Defeating the Brothers Grimm
Rachel Rinehart Johnson
Five-year-old Laina lay on my lap, sleeping in snatches, breathing rapidly. “Look at her ribs,” I told Matt, my husband. “They’re retracting.”
“What do you want to do?” he asked.
“I’ve timed it, and she’s taking a breath every second.” I knew I could call the nurse hotline, but the available nurses viewed most situations as dire and told us to bring her in. I didn’t want to go to the ER unless imperative.
Matt ran the backs of his fingers across Laina’s flushed cheek. “Maybe we’re worrying for nothing.” My family, unlike his, sucked it up, going to the doctor only for emergencies. I also believed it better to allow a body to heal itself when possible.
The first time my daughter fought to breathe, she was just ten months old. I held her in my arms as I drove to the ER, terrified she’d stop breathing if I placed her in the rear-facing car seat in the back; only the quick rise and fall of her stomach against mine reassured me. At the hospital, they strapped Laina, screaming, into a contraption to hold her head still to swab for a test and diagnosed her with walking pneumonia and bronchitis. Her respiratory system was compromised by that first major incident causing periodic shortness of breath, but the doctors expected her to grow out of it. Either that or develop asthma. Because Matt had asthma and a nebulizer, we knew how to administer medicine to her. One or two doses and she breathed normally. We hadn’t needed to rush her back since her incident as a baby, able to handle her health at home, talking to doctors only during her yearly check up. Yet, every time she came down with a cold, usually once every few months, she gasped and wheezed, desperate for air.
When Lexi, our oldest, was an infant, I read the typical new mother books like What to Expect the First Year and Sears’ The Baby Book, but I also read unconventional books like How Children Learn by John Holt, The Natural Child by Jan Hunt, and A Short Guide to a Happy Life by Anna Quindlen. Robert S. Mendelsohn’s How to Raise a Healthy Child in Spite of Your Doctor challenged me to reconsider conventional thinking, like not giving my children pain relievers for fevers since fever is the body’s way of repairing itself. Smart Medicine sits on our bookshelf as a reference. Nothing prepared me, however, to handle the reality of a baby whose ribs jerked involuntarily, stomach convulsing like a drowning victim’s floundering for help, as she struggled to breathe. I felt each breath move in and out of her body as if it were my own.
I labored to bring these girls into the world, daughters from my womb, my body. How could I protect them?
Now, Laina’s dulled eyes fluttered open, then shut. Her upper body labored in, out, in out, in out. Time stilled as each suck in and every wheeze out tripled. “She usually snaps out of it by now,” I admitted. “I’m worried.”
Matt frowned. “How many doses has she had?”
“Three.” I glanced at my watch—10:00 pm. “We can’t give another one for two hours, and she’s not improving. She feels so hot. We should take her in, but what about Lexi? Eight is too young to stay home alone, and I’d rather not drag her out this late.”
Matt dialed his parents’ number and talked to his dad, Clifford, who agreed to drive Laina and me to the hospital. We buckled Laina in the backseat, and I climbed in with her to make sure she kept breathing, held her head on my lap and watched helplessly as her chest heaved.
“Where do you want to go? Children’s Mercy might be better since she’s a kid, but Truman Medical Center is closer,” Clifford asked. We opted for the closest one and arrived at Truman within fifteen minutes.
I carried her in the entrance, walked up to triage and signed in. To my alarm, the nurses admitted Laina immediately for low levels of oxygen. Did we wait too long? Would this cause any permanent damage? Would she recover?
I placed Laina on the white, sterile sheet, her light brown hair fanned out on the pillow. I sat next to her on the bed, lightly rubbing my hands up and down her arm. My vibrant Laina bubbled with energy when she could breathe. Her fairy brown eyes sparkled with a daring look, pink lips curled into an impish grin, and her feet and hands cartwheeled the room. It frightened me to see her so listless. I thought of her delight last year playing with orphaned puppies and how she petted a black, shaggy dog and solemnly vowed, “He’s my best friend,” before begging me to buy him. My mind wandered to last spring when she brought me a white dandelion. “Mommy, blow a wish.” I remembered a line I’d recently written about her, calling her “poetry in action” and prayed to see her as poetry in action again soon.
Laina, flesh from my flesh, struggled with her health. Alone, I grappled. What should I do? What was good enough? Who should I trust? Laina’s life hung in the balance, and anxiety held me hostage.
