It was a regular morning when I received the call that would change our lives forever. I had just stepped out of the shower when my husband, Scott, called from the hospital. Our 9-year-old daughter, Nell, had been a patient in the pediatric ICU for four agonizing weeks. Scott had relieved me earlier that day so I could go home, shower, and prepare for a crucial meeting with the doctors about Nell’s condition. When he delivered the devastating news that our daughter was diagnosed with neuromyelitis optica, a rare autoimmune disease that attacks the central nervous system, my heart didn’t just sink—it stopped. In that moment, my mind raced through the prognosis: rare, incurable, potentially fatal. My heart shattered under the weight of that reality.
As steam lingered in the air, I felt the towel wrap around me, my wet hair dripping as I processed the weight of the news. The moment the words left Scott's mouth, my legs gave way, and I slid down the wall, sitting on the cold bathroom tile with the phone pressed to my ear, breath caught in my chest. Scott, trying to find a silver lining, said, "It's good we finally have a diagnosis." After a long, suffocating silence, I whispered, "That’s not a good diagnosis." As a physician, I understood precisely what it entailed: an incurable condition that often leads to blindness, paralysis, and frequent hospitalizations.
Just weeks prior, Nell had awoken with symptoms that escalated alarmingly. Nausea, dizziness, and overwhelming fatigue led us to the emergency room, where her condition quickly deteriorated. A brain MRI revealed multiple large areas of inflammation, and soon her neurological status declined further. Her muscles, including those necessary for swallowing, became paralyzed, leading to aspiration pneumonia. Our brave little girl was admitted to the ICU, where she faced the harrowing reality of right upper extremity paralysis and lower extremity weakness. The contrast between the vibrant memories of Nell joyfully playing lacrosse and the unresponsive child lying in a hospital bed was stark and heart-wrenching.
In the ICU, the joyous sounds of her laughter were replaced by the beeping of machines. I clung to the hope that we would discover a cause, find a treatment, and reclaim our previous life. As a fixer by nature—both as a doctor and a mother—I felt utterly lost. This situation was not a problem to solve; it was a reality that demanded endurance. In that instant, the dreams I had for Nell's future vanished. I was left without a roadmap, grappling with the weight of unspoken expectations that we would somehow “bounce back.” Friends meant well, offering encouragement like, "You’re strong, you’ll bounce back," but to me, these statements felt dismissive. This was not a mere setback; it was devastation.
The question morphed from “How do we bounce back?” to “How do we grow through devastation?” I had to learn to exist in the terrifying space between what once was and what is, all while uncertain about what the future held. Letting go of my instinct to fix things and instead becoming an observer was agonizing. The grief, pain, and fear overwhelmed me as I grappled with my new reality. But as I stopped pressuring myself to return to normalcy and allowed myself to sit in the rubble of my previous life, I began to feel the weight of loss, anger, and vulnerability. This heaviness marked the first step toward healing.
As I navigated this emotional landscape, I began to examine what pieces of our life were worth keeping and what needed to be left behind. Nell's rehabilitation journey was grueling; I watched her take her first shaky steps with a physical therapist, her determination shining through despite her weak legs. I sat in waiting rooms as she expressed her frustration, knowing her friends were back at school, while she struggled just to walk across a room. The ache of what we had lost was profound, yet slowly, something new began to emerge.
While Nell didn’t return to lacrosse, she discovered a passion for art and writing. She found a way to transform her pain into creativity, eventually penning a book aimed at helping other children and teens navigate the challenges of hospitalization and chronic illness. We didn’t revert to our old normal; instead, we constructed a new one, rooted in acceptance, resilience, and hope. We let go of dreams of athletic achievement and the illusion of control, but we preserved our core values: family love, strength, and the belief that even pain can give rise to meaning.
The traumatic experience that I longed to forget has become woven into the fabric of our lives. It fuels our advocacy for rare diseases and shapes our shared mission, instilling a deeper gratitude for each day we have together. When I face challenges now, whether significant or minor, I do not urge myself to bounce back. Instead, I sit in the rubble and allow myself to truly feel the losses. It is from that stillness that true growth begins—not by rushing back to what was but by moving forward into who we are destined to become.
If you find yourself amidst your own rubble—be it a diagnosis, a broken relationship, a lost job, or an unnamed despair—I encourage you to adopt a different perspective. Shift the narrative from “When will I get over this?” to “How is this experience changing me?” or “What is this pain teaching me?” This transformation invites curiosity and opens the door to new possibilities.
Today, Nell walks independently and is back in school full-time, although competitive sports are no longer part of her life. While her disease remains incurable, we are grateful for the few FDA-approved treatments that help manage her condition. Living with the knowledge that the ground beneath us could shift at any moment cultivates a profound appreciation for each day she can attend school, pursue her passions, cook with us, and create new memories.
This journey through trauma has also connected us to the rare disease community, where we witness the extraordinary love that parents pour into their children who are either living with profound disabilities or facing life-threatening conditions. In this community, humanity feels vibrant and fierce, standing in stark contrast to the mainstream. Being part of this journey has filled me with a humility and gratitude deeper than I ever imagined.
