One of the ways to process experience is through art. During my second pregnancy I discovered that my unborn Violet had a congenital heart defect which required open heart surgery at 6 months. It was a deeply traumatic and emotional time for me. Recently, I had the opportunity to take a course with brilliant novelist Miriam Toews. She put words to why I felt compelled to write about the traumatic experience; I was writing about Violet to make sense of my world; I was writing to survive. Writing as survival—I highly recommend it.
Some people dive right into grief. Some people keep it intellectual — contained in the head, firm, compartmentalized. My grief is leaky.
Stage 1: Denial and Isolation
I find out about my daughter’s heart condition at my twenty-week ultrasound. The technician starts to look. She’s on the hunt. For something. She brings in another woman and they study the monitor and mumble things to one another. My heart starts to pound. My back is hurting from being on flat on the hospital bed for so long.
“Are you just trying to get a clear picture?” I probe, hoping. The technician says something incomprehensible and continues to search. Then she leaves the room. An hour later she comes back with a CD. She thrusts it into my hand.
“Here’s the picture you wanted.”
“Is everything okay?”
“We are not allowed to say anything. We’ll send a copy of the report to your midwife.” Then she leaves. She knows we are in for hell and she wants none of it. Maybe her grief is as leaky as mine.
I’m shaky now. I call my midwife and leave a message. I want to know what’s going on. My baby. My baby. She calls me back and reads me the report … could not get a three-vessel view … cannot rule out transposition of the great arteries …
I call my dad. He tries to be upbeat, but his voice is strange. He’s scared.
“We don’t know what that means, hija. It will be okay.”
I walk home from the hospital clutching the CD of my hija. I feel like dying might be better than this—what is about to unfold. The words chorus in my head … could not get a three-vessel view … cannot rule out transposition of the great arteries.
I look up “Transposition of the Great Arteries,” searching for the website that says “No Big Deal.” Instead I find an angry mother talking about the horrors of heart surgery. Her daughter had Transposition of the Great Arteries and it was so much worse than she ever imagined. Her video is not for the faint of heart, she says. Be prepared.
I don’t watch the video, but I imagine.
The mother’s grief is like poison.
Waiting for our next appointment, an echocardiograph at The Hospital for Sick Children, I am hopeful again. I have been praying. I have not stopped praying for a miracle. The God that I grew up learning about who healed lepers and sick boys will heal my daughter in the womb. I know it. And if that doesn’t work maybe this echo will prove that the mumbly bumbling technician was just bad at her job or she had bad equipment. So many things could be set right.
This technician is all business. She is good at her job and knows it. She can get a view of anything.
“It’s not the equipment. You just have to know what you’re looking for… here. Here is the three-vessel view!”
But then she goes silent. She leaves and comes back with the cardiologist.
“Is everything okay?” I ask.
“No, I’m not going to lie. Your baby has a very serious heart problem.”
My grief is an expanding body of water.
Stage 2: Anger
It takes a long time for “four to eight” hours to pass. That’s how long it takes to do open heart surgery on a baby. A million grey cars.
I’m staring at the grey cars on Edward Street, looking out the cafeteria window of The Hospital for Sick Children. Every car is grey. The only car colour in the world is grey. Different shades of grey. Grey. Oh, how we love grey. Steady even keel life. Grey. I allow myself to get lost in thinking about our societal love of the ubiquitous grey car. It’s a good distraction. The scratching of a chair on the cement floor jolts me back to the reality of why I am sitting there with a cold coffee, my stomach hurting. I look at my phone to see if any time has passed. Two minutes.
Car watching is better than people watching. Parents of sick children… are dangerous. Ready to crack. Their eyes are wild. And the doctors and nurses and researchers that surround them: acting normal, laughing even. How could they? From here on in, every time I talk to a doctor or nurse I start to imagine his or her normal life. I’m obsessed with normal. What do their apartments look like? Their big houses? Their partners? Did they hug their healthy children goodbye this morning? What did it look like before they came to sit here with weeping mothers and fathers?
It’s us against them. Them is a hierarchy: male doctors in their 50s looming over perky female researchers in their 40s standing guard over less perky female administrators in their 30s who tower over cleaning staff of all ages not white, male or female—possibly perky. Who wants to push around a trolley with a mop? My grandfather was a janitor for thirty years. I never asked him if he liked it. I should have asked him. He probably would have laughed at the question—work was work. You did work so your family could eat. That’s another thing I think about—all the people pushing trolleys around Sick Kids. My baby’s bloody mess that needs to be cleaned up. Her sickness making work for others.
