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When the neurologist called, I was standing in the bedroom of a one-story adobe vacation rental in Palm Springs, California. The photos online had done an incredible job of making the place look vintage glam; it supposedly once belonged to an elegant Old Hollywood star.
In person, it was just plain dirty.
Thick, musty curtains blocked out most of the sunlight in our bedroom, adding an overcast feel to what was actually a bright morning. It was one of the last, lingering days of the year. Eden, my blonde, big-headed angel, was seven months old. And I do mean big-headed: Her head was notably large—so large that she was often the target of unhelpful comments from strangers.
“Wow, now there’s a noggin!”
Yep. Thank you for your (highly unsolicited) feedback. For going out of your way to inform me, her actual mother, of my daughter’s obvious physical state.
Eden, who was in the living room with my parents, couldn’t yet roll over from her back to her front or sit up on her own. She wore a thick cotton-candy-pink helmet most of her waking hours to correct the flattening of her head (technically known as positional plagiocephaly), which was a result of her limited mobility and subsequent difficulty changing positions.
Our girl may not have been meeting milestones, but with her cool blue-gray eyes and wide, toothless grin, she really rocked that helmet.
I called it her roller-girl look.
I recognized the number on the phone and picked up with a chirpy hello. I had liked this warm and cheerful neurologist when we’d first met a few weeks earlier.
But the voice on the phone spoke in a soft, delicate tone very different from the one in our last conversation.
“I have your daughter’s test results,” he said. I looked at Cedar. My tenderhearted husband was rummaging for something in his suitcase with a focused look on his face, skin glowing from a full week of vacation. I put the call on speaker and sat down on the twisted sheets of the unmade bed.
At Eden’s pediatrician’s recommendation, we had—just in case—sought out genetic testing. Something had been off since Eden was just a few weeks old, when she would choke and sputter and pull off my breast in the middle of nursing. Then she would jolt awake repeatedly, sometimes every 15 minutes, all through the night. She was only able to consume small amounts of milk.
Still, nobody expected anything big. I swore off dairy, hoping Eden’s feeding difficulties had something to do with my commitment to cheese. I tried various breast pumps to slow the flow of milk, along with more than a handful of hypoallergenic formulas, bottles, levels, shapes of nipples, burping techniques, and time intervals between feeds. None of these changes made a difference, at least for Eden’s well-being. She was bony, born under six pounds, and still in the first percentile for weight.
All of this meant she was earning the most ominous of labels: failure to thrive.
“Failure” probably should not be used to describe anybody under the age of one.
Or anyone over the age of one, for that matter.
And so, I wondered if the real failure was me at 36 years old. After all, I was the mother. Wasn’t I responsible for keeping her safe and well?
On the phone, the neurologist’s voice was stiff and minimal. “Your daughter has a substantial genetic deletion. It’s very rare.”
“What does that mean?” I asked. I stood up and started to pace, the tiles cold beneath my bare feet.
I stared at the thick burgundy brocade bedspread.
“I’m sorry. I don’t know enough to tell you very much about it. You can schedule an appointment with a geneticist to learn more.”
“We’re gone, out of town right now, visiting family. We aren’t even in Minnesota. I can’t imagine waiting weeks, wondering what this means. Do you know how much it will affect Eden? Will she be . . . like, compromised?” My voice started to crack and then came a rush of tears. I didn’t try to push them away. Cedar had stopped rummaging through his bag, and I felt his hand on my back, steadying me. There was a pause on the phone and a breath.
The doctor responded softly, “I can’t tell you exactly what it means, but she’s missing DNA. A sizable amount. I wasn’t expecting this. It’s likely going to have a strong impact on her development.”
His speech was thick with caution, as if he was greeting us at a shiva. As if he didn’t want to overstep. As if he was acutely aware that this phone call would be something I would remember for the rest of my life.
I understood what he was saying, in his not saying it.
“What do you mean?” I asked. “Will she be developmentally delayed?” I knew enough to understand that DNA is the essential foundation for functioning.
“That appears to be the most likely outcome. I’m sorry, I really am. I wish I could give you more information.”
I winced. I could tell that he was sincerely sorry.
I didn’t want anyone to be sorry about my one luminous daughter.
Excerpted from The Unlikely Village of Eden: A Memoir by Emma Nadler (Central Recovery Press). Copyright © 2023 Emma Nadler. All rights reserved.