Who had protected me? At age five, I stood alone at our mailbox for my first day of kindergarten, a backpack on my shoulders, clutching a Wonder Woman lunch box in one hand. The bus stopped at the bottom of the hill and honked at me. The driver waved me down, so I hurried through the tall grass, stumbling over bushes. The door slapped shut. “Wait at the end of the road like everyone else,” he snapped. I nodded and hunched down in the nearest seat, the other kids snickering. With my face buried in my backpack, I wanted my mommy.
The nurse snapped a hospital bracelet around Laina’s wrist and connected tubing to an oxygen machine. Made for an adult, the piece didn’t fit. Laina startled awake and whimpered, pushing the tubing away, as the nurse attempted to jab it up Laina’s nose.
“Stop that!” The nurse ordered. “You have to have this.” Laina moaned and slapped it away, her eyes watering. The nurse jammed it again. Tension curled inside, and I clenched my fists.
I wanted to find a better solution, to stand up for my daughter. “Let me help. I’ll hold it near her nose for her.”
The nurse dismissed me and cut off the end, hooking the tubing around Laina’s head so the oxygen blew near her nose. With Laina awake, I pulled her on my lap and talked to her, telling her everything the medical staff wanted to do and why, asking her permission before allowing it. I explained their procedures and the reasons behind them, irritated they purposefully kept us in the dark and only parceled out a slice of information at a time and only when pressed to do so, irritated the current tendency in the medical profession and childrearing practices not only furthered disconnection between self and body but also taught people not to listen to or trust their own bodies. Her body belongs to her, I wanted to shout.
Could that mean that my body was mine?
I began second-guessing our decisions, doubting my skills, my parenting, myself. We should have gone to Children’s Mercy, I thought many times that long, long night.
At age eight, I was confused. Dad and Mom found salvation in Kansas City, and we attended the First Baptist Church. One Sunday morning after class, I asked the church lady a question about Jesus, and she had me say a prayer before immediately taking me to my parents, telling them I had been “saved.” Newton yelled on the way home since I didn’t turn to him for my salvation. As an adult, I recognized that a stranger misrepresented my words, and Newton’s narcissistic reaction complicated the incident. He blamed me for the lady’s assumption, and I was the one in trouble. Shortly after, the preacher baptized me in front of the entire congregation, and we switched from public to a private religious school.
Soon, we had to move upstairs. The nurse pushed the bed along stark corridors with Laina lying still except for the rapid rise and fall of her chest. I walked beside the bed and Clifford shuffled behind, carrying our coats. The nurses and doctors wanted us to agree to oral steroids. As we neared the elevator and slowed down, the nurse told me nightmare tales of kids dying from low oxygen levels. The nurse stabbed the up button, and as the elevator pinged and the door opened, I listened to her Grimm’s version of kids not making it through the night, of oxygen goblins stealing their breath away. She wove a terrifying story.
“My husband and I discussed this,” I reminded her. “We decided to hold off and see if Laina can come back from this herself because steroids have their own problems.” I knew that even a one-time use could cause damage with side-effects that included pressure on the eyes, swelling, mood-swings, high blood pressure and weight gain. Our research said severe and irreversible damage could occur, so I smiled blandly at her scare tactics and resolved to avoid oral steroids as long as the chance remained that Laina would recover without them.
Clifford shook his head, and I wondered if he thought I was making a mistake. I wondered if other parents gave in to the pressure and arguments of the medical profession in such situations. Despite the tension, I held firm—my voice strong. No steroids unless necessary.
Did we make the right decision? Would she survive the night? Would my baby be okay?
Once Clifford settled us into the hospital room and went home, I crashed in the chair across from Laina for an anxious and difficult night with little sleep.
When we lived in Kansas City, I attended TriCity Christian School as a third grader before our move to the country. While puzzling through a math test, I felt an urgent need to pee. I raised my hand and asked permission to use the restroom. “When you’re finished,” the teacher responded.
Squeezing my legs together and bouncing, I tried to finish, to no avail. My bladder released, soaking my navy skirt, tennis shoes and the wooden chair, urine puddling under my desk. The teacher finally assented and allowed me to leave, a doomed girl walking the pirate’s plank to the bathroom. All eyes on me.
