I stop running as I reach the end of the sidewalk, where the concrete meets the asphalt, under a large bright red STOP sign.
I walk in tight circles, with my hands on my hips as my breath slowly syncs with my pace.
The four lane road is busy with morning traffic; I watch cars cycle through the four-way stop — just an arm length away: parents with back seats full of children and backpacks on their way to school drop off, commuters in sleek cars, men in crisp collared shirts and polished women with black sunglasses holding stainless steel coffee mugs.
I continue to pace in tight circles underneath the bright red sign; I glance at my feet for a moment, evaluating the right toe of my black Nike running shoe — the nylon has been threatening to split for weeks — but it’s still intact.
I bought the Nike’s for walking, for pushing the double stroller, with our Labrador Tahoe beside me, to the coffee shop down the road. But over the summer I started running. I can’t explain why, especially because I’ve always hated running.
Regardless of the thinning nylon, the shoes are serving me well. Lightweight and thin, they remind me of my volleyball shoes — court shoes — shoes designed for a game where players don’t have to be fast, but they do have to be quick. A game where players don’t have to run for miles and miles, but they still have to have endurance to keep up with and respond to every fast-moving element of the game.
I look up to the line of cars, ready to keep moving.
I make a half-hearted attempted at eye contact with a woman in a minivan as she too waits under the white letters of the stop sign, but she doesn’t seem to notice me, or perhaps I missed her gaze.
She accelerates through the stop sign as I consider slowly stepping onto the asphalt, while simultaneously making eye contact with the next driver, securing the start of a safe crossing through the busy morning traffic.
But the next driver — a middle-aged man in a white sedan is looking down, and using both thumbs to type into his cell phone before he too quickly passes through the intersection.
I look into the next car, attempting to make a connection with the driver, but the side windows are tinted so dark I can’t see. I watch the car drift into the intersection.
I quickly decide to position myself closer to the curb, in front of the pole under the O of STOP.
A silver 4Runner stops in front of me and a woman in a blue baseball cap waves me on, inviting me into the intersection.
I step onto the asphalt, the driver of the next car also waves, encouraging me to continue through the intersection.
I run past them with a wave of gratitude, simultaneously checking for oncoming traffic, but the intersection is clear — every vehicle is frozen, 10- 15 cars back. And everyone is looking up — watching and waiting for a person — the runner in worn out Nike’s to clear the intersection.
Once I do, I step onto a wide path of uneven dirt and rocks, sprinkled with eucalyptus leaves.
My favorite part of the run, the part where I feel the most alive.
The earth molds to my shoe giving way under the pressure of each stride as I make my way up the mild incline, bobbing and weaving between miniature water carved crevices, over a storm drain and over broken glass from abandoned beer bottles.
Each step is different and the ground is unpredictable, but somehow my stride is intact as I anticipate and respond to every fast-moving element of the path — the earth beneath my feet.
I continue to run and climb until I reconnect with the pavement — the final length of my run.
I use the bottom half of my tank top to wipe sweat from my forehead and the side of my face as I continue to run down a long stretch of pavement through streets of houses.
I pass the first house, the second driveway and then, quite suddenly, like lighting striking under blue skies, an uninvited image surfaces and claws its way to the front of my mind:
My 4-year- old daughter, Nora laying in a ER hospital bed — feverish and in and out of seizures — my hand on her forehead — the yellow medical binder I use to organize Nora’s medical care, all her care, the one with a watercolor print of 3 blue birds on the front and a quote “When it comes to mothering your daily grind is holy ground.” (T. Gray) is on a side table, a team of fast-moving medical helpers crowds around her bed.
This specific image has haunted me through the summer and into fall; it reminds me of and brings me back, immediately and unwillingly, to the moment my voice disappeared at Nora’s hospital bedside like thin vapor in wind.
I keep running, knowing what’s coming if I can’t stop the images that are about to play out like a movie in my head. I start to cry, but keep running, my breath out of sync with my stride.
Knowing I am being haunted by the reality that if and when my voice disappears, so does my child’s voice — a child who relies completely and fully on her family and a world of helpers to live her best life, to care for her soul and body.
A reality that is my greatest honor.
But when I think of my lost voice, when I think of my stunned silence, it is a reality that makes me feel weak, incredibly vulnerable, utterly imperfect and sometimes even helpless.
I continue to cry — I keep running but my breath is out of sync with my stride.
