My Daughter Was Diagnosed With Fragile X

On a July morning in Palo Alto, neuroscientist fellows lead my daughter and me to a windowless room with corporate carpet and tabletop computer monitors. The fellows fit us with near infra-red spectroscopy (NIRS) caps, stretching black mesh around our ponytails.

Over and around our skulls, a grid of small nodes connect the wires that will map our neuro-responses to each other. A hunched, bespectacled post-doc works skittishly behind me, tightening the probes to my head. I reach toward my daughter, M, squirming through her own fitting. She keeps her hands in her lap.

A bag of tangrams and a stack of pattern cards sit on the table between us. “Work together. Get through as many as you can,” the fellows say, and dread seizes in my chest.

Puzzles, building, symmetry—even in an ideal environment, these tasks play to my strengths but leave M exasperated and sullen. She glares at the ceiling and slumps further into her seat.

The NIRS caps, the research MRI we started the morning with, and the battery of evaluations and surveys that will fill our afternoon—all are part of a three-year study of girls with Fragile X, a disorder rooted in an X chromosome that mutates to become fragile, broken, cutting off the transmission of certain neuroproteins.

The mutation in my daughter, M’s, X chromosome intensifies all of the ordinary ways that the cells of a child divide her from her mother. It drives her physical, impulsive, contagious excitement—it creates confusion and anxiety in academic and social situations.

The caps constitute a new mother-daughter aspect of the study, added since our last visit in January 2020. They are meant to reveal how girls like M connect and collaborate with the people they are closest to, the ones they trust the most.

The fellows leave us, and I use my softest tone. “What comes first?” I ask, my finger resting on a purple square tile. M writhes and scowls. “The cap is itchy!” she hisses, “I can’t reach!” I push the tiles closer to her, tugging against the wires that tether me in place.

When one of the fellows comes in to transition us to the next task, we have assembled only two patterns. “How’s it going?” he asks, his voice low and cool, deferential. I’m sure I also hear his pity, and glimpse a condescending smile creeping to his lips.

I imagine him and the rest of the team staring at their laptops in the hallway, taking note of neural pathways of attachment that fail to fire, reading the data on the distance between me and my daughter. My cheeks turn pink with shame.

In the delivery room, when I learned I had given birth to a girl, I squeezed M to my chest and whispered: “I wanted a girl so bad.” I imagined whispered conversations at bedtime, feeding her ambition and imagination, plotting and celebrating her indents in the glass ceilings of sports and science.

But each new revelation of M’s diagnosis reframes the plans I made for us. I absorb the weight of conversations we don’t yet have, revise my expectations of us both, and lean into the particular demands created by this chromosome—a calendar filled with specialist appointments, an inbox filled with after-visit summaries.

For our second task, we are to watch a short video, then have a conversation about planning a trip. The fellow directs me to ask questions and allow M to do most of the talking. He leaves, and a monitor fills with a slideshow of National Parks.

“Do you remember visiting any of those?” I ask when the video shuts off.

M’s fingers drum the table. “The Sand Dunes. It was too windy there, and the sand scratched my legs.” I wish she had remembered instead our visit to Saguaro and her love of Arizona’s bright heat.

I check the laminated list of questions left on the table and ask where she dreams of going. I get only silence and “I don’t know”s. Just before the team of fellows files back into the room, M mumbles something about Paris.

“That’s all with the NIRS caps,” the fellows tell us, and M sighs dramatically with relief. She is led away for a round of games that are really tests. I’m ushered to another office to work through a series of surveys.

The last time we were at Stanford, I answered the survey questions, with certainty: “Is your child upbeat?” Often. “Does she worry?” Almost never a problem. Now, I fill in a long line of bubbles in the “Sometimes” column.

Over the past three years, M has begged for a “girls trip” like our last visit to Palo Alto, when we raced from evaluations and imaging and questionnaires to dip our toes in the Pacific at sunset and chase Michelin-starred sausage to San Mateo.

M was not a “typical” child on that trip, but she was close enough that I could pretend we were having the kind of mother-daughter adventure I had craved.

Since then, her iconic joy has become peppered with eruptions of agitation and rage, struggles with simple tasks. All of this we have been told to expect—it is the trickling evidence of the faulty gene she inherited from me.

Watching and responding with patience when she bumps against these limitations and their frustrations has become the currency of my motherhood. It’s become harder and harder to determine the shape our relationship will take—on this trip, each appointment seems to jeer at my failures to provide the mother she needs.

The next day we are free until our late afternoon flight. I thought we could spend the morning on the beach in Half Moon Bay, limp onto our flight coated in salty sea mist.

Instead, M wants to laze around the hotel pool. When I explain that we have to check out, she stomps across the parking lot to our rental car. “I thought this trip would be fun!” Her angry bark is low and breathy. Her fingers curl into rigid claws, and her chin stabs the air forcefully, making the vein in her neck quiver with fury.

“Me, too,” I snap. Familiar tears steel themselves behind my eyes as I wind us into Highway 92’s chilly, foggy hills. When we arrive at the cloud-covered beach, she pounds down the stairs to the cove, whining over her shoulder: “We shouldn’t have even come here!”

My stomach tumbles against the reflex to defend myself from the sucker punch of inadequacy that parenting my daughter so frequently delivers. I suggest she climb the jagged jetty, and she asks me to take her picture as her tension releases and she opens her arms to twirl above the tide.

She agrees to share a steamed milk at a coffee shop in town, and I breathe extra deep to maintain my composure when it drops to the floor in a gift shop.

In a few days, the team at Stanford will email me an image of M’s MRI scan. I will search the pixelated splotches for evidence that she is—that we are—as strong as I envisioned when she was smooshed against me in the hospital.

She will curl against me on the sofa, asking to see the pictures of her brain, begging to scroll through photos we took on the beach—smiling selfies on slick rocks, the gray sky background casting brilliance into our matching blue eyes.

“We should go back to California!” she will say, her discomfort and disappointment and anger forgotten.

In some space between my own neurons, images will flash—new plans for us to pursue, memories for us to make that will supersede that mocking pile of unsolved puzzles and the self-conscious bubbling in of scantrons.

Sandy feet and a quaint coastal Main Street, but also cheap slatted lounge chairs next to a hotel pool where M will dive for rings and come up grinning with sheer, infectious delight.

We will calibrate again, practice our patience as we inch toward a template for our connection that belongs not to the sharp screens and scored studies of science or to the hazy fantasies born in delivery rooms, but to us.

“We will, for sure,” I will answer.

Katie Flanagan has spent twenty years working with domestic and international non-profits in fundraising and strategic planning roles. She currently writes and mothers in Denver, Colorado.

All views expressed in this article are the author’s own.

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