To this day, I have no idea how I did on that exam, though I experienced failure. Normal girls don’t pee their pants at age nine. At least that’s the message I received. The panic and pain from that day rooted deep inside, the plague never leaving me. I lived in terror of another accident. I dreaded car rides, worried the driver wouldn’t stop if I needed a bathroom break. I noted the bathroom access first thing when entering a new building and shunned activities that might not allow spontaneous bathroom breaks.
When my mom heard about the accident, she smiled and thanked the teacher for her help in cleaning up the mess and promptly made an appointment for me to see the doctor, to see what was wrong with me. Previously Mom told me not to show my privates unless I wanted a spanking, and shame flamed my cheeks under the doctor’s direct gaze of my nine-year-old vagina.
I recently related the story to a group of young teens, including my daughter. One girl asked, “Why didn’t you just get up and go?” How insane I hadn’t thought to consider my right to leave the classroom and go to the bathroom in an emergency. How would my life have been different, better, without the constant fear of wetting my pants? I wished that my mom would have stood up for me in that moment, questioned the teacher about her policies, reassured me that accidents and mistakes are simply part of learning.
At eight that morning, the attendants arrived for another test. They took Laina off the oxygen machine again to test her capability to breathe on her own. The rate fell back to 87. She wasn’t recovering naturally. At first, the usual worry, doubt, and defeat swamped me as I watched my youngest daughter now literally fighting for her breath. I took a deep breath as if I could breathe for her. I pictured her as a newborn gasping to draw her first lungful of air. This daughter slid so easily from my womb, unlike her older sister, Lexi, who took her time and then cried for twenty-four hours because a nurse grabbed my newborn away from her first suckle. My daughters, progeny of my body, my bones, my blood, were my future. I realized no one else could better parent them, protect them. Although I struggled with finding my voice, metaphorically fighting to breathe, I was their champion. They deserved respect and love, comforting and nurturing. Their pink flesh, sweet baby smell, exuberant energy and curious eyes compelled me, and I knew I would fight with my last breath to save them.
On that day, that meant we agreed to oral steroids to help Laina heal, but we would search for healthier options for the future.
Matt arrived at the hospital to see Laina. He brushed her forehead with a kiss. I knew we made the right choice. Soon after he left for work, Laina stirred. “Mommy.”
“How’s mommy’s angel?”
“Tired. I wanna go home.”
I sat beside Laina on the bed, gathered her into my arms and smiled, assuring us both she’d be fine. “I don’t want it,” she said, pushing at the sticker monitor on her toe. Beep, beep, beep, beep, beep. Again, her heart rate shot up. I took the sticker off. The nurse glared and administered the oral steroids.
Finally, Laina’s breathing, heart rate, temperature and oxygen levels returned to normal. She needed the steroids this time. While I sincerely believe that doctors and the medical profession are good for emergencies, I also believe people turn to them for answers and treatment of symptoms rather than accepting the responsibility for their own health and looking at preventative health before treatment medicine. I am grateful for new procedures, knowledge, and abilities for treating emergencies and saving lives. I am also concerned that too many abdicate responsibility and sometimes blindly obey—something we so often learn at our parents’ knees. For my daughter’s sake, I had to have a clear, strong voice that would not submit to that pressure.
Two little girls sang, “Sisters, Sisters, there were never such devoted sisters. I will keep my eye on you.” My sister Brittany and I were in trouble again, our clasped hands swinging lightly between our stiff bodies as our eyes watched the floor. In our peripheral vision, hairy, tanned legs crossed at the ankles rested bare feet on the pale yellow footstool. Dad sprawled in the mismatched brown easy chair, and we did anything to avoid his wild eyes. “I hope you learned a valuable lesson,” Newton barked. “Don’t do it again.”
“Yes, sir,” we mumbled.
“You can go now.”
The oldest, I flung her hand away as we rushed into the basement where we shared a room. Our playing and fighting resumed, muted, muffled—deadened.
We wished that Mom would speak up for us and stop the humiliation.
Matt’s parents came by the hospital with Lexi and brought Laina a toy doctor’s kit and the Lady and the Tramp DVD. Laina snatched the doctor’s latex gloves and used her new kit to heal us while the movie played in the background. When she started bouncing on her bed, I thought, Time to go home. I’m so relieved everything’s okay.
We’d seen different doctors, nurses and attendants throughout the night, but no one consistently. A new doctor stepped in and asked to speak with me in the hall.
The thin, small young woman shook my hand, introduced herself and, pointing to the charts in her hands, told me that Laina had asthma and would have to use an inhaler and oral steroid.
