through a dish on my dresser for an earring match. The charm is tiny, the size of a baby finger tip. The silver-tone metal forms a five-petaled flower. Below it hangs a tiny green glass “emerald,” the birthstone for May, the month Henry was born.

At first I only wore it on the days I expected to be extra hard: the anniversary of his death, a grief group meeting, Mother’s day . . . I wore it, as a talisman on the days I knew I would need more strength.

And then I started wearing it every day, because it turns out that ordinary days were filled with lots of little hard moments and anything you can do to get through helps.

That necklace survived daily use and two grabby infants. Then one day, the chain caught on a low branch of our pear tree and snapped.

I could have gone to the store to get a new chain. I  could have put it on  another chain I already owned. But I didn’t. I decided to try not wearing the little flower.

I felt lighter without it, somehow, though that tiny charm couldn’t have weighted an ounce. I felt buoyant.

I noticed, though, that I kept putting my hand to the spot where my collar bone joins. The spot where for so long my forget-me-not sat.

I had gotten into the subconscious habit of touching it when I talked about Henry or a strong memory of him surfaced or grief washed over me in a wave.

My hand went to that tiny charm to steady myself when people asked, “Do you have other children?” or when I saw a child his would-be age or heard the name Henry.

It became a reflex to reach up, as if there were strength or magical solace in that tiny metal flower.

Whatever power that charm had, it’s gone. The forget-me-not charm is now just a trinket gathering dust on my dresser. I don’t need it these days. But for years it was my touchstone, something to steady and help me, a place to pause while I took a deep breath and found the words I didn’t want to say.

We always carry some piece of our children with us, and sometimes we carry something else with us too. Not a reminder—we don’t need that—but something to hold onto, literally, physically, when we feel like we’re drowning.

What do (or did) you carry with you, literally, as a sign of your child? Can you imagine letting it go?

Meet our Board, Jessica Kuttner!

Empty Arms is so excited to introduce our newest Board Member, Jess Kuttner! Jess will serve as a resource for peer companions and support group facilitators. Welcome, Jess!

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While I have not personally experienced the loss of a baby, my early life was certainly shaped by loss.  My mother was diagnosed with cancer when I was 17 and lost her battle with it 3 years later when I was 20.  In the months just prior to her death, my mother started what she called a "healing circle" with close friends and family to process the impending loss together.  This incredibly potent experience planted a seed in me about the power of group support in the face of heartbreaking loss.

I currently work as a psychotherapist in private practice and specialize in postpartum mood complications, grief and loss, and trauma.  I am trained in the MotherWoman model and facilitated mothers groups for two years in Ashfield through It Takes a Village. I have been a member of the Franklin County Perinatal Support Coalition since 2013.   I also volunteer as a Healing Circle Leader (group facilitator) for Comfort Zone Camp, a weekend bereavement camp for children who have lost an immediate family member.

I have experienced both personally and professionally the deep connections that can be forged in the wake of loss, and the healing that can happen through coming together with others who are on similar journeys.  Empty Arms weaves together several of my professional interests and personal passions and it is an absolute honor to be joining the board.

How Grief Shifts Like the Lengthening Days

Healing a Heart
By Sara Barry

Tonight, the sky was a bruise of color to the west, but still, the light lingered, even as dinner got done later than planned. It made me smile, that blue sky and lingering sun glow. I noticed that the light was staying later about a week ago, startled to look at the clock at 5:30 and see blue sky out my window.  

Since the shortest, darkest day in  December, the days have been growing longer the light staying more each day. One minute or two, each day.

On December 23 or 31, or even January 30, this change wasn’t noticeable. But those minutes add up. So suddenly it’s light at 5:05, 5:23 5:41 . . . I should be starting dinner, and it’s still light. I hadn’t noticed the lengthening days. The light crept up on me. The return of hope and joy in grief can be like that too.

Grief is so dark, so heavy it’s easy to lose sight of changes in you. It’s easy to think you will never come back into the light or that you will see it, but it won’t last. Yes, the overall effect of grief easing takes far longer than the turn of light from December to late February, but like the light, the change is slow, imperceivable.

Until one day you notice that your breathing doesn’t tighten first thing every morning, that you’ve gone a whole week without bursting into tears, that you say your baby’s name with more ease, more lightness. It still hurts. But there is a shift that has been happening that you hadn’t even noticed.

Working through grief is hard, exhausting work. It’s trudging drudgery. Sometimes we don’t see the change because it’s subtle, imperceptible. And sometimes we are so bowed over, we fail to notice what is happening around us.

I remember finding a picture of myself, from several years after Henry died. I was smiling, which wasn’t new. I knew how to form my mouth into the right shape even soon after he died. But in this picture, the smile reached my eyes. Perhaps it had been edging up there, inching its way like the growing light, until it reached all the way into my eyes.