I stop in the middle of the sidewalk and rest my arms on my knees, breathing hard — looking down at the pavement, staring at the toe of my right shoe. I use the bottom half of my shirt to wipe away tears, then stare back at my shoe.The nylon is still intact.
I track a fast-moving trail of ants by my shoe, running parallel to my feet, in sync with the Nike swoosh — the universal symbol of hard work and progress.
I attempt to anchor my breath by counting ants — trying to align my mind and my body.
Trying to breathe.
1… 2… 3… ants. Exhale.
4…5…6… ants. Inhale
My eyes follow the trail of ants to where it disappears, off the sidewalk, into the thick green lawn of the second house.
I look down again. The ants are suddenly morphing into one fast-moving blurry line as a fog of tears fills my eyes; I try to distinguish one fast-moving ant from another, but they’re moving too quickly.
Suddenly I’m overwhelmed again by the image of Nora in a ER hospital bed, surrounded by a team of fast-moving helpers — I close my eyes and attempt to push the image away, but the details of the day flood mind and all at once.
Since the moment we walked through the sliding glass doors of the ER, the helpers were worried. Pokes and prods had been ordered for the exact same moment, medication was ordered — Valium from a syringe — to help calm Nora’s on and off seizures. Teams of helpers were cycling through the blue curtain surrounding Nora’s bed until someone pushed it aside to make room for more helpers.
Nora was feverish, eyes hardly open, in and out of seizures. But I was still talking to her, clearly and calmly, telling her where we were, why we were there — reassuring her I was close.
I spoke calmly to the doctors too, explaining and re-explaining, then re-re-explaining every detail of Nora’s care and status the last 24 hours.
One of the doctors at Nora’s bedside was using her iphone to type in numbers, verifying doses for ibuprofen and Tylenol — the doses we had been using to fight her fever at home.
But she had calculated and communicated doses that did not make sense to me, doses that seemed almost double what we had been using.
A syringe of Valium was hand delivered by a helper who joined the nurses and hovered around Nora — watching them finish her IV.
I remember asking the doctor about the fever reducer doses, asking her, “Are you sure?”
The doctor did the math again, this time showing me the numbers on her phone, speaking clearly and also integrating formulas — conversions for pounds to Kilograms — the language of medicine.
But it still did not make sense to me. “Are you sure?” I asked her again.
She quickly turned to the nearby computer, and pulled up a large graph filled with waves of rainbow-colored lines, and what looked like a cluster of tiny ants in the center “Look at her height and weight” she said, pointing to a single tiny ant that had broken away from the cluster, an ant who was outside the rainbow lines and about to crawl off the chart.
“Look how much weight she’s gained,” she said.
But then her face fell, and she turned quickly to the nurses and said sharply
“She weighs 30 pounds ladies, not 70 pounds.”
The nurses replied with stunned silence. One of the helpers had entered Nora’s weight into her chart as 30 kilos, instead of 30 pounds (the equivalent of almost 70 pounds).
I stared at the syringe of Valium, an arm’s length away from my daughter, a syringe ordered and filled with a dose of Valium for a child double my child’s height and weight.
I felt nauseous — like I might faint.
Again, my daughter and I were at the mercy of fast-moving systems, helpers, at the mercy of a simple data entry error and a team of people moving too quickly to see a 4-year – old ballerina could not possibly weigh 70 pounds.
The syringe of Valium was quickly sent away — and a new one was ordered — one for a 30 pound ballerina.
I remember whispering a breath prayer of “help” with each exhale.
I felt desperate for coffee and cream — desperate to stay sharp, alert and constantly vigilant — hyper vigilant — in tune and in sync with every fast-moving detail. It was like playing a volleyball match — guarding the net — preparing for the hit, moving in sync with the setter and a row of hitters — but somehow, completely missing the ball — and the block.
I reassured myself, again and again that as long as I didn’t faint, as long as I had my voice to slow things down — to ask clarifying questions, to verify every intervention, medical procedure, and to double and triple check every detail of Nora’s care, everything was somehow going to be okay.
When Nora was stabilized and resting comfortably, three nurses came with supplies to collect a urine sample. I remembered the doctor’s words when she ordered the test, “Unexplained fevers in girls this age who are still in diapers are usually caused by urinary tract infections.” I almost always deny routine urinalysis tests on Nora’s behalf when my gut tells me no, when I know the infection is in her lungs, even when ER nurses and doctors push back.They are checking off boxes as they should, I’m trying to save my daughter from a painful medical procedure.
