“W hat the fuck?!” Pulled over on the side of the road, I dug my fingernails into the steering wheel and curled my torso around it. “What the fuck?!”
If memory serves me right, these were the third and fourth times I had ever used the f-word. My Christian upbringing taught me to express myself in more refined ways than casually slinging expletives. But this was not a casual moment; this was a moment of desperate prayer. As I sat on the asphalt shoulder of a Jordanian highway, my baby was lying in a hospital bed, her brain infected and swelling from an illness no one could diagnose.
Nove—which rhymes with “clove,” and is an Arabic name that means “pinnacle” or “mountaintop”—started presenting symptoms a week before. While meandering through a Christmas bazaar with all five of my small children, I noticed Nove was more wobbly than usual. She was only fourteen months old, but she started walking before she turned one, and was prone to climbing onto tables and scaling bunk-beds in attempts to keep up with her siblings. As I watched her slump to the ground after a few unsure steps, I took note.
The next day, our family ventured to the mall to see Santa Claus. While waiting in line, a woman next to us screamed.
“Hey! Hey! Something’s wrong with her!”
I followed her pointed finger and looked down at Nove, who was strapped to my chest in a baby carrier. Her eyes were rolled back into her now stiff-but-twitching head. One of her arms made abrupt movements away from her body.
“But this was not a casual moment; this was a moment of desperate prayer.”
“Oh, Jesus. It’s okay,” I reassured myself and the others who were gathering around me. “She’s having a seizure.” The only reason I kept any sense of calm as my baby’s body simultaneously grew rigid and shook is because my son, Abe, had already experienced two febrile, or fever-induced, seizures at this point, both of which were long-lasting and dramatic. Doctors warned me my other children had a heightened likelihood of similar seizures. My husband, Peter, took our older four children home while Nove and I took a taxi to the hospital. On the way, I began praying as if on autopilot, asking God to protect my child and make clear to the doctors whether this was a fever-induced fit.
“You have nothing to worry about,” the ER doctor assured me, confirming Nove had a low-grade fever and no sign of infection. “Nove will grow out of these febrile seizures by the time she’s five. And it’s likely this is the only one she’ll have.”
But over the next few days, the seizures kept coming. And they were different from Abe’s, which took over multiple parts of his body. Nove’s seizures, only a few minutes long each, localized in her face and left arm—like rhythmic twitches as she stared, seemingly unconscious, at the ceiling. She also stopped walking. Then she couldn’t sit up without toppling over. And then she started to scream.
“She has an ear infection,” the next ER doctor confirmed. Worried about the combination of an identified source of infection and repeat seizures—signs the convulsions were not febrile—he admitted Nove to the hospital for a twenty-four-hour observation period. Four days and multiple tests later, we were still there, and no further conclusions had been drawn about the source of the seizures. Nove was deteriorating rapidly. She had lost intentional use of her limbs; they jerked and flew out from her body without apparent cause. She couldn’t reach for her favorite stuffed bunny or clasp her fingers around the doctor’s pen. She was no longer eating solids of any kind, and had barely nursed that morning.
Before stopping on the side of the highway, I had been on my way home to see the four children I hadn’t held in two days, likely the last time I would see them for a while. Nove and I were supposed to be flown out of our home in Amman, Jordan.
In ten years working with Palestinian and Syrian refugees in the Middle East, my husband Peter and I had multiple experiences with the Jordanian health care system, sometimes with refugees, sometimes for personal needs. We had always been satisfied with the standard of care. But now, four specialists told us we’d exhausted all options when it came to testing and diagnosing our regressing baby.
“If you can get her out,” our pediatrician said, “get her out. Get her somewhere with more advanced testing.”
Everything was approved. Multiple specialists signed off on the urgent need of an air-ambulance. A world-class hospital in London approved Nove for immediate admission. Our insurance authorized our request and arranged a medevac company in Istanbul, Turkey to send a plane—one equipped with a doctor, nurse, and the IV set-up Nove required—to shuttle us from Amman to London. But we still had two more days to wait because important people in important offices from all of these aforementioned places needed time to sign important papers. While pages transferred from desk to desk until someone scratched a perfunctory signature, my baby got sicker. And my prayers became more desperate. Desperate for a diagnosis, for a cure, for calm. Desperate for clarity of meaning or purpose to all that was unfolding, for the assurance that it was all going to be okay. Desperate for faith itself. The divine protection I’d been asking for seemed as slow-coming as the bureaucratic scribbles we required to access Nove’s life-giving care.
