Home, I Hope

The surgeon told Brigette that her daughter’s condition is “incompatible with life.”

“Now where did he learn a phrase like that?” Valerie asks, gripping the steering wheel on the ride out to Children’s Hospital. “I mean, in medical school do they have a class called, ‘Cruel ways to tell parents their child is going to die?’ ”

Valerie usually hosts our Thursday coffee at her house, where we gather after we drop the kids off at school. We abandon our sweats for pants with zippers, wear mostly black and accessorize. This Thursday we’re taking the tea party on the road to the ICU at Children’s Hospital, where Brigette’s 13-month-old daughter, Anika, has been on life support for the past week.

“If Brigette can’t come to the coffee, then the coffee will come to Brigette,” Valerie tells us. Angela sits in the passenger seat, while Jane and I sink into the captain’s chairs in the back of the minivan. There’s a wicker basket between us loaded with real china, sterling silver spoons, brown sugar cubes, imported jams, a tea towel and a fresh brioche.
At the hospital we set the basket on a table and wait for Brigette in a private visitation lounge I’m told she refers to as the third ring of hell. It has the feel of a typical hospital waiting room. The chairs are upholstered in burgundy and blue vinyl, the walls are gray, and the tables are made of laminated oak. But unlike most hospital rooms, there are no framed Successories-style posters with clichés about challenges and perseverance. There are no pastel-colored sketches of sailboats or children at play. There are no pictures at all, no diversions into happier times, no promises, no distractions. It’s impossible not to think of the families who have sat here before us, the parental agony that can’t get scrubbed away between cleanings.

As if to challenge the smell of detergent, bleach and antiseptic hand cleanser, Brigette has placed a bright pink hyacinth on the heating unit under the windows. The hyacinth reminds me of the Colonel in Willa Cather’s “A Lost Lady,” who comments that hyacinths can withstand the most bitter conditions.

Jane and I move a small table to the middle of the room, spread out the tea towel, and carefully unpack the contents of the wicker basket, grateful for something to keep us busy. We stop when Brigette walks in. It’s morning, but she has an evening face, the kind of battered look most people get at the end of a long day. She makes her way to the four of us, absently kissing our cheeks, her hands flitting for a moment like moths on our shoulders.

“They removed Anika’s respirator so she can breathe on her own this morning,” she tells us. “I heard her cry for the first time in a week.”

“Oh that’s good, isn’t it?” I ask.

“No, not really. Not for me,” Brigette explains in her French accent that the nurses mistake as British. “Before today I thought she was in pain but I couldn’t be sure. But when they took the respirator out and I heard her cry . . .” Brigette keeps herself in check, but just barely. I get the sense that she has been to this edge so many times in the past week that she’s practiced how to stop short. “Well, I just knew then that she was in pain.”

Brigette reaches for a porcelain teacup with her shaking hand and stares out the window. I wonder if she notices the incinerators on the rooftop of the next building puffing plumes of black smoke into the cold January air, the flat grey sky, the crows sitting side by side for warmth on the electrical lines.

“For the first time, I could hear it,” she says to none of us in particular. “I could hear her pain.”

~

Anika’s intestine, Brigette tells us, was twisted like a garden hose. By the time the surgeons opened up her distended abdomen most of her intestinal tract had to be removed, leaving the remains of her digestive system in spare parts. She tells us the term for this condition is volvulus. It almost sounds exotic rolling off Brigette’s foreign tongue, like an adjective for something fantastic.

A week ago, the same euphemistic surgeon who told Brigette that Anika’s condition is incompatible with life also told her she would need to make a decision when to take her off of life support. I was at Valerie’s house when Brigette called her in a panic. “A decision?” Valerie asked incredulously. “Why do you need to make a decision? Do they need the hospital bed? You’ll make no such decision.”

~

Remarkably, Anika hung on, and now her “options for life,” as Brigette says, are limited. She explains that Anika can live on an IV until it fully compromises her liver. Unfortunately, a feeding tube is out of the question since Anika’s jejunum, or the largest part of her gut, had to be removed. I’ve heard the word jejunum bandied about so much for the past week it feels as though it has crept into my normal lexicon.

Angela asks how long her liver will hold out, but Brigette nods her head and says the liver specialist can’t really know for sure. We are learning that at Children’s there are no pat answers. Brigette even calls the doctors by their first names.

The other option, she explains, is to pursue an intestinal transplant. She’s already done the research. She knows the three top hospitals in the States, and she can rattle off survival statistics from memory.

“It’s difficult to come across such tiny intestines,” Brigette says.

“Another child would have to die,” Angela says.

We help ourselves to coffee and tea, compliment Angela on the brioche she baked at six that same morning, and settle back into an awkward silence.

“The conventional wisdom among ICU nurses is to let the children decide when they are ready to live or die,” Brigette says. “They tell me you can actually see them make this decision, even when they can’t tell you.”

Valerie, always the optimist, interrupts. “Brigette, children want to live. What kid doesn’t want to be alive? I don’t buy that for a second.”

Brigette nods her head. I don’t think she wants to agree with Valerie too wholeheartedly. Just in case.

Brigette’s husband, Peter, enters the room. He looks rugged and handsome in his sea-blue turtleneck sweater, faded Levis, and heavy boots. Fighting boots, I think.

