Does It Get Better?

By Sara Barry

I have a friend whose son died recently. He wasn’t a baby, but he was her baby, the one who first made her a mother. She’s been walking around in that fog of early grief unable to do much, sometimes feeling almost OK and other times feeling steamrollered.

“Does it get better?” she asked.

And my mind sifted through images of me alone in the house on a dark winter night feeling like this was not my home, searching in the blue light of a computer screen for a story like mine …

walking my cousin’s baby on the beach that first summer after Henry died, crying into her hair …

waiting for the bus that Henry never got on …

holding Kathleen for the first time as the darkness of a year of Henry gone settled around me …

standing on a hill in the cold, dark night on the anniversary of Henry’s death years later feeling joy welling up . . .

Does it get better?

Some say it gets better. Others say it gets different. Either way it takes time. I tend to tell people the brutal truth: Year 1 is almost unbearable, and year 2 is harder. Usually I tell them as they start in on year 2, floundering, struggling, wondering if there is something wrong with them that they aren’t “better.”

Does it get better?

It does, but it takes longer than we expect. It does, but it takes longer than we’d like.

You know how a stomach bug slams you hard, then once it passes, you are weak and exhausted for a long time afterward? You can’t do what you usually do. You wonder why you’re not back to normal.

Grief is like that too. It wipes you out for a long time.

And then it does get better. We refill our reserves. We get stronger again. We get more practiced in answering the hard questions. We get more used to telling our story and seeing kids of a certain age.

Does it get better? Will I ever be happy again? Yes and yes.

How can I live a full life with a huge hole in my heart?

You just do.

You tend the hole, tend your loss, and you open to life around you. You let love and joy and beauty in. You let yourself be loved. You let yourself be filled. You keep missing and your heart fills up at the same time. You don’t have to know how, you just have to open enough for it to happen.

What To Tell Kids

By Sara Barry

Recently a friend asked if I had any advice about her son’s recent questions about his sister, the one who died before he was born. She worried that her answers weren’t enough, because he kept asking.

It reminded me of the raw, numb days right after Henry died, when my young neighbor would come in each morning to wait for his sister’s bus.

“’Enry ’ome?” he’d ask.

The first time he said it, I couldn't breathe.

Each time he came, he'd ask again. I would say no and remind him that Henry was in heaven with Oma (his great-grandmother), which is how his parents had explained it to him. And he would walk over and look in the bassinet in the dining room, just to make sure. Then he would ask to see Henry's other bed (the crib that used to be his), and we would go up and look at the crib. We'd come back down stairs and he'd ask for Henry again. And I would say that we could look at his pictures, so we'd go around and look at all the pictures.

He didn’t ask them to hurt me. He asked again and again, because that’s what young kids do. He asked because he was trying to understand.

I told my friend she didn’t need to give more answer, but just keep answering. Her son would let her know if he needed more.

I wonder sometimes what my kids make of having a brother who died, a brother they never knew.

When my daughter Kathleen was three months old, somebody asked me if we would talk about Henry and show Kathleen pictures of him when she was older. I smiled, because Henry was already part of her life.

From the beginning, we have talked about him with his sisters. They grew up with pictures of him around the house. He’s in the alphabet book I made for Kathleen and on the family photo blocks she played with. He’s in the songs we sing at night.

He’s not here, yet very present in our lives.

My girls can say to me at bedtime, “I’m sad I never got to know Henry” or ask how old he’d be.

When a friend looks at a picture of Henry and asks, “Who’s that?”, they answer matter of fact, “That’s Henry. He’s my brother. He died.” Or, as I overheard on the soccer field, “Well I don’t have a younger brother. I have an older brother and he’s dead.” A simple statement.

What I love about kids is that statements like this don’t stop conversation. Nobody stops doing cartwheels or eating snacks because you say, “My brother is dead.”

And yet . . . I wonder what is going on as their growing hearts and brains understand things in different ways. How does grief work when you never know the person who died, when you grow up with a person missing and grief around you?

I go looking for information about grief of siblings who never knew a baby brother or sister and find descriptions of replacement siblings.

My older daughter grew in me in that first year after Henry died. She grew from newborn to toddler as I navigated year 2 of grief. I know that I loved her fully and fiercely for herself not as a replacement, and still I wonder if my emotions in those early days, or even now, affect her in ways that will show up later. 