I had reached the end of any power held by my American passport or bank account. From the start, I’d been aware of my privilege and what money could buy. The first day Nove underwent her first brain EEG, the nurse informed me the technician required two hundred Jordanian dinar—just shy of three hundred U.S. dollars.
“Do you still want the test?” she asked.
I glared at her. “Of course! The money doesn’t matter!”
“Of course.”
My shoulders fell slack as realization crept in. Oh, God. How many parents aren’t able to say “Yes”? Afterwards, I would agree to all of Nove’s following tests with a guilt-ridden gratitude. We had the resources to help keep my child alive, and the thought that other mothers and fathers couldn’t do the same was overwhelming.
I slammed my fist onto the dashboard and unleashed one last guttural roar. I didn’t have time to wait around for God to answer my burning question about why this was happening, or care if He was offended by my obscenity. I had to see my four other children that I hadn’t seen in days, and time was of the essence. In a couple hours I needed to return to the hospital and try to nurse Nove again. Taking a deep breath, I wiped tears from my cheek with the back of my hand and used the neck-line of my shirt to dab my nose.
Merging onto my neighborhood exit, my longing for my children peaked. I had been so absorbed with Nove the past week that most details of my other kids’ lives were off my radar. I hardly knew which friends were watching what children, had no idea if anyone had eaten a fruit or vegetable in days, and had even forgotten to ask Peter if they were all sleeping through the night.
Walking up to the front door, I saw my five-year-old, Jed, pressing his face against the window and waving his arms at me. He’s been waiting for me. Two long days had left me pining for my children, and Jed’s innocent excitement revealed he’d felt the same. Swallowing the lump in my throat and pushing down the guilt for those extra minutes I spent crying on the side of the road while my children eagerly awaited my return, I forced a smile.
“I’m home!” I yelled through the window.
Within seconds, four affection-hungry babes surrounded me in the foyer of our apartment. Kneeling on the floor, little padded hands rested on my arms and shoulders, small noses brushed against my cheeks, and the chill of the damp, sad December day thawed under the warm embrace of tiny limbs. I wished it could last forever.
But it didn’t. It couldn’t.
Driving back to the hospital, I passed the pull-off where, only a couple hours before, I’d flung four-letter prayers towards Heaven. The warmth of being with my big four dissipated, and I steeled my heart as I returned to my hurting baby and the acute reality of questions—both medical and spiritual—that remained unanswered.
Before the triplets were born, Peter and I spent four years working on the Jordanian-Syrian border with thousands of refugees who had just escaped a gruesome civil war. Almost every day, bombs from Syria vibrated the ground beneath our home and painted the night sky an eerie neon green. Day after day, I sat with mothers and fathers who held dying children in their arms before crossing the border. Shrapnel. Stray bullets. Assad’s regime ravaging his own people.
I knew my shock was secondary. Still, it was painful enough that I developed ways of numbing the graphic tales I heard over and over again. In my stronger moments, I prayed. Turning to prayer for peace and petition was a habit I’d built my life around when times were trying. That’s not to say that the act of prayer dissolved the pain, but it did make discomfort at least a little more endurable, believing that there was some redemptive glory in the mere act of faithfulness, patience, and trust.
When I couldn’t find relief in prayer, I distracted myself. I blasted music. I cooked. I decorated Pinterest boards. I followed Beyoncé and Ellen on Instagram and suppressed the realities of the people around me, including my own. Distraction proved to be shallow and often ineffective. But ping-ponging between put-together piety and denial of the things coming apart kept me functional enough to do my day job and preserve the familiar shape of my faith—to keep believing that good things would come out of the bad, someday, somehow.
With Nove in her condition, I didn’t want to numb myself to what she was experiencing. I wanted to be present for all of it. A mother’s love can reach beyond reason, and in a strange way a part of me desired to feel what she was feeling so that I could be close to her, so that I could bear the pain instead of her. If there was a physical way to switch places with her—to take on her suffering for her—I wouldn’t have hesitated. Once again, I was reminded of the faith I was finding hard to grasp: faith that was not just running low and wearing thin, but faith that was hard to grasp in the intangible sense of comprehending the redeeming, sacrificial love of a God that could intervene but wasn’t. Prayer was different for me before Nove got sick. It became more erratic as my concern peaked and understanding waned. My Christian faith upheld that God could take on my suffering for me, that He had. So where was God now? In the midst of my most heartfelt pain? In the midst of Nove’s physical pain? I didn’t see the working hand of the divine. And I certainly didn’t feel it.