You don’t get over grief. You don’t get to the end of it. But you get through the darkest hours. The light returns, however slowly.

I saw the light tonight and even though the wind is still biting and my kitchen is a jumble of boots and snow pants and mittens, I can see the day coming when the bulky clothes will be packed away, when I’ll run outside barefoot, sink my hands into the ground. I see the day coming when I’ll start dinner too late because the light tricks me into letting us all play longer than we should. I see the day when the light will lengthen and I’ll almost forget how early and how deep the darkness had come.

What shifts have you felt in your grief?  

Meet our Support Group Facilitator, Anna Westley!

The season of infertility between the births of my son and my daughter was the darkest time in my life. We started trying to conceive when our son was three. We welcomed our daughter the day before our son's eighth birthday. In between was month and after month of devastating disappointment, debilitating depression, and increasingly crippling isolation as our friends welcomed new babies year after year. I sought answers and solutions, endured tests and treatments, explored alternative avenues for growing our family and struggled to find coping strategies and emotional support. If there was a safe space where I could have gone to be in community with others walking this path, I would have gone in an instant!

Since 2005 I have worked with families as a birth and postpartum doula. In 2012 I took the MotherWoman training and, in collaboration with It Takes A Village, started a weekly support group for new mothers in rural Ashfield, where I live. I know how powerful and healing it can be when people gather to share what's really going on for them in a safe, supportive, non-judgemental space. During my infertility years I often wished there was a local infertility support group that I could attend. It is a dream come true and an honor to offer such a space to struggling families through Empty Arms Bereavement Support.

When Joy Finds You on the Darkest of Days

Healing a Heart
By Sara Barry

Some Decembers you don’t put up a tree. You let others do the shopping and the wrapping. You wait to get through the month.

Some Decembers you put up the tree. Brave the crowds for one whirlwind shopping trip, see the sign in the bank window Dec 22. Feel your hands get heavy and your arms feel like they will float away. That’s how grief hits sometimes.

Some Decembers you march into the month determined to do battle, reclaim the joy. Some Decembers you whisper, “Uncle” and admit defeat before it even arrives.

And then one December, you approach the month with less trepidation than usual and no false bravado. You look at the calendar and the to do lists, the events leading up to The Day.

And you stop there, before you even get to Christmas.

The Day. The day he died.

You take a deep breath. And you begin.

But instead of telling yourself December is hard, you look at each day as its own. You move through December 1 and December 2.

You run the 5K. You host the birthday party. You bake cookies to take to school and host another birthday party. You give space to the joy part of the month, the living part of the month.

This year, you don’t hold joy and sorrow all through the month. You leave space for the grief, but you don’t pick it up. This year you can choose to do that. It wasn’t always that way, and it may not always be.

This year you find yourself not feeling the weight of the month so much. Yes, you burst into tears reading one of the Christmas stories, the one about the man who’s wife and baby died. But you don’t find yourself bursting into tears at the store and the bank and the school parking lot.

You approach each event as it comes instead of trying to hold all of it. And so you find yourself on December 16, on the night before the day he died 9 years ago, not quite sure what is happening.

You sit by the fire in the glow of the tree. You feel mostly calm. Quiet. You turn off your email and Amazon and Facebook. You want to trust that you are OK. No, you know you are OK, but you want to trust that the weight won’t crash down unexpectedly. You want to believe that this year is different. Better.

You think that may this year you won’t crack open to the wild rawness that has filled so many Decembers.

You worry that you won’t crack open. You don’t feel him, and if you don’t feel the heavy grief, what is there?

You don’t know. So you wait to see what December 17 will bring this year. Whatever it is, you will let it come. Let it come.

The day comes with a snow storm that makes everything slow down. Your daughter’s basketball game is cancelled. You aren’t expected to be anywhere, do anything. You see this as a small gift.

You see the beauty of the snow, the beauty you were too numb to see to nine years ago. You breathe the cold air deeply. And still, you are restless, out of sorts.

You don’t know what to do with this day, so you do what you always do. You make space for memory, for grief, for love.

Each of these nine years it has been different. There have been years of distraction and deep focus on new life. Years when you could barely get out of bed. There was the year you brought yourself, surprised, to a holiday party. A small one. A safe space. One where people knew what day it was for you. One where people knew about empty arms.

This year you watched your girls build Legos and turned on a Christmas movie for them. This year, you said yes to dinner with friends who are like family.

This year, you surprised yourself again and said yes to night sledding. You walked with your headlamp following little legs running ahead. You trudged up the hill through the cemetery (not his) to the top of the sledding hill.