After I wrote about the question “How Many Kids Do You Have?”, I worried. What if my kids read this someday and think they are my “just” two, that they are somehow less than because their brother died, when the truth is they fill my heart every day.

Because the paradox of having living children and one who died is that your heart is always missing someone and always full. I have three kids—and two. My heart is full and missing someone. I find joy and gratitude every day even as I recognize grief.

I am grateful to my girls for opening me wide again to joy, but I don’t love either of them because they took Henry’s place. I love them unconditionally and fully, each with their own space, each for their own being. Henry will always have a place in my heart. It isn’t their job to fill it, nor would I want them to. I want his space for him—and I want my girls to fill their own spaces.

I can wonder all I want how grief affects my kids, but the best I can do is listen to what they say, share my feelings honestly, and answer the questions they are asking as they grow and change and wonder differently.

 

How do you think having lost a sibling affects your living children?

Why I Love the Gift of a Heart of Stone

by Sara Barry

“Here,” my 11-year-old neighbor thrust a bag at me. I looked at the birthday cake on the side, confused. It was over a month since my birthday.

“You don’t get to keep the bag. Or the scarf,” he said. I peeked in the bag and the “something” was wrapped up in a gold scarf. Whatever it was, it was heavy.

His mom shrugged. She didn’t know what it was either. So I reached in and pulled out the scarf covered item and slowly unwound it. I felt rough stone, and before I felt the shape, I knew.

Heart stone.

My Henry garden is dotted with heart stones small and large. So when he found the stone down by the river he brought it home for me. Later he placed it up in the garden for me among the other hearts there.

My heart stones come from the river we visit often and the beaches where I grew up. They came from a trip to Maine that first summer after Henry died and local trails just this summer.

The stones range in size from finger-tip dots to chunks big enough to need two hands to move. They are scattered everywhere. Henry’s garden, yes, but also my desk and dresser, the window sill in front of the kitchen sink, the mantle, the cup holder in my car . . . Every where I turn tokens of love.

I don’t remember how we started collecting heart-shaped stones after Henry died. The first presented itself to me, the heart shape showing up in the jumble of irregular shapes beneath my feet. It felt like a message, a hello from Henry, a reminder of love in the depth of grief.

They kept showing up on our walks and outings. My husband seeks them out, searches for them, though the last one he found he stumbled upon. He was traveling a trail he’s walked often this spring and summer, thinking about Henry when he tripped on it. “I probably walked over it a hundred times and never noticed it.” But he noticed it that day.

I love the ones that find you. I don’t seek out heart-shaped stones, but when I find them I pick them up, slide them into my pocket, the stone heart a talisman against my tender heart.

A few years ago, another boy, shyly thrust a hand at me and deposited a stone. This one tiny, but beautifully shaped.

“This is for you. I found it at the Cape,” he muttered before retreating. I love these gifts, both the token and the love inherent in them. And Henry remembered.

In the early days, I needed signs—the flash of a cardinal or the appearance of a heart-shaped stone. These days, I don’t need them, but I still smile these little reminders, these little hellos, these little messages of love.

Heart stones and cardinals are my Henry signs. Ladybugs, dragonflies, and red tailed hawks show up for other babies loved and missed. What shows up for you? Do others share their sightings or findings with you?

Our Stories: My sister, Emily Burke Nichols

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

Tell us about you.
I’m Sarah, and I’ve had the honor of volunteering with Empty Arms for the past two years. I’m currently finishing my MFA in poetry at UMass Amherst, and prior to that I worked in reproductive healthcare for six years. I reached out to Carol after listening to a podcast featuring poet Arielle Greenberg speaking about the stillbirth of her son Day

Tell us about your sibling. What do you want people to know about them?
My twin sister Emily died almost three weeks after we were born. I don’t have any conscious memories of her, but her life and death greatly shaped both of my parents’ lives and my own. While all of us would give anything for her to have lived, I am so grateful for her brief physical presence and ongoing influence in my life. In one of my first conversations with Carol, she spoke about continuing to watch Charlotte’s purpose unfold, and how her work with Empty Arms is one of the many ways she mothers Charlotte. I love that framing, and also feel that working with Empty Arms has been a wonderful evolution of my relationship to Emily.