Of course, great thinkers and theologians have wrestled with questions of theodicy for centuries: the coexistence of suffering and a merciful, gracious God. Having been nearly broken at the hands of their own respective suffering, many have arrived at eloquent and profound conjectures about God’s intersection with pain. But at the height of Nove’s suffering, I was incapable of hearing wisdom or taking comfort from the words of philosophers and theologians. In these early hospital days, my pain proved base and unrefined. Gut responses to Nove’s illness—anger, confusion, fear—led my heart, proving to me that the primitive “fight or flight” response isn’t just a physical reaction to a threat but also an emotional and spiritual one, cutting off headspace where logic, reason, or even wisdom might usually prevail. I had no desire to be propelled forward in hope or healing by heralded greats of my faith who’d already done their grappling with God and written about it. I even found it hard to accept consolation from well-meaning family and friends who sent me Bible verses and “thoughts to chew on” concerning the greatness of God.
My image of God was the only appropriate contender with whom I could enter the ring and wrestle. After a lifetime of “staying the course,” or “fighting the good fight,” to quote the New Testament, I felt owed an explanation.
During this first week in the hospital in Jordan, in rare moments of stillness, I often thought back to a simple sentence I grew up hearing in church: “Jesus wept.” This was, I believe, the bubbling up of years of my faith training. I had long-practiced the art of choosing to see the light in dark situations. But this was the darkest place I’d known yet, and I wasn’t wishing for any silver lining that didn’t include Nove’s full recovery. Still, these two words found their way into my quiet moments.
The short sentence—subject of some of the longest interpretive debates and discussions in Christian thought—hails from a passage in the Book of John. My faith tradition holds that two thousand years ago—in a place not far from the Jordanian desert my family called “home”—Lazarus, a beloved friend of Jesus, fell sick and died. In the story, Jesus heard Lazarus was fatally ill but idled for days before making the long journey to visit his suffering friend. By the time Jesus approached the town of Bethany, Lazarus had been dead for four days, buried in a tomb, and mourned by many.
What follows in the Biblical passage is the account of Mary, Lazarus’s sister and Jesus’s friend, confronting Jesus as he entered the village. She charged at Jesus, threw herself on the ground, clawed at his sandals and cried: “If you had been here, the one I love wouldn’t have died!”
As I sat in the hospital with Nove, I identified with Mary. I imagined her recorded words having a similarly unbridled tone to my roadside prayers.
The Bible recounts this response to Mary’s breaking open: Jesus wept. Before this experience with Nove, these words had been a sign to me of Jesus’s love for Mary and her family. A sign that the Son of God had empathy for humanity.
But I was angry. There’s no plainer way to put it. I didn’t want God’s compassion or tears. All I wanted was for my baby to be better and life to be normal again. Mary’s story pointed to Jesus’s nearness in the chaos. For me, though, nearness wasn’t enough. I wanted an end to the chaos. For my child, who was barely hanging on, I needed a miracle like the life-saving one Jesus granted to Lazarus.
The next two days at the hospital in Amman were a jumble as we waited to go to London. The quiet moments of Nove peacefully sleeping in my arms flew by; the long, extended periods of semi-conscious screaming and terrible experiences changing IV catheters and still waiting for the medevac team felt unending. The source of infection and swelling in Nove’s brain—encephalitis—remained ambiguous. What we did know was that the encephalitis was causing the seizures and collapse of mental and physical capabilities. I wondered with each passing hour whether she was losing ground she wouldn’t be able to regain.
Finally, after six days, it was time to leave. The flights to London were smooth, but difficult. I went alone with Nove—Peter and the kids followed later on a commercial flight—and held Nove on my lap for the nearly three hour trip to Istanbul, then the next four hours from there to London. She writhed in pain and confusion. I did my best to comfort her. The hardest part of the trip was the final, hour-long ambulance ride from the small airport where we landed to the hospital in downtown London. Having hardly slept on the plane, Nove was beyond tired. Fire lit up my back from holding an almost-toddler in awkward positions for nine straight hours.
But my discomfort dissolved when we arrived at the hospital. A team of doctors and nurses were waiting for us at close to midnight with files and clipboards in hand. I’ll never forget the sight of them standing in that hallway.
“We’ve been studying Nove’s case today, and we’d like to dictate it to you as we understand it,” the leading pediatric neurologist said. “Stop us if we get a detail wrong or leave something out.”
I didn’t have to interrupt once. The team quoted exact dates, times, and lengths of seizures. They listed each test undergone and what the results had or had not revealed. They told me of their plan for the next seventy-two hours: what additional tests Nove faced, what they had discussed as plausible causes for her deterioration, and what they hoped to learn about her case.
