Mothering For the Chronically Ill
It’s the Christmas before Kate’s second birthday. We stand in the cold night air, fingers curled around the metal bars of a reindeer paddock. Inside, two antlered reindeer amble, occasionally stopping to snack on the hay bale provided for them.
Kate is enraptured. She’s still fuzzy on the whole Santa thing, but animals have always been a fervent love. “Aydeer!” she shouts.
After a few minutes of watching, one of the reindeer lies down. Kate looks confused.
“It just needs a rest,” I tell her.
The confusion lingers for a moment before clearing into understanding. “West,” Kate says. “Mama aydeer!”
The barely-distinguishable toddler words knife into my heart like warm butter. Rest. Mama reindeer.
She hasn’t even been on this earth long enough for two trips around the sun, and already she’s certain that “rest” is shorthand for “mama.”
I was born with cystic fibrosis, a serious, life-shortening genetic illness. Fifty years ago, CF was a childhood illness, because patients so rarely lived into the double digits. When I was diagnosed, my parents were told I wouldn’t live to turn twenty.
Next year I’ll celebrate my thirtieth birthday. I wake every day with gratitude for the gift of this life, the life that is so much more than what my young and terrified parents could have imagined for me twenty-nine years ago. I’ve had the chance to see my dreams made flesh: a husband who makes me laugh, a daughter full of spunk and fire, friends I cherish, a novel that will be published soon.
Still, despite all the medical advancements of the last two decades, life as a CF patient is a consuming thing. Each morning, I start my day with up to an hour of breathing treatments, firing up a nebulizer and strapping myself into a therapy vest that fills with air and vibrates, stimulating the underachieving cilia of my lungs to shear away the thick, sticky mucus that is the hallmark of the disease. I repeat these treatments at least once more later in the day; when I’m fighting a cold or a case of pneumonia, I do them four or five times.
At mealtimes, I sit next to a wicker basket filled with prescription bottles, sorting pills as I eat and downing them with water in between bites. Most days, I average somewhere in the vicinity of fifty pills.
And these visible, measurable treatments are only the surface. Every afternoon I set Kate up with crayons or cars or books and sneak into my bedroom to take a nap. I limit our walks around the block, our trips to museums, to the zoo, to the park, because each day for me is a careful accounting of energy, a miserly meting-out of just enough for this, just enough for that.
And I say, over and over again: “I’m sorry, honey. Mama needs to rest.” “In a little while, baby. Mama needs to rest.” “I can’t right now, Kate. Mama needs to rest.”
From the time she was four or five months old, Kate was attuned to my health, playing off my physical state like the vibrations of a tuning fork. When I got sick, she’d cry. When I was better, she was too.
As she got older, that sensitivity manifested in different ways. Sometimes now it comes out as impishness, a seeming inability to keep herself out of trouble, the kind of attention-seeking acting out that’s shadowed with frustration. Often, it’s clinginess and tears.
Other times, it’s anger, turbulent and raging. One Thanksgiving, after I’d had six straight weeks of viruses and hardly left the couch, Kate spent the length of every breathing treatment I did sitting on my lap, screaming at me and trying to pry the nebulizer out from between my clenched teeth.
But in the quiet moments, after the anger has passed, the questions come. “Are you sick always?” “Why does your body have CF?” “I know we can’t do that right now… but can we someday? When you’re all better?”
My friends tell me that Kate will grow up rich in empathy and compassion—that being privy to the hard moments, the hospital stays, the floor-to-ceiling cabinet filled with prescription bottles, will help her to mature into a woman who can care for those around her with a love born from understanding. Still, on difficult days, I worry that my disability is robbing Kate of her chance for a joyful childhood. I carry so many worries when it comes to mothering and cystic fibrosis, but chief among them is the worry that Kate will grow up resentful of the illness that steals her mother away from her, desperate to do anything to make it go away.
It’s early afternoon, the quiet, silvery time of day when the house itself seems to be drawing a breath before launching itself into the chaos of dinner and togetherness and bedtime. Sunlight slants through the dining room windows, rare in this exceptionally wet Portland spring. Kate and I sit on the floor in front of her easel, drawing with chalk.
I draw a bear in blue and pink. I give it eyes, a nose, whiskers, a smiling mouth. I dress it in a dapper vest. I’ve just sketched the outline when Kate giggles.
“What is that?” she asks. “A BEAR wearing a VEST? Can bears WEAR vests?” She often talks like this these days, her words inflected with the capital-letter drama only a four-year-old can muster, every question and every statement an exciting revelation.
“I thought it would look nice,” I say.
“Wow,” Kate says, and repeats, “I did not know that bears needed to wear vests.”
Suddenly, I realize what she’s saying. At four, in 2017, she hasn’t encountered very many vests worn for fashion. Instead, she’s thinking of the vest she sees every day—my inflatable airway clearance vest.
I smile. “Should I make this bear me?”
“YES!” Kate cries, excited. “Make it you! It will be named Cindy the Bear.”
I draw the heavy-duty buckles that hold the vest together as it inflates and shakes; the tubes that snake away from the jacket to the air compressor that powers it. In a flash of inspiration, I finish the drawing by putting a nebulizer in the bear’s hand, complete with a curl of white smoke representing the misty aerosolized medicine coming from the mouthpiece.
Kate beams at Cindy the Bear. And though later she erases some of the things we’ve been drawing, she doesn’t erase that.
This is the thing I come back to, on the days when Kate’s dolls cough dramatically and troop to the doctor and back, over and over, or in the afternoons when she asks me yet again why I can’t give her the little sister she longs for. Love.
There is so much that I cannot give my child, much that I may never be able to give her—energy, spontaneity, a life without pills and breathing treatments and frequent resting. Sometimes the specters of those things haunt me, holding hands with the ghosts of the future I cannot predict and circling me with chill and fearfulness. There is so much that I cannot give her. But I can give her love.
I can pull her into my bed in the mornings, when my body hurts too much to get up and wrap my arms around her and tell her the story of how much I longed for her in those long-ago childless days. I can read with her, zoom cars across the stripes of the rug with her.
On sunny days, I can bring the watercolors outside and spend long afternoons with her filling papers with color and light. In the shrouded small hours of the night, when darkness holds us in its grip and she screams herself awake, I can hold her close and whisper again and again, I am here and you are safe. I am here and you are safe. I am here and you are safe.
There are days, I know, that I will not be there to whisper the words: hours when I’m away at clinics, days when I’m hospitalized. Someday, perhaps, my disease—which still only carries a life expectancy of forty years—will catch up with me, and I will leave Kate’s life for good.
But for now, I am here. Perhaps that will be enough.
Cindy Baldwin is a novelist, essayist, and poet. Her poetry and prose have been featured in several print and online publications, including IDAHO Magazine, The Equals Record, and Caesura Poetry Journal. Her debut middle grade novel, WHERE THE WATERMELONS GROW, will be released from HarperCollins Children’s Books in summer 2018.