But this fever was a mystery, even to me.
I agreed, an eventual urinalysis seemed necessary in order to find the source of Nora’s fever.
Out came a waterproof pad, iodine, and a catheter. I stood near Nora’s head, holding her hand and talking to her. Her eyes were closed, but she responded to the bright light, and to the cold as the white sheet covering her body was lifted. She slowly moved her head back and forth — the universal sign for “No.”
I continued to talk to her — quietly near her ear, her fine blonde curls dancing with my voice — she turned her head to mine — listening to my words — calmed by my voice.
I suddenly realized, mid sentence to Nora, that I didn’t know how to explain medically, what was about to happen to her. I asked the nurse closest to me,
“How would you typically explain this process to a child Nora’s age?”
The nurse looked at me and said with a slight shrug “We don’t normally do this type of test on a kid her age.”
I stared at her, stunned. I opened my mouth, and then closed it again.
My voice was gone.
The nurses gathered a urine sample using a catheter, quickly and efficiently.
I comforted Nora, covering her in a sheet up to her neck, keeping her close to my breath — to the prayer that brought my voice back to life again, “help”.
When I open my eyes, the trail of ants is back in focus. I count 1…2…3… fast moving ants.
I stand up, making room for more air in my lungs walking slowly in tight circles, hands on my hips, avoiding the thick trail of ants — careful not to disrupt their hard work and progress.
I begin to throw questions around my mind, internally processing, again, the moment of the lost voice.
So, what process is the world of medicine using for all other children Nora’s age? Were there other, less invasive options available for Nora?
Why didn’t I use my voice to clarify?
Even if the procedure was the only option and the only way to collect a urine sample from Nora, how could I, her mother and her voice, accept though shrugged silence, that the world of medicine does not have the language to explain a medical procedure for a child like mine?
Is everyone like the nurse at Nora’s bedside, shrugging their shoulders when it comes to finding the words for a medical procedure for a child like mine?
All people deserve words for every medical test, every procedure, every treatment and every poke and prod. All people deserve words and clarification for exactly what is happening to their body and why it is happening.
I believe shrugs have no place in hard work and progress.
I stop pacing and plant my feet firmly facing home.
In my head, I hear my husband Tyler’s voice — echoes of conversations we’ve had since the moment of my lost voice:
“Jesse, it’s the ER. These people deal with ‘emergencies’ all day long. Everyone there was just trying to help Nora by doing their job, they have so many things that need to get done — quickly.”
He’s not wrong, I think to myself.
But even given the context of Nora’s ER visit and eventual hospital admission, the urine sample was not urgent.
And, at the end of a two-day hospital admission, after a slew of pokes and prods for Nora, after every single sample had been labeled, collected, tested or grown, the team of attending doctors and specialists had no answers, no more information then they did the moment we walked through the ER doors.
Surely, there was time to find the words for a mother and her daughter.
I start to walk home, stepping delicately over the trail of ants, as I move on to the driveway of the 3rd house, staring at the bright pink flowers of the bougainvillea growing along the fence towards an open hill, an abandoned field of California native plants, wild and unkempt.
I hear Tyler’s voice again — but just one word echoes in my mind “quickly.”
Doesn’t he and this world of helpers understand, that when people move too quickly in the name of helping a very sick little girl, they might miss something important, something as simple and crucial as data entry, or something as simple as slowing down long enough to look at a patient, to determine that a 4-year-old little girl could not possibly weight 70 pounds, something like finding words to explain a medical procedure to a blonde haired ballerina and her mother?
I start to wonder how the team of helpers might have responded if I had not lost my voice, if I had asked them to STOP— to listen and to explain, and then to find the words for a medical procedure for a child like mine. Would they have said “she can’t understand anyway” and then tried to teach me about mental orientation during seizures or fevers?
Would they consider pulling up Nora’s MRI results — one click away from the rainbow-colored growth chart — to help me see and understand how her brain is not “typical” ?
Surely even the shrugging shoulder nurse must have known, that as I spoke to my daughter in her hospital bed, even I wasn’t sure if Nora could hear me through her fever and the seizures.
And that even on Nora’s best day, I don’t know if she can fully comprehend the context of a medical procedure.
But, I also know Nora is constantly surprising me.
Like the time Nora was 18 months old, and I told her there was a 20 week old baby boy, Everett, her little brother, in my “tummy”— In that moment, Nora leaned over my body and kissed my stomach.
