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?

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?


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?