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.

My son is dead

As I hiked in the hills near my house with the dog this morning, we came across two other dogs and their owners. One of the dogs was named Riley. I almost managed the courage to say, “I had a son named Riley and he died four weeks ago.” But the words failed to emerge from my mouth and I wondered if sharing that news with a complete stranger was worth it. I ultimately did not share. What would I get out of it?

Practice, I suppose.

Would you like to hear about my dead son?

The family who lives next door to us doesn’t know that my son has died. We don’t really know them. We wave when we see each other. We’ve invited them to various backyard parties, my kids wanted their grown-up son to babysit them, they had an old yellow lab who died recently. But we don’t know them. One of the worst things that can happen to a family has actually happened to the family who lives 15 feet west of them and they have no idea. None. It's not their fault. It's just reality. Our other neighbors that share our side fence don’t know either. Should I put notes in their mailboxes?

I’ve wondering if there some sort of grief flag I’m supposed to hang from a tree in the front yard. I’ve wondered if I’m supposed to put a sign in the front windows of the house. Or on my car. I’ve thought about creating some kind of grief band to wear around my arm. It would say something like, “My son just died.” Our society needs some kind of indicator to give the grieving a little way to acknowledge what has happened. A quiet way to acknowledge that walking through the Trader Joe’s or Walgreens is surreal when your child has died. So that others may tread lightly. So that perhaps we’ll see others with grief bands and know that we aren’t the only people to experience this silent and isolating misery. Maybe then we'll feel slightly less isolated, even if we don't feel any less miserable.

I imagine at some point in the future, the neighbors will ask at one of our kids’ lemonade stands: “Where’s your brother? The one with the glasses?” At that point, the kids will say: “Oh, Riley? He died…” A look of confusion will surely consume their faces followed by an awkward series of questions and the inevitable, “I can’t believe we didn’t know.”

It's strange that I cannot manage to speak this news to people--like the man walking his four-legged, rhodesian ridgeback Riley--given I want nothing more than the world to keep talking about him, thinking about him, and seeing his light radiate through everyone who knew and loved him. Shine it out. Yet, I am silent. I'm mainly hiding away, avoiding the conversations, the looks, the inevitable sobbing that comes with talking about my amazing son. Did you know that he could draw the 50 United States from memory? Including state capitals? How I wish I had taken a video of him at the chalkboard as he demonstrated this skill.

I know that me staying hidden away is different from not knowing how to tell the neighbors or avoiding eye contact at the store, but both are about acknowledging what has happened. Sharing the news of his death with the world has been something I haven’t figured out yet. I’m sure if I looked, I’d find some kind of etiquette pamphlet about this kind of thing. This unbelievable, horrible thing.

Failure to communicate

There is a stack of unopened envelopes in the cubby downstairs. Red and blue and green and cream-colored paper displays my name and address neatly written in cursive. So many letters, so many names of people I’ve known at different times in my life. They have all gathered together to prop me up with their words. I don’t know what to do with them aside from put them in the cubby. That impressive collection of feelings is waiting to be felt as soon as I am strong enough to feel them.

Unread

Right now, opening them seems impossible. If I open them—when I open them—that will be the end somehow. The flood of support will be over. If I leave that stack of envelopes alone, there are still things to be said. And as long as I have that stack of letters, people are still thinking about us because their sentiments are unread, unsaid, waiting to hold me when I need to feel not quite so alone.

After Riley died, almost inconceivably, the World Series teams pitched and scored against each other. Children and grown ups slid into costumes and ate Halloween candy. Babysitters were hired, Saturday night cocktails were imbibed, and dinners in dimly lit restaurants were eaten. Now Thanksgiving is looming while the reds and greens of Christmas twinkle from shop windows. People are buying milk and condoms just like any other day because there is still cereal to eat and sex to have. The world keeps going. Yet, somehow I feel like I’ve stepped every so slightly from the earth’s surface and the wind is slapping me raw as the world keeps spinning without me.