You watch the kids take the first runs filled with whoops and laughter. You look at the bare trees against the gray clouds. You breathe deep the cold again. You plop down on the saucer sled that was handed to you and start spinning down the hill.

You feel the cold air and snow spray on your face. You spin and tip at the end. You get up smiling and trudge back up the hill. You take a few more exhilarating runs.

Then you stand at the top of the hill, smiling. Your heart is pounding. You feel alive. And as you smile spreads, your chest expands too, with love and light and joy.

Nine years ago, eight years ago, even last year . . . you couldn’t have imagined yourself smiling at the top of a hill covered with snow on this day. Real smiling, whole body smiling. But here you are.

 

You Don't Have To Be Grateful...

Healing a Heart
By  Sara Barry

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You don’t have to be grateful.

 

We are thick in the season of gratitude. A holiday of thanks and abundance nearly upon us. There will be people—some who have no idea what you have lost, some who know intimately what you are missing—who tell you: Be thankful for what you have. Count your blessings instead of your sorrows.

If that brings you comfort, follow that advice. But for many people hurting at the core, missing so deeply it sears, that saying feels like a demand. It sounds like, “Stop whining about what you don’t have. Look at what you do have instead.”

Instead. That’s the problem.

Gratitude is tricky. You’d think it would be most present when life is going smoothly, when wonderful things are happening. Yet that’s when I find it easiest to forget, to get complacent. When times are hard, gratitude can be something to hold onto. But not instead of grief or sorrow or anger or fear. With it.

Now, nearly nine years after his death, I find gratitude easily if I stop to remember—and I practice gratitude each day. I’m thankful for two healthy daughters, a warm home, plenty of food. I’m thankful for family that laughs and cries with me. I’m thankful for music and dancing, letters from friends, green things growing in the spring and the stripped down beauty of November.

It’s not that I didn’t see these things in the early days after Henry’s died. I recognized the same warm home, but it felt strangely quiet without him in it (even though he hadn’t been here long). I wasn’t one of those people who found food tasteless in grief, so I cooked hearty stews and cheesy macaroni, filling myself with comfort food.

I was rich in friends. The one who called from New York every month to listen to wherever I was, whatever I was feeling. The one down the hill who met me for tea just as regularly. The ones who reported cardinal sightings and made donations and remembered me on Mother’s Day. The one who stopped in for coffee each morning with her kids who broke my heart and healed me at the same time. I am still rich in friends who stuck with me even though I couldn’t be a good friend for a very, very long time. I’m thankful for that.

In those earliest, rawest days, I was thankful for small gestures: a cup of coffee, a white rose on his anniversary, a niece who wrote his name a paper heart for a fundraiser.

But in the first few years, they were all muted by grief—or bright, so bright, but tiny in a sea of darkness.

Still I held on to my gratitude, however small.

I held on to the warmth of sunshine on my back on a muddy, raw, blue sky spring day.

I held onto the call from a friend asking, “How are you?” and giving the space to answer fully and deeply and messily.

I held onto the carrots I found bright and crunchy, still growing in the sodden March soil.

I held onto the laughter that broke me instead of tears when I got together with my sisters.

I held on to the memory of heft of his body lying on my chest, both our breaths slowing.

I held onto each note, each cardinal sighting, each thinking of you.

I held onto the meals dropped off, the cups of coffee sat over.

I held onto the hope of new life.

I held all of it in its fullness, and I held my sorrow and emptiness too.

We hear about a time to laugh and a time to cry. A time to dance and a time to mourn.

We are made to think these are two things. Count your blessings, not your sorrows. But we can do both. We can laugh until we cry. Dance even as our heartbreaks. And some days we can’t. Some days grief is just a steamroller knocking us flat. But inside, underneath, I think gratitude still lives.

I loved, and still love. I open again and again to joy. And still as much as I let go that sorrow is part of me.

It irks me when people respond to grief with a demand to be grateful, as if we don’t need to feel the hard emotions. As if you can’t hold both grief and gratitude together.

You can hold your thankfulness alongside the space in you heart where someone is missing. You can hold both even if your loss feels as big as the world and your thanks feel like a grain of sand. You don’t have to feel grateful in your grief but you can.

A Beginning at Mercy

Teaching is one of the most powerful things I do. When I’m faced with an audience of nurses, midwives, or other birth professionals, I have the unique opportunity to communicate the wisdom of those who have already walked the road of loss to those who will be present when another family begins this most difficult journey. I’m mindful to always present as a collaborator, and not expert: it’s important that each and every professional I reach sees Empty Arms as a resource and a partner in caring for the bereaved. It’s always my goal to make trainings relaxed and fun, and I work on a number of levels to invite professionals to settle into a conversation about what is usually considered one of the most stressful topics in the birthplace.

