Tuesday, May 20, 2014

PWS Awareness Day 20: Grief, still?

Abe interviewed me yesterday for a class project.  He needed to talk to someone who had survived a challenging time.  He'd been trying to track down a local Holocaust survivor who speaks at area schools, but he'd been unable to reach her.

Raising a child with a disability.  Surviving the Holocaust.  Not in the same category.

"I don't think I'm what your teacher is looking for," I said, my eyebrows scrunched.

"It's fine. It's fine," he insisted.  I felt like he was taking the easy route, but I let him do it anyway.

He followed me around the kitchen with his voice recorder while I brushed the dirt off the mushrooms. While I washed and sliced the kale.  While I shucked the corn, then simmered the soup.  Oscar was sleeping and Ruby was playing wiffle ball at the park.  We had privacy.

"Tell me about Oscar's birth," he asked, his voice soft.

"What were those first few weeks were like?"

"How did you cope?"

I talk about Oscar, PWS, and our family all the time.  I tell our story whenever anyone asks, and, these days, I can do it in that half-smiling, shoulder-shrugging, "life is crazy but we're totally ok" kind of way.  Sometimes, I even throw in a joke. 

And I've written about the scary first moments.  A lot.  This weekend, at the writer's workshop, I shared excerpts of the beginning of my memoir.  Some of the writers in my group told me that they cried when they read it. But I didn't cry when I wrote it, and I started to wonder if I am too distanced now to write it. 

But yesterday, when Abe started asking questions, I felt my body tense up.  I bit my lip and bobbed my head from side to side till I could get the words out.  I swallowed.  But it was useless. I couldn't hold back the tears.

"I don't know why I'm crying," I said to Abe. "You know most of this stuff. We've talked about it."

He smiled and waited. He wasn't uncomfortable.

I thought I'd gotten through all the tears. Years of therapy and support groups and crying to friends and family -- I did a lot of processing those first few years.

Maybe it was because now it was Abe asking the questions.  Abe who was only two when Oscar was born, and, oblivious to our grief, made us all dance in the living room every evening when we returned from the hospital to Neil Diamond's It's A Beautiful Noise, because the song mentioned a train.

Or maybe it was the recognition that my confident, skilled and compassionate older son is undeniably, and beautifully, shaped by an experience I fiercely wished I could have protected him from.

Either way, apparently there is still a little bit of grief buried deep inside.


  1. Aww Mary, I have tears reading this. Loved your son's piece yesterday and the fact that he is interviewing you today. We all have angels everywhere and he must be one of yours x

  2. This made me cry, Mary. Maybe grief is like joy--an experience rather than an emotion and to remember the experience is to relive the grief (or joy).