Tetralogy of Fallot is what they finally diagnose, named after the French physician Etienne-Louis Arther Fallot in 1888. 400 in one million live births. Four things going wrong in concert.
Pulmonary Infundibular Stenosis: A narrowing of the right ventricular outflow tract; Overriding aorta: An aortic valve with biventricular connection, that is, it is situated above the ventricular septal defect and connected to both the right and the left ventricle; Ventricular septal defect (VSD): A hole between the two bottom chambers (ventricles) of the heart; Right ventricular hypertrophy: The right ventricle is more muscular than normal, causing a characteristic boot-shaped (coeur-en-sabot) appearance as seen by chest X-ray.
I remember how the cardiologist invites invites us into the consultation room. The family before us didn’t go into a room. I clock everyone’s movements. Tears or smiles? Grief? I hear them laugh. I am jealous. Natalie, the Nurse Coordinator, gestures for us to sit. She is French Canadian. I clock that too. She’s lovely with pretty long brown hair. She draws the curtains to ‘let in more light.’ I don’t want to be in this room. It’s surreal in a way. We are the family in the counselling room at the Hospital For Sick Children. This is us. This is our lot. I will choke on my grief.
Dr. Jaeggi starts to speak. Natalie passes him a diagram of the heart and he points at things, showing us where things went wrong in my daughter’s development. He writes down some numbers, the chance of there being an additional genetic defect.
“The heart I can fix,” he says.
We cry as he talks. Weep. The grief will swallow me. I am swallowed. But I am not. I know I will walk out the door and down the two flights of stairs to the lobby and down two more flights of stairs to our car, where we will drive away back to our life where everything is still the same: the cat, the touchbrown couch, the fridge, the dining room table, our other daughter. All solid.
Dr. Jaeggi recommends an amniocentesis. He says he can see a small leak in one of the valves, a soft marker of Down’s syndrome. 22Q is another possibility, sometimes called DiGeorge syndrome—often accompanying Tetralogy of Fallot. In 22Q, there is a deletion of chromosome 22, setting off a chain of mistakes. My husband is currently working in a laboratory studying that very disease. We have spent many conversations musing about the ‘interesting’ ways 22Q manifests: substantial forehead, flatter face, schizophrenia. My husband’s grief threatens, but he will contain it.
I, on the other hand, weep in my mother’s living room for days as we wait for the results from the amniocentesis. Wretched, weeping, heaving.
“Why my baby? Why my baby?”
My mom cries too. She can’t console me. She can’t tell me why.
When the tests come back clear, we rejoice and say we can handle the thing that is left—the thing that has to be done: open heart surgery.
Stage 3: Bargaining
And here we are in hour four. Handling it. Barely. My mind cycles through all the things that could be going wrong. If it was going well they would be done, I’m sure of it. What if our surgeon was hung over? What if he had a fight with his wife, a bad one, making his fingers shaky. Why not? Why could that not be? So much room for error—all those people in there with their masks and instruments doing things to her. Making horrible mistakes.
At the end of hour five, I am only nerves. Nerves and flesh, but no soul. Grief eclipses soul. I have spent the last 30 minutes silently making deals with God. Only this. Nothing else. Only this. Please God. Only this. I will be better. I’ll never ask for anything again. Only this. only Only this. only Only this. I do my best not to look around the waiting room, seeing my own fear reflected back in the scared eyes of other parents. Every once in a while one cocky surgeon comes prancing in in his black Crocks. He wipes his hands. Another fucking success. He is a god for all these wretched parents. I watch an excited grandmother rejoice with her daughter. Something in her grandson’s brain. All fixed. I am watching a biblical miracle unfold before my eyes. Her son is made well. I wait for my miracle.
Violet Alfred STATUS = IN THE OR
In hour six I digress and my mind is a mess.
Stage 4: Depression
I am like a robot walking up and down the stairs. I can’t sit still for long. Elevators are bad for my grief—too fast. Plodding stairs are better. I like to feel my legs move. I like to watch my feet take the stairs. It’s an act I can control—walking. I end up back in the cafeteria watching more cars. This time though I witness a mother completely lose it on her child. Her child is in a wheelchair which makes the incident extra uncomfortable. The child is whining. The mother is at the end of her rope. JUST SIT DOWN. JUST EAT. Her inner dialogue hanging there. CAN’T LIFE BE BETTER THAN THIS. IS THIS WHAT I HAVE TO ENDURE?
