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?