“How long will she have to use them?” I interrupted. This doctor had never once seen Laina. I felt sure she would want to discuss food choices and options to help cure and even prevent respiratory issues.
“She’ll be on an inhaler the rest of her life.”
“What about the steroids,” I asked, and pondered whether doctors usually made such snap decisions about patients they’d never seen, pondered whether they treated everyone equally in the health care system.
“She’ll need to use steroids the rest of her life too. Here are the prescriptions. We’re sending home enough to get her started. Also, here’s a peak-flow meter to test her lung capacity. Let me show you how to use it.”
My mind whirled with information, and my body hummed with nervous energy. No. No. No. I refused to believe my daughter’s diagnosis. I refused for my five-year-old daughter to be medicated for the rest of her life. I vowed to find another way.
I played hide and seek in the dark unfinished basement with my siblings and a boy from my seventh-grade class. His mom and mine, friends, chatted while picking tomatoes from the garden. Justin caught me, pushed me against the stud in the middle of the room and brushed my lips with his. I gasped. His tongue darted between my parted lips and tangled with mine. He released me, and we continued our game. I touched my tingling lips with wonder. My first real kiss. He left, and my bright red cheeks gave me away. Mom handed me a story to read about a woman who tells her father on her wedding day that her gift to him is that she’s never even kissed anyone. Her first kiss to her husband, the kiss at the altar in front of everyone, was her gift to her father. My cheeks flushed again, this time with shame.
I didn’t kiss anyone again for four years. How could I trust my responses, my own body, if I were to be pure? I understood the message sent with the story in the book: our bodies were evil. Kissing was a sin because it led to sex, the unmentionable, unpardonable sin. My mother would rather we watched violent movies with people killed and maimed than accidentally witness an illicit sex scene. Our bodies had urges and lusts and could deceive us like Lucifer himself.
I wished I could talk to my mom about my body and boundaries.
When I returned to the room, Laina’s hands twitched and flexed. I suspected the oral steroids caused this strange reaction and mentioned it to the nurse. She only shrugged. The spasms continued for a month, the same amount of time Laina took the steroids, as I repeatedly advised our family doctor about them. The doctor offered no explanation, and it angered me because if she didn’t know what to do, she should at least care about this strange development.
We lingered in the hospital, watching Laina’s progress. Once Laina maintained an oxygen level of 95 on her own for several hours, I insisted they release her to go home and rest. We returned to our daily lives except for monitoring her breathing and helping her take both inhalers. My research into alternatives to asthma drugs continued. I joined a food intolerance email list, searched the Internet, talked with friends who had changed dietary plans and checked out books from the library.
The day after we checked out of the hospital, Halloween 2003, Laina woke up short of breath and couldn’t blow a high reading on her peak meter. “Blow, sweetie, try harder,” I said. The reading didn’t change, so I administered medication, primed to take her to urgent care at Children’s Mercy. When Matt’s mom arrived to watch Lexi, Laina tried one more time. She blew over a hundred. I exhaled deeply, relieved and thankful that the biggest problem was that she simply had to learn how to use the meter. That evening, I smiled, happy to see Laina trick-or-treating with Lexi and their friends. The goblins weren’t taking my child.
A few years ago in Kansas City, a student at Donnelly College where I taught had a death in the family. A fourteen-year-old boy died at a high school. He felt bad and went to the nurse, and she told him he was fine and to go back to class. He died shortly after he returned to the classroom. When I first heard this story, my reaction was personal and intense, so I stifled my emotions. To my co-workers, I said, “That’s one reason I home-school. No one listens to kids.” My memories churned that day and the next before rising to the surface—the bus driver, the teacher, my parents—the times I felt invalidated. Cascading emotions flooded me, and I realized how hurt I’d been having my needs ignored; I realized my frustration with the loss of my voice, my anger at not being taken seriously and my anxiety in the face of powerlessness.
While giving Laina the medicine to heal her respiratory distress, I did extensive research into alternatives, which included long conversations with Jessica, a friend whose family discovered an alternative for some of their health issues, namely, changing from SAD (Standard American Diet) to a gluten-free, dairy-free, chemical-free diet, which meant cutting out milk, cheese, and butter, and cereal, pasta, bread and baked goods made with white wheat flour, as well as lunch meats made with nitrates, and any treats made with dyes. I planned to try this diet with our family but decided to wait until after the winter holidays. I didn’t want to try something this radical and new during the holiday season because it would be too difficult with all the parties and traditional foods around.