How did your sibling and your grief journey change you as a person?
Well, I’ve never known myself or my parents outside of the context of Emily’s death. My dad’s little brother Joe died at the age of 18 from leukemia, just a year and a half before Emily’s death, so the impact of these deaths was very present in my upbringing.

As a young adult, it sometimes felt as though the best of us were on the other side— not just the best of our family (not just Joe and Emily), but the best of our own selves too. Who would we be, if we’d been able to go on loving them with their physical bodies present? Without the leaden desire to hear their voices, how would we move through the world?

My parents didn’t have a community like Empty Arms in their lives. They attended one session of a support group for bereaved parents, but another parent in deep grief said “you couldn’t possibly understand our loss because you have a living baby at home.” My parents grieved in isolation, and I can only imagine the difference it would have made if they’d received the kind of unequivocal support Empty Arms provides.

While grief was an undercurrent of my childhood, it certainly wasn’t static, nor was it an exclusively negative influence. For instance, I started writing letters to Emily when I was nine. As I’ve grown older, I’ve continued this practice. Every so often when I’m wanting guidance, or to mark an important event or anniversary, I’ll write to her. I cherish this history of correspondence as an ongoing source of comfort and documentation of the evolution of my relationship to her.

Her death has also been foundational to my career in healthcare. Over the past eight years I've supported many patients grappling with the impact of illness and death-- from Ugandan maternity wards to family planning clinics in the U.S. This year I’ll be completing my prerequisites for Nurse Practitioner programs, and I feel so lucky to have the honor of accompanying people during some of the most difficult moments of their lives.

Is there a way that you can pinpoint a change in your healing and grief journey because of your relationship with Empty Arms?
In our initial conversation, I was blown away by Carol’s generosity, the breadth of her acknowledgement for all kinds of perinatal loss. Having worked in abortion care for several years, I often felt a desire for language and practice that allowed both for women’s autonomy over their bodies and parenting decisions, as well as an acknowledgement that many of our patients were grieving wanted pregnancies that had ended in miscarriage or were terminated for other medical reasons. To hear Carol speak with genuine care and inclusiveness of all kinds of bereaved parents was incredibly heart warming. In many ways, working with Empty Arms has felt like a homecoming. Even though Emily and Joe’s deaths had a profound impact on my parents, it was largely unspoken. We didn’t develop any rituals around grief, nor did we have contact with other families who had experienced something similar. With Empty Arms I feel like I’m contributing to supporting families in a myriad of ways I wish my own family had experienced, and that has been quite healing.

What was the most important way Empty Arms offered you support?
It’s been so lovely to meet, and be in community with, the families of Empty Arms. To see all of the different fierce, vulnerable, and thoughtful ways bereaved parents support each other. In some ways my family’s experience felt like a rupture that was rarely looked at. I am in awe of, and benefit greatly from witnessing, Empty Arms families in their looking and speaking aloud of their many different experiences. It allows me to ask for myself, how do I want to relate to Emily’s death, and to her ongoing presence in my life? It is such an honor to contribute to a vibrant community filled with different ways of living in this world and remembering those we carry with us.

In what way do you think your connection with Empty Arms and its members has reached outwards to impact other people in your network?
I’m in my late twenties, and the pregnancy announcements from friends are pouring in. With each one I’m breathless at the assumption of life parents feel, or make-believe, for their child. So far, each child has lived, under the most fragile spell of luck. I know this will not last, and even two weeks ago I heard from a friend that a close friend of hers was experiencing her second miscarriage. It was such a comfort to be able to send her information for Empty Arms Support Groups, and trust that she would be welcomed and supported to feel a little less alone. I have no doubt that Empty Arms will continue to have a tremendous positive impact for my friends, family, patients, and our broader community as a whole.

What else would you like to see Empty Arms accomplish? How do you envision the organization could make that happen?
Working on the Support Group Guide with Carol has been thrilling! I’m so excited to have more print and online resources for bereaved parents. I also hope we can expand our network to include support for families and providers at even more facilities regionally. What an amazing, strong community Empty Arms families have created! I can’t wait to see what’s next.

 

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?  

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.

 

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? 

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?

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 ofher 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. 

Joy Comes Back

Healing a Heart
By Sara Barry

The first few notes of the song swelled. I felt the music, smiled, then felt my chest tighten with memory.

I wanna be ready.

