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?

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? 

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?

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?

Is the Time Before Your Baby Died a Bittersweet Memory?

Healing a Heart
By Sara Barry


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

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

 

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

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

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

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

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

***

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

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

 

What Gets You Through

Healing a Heart
By Sara Barry

As I write this, I’m coming down off a sugar high from our first sugar shack visit of the season. Pancakes dotted with blueberries; crisp, salty bacon; hot coffee; and of course plenty of sweet, fresh syrup. Waiting for our pancakes, I stood with my girls as they took turns climbing the steps to look down into the evaporator where sap in different stages of transformation bubbled wildly. I breathed deeply, taking in the moist, maple-laden air. This tradition gets me through the long, tail end of winter and the messy start to spring.

Nine years ago, Brian and I muddled through our early grief by falling back often on “normal” or what we had done in our life before. Come the last weekend in February and every weekend in March, “normal” meant these pancake pilgrimages. But one weekend that year, we couldn’t quite face going to our usual spot alone when we thought we’d be there with a baby, so we modified tradition. We went to a sugar shack, but one new to us.

I remember my first visit to this sugar shack vividly with the blur and sharp particular details of early grief. I remember the long tables and loud hum of the busy, high ceilinged room, the steam swirling up and out from the evaporator on the upper level of the dining area. I remember Carol, putting a hand on my arm as we ordered at the counter. I had met her about a month before at my first Empty Arms meeting, and she scanned the room for me: no babies to trigger my fragile self.

Mostly I remember the sunlight that streamed through a wall of windows on the front of the building. I felt the brightness around me, but not in me.

Today, I sat lazy and satiated in the sun that poured through those windows. Daffodils raised their yellow trumpets on the table. The outside thermometer read in the 30s, but the sun inside and out felt warmer.

Nine years ago, I held onto every tiny speck of hope that spring would come, that grief would mellow. Today, spring seems imminent and grief is one thread woven into my life, one where my smile reaches my eyes as I look up at the bright sky, one where my lungs expand with the moist, syrupy steam and my heart expands with love and joy. 


In the early days of grief, I sought out little pockets of comfort and hope. In addition to our sugar shack visits, I kept flowers on my table all through the winter. I fell into the deliberate rhythms of my kitchen, cooking comfort foods, day after day. I stood in the cold sunshine and noticed the light even when it offered no warmth.

What got you through you the early days?

 

 

 

 

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.


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?

 

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?