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Last week, I was invited to Mercy Medical Center in Springfield to offer a preliminary introduction to our Peer Companion Program, which we hope to implement there. The new Nurse Manager at Mercy, Jennifer LaCasse,  has a history with Empty Arms through her former position at Cooley Dickinson, and she deeply supports our work. Jen asked me to come to Mercy to introduce the Companion Program and give the nurses, especially the new ones, a sense of what to expect when a loss takes place.

When I’m teaching, I always like to assess what information participants walk in the door with. It’s helpful for me, but it’s also very helpful for them to activate what already exists in their minds when they think about loss. So before I began to speak, I asked each nurse to write on an index card what first came to mind when they imagined themselves caring for a family whose baby had died. Each nurse took a green index card and scrawled on it with a black pen, and they handed them to the front.

These nurses, you might imagine, would have an array of concerns about working with a family whose baby has died. They may have received some training in nursing school about what to expect and how to proceed, or they may have received none. I glanced through the cards and smiled to myself as I read the following:

What do I say to grieving parents?”

“What do I say?”

“I don’t know what to say.”
“I worry about saying the wrong things- I would not want to further upset the patient or family”

“I’m afraid I won’t know what to say to comfort them. I don’t want to make things more difficult for them”

“I’m afraid of saying the wrong thing”

It was clear that the greatest fears that nurses had was simple interacting with bereaved parents. Who best then, to teach them, than a parent herself who will force them to look at her in the eye, who will talk about the difficult journey, and make it real?

So I began to talk. How do you offer a crash course in bereavement care, you may wonder? What recipe card could you possibly hand off to a nurse that would offer a step-by-step guide on how to care for a person whose baby has just died? The answer is, of course, that you can’t. Each family, and each individual, is different. Everyone carries a different story, a different history, and a different future. The only thing that is consistent among each and every family that we care for is that they all need someone they can trust, who can take care of them with kindness and compassion, and who can teach them about what people often find helpful when they find themselves in such a terrible situation. While much of nursing care can indeed be charted on a checklist, bereavement care is often about stepping out of our scrubs and into our most human shoes and offering a kind, listening ear, and guiding a family with what knowledge we have.

Through my own words, which carry my own story of loss and the stories of countless other families who have sat around the circle in Empty Arms groups, I spoke of the strong emotions that surround a person when their baby has died. Beyond sadness and grief, I described the guilt and shame and blame that often surface. I dove into the utter helplessness that families often experience, and tried to help the nurses to imagine what it would be like to be offered options when you aren’t sure what either of the choices mean. Using clear, true examples, I was able to paint a picture for them of what this moment might feel like to a family. I helped them to think through what would be right to say, and what would not feel helpful to a family. We brainstormed what the perspective might feel like to a parent, and what might feel most helpful at that time.

Overall, I encouraged them to adopt a mentality of partnering and compassion. With each family I work with, I say out loud:

I want to help you, but I’m not sure how to do that. I’m going to do the best that I can to say the right thing and do what helps you, and I trust that you will tell me if you’re ever uncomfortable with something I say or do.”

With these words, I clearly communicate my intent to help. Every nurse that serves the bereaved can also present him or herself as a vulnerable human who is trying to do the right thing. We can all surround every statement and deed that follows that statement with our intention to help and care. And then, no matter what we say, our words can be coated with that intention.

I took lots of questions from the nurses, including what to expect a baby to look like, whether it was okay to cry, and how to organize photographers. At the end, I invited them to offer one more note card’s worth of feedback to me on the lesson if they chose.

They filed out, their 3:00 shift about to begin, and I was left hoping I’d offered them something they would use. After, I read from the following:

“I found it exceedingly helpful for you to talk about the different emotional levels that parents may go through. I also really appreciated the discussion of the humanization and normalization of the process.”

“It was so helpful to hear from you how to direct conversation with a family about their options”.

“It is so helpful to know that there’s someone I can reach out to- to help not only the parents but to guide me as a nurse, as well.”

I am so grateful that we are stretching our fingers south and will hopefully be building a strong presence at Mercy in the months to come.

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? 

Meet Our Support Group Facilitator, Marisa Pizii!

My name is Marisa Pizii, and I have lived in the Pioneer Valley for 11 years. I first met Carol in a MotherWomen training in 2009. In 2010, I ended my pregnancy with my son, Josiah, due to a difficult prenatal diagnosis. 

I'm thrilled to join the Empty Arms facilitator team and support families, especially those who have Terminated for Medical Reasons.  I believe strongly in the supportive nature of community, and the power of this work in building support and healing. Community is at the heart of healing, and it was at the heart of my own healing journey. 

I'm currently the Program Director with the Prison Birth Project, and I facilitate a parenting from the inside support group. 

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?