“Right now,” the doctor wrapped up, “I want you to sleep. Both of you. It’s what you need the most.”
At his words, my knees buckled and I hunched over my baby. Relief let loose and so did the tears. Multiple hands found my shoulders and back, and someone lifted a sleeping Nove out of my arms.
“You can let your guard down now,” a nurse whispered while helping me into a chair. “We’ve got you. Both of you.”
The next day was Christmas Eve. Peter and the kids made it to London and settled into an Airbnb. My sister-in-law, who had come from the States with her family to support us, strung colorful lights around the room, and I tethered seven felt stockings to the bars of Nove’s crib. Despite the joy of the season, the day felt heavy to me. It was partly due to my own drawn-out displeasure with my crass, doubtful questions I’d been asking of God. Having relied on my faith as a constant despite circumstance, I was beginning to grieve this loss of assurance.
But the day also felt heavy for another reason: I knew what was happening at midnight.
Nove was scheduled to receive a slew of tests, ranging from slightly uncomfortable to painful. Because of her age and current medications, she could only receive a light sedation to help her through them.
At a quarter to midnight, a team of four doctors and nurses entered our room. I was to stay in the parents’ waiting area across the hospital floor. Before I exited, I took one last look at my sleeping Nove. Her golden hair glowed in the soft light opposite her crib. I hovered my hand above her small back, not wanting to wake her, and mouthed, “I love you.” Squeezing my stomach tight, I released a deep breath as slowly and evenly as I could, trying to relax a taut bundle of nerves and guilt from leaving my baby to suffer for her own good.
For ten minutes I sat in silence in the small parents’ room of the pediatric long-term care unit. Peter and I had decided it was best for him to stay back with the other children, but now I regretted it. I felt alone, helpless. Closing my eyes, I attempted to pray. I tried to get back to the Ana I knew—a person who trusted that God was good and who prayed from a stance of faith, not fear. A person who could lean into the nearness of God and sense Jesus weeping over my child’s suffering and my pain. But since my moment on the side of the road a few days ago—since screaming an over-simplified admittance that God wasn’t showing up for me or Nove the way I believed was within the realm of possibility—I had found it hard to pray. I managed to utter “help her, help her, help her” a few times. But my honest, raw sentiments hadn’t changed, and my questions still hadn’t been answered.
I glanced down at my phone: three minutes until midnight. Earlier that afternoon, I updated friends and family about Nove’s tests via Instagram and Facebook. I asked anyone who was able to join me in singing “Silent Night” at midnight London time—a song of hope for my baby as she began the challenges this night would bring. At exactly 12 a.m., I started singing. I barely made it through one line before I began choking on the words. Prayer wasn’t the only thing that now felt disingenuous. Singing “all is calm” about a “tender infant” did, too.
I persevered for Nove, but as I reached the second verse, I heard it: a terrible, chilling scream from down the hall. I pulled my knees into my chest and covered my ears. My carol halted, overtaken by an audible lament.
Simultaneously, I felt a buzzing from my phone, followed by a series of dings, one after another, growing in number and frequency. Concerned it could be Peter trying to reach me, I took a breath and peeked at the screen. Instead of a single message from Peter, I found dozens of notifications, from photos to videos, of friends and family across the world, sharing that they were singing for Nove: individuals standing and singing in their kitchens, families lifting their voices in front of sparkling trees, entire congregations clutching lit candles and releasing words of hope in honor of my baby.
That Christmas Eve, Nove endured four lumbar punctures (more popularly known as spinal taps), a handful of throat and nasal swabs, and a tray-full of blood samples. I heard the sound of those tests; it was anything but a “silent night.” And yet, as Nove slept and recovered from her tests, a flicker of unexpected comfort rose in me. It wasn’t a superficial presumption that, in the end, everything would be okay. And it didn’t erase the fact that my child spent an hour of the night screaming in pain. But it was enough hope to last until morning.
Over the next two weeks, we got answers. Nove’s life-threatening bout of encephalitis was caused by the common cold. More specifically, Influenza A and something called “Corona.” For us, clear results meant medication could be tailored to Nove’s needs. She responded quickly and well. Her doctors ran further tests to decipher whether a predisposition to traumatic reactions of this nature existed, and if we needed to be concerned about future life-threatening occurrences. Nothing came back conclusive, but our spirits lifted as Nove recovered her strength. The day after a specialist had told us it might be six months until Nove regained her ability to walk, she pulled herself up to standing. The following day, she took several individual steps. In less than a week, she toddled around the hospital floor, awkwardly bending arms and legs as if she remembered them working for her before, but wasn’t certain she could trust them presently. My baby’s hesitant physical movements served as a visual for what was taking place deep down inside my faith world—trying to recover rhythms and grace of the past, unsure I could trust them to sustain me beyond the moment but hopeful that something was beginning to rebuild.