All of our family and friends packed their neatly folded green sweaters into their luggage and left town a week ago. Riley’s celebration was the end for most people. But for me, it was the beginning of quiet. Of lonely. Of alone. Family may have returned to their own houses, their own towns, their own families, their own activities and distractions. But this is my house, my town, my family. Any activities or distractions I have are distorted because someone is missing. Our six-chaired table typically evenly balanced with four kids and two grownups is now lopsided.

Honestly, I don’t know what I’m doing aside from getting through the day so that I can go to bed at night and getting through the night just to begin the next day. I don’t know what I’m doing besides killing time. I have talked to no adults—aside from my husband—since family left. And as I pounded my feet along the sandy trail near our house this afternoon, I realized I’m terrified of talking to anyone. I’m afraid of seeing people I know. I’m afraid that someone might recognize me. Without the dog to walk, I might never leave the safety of my warm bed.

In all of this fear of communicating, I keep thinking of an email that a friend sent me after I told her that Riley would be having surgery. She wrote: “This news…reminds me of the special challenges you have been awarded (not quite the right words, I know) in this life. And yet... you do such an amazing job of being a person who glows and sends loving energy out beyond your skin to the people around you, which is such an incredible gift, and all the more special and awesome, given the fear and underlying uncertainty you live with.”

I thanked her for seeing those things in me and reread her words countless times in the weeks leading up to surgery. I hoped that those words could reinforce my unsteady frame, shield me from crumbing, disintegrating under the weight of what we faced, the unknown. It was almost a mantra: I want to be that person, I want to be that person, I want to be that person. The fact that I ever was that person seems incomprehensible. 

I cannot glow. I cannot send positive (or even neutral) energy to anyone because I am unable to communicate. I have not responded to text messages, phone messages; I have not read any meaningful email in a week. I cannot open that stack of letters. I no longer know how to be in the world.  

Holding you

I held you in my lap on Monday. I was in the passenger seat and I clenched you, the brown boxes of you, as we wound along the roads from there to here. How I’ve wanted to hold you this past month, all those days in the hospital and all the days since. Even after you died, when I was allowed to climb onto the mattress next to you, to stroke your hair and whisper those last times into your ear, I wanted to pull you in, squeeze you like I always have. Not holding you, not touching your skin feels impossible. Yet here we are.

An everyday hug

And now I’ve held this new version of you, these two weighted boxes with your name on them. I wasn’t sure what I was expecting when we arrived to claim your ashes. But you are not you at all. You are like a parcel waiting to be shipped. And when your dad takes his parcel version of you to his house, well, I cannot understand how can you be in two different places at the same time. Someone measured and made equal the ashes you left behind. It’s not like having some of your clothes here and some of them there.

All those days, and even now, I yearn to wrap my arms around your body as I have done all the days that I can remember being your mother. Even before you were born, I would fold my arms around your curled up body as it rolled inside of me. Why didn’t I hug you longer each time I kissed you goodnight? Why didn’t I hug you when you came in from school every day? How did I let you slip into your dad’s house without more fanfare? Did I really believe there would always be more? That the opportunities stretched beyond any given goodbye?

I know the answer to those questions. We simply lived our lives. We loved each other and lived together and you went to and from school, the park, a friend’s house. Our days were normal. Love floated through our worlds like the dancing vapor rising from a latte. It was faint, yet warm and visible. Each hug was never to be the last. Even that morning when I last heard your voice, when I said I love you and you said I love you too as doctors escorted you beyond the double doors—the last time I really saw you—it was a placeholder until the next time. Those words were casual confidence that there would be many next times.

Only now do I realize that more than my wants to hold you, to feel the way your elbows bend and the points of your shoulder blades, is my desire to feel you hugging me back, your small hands squeezing mine. To feel the weight of your limbs around my body or sitting on my lap just like all the other days. To press my nose into your hair and breathe you in, the warm wisps of love.