Earlier this month, my husband and I went up to Ashfield to see Rani Arbo and Daisy Mayhem. The place was packed; the kitchen backed up; the crowd loud over the band during the first set.

As we waited for our burgers, I told my husband that the first time I had heard Rani Arbo was at the Green River Festival. “Remember that time when Kath had free tickets and Kathleen was a baby?” He nodded.

I had been reluctant to go. Kathleen wasn’t sleeping, and we were deep in the second year after Henry’s death. While my healing had taken a huge leap when Kathleen was born, I was still wiped out by early grief and learning to navigate the world with a baby who died and one in arms.

I was tired, physically and emotionally. And it was raining. But I went.

In a tent out of the rain, I listened to music, let it flow through me. And then this song started low and slow. It started with the weight of where I was:

I wanna be ready.
I wanna be read-y.
I wanna be ready. 
When joy comes back to me.

And then it exploded into its own joyfulness, and I couldn’t help but dance.

You know how a smell can bring you back? How one minute you’re washing your hands then the smell of hospital soap puts you right back in the NICU, the worry and fear alive again in your body?

Music can do that to. When I heard the opening notes of “Joy Comes Back,” for just a minute, I felt the lost, heavy feeling of that second year of grief. I had to take a deep breath. I stood still, letting it flow through me.

And then it left, as I knew it would. It’s been eight years since Henry died, and those core sorrow moments, still come, but they pass. They move on without leaving me searching for a chair or a dark corner to curl up in.

Back in 2008, when Kathleen had pried open the tight protective fist I had wrapped around my own heart, joy had seeped back into my life. That joy was deep, but I still wanted more joy, more light in my life.

I wanted to be ready. And I was.

I knew, even in the depths of grief, that joy would come back. I knew it even when I couldn’t fathom how or really conjure up what that might feel like. I just kept opening. I felt my sorrow fully, and I felt the joy that way too.

I write a lot about the moments that almost break me, the times when heavy darkness sits with me. I write about that because it’s where I need to work through things and because the sorrow is still here, eight years moving into nine. But it isn’t all sorrow. Joy has come back. If it hasn’t come back for you yet, be ready. Let it come.

Making Space, Holding Light

Healing a Heart
By Sara Barry

Eight years after my son died, I still find myself bracing for December, wanting to retreat or hibernate. Wanting to jump right ahead to January and the new year. But I can’t so I deliberately make space.

I make space to honor the life and love and joy of this season. I hold space for the grief and love and sorrow this month brings. In one intense seven-day stretch mid-December, I honor the birthdays of both my daughters and the death of my son.

I worried, even before my girls were born, about this month. I wanted to throw them birthday parties and share joyful Christmases. I wanted that, and yet I felt the weight of December 17 and the days leading to it. I have learned to hold it all.

I make space. I conserve energy. I make choices to let go of things that don’t matter.

That means I do my Christmas shopping early. I’ve given up on sending holiday cards. I postpone all appointments until January.

I say no to projects that feel too big or overwhelming or rushed. I say no to adding too many activities to our calendar—even ones that sound like a lot of fun.

I say yes to coffee dates with friends who will sit with the fullness of this month with me. I say yes to stepping outside to feel the sun on my back. I’ve said yes to my neighbor making birthday breakfast cake for my daughter. I’ve said yes to my sister picking up a gift for my nieces. And sometimes I’ve said yes to doing those things myself.

I say yes to a Christmas tree (though I didn’t always). I say yes to the bright red birds that remind me of Henry’s smile.

I say yes to birthday cake and parties—and yes to the down time I need after.

I take off the day he died. I wait to see what feels okay on that day, which may be sitting in front of the fire or walking in the woods or looking at pictures or making Christmas cookies.

We go to the cemetery as a family in the cold, waning light when my girls are out of school and lay a wreath in front of his stone. My husband and I hold each other in the cold and then turn back to the car. There is nothing else to do there. 

A week later, Christmas. Dark and light, sorrow and joy, life and death. These contrasts are stronger and deeper in December. And yet each has it’s part. You hold can space for both sides. You can hold both parts together and feel it all deeply and fully. May you you find light and peace and joy in this season.

How do you make space for yourself and your loss at this busy time of year with its call to be merry? Have you found light in the darkness?