Because my daughter Nora, who is without words, speaks the language of the soul — a language of love and respect.
A language a sister speaks to her unborn brother.
Surely the nurse must have known that when I speak to my daughter at her hospital bedside, as I explain every poke and prod despite fevers and seizures, that I too am speaking the language of the soul.
And inside Nora’s failing body is the soul and light of a little girl whose name means light, and not just any light, a light among lights.
And if my little girl, the girl with the bright soul, should seek comfort as she lays in a ER hospital bed, she will hear her mother’s voice, reminding her that she is never alone.
And if my strong, hard-working ballerina, should feel weak or tired, if she feels like giving up, if she feels helpless, she will hear her mother’s voice, reminding her that the hospital is filled with angels who see the face of God, that miracles happen here every day, that hospitals are more than buildings — hospitals are holy ground — a thin place where the temporal meets the eternal.
And, the world of helpers needs to know, that when I speak to Nora at her hospital bedside, as I explain where we are and why we are here, and when I request the words to explain a medical procedure, I am giving my daughter her dignity.
Especially and always as she is at the mercy of fast paced systems, imperfect helpers, and as she is at the mercy of her own body — a body that fails her day after day and again and again.
My mind flashes back to the year 2014, to December the “Holiday of Miracles” when stories from the hospital that serves Nora and our community, take over the airways, stories from patients and patient families.
I remember sitting in my dark car in a Vons parking lot listening to the story of a mother whose son had been in the ICU, perhaps in coma, or sedated — a state that prompted her to ask his doctor:
“Can he hear us?”
I remember hanging onto the mother’s every word, then the long silence, before she gave the doctor’s answer and said, choking back tears:
“His soul can.”
I consider running home, but the truth is, I’m tired.
I’m tired of trusting a world of imperfect human helpers, fast paced people operating in the context of fast paced systems that serve Nora and our family. I’m tired of hospitals, education offices, intervention services, medical therapy units, DME providers, pharmacies and insurance companies.
I am tired of trusting them to see my daughter— her 30 pound body and the light that is her soul.
I’m tired of hoping that they too see the future that is hers — a day-by-day happily ever after — a life full of purpose and possibility.
I am tired of feeling tested, by God and by the universe.
Doesn’t He know I am not actually Wonder Woman? That none of us are?
But I know He knows.
And I know He knows my voice.
I know He hears my stunned silence and I know He’s close enough to hear my breath prayer, “help”.
I reach the end of my route, my front door. I walk into the entryway, greeted by the 2 ½ foot framed print that says:
“Be Still, My Soul.”
I hear Tyler, Everett, Nora and Tahoe playing in the backyard.
I stare again at the words on the wall. I know hauntings of the lost voice will come again and with that will come the feelings of weakness, vulnerability and utter imperfection. Trips to the ER will come again too; so will necessary pokes and prods, and the choices about non-urgent urinalysis tests.
“Let the moments come” I think to myself. I’ll be ready with my voice.
I look down to my shoes — evaluate again my right toe and the slowly thinning nylon. I decide it’s time to buy new running shoes. This time it will be shoes that match the bright red STOP sign, shoes made for crossing four-way intersections, and flying up dirt hills, through small water carved crevices and over broken glass. Trail running shoes made for running miles and miles on dirt paths. Shoes made to support hard work and progress.
I hear Everett laugh and the rapid jingle jingle of Tahoe’s collar.
There will be no more moments of the lost voice.
Because, next time, I will remind myself that if something is non-urgent, it is always okay to slow things down — even in the emergency room.
Next time, before any test or procedure is performed — or even ordered — I will ask if it is a “typical” test for a child Nora’s age. I will ask a thousand “why” questions, until I understand every single detail and every single rational, until I am ready to decide what the best option is for Nora.
Next time, I will ask a nurse to explain any and all medical procedures to my 4-year-old daughter. And if the nurse doesn’t have the language, I’ll ask her to find someone who does.
And if all else should fail, if I am desperate to slow things down, if souls and bodies are beginning to seem invisible, I will say calmly and firmly, “I need everyone to STOP what they are doing until someone can page the doctor who believes in souls.”
And then, I will slowly close the blue curtain around me and my daughter, leaving the row of helpers and the wheeled computer screen on the other side. I’ll create a space to breathe, a space to slow down. But, before I completely close the circle tight, and turn off the exam light above Nora’s bed, I will politely ask the team of helpers for a cup of coffee with cream while we wait.