When did I know something was wrong? People ask me this a lot. Depending on my mood, I answer one of two ways.

“I had a hunch from the start,” I might say. “I always thought her ear looked funny. It was mottled and kind of squished. And the sounds she made were guttural. Aren’t babies supposed to coo?” 

Other times, I might say, “We were shocked. We lived in ignorant bliss for nearly five years, completely mesmerized by our perfect little girl.”

Both answers are true.

Our lives back then were fabulously chaotic, just like any family with two working parents and three kids under age seven. Desperate for time alone, one weekend my husband, Rob and I hired a babysitter and drove an hour-and-a half to Newport, Rhode Island. We would have been just as excited to be going to the Motel 6 across town. A weekend away meant we’d be able to talk, eat, and sleep together without little hands and big voices popping up between us. 

Four hours in, my friend Lara called to check in. “We’re having the best time,” I told her. “The weather’s perfect, and the hotel is fantastic. Even if it ended now, it will have been the best vacation ever.” 

Tempting the fates never worked out well for me. 

Our vacation lasted seven hours. Seven glorious, uninterrupted, sunshiny hours. 

We settled into our chaises by the pool. “Is it too early to have a gin and tonic?” I asked. “We’re on vacation. We can do whatever we want,” Rob said, summoning the bartender. But before the drink arrived, mid-sunscreen shmearing, my phone rang. 

“Hi, it’s Nicole,” our 4-year-old’s teacher said. “Dalia fell and hit her head on the corner of a table. She has a huge gash near her eye. We called an ambulance and we’re on our way to the hospital.”

I broke into a cold sweat as I watched the heat waves shimmering up off the patio around the pool. I started throwing my stuff into my beach bag.

“There’s a lot of blood. I’m so sorry … I just turned my head for a second,” Nicole said.

I put the phone on speaker, and Rob and I listened together as we hurried back to our room to grab our things.

“How’s she doing?” he asked.

“She’s being Dalia. The whole time we were waiting for the ambulance she kept patting my hand and saying, ‘My okay. Don’t worry.’”   

Getting phone calls that Dalia had fallen was nothing new, but this was the first time a fall landed her in the hospital. As Rob ran to get the car, I wondered, for the hundredth-or-so time, whether I was massively failing at my primary maternal job of keeping my daughter safe.

At first, she met the standard milestones … rolling over, crawling, pulling up. But her toddling never matured into an assured gait. Instead she wobbled, as if tipsy, leaning on the wall to help steady herself. And her speech was garbled. She focused so intensely when she spoke. She looked like the effort thoroughly exhausted her, her tongue using every one of its eight muscles to propel the words out of her mouth.

But the doctor said to give her more time. The team at Early Intervention said she didn’t qualify for services. I convinced them to evaluate her three times, but their verdict never changed. “She’s on the lower end of average, but she’s within the normal range,” they said, and I felt bad that I secretly hoped my daughter would rate below average and get help. I wondered if I was overreacting, if my expectations were too high. The worry gnawed at me.

Rob and I were quiet for the beginning of the car ride. 

Finally I broke our silence. “What if she loses her eye?”

“Nicole would have told us if it was that bad,” Rob said.

“You’re right,” I said, trying to mimic the deep breathing that made my yoga teacher look so relaxed.

A bit later it was Rob’s turn. 

“Why haven’t we heard from Nicole? Let’s call her again.”

Rob and I had settled into the delicate dance that most parents know well. One worries and the other reassures; trade places, bow to your partner. We each knew when to advance and when to retreat. If we twirled together in the worry and fear, we would collapse. 

But in my head, I could panic as loud as I wanted. It cannot be normal to fall as often as Dalia does. How many falls is it going to take for somebody to figure out what’s going on? 

Rob pulled up to the hospital emergency room to drop me off. I opened the door before he stopped the car and ran inside. There was no line at the information desk, which was a good thing, because I would have knocked over anything that stood between me and my child. 

“I’m looking for my daughter, Dalia Flaggert.” 

“Sure thing; let me see here,” the receptionist said, tapping on her keyboard. 

“Suze, I’m going to Dunkin’ Donuts. Can I get you anything?” interrupted the valet guy at the desk nearby. 

“Thanks doll, I’ll have a Grande blonde roast with caramel drizzle and a splash of almond milk. Wait a second, let me get some money for you,” she said, reaching for her purse.

Patience was not my strong suit under the best of circumstances, which these clearly weren’t. 

“Um, excuse me Suze,” I cut in. “I really need to find my daughter.”

“Oh, sorry, honey,” she said, turning back to her computer. “She’s down the hall behind me in the third room on the right.” 

Rob came in just then. “Why are you still here? Where’s Dalia?”

“Coffee,” I said, taking his hand and heading down the hall. “Don’t ask.”

Dalia lay on a hospital bed cuddled next to her teacher. There was a huge piece of gauze taped over one of her eyes, but when she saw us her other eye lit up. 

“Hi Daddy. Hi Mama. My fell down,” she said with a frown. She held out her arms for a hug, and I felt like my heart was breaking and overflowing at the same time. 

Later that night, after we clasped Dalia’s hands while her eyelid was stitched up and held an ice pack on the egg-sized bump on her forehead and explained to the boys why we were home two days early; after we told the babysitter she didn’t need to stay but yes of course we’d pay her anyway and I crawled into bed, Rob brought me my gin and tonic. 

“We’ll go back to that hotel someday,” he said. “It may not be for 10 years, but we’ll go back.” 

“Okay, but in the meantime, what are we going to do about Dalia?” I asked, partly rhetorically and partly looking for the reassurance Rob was so good at.

“We’re going to figure it out,” he said. Because I wanted to believe him, and because I was exhausted, and because there was nothing more that could be done at that point in the night, I agreed. 

Excerpt from Breath Taking: A Memoir of Family, Dreams, and Broken Genes, Behrman House (May 7, 2024)


  • Jessica Fein is the author of Breath Taking: A Memoir of Family, Dreams, and Broken Genes. She's also the host of the "I Don't Know How You Do It” podcast, which features people whose lives seem unimaginable and who triumph over seemingly impossible challenges. Jessica is a seasoned media contributor, with forums including Newsweek, Psychology Today, The Boston Globe, HuffPost, and more. She’s a relentless warrior in the memory of her dynamic daughter whom she lost to rare disease in 2022. Her work encompasses hope and humor, grit and grace -- the tools that make up her personal survival kit. She’s the mother of three, whom she and her husband adopted from Guatemala. To learn more visit www.jessicafeinstories.com.