Empty Arms, Full Heart

Healing a Heart
By Sara Barry

On a cold, dark evening in January 2008, barely a month after Henry died, I dragged myself out of my warm house, out of the chair where I had rocked him, where I still sat many nights holding the yellow blanket we wrapped him in when we held him for the first time. I drove down the road and navigated a maze of hospital hallways. The meeting room seemed suddenly bright as I entered tentatively, not sure I belonged there, not sure I belonged anywhere.

I still remember the babies I “met” that night at my first Empty Arms meeting, still remember the hollow, haunted eyes of their parents. I still know who was sitting where around that table. When Henry died, I desperately needed to connect with other people who had experienced the death of not only a child, but a baby, and that’s where I started.

I remembered vaguely seeing a green paper, the words Empty Arms, when I was leaving the hospital after Henry was born. I was feeling sorry for myself, walking out empty handed to finally hold my baby at another hospital. That paper reminded me it could be worse. The memorial bench outside the NICU did the same. Still, I didn’t imagine a few months later Empty Arms would open to me.

And yet here I am.

I’m grateful that Empty Arms exists, that when I needed to see that I wasn’t alone there was a place to go.

I’m grateful for Carol, who immediately became a beacon to me of how to keep a child no longer here as part of your family, even as your family grew.

I’m grateful for the online community that opened to me after that meeting when I searched for the poem Carol had shared that night. I’m thankful  for the many amazing friends I’ve made as we shared stories and sorrows and moments of grace.

I don’t believe everything happens for a reason or that Henry died to teach me a lesson, but I’m grateful for the people who entered my life because of his.

From Breakdown to Bucket Filled

Healing a Heart
By Sara Barry

Last September, I had a breakdown in the school parking lot. It started out as a good day. The sky was blue, sun shining. Preschool drop-off had gone smoothly. I was just saying hi, meeting one of the other moms from the preschool class.

I try not to ask how many kids people have, but something about the way the she phrased her comment “my only daughter” made me wonder if perhaps she had some boys in the upper grades. So I asked.

She smiled and said she had just the one daughter who was in preschool with my daughter.

“And how about you?”

I told her about the big sister next door in kindergarten. I took a breath and said, “And I have a son, who died as a baby.”

And she took a step toward me. With the bright fall sun shining down, she stepped into my shadows.

She asked me his name. Henry. I don’t remember what else she said. I do remember that she didn’t say much. She didn’t hurry to fill the void.

I remember telling my story slowly and in rushes. I remember my face wet with tears.

And I remember how warm her hands were. I remember how firm her touch, how she squeezed just a bit with I faltered in my telling. I remember how she looked me right in the eye and kept my gaze.

My first grader came home this week talking about filling people’s buckets with kindness and smiles and nice words. That day last fall, I was worn out, emptied from the crying and the telling, but I was filled again too by the response. Today I walked into the parking lot, felt the warmth of the sun, and my bucket filled again at the memory of those warm hands, that steady gaze, that quiet listening, and especially by that first step closer.


The Start of School—Milestones Missed and Marked

Healing a Heart
By Sara Barry


“I can’t believe they’re starting 3rd grade. It goes so fast!”

When a mom I know said this a few weeks ago, I remembered back to the summer when those third graders were new. A baby boy, a baby girl, another baby boy with oxygen and Down syndrome.

I started letting go of the idea that my son would keep pace with his peers early on. I got ready to mark his own milestones, not measure them against others. But still, I assess where he’d be against these babies born within days of him. Eight-year-olds. Third graders.

A few years ago when Henry should have started kindergarten, I found myself sobbing in the dark one night in anticipation of this new first I would miss with him. Now, with the kids I thought would grow up with him on the cusp of third grade, I find myself sighing slightly when it comes ups. I hold it for a breath and move on.

***

In the fall of 2007, when Henry was a baby, I sat with him on the porch steps on a clear morning watching a friend from our neighborhood get on the bus for the first time. Later that long fall, when Henry was hospitalized, I told him again and again about the school bus and the friend who would sit with him on his first day of school. That story that he would go to kindergarten in a few short years was hope that we would get out of the hospital, go home, live a normal life.

The next September, I watched that same friend get on the bus for first grade without him in my arms. I waited each year, anticipating the day he should get on that bus. And the year he should have, I sobbed. Still, each fall, some piece of Henry is with me, tucked into a space of memory and dreams, there but not there.