What if we were all just here for haircuts? We thought we were coming to have our children ripped open and fitted for wheelchairs, but instead we’re getting hair cuts! Wheeeeeee.
My grief has taken hold of my mind.
I judge the mother. Can’t you keep it together? Your child is in a wheelchair for fuck sake. I judge her, but I know that a sick child makes you act out. You are so scared and angry at the world. You see every healthy child and you want to scream. You want to throw yourself in front of trucks, take too many pills, make it all stop…—the fear, the rage. You misdirect your rage. At the sick child? Yeah. Yes, I can understand that.
I want to touch the mother’s hand and say it’s going to be okay. But I don’t know if that’s true. Plus, if someone touched my hand in that place, I would explode. A crack in my armour. Metal flying everywhere. Arms and legs and splatterings of grief-infected brain matter.
I look out the window and wish her peace.
Whoosh. A red car passes. That was is different. Though never a yellow car. Mostly SUVs, CRVs, lots of compact sedans. I roll the word ‘sedan’ around in my mouth. What is a sedan? I want to think about sedans for a while. So average, banal—a sedan. I want normal things. We have spent the last six months anxiously looking for signs of blue spells, trying to keep sickness at bay, feeding our baby a daily dose of iron powder—anything but normal. I yearn for grey.
I heard that heart surgeons make 800K, which is good because I don’t want my surgeon driving a sedan. I want him in an Audi listening to soothing Mozart getting in the precision zone, visualizing every cut. You can’t do that in a sedan. Too many bumps. Plus, if you get paid that much, you never fail. You never make a mistake. You never leave a child cold on the table. You always bring them back warm to their mothers. Right?
Stage 5: Acceptance
In the months leading up to Violet’s surgery I become a charismatic prayer warrior. On Tuesday nights, I show up at Walmer Road Church to pray with zealots. I fill out a form stating my prayer request, then I sit in the waiting room and stare blankly waiting for my turn. We pray for healing, a total miracle. Someone says he feels light around me. Another woman says “it will be a journey.” Another spits on Sick Kids—we don’t need you, hospital. Our God is bigger than doctors.
Can we control our miracles? Order them up? Our world is not fair. I let the word ‘fair’ float away from my vocabulary. Fair is dead to me. The mother in the refugee camp knows that better than me. How can we live in a world where the lots are so uneven? I ask my dad over and over about ‘fair.’ I asked him that when we were are on our ninth day in the cardiac unit—‘recovering.’ Still there because they nicked a duct in surgery. Which means the chest tubes are still in—tubes that poke around and touch Violet’s baby nerves. She is on high doses of morphine. She doesn’t laugh. They tell me I might have to stop breastfeeding, the one thing that brings her comfort. When they come around on rounds I weep in front of the team of fifteen. My father says now is not the time for theological questions. Now is the time for survival.
Dr. Hickey finds me wandering the Cardiac unit. I’m padding around in socks with Violet, trying to keep her comfortable with the chest tubes bobbing around. (We stuff the tubes into her sleeper and then lift her from the bum: survival.) I feel vulnerable in my socks when I run into Dr. Hickey. I wish I was wearing boots with a heel. Though he seems a bit vulnerable too.
“Looks like you guys have moved in.”
We laugh. It’s intimate. He has touched the heart that is part me.
Suddenly I want to hug him. I want to hug him for his labour.
“So could you say you do a good job?” I’m brazen.
“Well, I don’t like to say that. I don’t want to jinx my work. My American colleagues would say yes! We Brits are more self-deprecating!”
We laugh some more. Those damn Americans!
“But… I would bet on it.”
My heart leaps and I choke back a cry.
He would bet on it. He would fucking bet on it.
We wish each other a good night. He says he practically lives at the hospital too. I say I have to do a few more rounds of the Cardiac unit in my socks. Maybe get a Starbucks.
He gives me a thumbs up.
Later I tell Simon that I saw Dr. Hickey in the hallway. Guess what he said? He would bet on it—Violet’s heart.
Yes. Betting on it. My girl, my heart.