When I look back, what stays with me is the linen dress. I can't explain why, but every time I think of that first October day, more than twenty years ago now, I see myself in that ecru suit. Maybe because wearing it meant I could step back into a role, a sense of self, something almost lost during those four months watching from outside the incubator.
We were out now, and as my tiny daughter could fit into clothes marked size zero, I could slip back into being a mother and a young teacher. The suit was almost a uniform. I needed to dress the part because the shipwreck of the last months had drained something in me, something the classroom—reclaimed just two weeks earlier—had barely begun to revive.
We went together like that, held in the cool natural fabric, into the eye doctor's office. This exam, after the pediatric neurologist's, was meant to answer the doubts that haunted my husband's mind. He was a doctor, after all. I know he stood beside me, yet in my memory he blurs—a watercolor with indistinct edges but a clear voice, the voice that narrated our daughter's story as we began the visit.
She looked lost on the exam chair while he explored her eyes in silence with small instruments. He handed her back to me without speaking and sat behind his desk, removing his glasses.
Some silences scream.
When he spoke, his voice was calm and professional.
"Unfortunately, it's ROP, stage four and five."
An acronym I'd never heard. Completely foreign. Meaningless without explanation. But my husband's face told me the shipwreck wasn't over—a tsunami was dragging the island underwater.
Questions. Answers. Attempts at clarity. Fragile hypotheses. Everything funneling into one word: blindness. I looked up from underwater toward the green light and air, trying to break the surface.
I would find a way to keep us all afloat—my daughter, my husband, her sister, me. That was all I could think as he listed the stages ahead, the confirmations we'd need. I had to swim and surface, grab some air, just enough to endure the next wave and shed the suit. You can't swim in clothes soaked through.
It took me several days to let go of the dress, days of mental chaos that kept pulling me under. Ultrasounds. Hospital stays. Trips chasing hope. Tests and consultations. All of it punctuated by my clumsy strokes and the waves that choked me.
Then my husband and I began to swim in rhythm, drinking less of the salt water, managing to keep our small one's head above the surface. Two years had passed since the tsunami. We were almost learning to live in this underwater world. Who knows—maybe we'd evolve into fish. Sight matters little in water anyway.
Then one winter morning we crashed hard against a rock. No. We would not become fish. There was ground beneath our feet.
It was an unfamiliar place, unnameable, called autistic shutdown, though we didn't know it then.
It was an infinite rock, a cliff face plunging to the sea, where our daughter had retreated behind a wall that reached the sky. A smooth rock face, featureless, seemingly impossible to climb—especially for two castaways with no equipment at all.
The first people we met were theorists of climbing, but they'd never faced a wall like this. Their advice and directions only made us slip and fall, cutting our hands worse. They told us to have "persistence, patience, and faith," but they couldn't hand us a piton or rope to try climbing.
Every day the wall grew higher, smoother.
It was a priest passing through who showed us where, perhaps, we might find a piton. We set out on another journey that led us to guides. The wall had to be scaled, and fast. They gave us the first basics of climbing, some pitons, and a little hope.
It took a couple of years to find a small ledge. Nothing much, but finally a place to rest, and from it a fissure opened—like a wound—in the rock. Maybe this was the way through.
We squeezed into that crack, that tiny point of contact we'd made with our daughter, careful with each step not to dislodge stones, walking in silence to save our breath. The rock face revealed enormous steps now, hidden until we'd entered the crevasse.
The first step was called school.
It was immense and demanded years of climbing. It looked almost familiar but bristled with thorns and sharp stones that tore and bloodied us. Pity. Solitude. Fear. Ignorance. Bureaucracy. These were the rocks that fell on us, blocking the way, slowing our pace. Therapy and rehabilitation were the fragile pitons we drove in to stay upright. And that thin slice of blue sky visible above the chasm—we aimed for that, hauling ourselves up, sliding back on the step.
Soon we encountered the slick terrain of intellectual disability.
It had crept in quietly and now coated the wall. We were climbing a mountain that would defeat anyone, and indeed, those watching from below shook their heads. But that sliver of blue above kept calling us forward. This wasn't a disease in the usual sense, but a complex, barely charted path that could lead far—if we accepted the challenge of looking beyond the rock face, filling our eyes and hearts with that thin slice of sky.
On the sharp step of social connection, we stood still and alone for a long time.
When a small scout troop passed, they took our hands. We turned the corner as if in a fairy tale and glimpsed a meadow. For the first time, the blue was more than a thin line. There was space enough to see a few stars. Tasting level ground, we began to recognize the beauty of this mountain speaking to our hearts with its own music. The meadow was narrow and cramped, but a few flowers softened its austerity, and the opening seemed enchanted.
On the wall of adolescence, we met a guide. She knew these rocks and carried more sophisticated tools to tackle the mountain. She had a passion for these smooth, rough peaks and spent her time studying their routes, exploring new paths. At last she taught us to climb properly and stood beside us when we dared the harder passages the wall demanded. She knew the craft and showed us how to find holds where none seemed to exist. Our hearts grew lighter in her company as we discovered the mountain's beauty, learned its secrets, and learned to savor the sunsets. She urged us forward, sensing the plateau ahead.
When we crested the last rise of adolescence, a pasture opened before us—the pasture of adult life—shrouded in thin mist that blurred into sky. We breathed that sharp air deeply, searching for our guide, but she'd moved on. She left us at the start of a new path, one we'd have to invent as we went, though by now we moved less clumsily and had learned to appreciate some of its views. Behind us, others ventured onto the mountain, breaking its solitude, learning to recognize both its harshness and its beauty.
Now there is a small group that loves this mountain.
Practical, enthusiastic people who care about what matters, dressed in jeans and hiking boots. They arrive here, on the pasture of adult life, taking in this new horizon with their eyes, sometimes stopping to rest on the grass.
On bright days you can hear music among the rocks, and the mountain's friends push ahead to listen better. We like to watch them cross the meadow, and even more to see them pitch their tent for a weekend.
Then, on evenings burning red, we settle on the grass, running our hands through the grass, and in that beauty-filled silence, we dream about this plateau. We imagine who will live here one day. We dream for a while that someone will have the strength and courage to build a small mountain refuge.