I’ll wait for the bus with my girls soon, ready for a new year and the learning and changes it will bring. This year my son would be starting third grade. Another milestone missed. This year my daughters are going to first grade and preschool. More milestones met. The first day of school is coming, and I’m focused on what is, an the golden glow of hope and potential that waited with me eight years ago still hovers around as we wait for the bus.

***

Is the start of school a milestone you miss? What would be milestones have you marked recently?


Eva's Story

Eva's Story

My name is Sadie and my husband of 11 years is Arthur.  In 2010, our daughter Eva Margaret was born and died in our arms 7 weeks, 6 days later.  Since her life, we have struggled with grief, infertility, and a subsequent miscarriage. Two years ago, our rainbow baby, David, was born and has brought great healing. It's true; love heals all things.  We have walked a long journey in the last five years that has strengthened our faith in God and our commitment to one another.  It has taken me five years to finally put Eva's story in writing.  The grieving process has been long and grueling.  When asked by the Empty Arms Bereavement Support community to write a blog post for their "Meet the Family" section, I thought, "This is my chance to share her whole story."  It was just the motivation I needed; my favorite community organization and a short deadline to keep me from procrastinating!  The story of Eva's life has been building inside of me for too long, it is ready to be shared.  In honor of my Eva Margaret's 5th birthday on August 14th, and her 5th anniversary on October 8th; I present to you the story of her life.

Read More

What Helped in the Early Days

Healing a Heart
By Sara Barry

I am wondering if there was anything you read or got from folks that was at all useful/helpful when you lost Henry? No pressure to answer, of course. And thanks for letting me ask.

I was sitting alone in in the late last glow of summer sun on the sun porch at my parents content from a day at the beach when I read that email. I took a deep breath, felt the hollow-eyed, empty weight feeling of those cold, dark early months right after Henry died.

What had helped?

In those dark nights, I needed, desperately, to know I wasn’t alone. I needed to hear other stories. And I found them, late at night, when I didn’t shut down my computer because I was afraid to shut down my body knowing that whatever tiny bit of breathing room I’d created throughout the day would close up as I settled toward sleep. I dreaded going to bed, so I stayed up late, distracting myself.

A few weeks after my first Empty Arms meeting, I Googled a poem Carol had handed out and clicked on to version after version, until I found one on a blog, written by a mother whose daughter was stillborn . . . it sounded familiar because it was. I’d stumbled onto a blog I didn’t know Carol had.

From there I discovered Glow in the Woods and the world of babyloss moms. I found a tribe. I needed that tribe and their stories and their knowing nods and virtual hugs. I needed them just as I needed my amazing tribe of family and friends and neighbors who brought meals and sent notes.

Send Notes

I told my friend:

  • send notes or an emails often
  • send one around 6 or 7 weeks after the baby died
  • send one around her due date
  • send one whenever you think of your friend
  • send one around Mother's Day
  • end one next year around the time the baby died

I told her to put a note on her calendar or a reminder in your phone, because she’ll get busy, times moves fast, live goes on . . . all those clichés. I know because I mean well and I know how much a note can mean—and sometimes I forget too.

Listen

In the first year, I was blessed with understanding, supportive family and kind friends. What I remember particularly is two friends who checked in with me monthly, one setting up time to get together for tea, the other calling from a distance. Both met me where I was on the day we spoke, however I showed up; both held space for me. They didn’t rush to fill the gaps. They didn’t try to make it better. They let me tell my story, and as much as I needed to hear others’ stories, I needed to share mine again and again and again.

This is the story I told over and over when people asked, “What happened?”:

Henry was diagnosed before birth with a heart defect. We learned shortly after he was born that he had Down syndrome a full AV canal defect. He needed oxygen and was taken away to the NICU at another hospital before I had a chance to hold him. I held him two days later. He spent 9 days in the NICU and came home on oxygen. He had open heart surgery at 3 months. He recovered normally from surgery and came home off oxygen for the first time. We were excited to have him healthy!

Two weeks later he seemed to have a cold. I took him to the pediatrician, who immediately put him on oxygen and called an ambulance. As soon as we got to the hospital, Henry was put on a ventilator. Two days later he was transferred back to Children's Hospital in Boston. We were there for three months, during which time he was on and off the ventilator, underwent a lung biopsy and two cardiac catheterizations, and a million other tests. He almost died in October from an infection, but pulled through.

