Grief has no name for me

Someone who loves is a lover. Someone who fails is a failure. Someone who disappoints is a disappointment. Someone who drinks is a drinker. Someone who learns is a student. Someone who teaches is a teacher. But what is someone who experiences a loss?

There certainly are a lot of adjectives to describe that person—sad, despondent, bereft, grief-stricken, let down, wounded, hurt, scared, worried—but no nouns come to mind. There are nouns that describe certain kinds of loss. A woman who loses her husband is a widow. Someone who loses a limb is an amputee. But I cannot find that definitive word that encompasses the common life experience of loss. Or more specifically, my loss.

Proud mama, dead son

I wrote this piece in 2012 when my son was nine years old. I felt lost in my journey with a child with serious medical problems who would eventually face more heart surgery, but it is more relevant than ever now that he has died. I was reminded of this piece the other day after another heart mom shared this: “A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. There is no word for a parent who loses a child. That’s how awful the loss is.” ― Jay Neugeboren, An Orphan's Tale

The quest for this particular word started as an exercise from a book I was reading. The objective was to describe myself using nouns--no adjectives allowed! I came up with daughter, friend, mother, divorcée (silly word, but it is the noun to describe a divorced person), dancer, and writer. But I also wanted a word that encompassed emotional trauma. Without a noun to represent that part of my life, my list didn't describe me completely. My loss is just as much a part of me as the way I leap and spin during dance class. It is a part of my essence, the way that writing is part of the way I communicate. A list describing me without including a word around loss, is like trying to describe a sunrise without the word light.

When I had pushed my son into the world nine years earlier, I lost the motherhood I’d hoped for. Lost isn’t a noun, but it encompassed that feeling of not remembering how to breathe or sleep or eat. It encompassed the frustration around having to digest medical jargon. It encompassed the nauseating ache when wandering the hospital looking for the Neonatal Intensive Care Unit. It encompassed the shock and disbelief after doctors said my baby only had half a heart and needed several operations. It encompassed that feeling of knowing that every dream I ever had around parenthood was just that—a dream.

And now that my son is dead, I feel even more disappointed that our language fails not just me who is feeling so raw from his death, but all parents who suffer the death of a child. What are we? Why is there no name for us?

In 2012 when I wrote this, I considered that the noun I was searching for was human, even though human did not technically complete the exercise. Being human means many things, one of which is someone who experiences loss. At the time, considering human reminded me that my loss wasn't unique or any more extraordinary than my friend’s loss when her baby died. It wasn't any more unique than my other friend’s losses with each of her failed fertility treatments. My loss wasn't any more painful or stressful than my friends' who have children along the autism spectrum. Experiencing loss is part of what unites us as humans. It’s also part of what makes us individuals and steers us as we identify with all the other nouns on our lists.

Sure, my loss had evolved and changed over the years as my son grew and endured each hospitalization. There were even times when it no longer swallowed me with every inhale or haunted me every time I closed my eyes. In the seven years between his 5th and 6th heart operations, people would have described me as happy, joyful, and full of life despite the challenges my son endured (and that I endured along with him). I laughed often and embraced love and life's opportunities.

But that was before my son died.

Now that my son has died, I no longer know who I am and human is definitely inaccurate and inadequate. Yes, every human experiences loss. But this specific loss is so horrid that being lumped in with every breathing person on the planet is not a comfort. It makes my loss feel even more invisible, isolating, hidden, solitary, indescribable, and unnameable.