I was supposed to meet Peter for the first time the next night. Brigette had invited us to one of her famous dinner parties. “She works for days,” Angela told me, “and the end result is unbelievable. Course after course, each one more delicious than the next. She uses ingredients I’ve never heard of, things you never even knew you could find in Milwaukee.”

Peter appraises our spread with a half smile, the other half reserved for Brigette, who runs to him. It’s clear that the rest of us stand on a small isthmus in their grief.

We suffer through the usual introductions and settle back into our places. Brigette can’t sit still for long with Peter in the room. I think of her as proud, even stoic. But she crawls across the room to Peter on her knees and buries her face in his lap. He puts his arms around her, they rise, and kiss. It’s sensual, it’s private, and it’s the most raw expression of agony and love I’ve ever witnessed.

“Hey, get a room!” Valerie jokes. Brigette wipes her face with the back of her hand and returns to the couch. She smiles, probably for the first time that day.

Peter was in Hawaii on a business trip when Anika got sick in the middle of the night. Brigette figured Anika had the flu, but when she turned on the light to clean her up she noticed that her complexion was gray. The next day, before Peter got on his flight, the surgeon called him on his cell phone and apprised him of Anika’s situation. “For ten hours I thought I was coming home to meet with a funeral director,” he said. “Can you imagine?”

We nod our heads. No, we can’t imagine. We don’t want to imagine.

“Show them the video,” Brigette insists, explaining that Peter put together a short film of Anika that he edited out of their home movies. Peter reaches for his slim laptop computer. I don’t have a lot of memories of Anika. I remember her playing on the floor by Brigette’s feet during our coffees. She was always cherubic and placid, sitting in her thick cotton tights, her skirt (Brigette’s children aren’t permitted to wear jeans) spread around her like a mushroom cap. I don’t want to see the video; I don’t want more vicarious memories that will make me feel their loss more acutely than I already do. Yet I can’t turn away from the image of Anika on the day she was born, her first outing in her stroller, rolling over, laughing at her brother in the kitchen from her wooden highchair, taking a proud, awkward step, playing at her grandparent’s house in France, and finally celebrating her first, perhaps only, birthday. The camera zooms in on a fruit tart on the kitchen counter.

“Here it was her birthday and we have a lovely shot of the tart I baked. The tart! The goddamn strawberry tart,” Brigette raves.

“Oh, don’t feel guilty about that,” Peter tells her. “She’s the third child. We’re lucky we’ve documented her life at all.”

“Isn’t it ironic?” Brigette asks. “Food is such a huge part of our lives, good food, and no matter what happens she’ll probably never eat again. What punishment!”

We offer the usual platitudes, the “who knows,” but I get the sense that Brigette wants someone to acknowledge that this sucks. This just plain sucks.

As we begin to put the dirty cups and platters back into the wicker basket Brigette and Peter ask us if we would like to see Anika. Her presence has become larger than life, almost Oz-like, and I’m hesitant to take her up on the offer. Not because I don’t want to see Anika, I do. We all do. But I have young children, and this encounter skirts the borders of my worst nightmares.

After we receive badges and sign in at the main desk, then stop to wash our hands, Brigette escorts us through the fluorescent hallway. I look into the glass-walled cubicles reserved for the sickest of sick children, but they are all empty today. “Funny, this ward was full a few days ago,” Brigette says. “That must be good, right? They’ve all gone.” She stares at a neat pile of crisp white linens stacked on one of the beds. “Home, I hope.”

Brigette is wearing expensive-looking black pumps with thick, high heels. I’ve never seen her in flats. She clicks across the linoleum towards her daughter, forgetting about us like a shorn cloak as she approaches Anika’s side.

The room looks like the control booth for a live television show. Monitors blink and hum, tubes and cables hang from the sides of the bed, and nurses flow in and out of the room like extras. The walls are covered with photographs of Anika and her siblings, most in black and white. I had assumed the photos where there for Anika, but I was missing some of the politics behind this tenuous doctor-patient relationship. “They want the doctors to remember that Anika matters. That she has a life. That she is a life.” Valerie says.

It’s very warm in the ICU. Anika isn’t covered with blankets, just a bright yellow hospital-issued gown adorned with Sesame Street characters. Her cheeks are red. She looks like a child taking a nap on a hot summer day with her bare legs and a sock-less foot, her blond hairline slightly damp. I guess I expected her to look less human, less childlike, or maybe just less alive.

She catches each jagged breath in her throat, tightens her closed eyes, and rocks her head as she tries to breathe. “Her lungs are filled with fluid after being on the respirator for a week. Today will be tough,” Brigette tells us.

Anika’s nostrils are cut with long red fissures from the tubes. “Why is this tube green?” Angela asks.

“Oh, that’s a gastric tube.” A nurse interjects. “That’s her bile.” It dawns on us that her entire digestive system has been rerouted through her nose.

Brigette lifts Anika’s hand and cradles it in her own. “The nurses here are unbelievable. They always make sure that Anika’s hand is on a stuffed animal every time they check on her.” I can see the outline of Anika’s small fingers on a pink beanie baby rabbit. My daughter has the same rabbit at home.

I stroke Anika’s soft hair and wonder if she’ll be alive tomorrow.

When Valerie drops me off she gives me a hug and says, “Anika is going to be okay,” I wonder who she’s trying to convince — herself or me. I hold onto her and wonder how an almost motionless child could lose a sock in her hospital bed. I can still see each of her perfectly formed toes.