Soon, Nove’s rehabilitation surpassed my emotional recovery. Over a few months, with the help of six to nine rehab appointments each week and heavy daily doses of anti-seizure medication, she returned to the Nove we remembered. And yet, pain changes a person. It changed how I perceived God and understood the workings of my own faith. Before Nove got sick, I didn’t have the vantage point to realize how transactional and expectation-laden my belief system was. As often and easily as I had professed the “goodness” or “greatness” of God, I had rarely questioned how I defined or understood good or great. I assumed they meant I served a God who agreed with my interpretation of these words—health, safety, stability, happiness, abundance. In a way, I realized I had approached prayer as a magical incantation, that, if I said the right words the right number of times from the right state of heart (“right” being a relative word), my deepest desires would be granted. One might think that a thorough reading of the Biblical canon and an honest glance at the lives of fellow Christians around me would have abated these rosy presumptions. But it wasn’t until Nove’s illness—and really, my lingering trauma months after her physical recovery—that my faith perspective seismically shifted.
In March 2020, two months after we returned to Jordan with our healing Nove, I had a strange and unusually-vivid dream. I was walking on the shore of a long, cloudy beach, staring out at a grey sea. The cold water lapped against my ankles and I was fixated on what looked like people stranded far out in the middle of the ocean. They seemed to be drowning—like the swelling waves were about to overcome them. From behind me, I heard Nove’s voice.
“Mama, come! Mama, come!”
I turned to see her standing on a small, grassy slope, rays of sun bouncing off her blonde head, a smile stretched across her face. She held her hand out toward me, beckoning me to join her, to play with her. I longed to leave the sea behind, to run after my joyful toddler. But I was rooted to my spot in the sand, and troubled by what I thought I’d seen in the waters. The dream shifted, and I found myself standing in my kitchen. My five children were seated around our table, eating snacks and laughing freely.
“Mama, come!” someone called.
But I couldn’t peel myself away from the window above the sink. In the dream, my line of dusty olive trees was replaced by a swirling sea. Again, I saw people struggling against its violent waters. Torn between beloved babes and struggling strangers, I hesitated before reaching for the latch on the window.
I don’t know what would have come next. I woke to a weird sensation of longing and helplessness. In vivid pictures, the dream expressed the spiritual restlessness I felt during my waking hours. Like I was living between a tension of genuine thankfulness that, once again, all five of my children were healthy and under one roof, and the newfound awareness of what it actually feels like to live through a first-hand traumatic experience.
It has been well over a year since that dream, and nearing a year and a half since Nove fell sick. I’ve spent countless hours wading through lingering questions related to suffering, recovery, and faith that follow trauma. Sometimes, I fear I’ve arrived at a more cynical view of faith in general. But more often, I feel like I’ve drawn closer to—and continue to approach—a more authentic and holistic understanding of the God I thought I knew so well before.
“I feel like I’ve drawn closer to a more holistic understanding of the God I thought I knew so well.”
I’ve recognized that the salve to my soul-suffering began in mourning and tears: fleeting feelings of God’s nearness amidst my audacious grief (even the kind of grief that might communicate irreverence or a lack of propriety), and overtly expressed empathy from my global community. My unanswered prayers for an initial swift and complete healing for Nove forged the possibility of accepting relief in unexpected forms. Despite my initial rejection of it, I’ve reread the Biblical account of Mary and Lazarus over a dozen times in the past year. As time goes by, I feel more and more a sense of completeness at the words “Jesus wept.”
Truthfully, I’ve settled into these two words as the source of God’s answer. This passage is a partial answer to my prayers, an answer permitting me to stay near to pain, to take comfort in knowing that I do not weep alone, to consider suffering as a necessary—even holy—experience of faith.
So far, Nove’s story has continued as well as I could hope: my baby has grown into a toddler, refusing vegetables and fighting bedtimes and pointing bossy fingers at older siblings. And while the comforting end of our medical nightmare has undoubtedly altered the course of my life, it is the middle of her tale—the pain, the questions, the vision of a weeping Jesus in the midst of un-silent nights—that roots an ongoing recovery of faith and informs an expanding vision of hope in spite of a world in pain.