We had family discussions about concerns, problems and issues with this idea. As usual, I knew we’d do this on our own and keep the doctors for general check-ups and emergencies.
Would it work? Would Laina choose this diet? I didn’t want to force it on her. Giving her medication beat daily battles over food choices. I didn’t think it fair to ask her to try something I was unwilling to do. Would Laina rather keep eating ice cream and taking medications that could damage her health long-term or would she rather be healthy? And, would she feel differently as an adult? It had to be her choice, even at this young age. Her body, her choice, though of course we talked in-depth about what the different choices would mean for the present and future.
“We can eat like Ian and Rachael!” The idea of trying something new like her best friends helped sell the idea as well as the promise to find delicious substitutes for everyone’s favorites.
After much consideration, our family decided to begin on March 1, 2004, after one last weekend trip to the family farm for Newton’s birthday. We agreed to bring only gluten-free, dairy-free, mostly chemical-free food items into the house and to allow the others to eat whatever they wanted outside the house.
Meanwhile, Laina continued with breathing problems every few months, once almost scary enough for another trip to the hospital. I cleaned out our cabinets and fridge, taking anything with wheat or dairy to my relatives for the party.
A friend helped me shop and taught me to read labels. I stocked up and left the health food store overwhelmed and two hundred dollars shorter. Even with the kind help, I realized we faced months, if not years, of trial and error. Eagerly, the girls and I planned our first meals to include long-time favorites like chicken curry, chili and tacos.
The first month, I worried as Laina’s breathing problems continued. However, I loved seeing her make healthy choices for herself both at home and away. After three months, I relaxed when her breathing problems disappeared.
Five years later, Laina is healthy, active and vibrant. She’s remarkably healthy with no breathing troubles in five years, though she occasionally becomes ill after inadvertent cross-contamination or accidental ingestion of wheat or dairy. Last spring, for instance, she ate tacos. After Laina’s eyes puffed, teared, and turned red, we discovered my sister had used a taco seasoning pack that contained a little dairy. Later that night, Laina vomited and fell ill for several days.
The only inhalers left in our house belong to Matt who continues to eat wheat and dairy every day. We continue to find more and better products. For her birthday, Laina chose a local pizzeria offering special, gluten-free crust and vegan cheese.
If I believed everything doctors advised, I wouldn’t have searched further. Blindly listening to a doctor would have left Laina with asthma, constantly medicated, breathing erratically. I doubt she would now, at age ten, excel on the evening competition gymnastics team. I doubt I would, at age thirty-eight, write a story about redeeming my past, reclaiming my voice and recreating my life through the process of renewing my body. I doubt I would ever have reached a major breakthrough where I finally knew without question my worth and right to breathe.
Laina. Almost seven. A swimming pool in Kansas City. I stand beside her in the shallow blue water and hold her up with one hand under her back. The June sun warms our faces. “Hold your head back,” I tell her. “Let go. Trust yourself. You can do it.” She opens her eyes. Don’t let go, she says. Her body is still tense. She doesn’t like water in her face and is scared. “Breathe, baby, breathe,” I chant. “Breathe and let go.” She closes her eyes and releases her body. Laina floats on her back. I smile with pride. She splashes and stands. I did it, Mommy. Her smile rivals the sun.
Laina. Ten. Disney’s Wide World of Sports in Orlando, Florida. Preparing for a gymnastics meet. “Remember what’s important,” I remind her. I spray gel and slide a brush through her hair. Do my best, she recites, have fun, and breathe. “And, I’m proud of you no matter what happens.” I pull her hair into a tight ponytail and fix three holders and one pink scrunchie. Lexi, fourteen, wields the hair spray after we take turns with the curling iron. Finished. Curls bounce. I look into her brown eyes. “You’re so beautiful, Lane-Lane. You’re going to do great today.” I brush her cheek with a kiss. The three of us walk past palm trees in the January sunshine. We enter a building for the international gymnastics meet. I could be at the beach right now working on my tan, Lexi says.
We flash to the previous day at the beach. A magical day of sea shells and leaps, long auburn hair whipping in the wind. The three of us. Our heads thrown back with laughter, our breaths mingling in the ocean breeze. A splash. A split jump. A photograph. Our faces told a story of health and happiness, radiant peace. An afternoon of play. Now, our breathing echoes out and back—safe and free.