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Category: Uncategorized

The Poetry of Trauma

Twice in the past two months I’ve heard two writers, one a memoirist and the other a medical doctor say something like, “Only poets can write about trauma.” Seventeen years ago, my newborn baby had his first open-heart surgery. His chest could not be closed because his tiny heart was too swollen to fit back inside his rib cage. So, for days he survived in a medical coma, and we could not touch him. My body was still recovering, barely, from a violent emergency c-section, and not only could I… Read more The Poetry of Trauma

The Last Childhood Birthday

Liam turned seventeen today (well yesterday now, it’s after midnight). For those of you who know his story, I’ll let you absorb how huge 17 is. His next birthday he will legally be an adult. WOW! Seventeen years ago right now I was thrashing, crashing, getting multiple injections of epinephrine. I was delirious from blood loss and physical trauma. I didn’t know most c-sections take a little longer than 5 minutes. Mine took less than that – I was in an entirely different room trying to push my child out,… Read more The Last Childhood Birthday

Chronic Corona

For the first six years of my first child’s life we lived a rarified sort of life. Frequent isolation and social distancing was a fixture of his survival, and we accepted it as part of keeping him alive in a world full of hostile germs. Then he stopped having heart surgeries, until he was eleven, and then it was only the one, and we got . . . not sloppy, or careless, but carefree to an extent. He wasn’t on oxygen, he wasn’t between major surgeries or on major blood… Read more Chronic Corona

The Journey to Well

The inevitable events that led me to write Heart Warriors began on December 30, 2002, the day in my pregnancy when Liam was diagnosed. The earliest drafts were written in 2008 and promptly discarded. I’d never written a book before and didn’t know what I was doing. I joined some writing groups, read a ton of books, and finally started and finished the book very quickly in 2010, the same year I finished graduate school, fundraised for and attended our second Hearts United event, launched the inaugural Congenital Heart Walk,… Read more The Journey to Well

Post Operative Words

TRIGGER WARNING – this isn’t pleasant. I had my surgery. It went well. My arm is healing. I don’t have cancer. I had my surgery. My shoulder was sore from the brace I wore to my post op appointment to have the surgical tube pulled. I decided to have a massage. The man who gave me my “massage” sexually assaulted me. I had my surgery. I spent time in the back of a police car. I identified my assailant. I spent time in the 19th precinct. I was alone the… Read more Post Operative Words

Letting Go – or Goodbye to All That

A week from now I’ll be in NYC and the following morning I will be unconscious. The best doctor I could find in the USA is going to cut my arm open into quarters, cut through muscles, and ever so gently but firmly cut away this large tumor that right now makes the palm of my hand hurt for no reason. Actually, the reason is that the tumor is attached to and compressing my nerve sheath. So I get all kinds of weird pains, like sometimes it feels like a… Read more Letting Go – or Goodbye to All That

Pre-Op Preface

Hello friends. I am happy to report after spending the better part of the day at Memorial Sloan Kettering that my tumor while not definitively benign is not a metastatic form of sarcoma. It may be a non-metastatic form of sarcoma or a precancerous mass, or a benign but unusual mass. It really doesn’t matter which of those three things it is because all three require the same surgical “cure,” and all three can cause the nerve damage and deformity that my current tumor is causing. So, it’s gotta go… Read more Pre-Op Preface