In December, he was finally discharged on oxygen and a daunting med schedule. We were excited to bring him home, but two days later he got sick and ended up in the hospital again. He was put on a ventilator and nitric oxide. He crashed three times; the third time they could not bring him back. I was there, holding his little foot and singing to him when he died.

That’s the story I told because it’s what people seemed to want to know, and because when trying to navigate life in those early days, falling back on fact helped me get through.

The other parts of the story I told in the early days were mixed memories and dreams, hurts and broken moments. I keep telling Henry’s story, my story too, and the story changes as I move forward in time, as my girls were born and as they grow, as Henry would have been doing different things.

It’s been more than eight years since Henry died, and sometimes something triggers that hollowness of the earliest days or the sobs of the first couple of years. Mostly, though Henry is simply my son, who isn’t here. That still boggles my mind, but it doesn’t stop me every day. Eight years later, I am still touched by notes—How are you doing this May? or A cardinal came and sat at my feeder for a long time today. Thinking of you and Henry. Eight years later, I can mention Henry in conversation, share memories of him, answer questions about how old he would be. I can move away from the facts that I shared in the early days and tell more about my baby boy and the six and a half, intense months of his life. Eight years later, I’m still connected to the tribe I found online. Eight years later, I still have friends who ask about Henry and who listen.

***

I love that my friend wants to support her friends in their loss, because every kind act counts when you are grieving.

What was most helpful to you after your baby died?

 

Ingrid Haiku

by Autumn Gordon

Autumn wrote these haiku about her firstborn daughter Ingrid Elizabeth, who died from complications of prematurity in the winter of 2013. Thank you so much, Autumn, for sharing them with us. 

Was and is Ingrid
Oh Love! My Lovely, In Love
Over the moon with you, sweet

Skin shades of red
Strong legs splayed all akimbo
Swaddled face, nose, lips: perfect

Watching from outside
You squirm or sleep in twilight
In and out you breathe

A longing arm in
To touch the universe, you
What wonder I see

Today, I hold you
Your body against my heart
That is where you dwell

Tell me about him

A beautiful post by Sara Barry, mother to Henry, who should be seven years old now. Sara is always full of sage words, and I'm so glad she decided to contribute this month. 

Tell me about him

Even now, nearly seven years after my son Henry died, I struggle through December. 

Last year over coffee in that ever dark month, my friend Beth looked at me across the table and said, “I wish I could do something, but I know I can’t. Can you tell me about him?”

I paused, because nobody asks that question. Perhaps the last time anybody asked me that question was when Carol sent a note from Empty Arms after my first meeting, giving me a space to talk about grief but also to tell about Henry himself—his “eyelashes and toes.” 

Usually people ask, “What happened?” 

I don’t blame them. It would be the question on my mind too if somebody told me their baby died. It’s a fair question but not an easy one. It makes me tell the hardest part of the story instead of the good parts.

I don’t get to talk about how we would lie on the couch together while our breaths settled into rhythm, both of us getting calmer and more peaceful, how his oxygen monitor showed me his oxygenation going up, his heart rate settling down.

I don’t get to remember how he wailed through is first bath or loved to suck his thumb. 

I don’t get to tell how he stared at the faces of people who held him or how he startled to his grandfather’s whistle. 

I don’t get to talk about how his smile flashed across his face like a cardinal across a winter landscape, lifting me up each time. 

Instead I talk about him being taken away to the NICU and about Down syndrome and heart defects. I tell about surgery and tense ambulance rides and how he almost died in October. I talk about how he got better, got home, got sick again. I remember racing to the hospital in a snowstorm as his breath deteriorated, how my husband got so sick he had to leave, how Henry coded more than once that last night. I’ll tell you how the machines started beeping and people came running, how I sang to him, and how he died on December 17. 

If you ask, “What happened?” I’ll tell you.  

I absolutely need spaces to tell that story and talk about grief. I need to tell and retell those hard parts. But I need to talk about love and hope and dreams too. 

“Can you tell me about him?” I needed the chance to talk about my son, and I didn’t even know it. I smiled and cried, and told her about my baby boy and his smile. 

Can you tell me about your baby? Your love? your dreams?