What I Realized When My Daughter Had A Febrile Seizure

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What I Realized When My Daughter Had A Febrile Seizure

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“Looking at you is like eating a piece of candy.”

My blond three-year-old was wearing red and black 80s sunglasses, a butterfly tattoo on her hand, and a knee-length red and white heart dress for Valentine’s Day. Her reaction made me think that I’d come up with my best one-liner yet. I was in the bathroom getting ready for work, but I couldn’t tear my eyes off someone I loved so absolutely deliciously.

We’d already gotten chocolate on the sheets when she hopped into bed that morning with her daddy and me to share gifts and open cards, so the total pleasure of eating luscious candy was fresh on her mind when I said this, and she let out an unusually wild giggle and blush. She really got it. Walking into her school that morning triggered a range of similar reactions from teachers and friends: long, long looks with smiles of pleasure. She had so much spunk that she seemed to glimmer with herself-ness. We put a handmade valentine in each schoolmate’s cubby before sharing a long hug and kiss goodbye.

Later that afternoon, I was downtown when she collapsed on the playground. Her body was consumed with a seizure that lasted a minute, an endless minute as protocols kicked into high gear, her teacher rolled her on her side, an ambulance was called, preschoolers watched on in fright, and my lengthy debate about the office furniture industry as I gathered my things to leave an architecture meeting to come get her was interrupted by a phone call. A ring.

“Excuse me, I have to take this.”

Phone calls that send you into another dimension should make the phone glow red or explode or radiate heat. When the voice was the school director speaking in a deliberately calm tone, I knew I needed to absorb every word. My heart dropped out of my chest at the news. She stated what happened. Asked me to get there. And then this: “She is conscious and breathing.”

Those words are by turns reassuring — and wonderful — and terrible. Is that the best we had? It was. By the time she was being loaded into the ambulance, I was tearfully on the phone with the medics, asking them to wait for me. They couldn’t, of course. None of my thinking was right at the time — I was scattered beyond words. Not being with her was tearing me in half. She was now headed downtown. We got off the Mass Pike and sped back on Storrow to the Boston Children’s Hospital. In the Fenway maze, my poor colleague pulled over while her iPhone froze on the GPS app and I wept. During our final approach, I heard a siren behind us.

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“That’s her,” I said, and I was right. I got out and ran through traffic until I saw her teacher’s red hair as they flung open the doors — and there was my little heart-dress-clad beauty, propped up in a disproportionately huge ambulance bed, eyes open, shocked, looking ahead as they unhooked her from machines and rolled her off.

“Oh, Mom! She’s OK! I always feel so bad for the mom,” said a medic as I touched her pudgy little hand.

“She’s fine, she’s just fine,” said Kathy as I sobbed into her shoulder.

But she wasn’t herself. She was trembling badly. And her eyes looked at everything but didn’t seem to really see anything. They were wide and shocked and pale, somehow. She was looking right through me while the medics registered her. I got close to her, collected myself, and said her name, as softly and sweetly as I could, before saying, “It’s Mama.”

Her eyes seemed to focus. She reached out and pressed her palm to my cheek and held it there and gave me the faintest smile and a look of love I can’t begin to describe or explain or forget. Everyone else saw it too, and her teacher later said that was the moment when she knew this girl would be okay.

For hours afterward, lying in the hospital, my preschooler seemed like a “lite” version of herself. She let out soft little laughs that I’d never heard from her. She didn’t say much and sometimes she described toys to her teachers — who weren’t there. She ate a grape popsicle and then suggested we “go upstairs and pet our cat.” I explained that we weren’t at home. Throughout the activities, she was just a soft, feverish little flower.

Doctors observed her, various cords were attached to her, toys were brought by a volunteer, and I was squeezing in around her on the hospital bed, our stomachs grumbling with hunger, the baby in my belly kicking against his or her imminent sibling. Her dad arriving. I’d subbed out my fitness classes that night since he was lecturing at Harvard Medical School. I was surprised by how little I knew about where he was on campus. No, I didn’t know the professor’s name, subject, or location. I tried to explain to the Harvard police that he’d likely be in a visitor database if they had one. “Uh, we don’t have anything like that; the professors all kind of do their own thing.” Eventually my husband saw my text. “We are at Children’s Hospital. She is OK. Please come ASAP,” it read.

It turned out to be a febrile seizure, a semi-common response in kids to a very rapid rate of increase in temperature, which I decided not to read too much about on the Internet because I’d been clearly instructed that she is okay.

At 9 p.m. that night, she was attempting handstands in the lobby of the hospital. I started to think she might really be okay. And then we held hands during her first cab ride ever as we sped along the river, through the beautiful night city, her looking out the window, singing a song. A silly version of the ABCs. She mixed up the letters deliberately and laughed at her own jokes. She lay down across the seats and told me she was going fast asleep. I couldn’t do anything but touch her and stare at her in relief and amazement and gratitude.

It reminded me of something. The moment she was first born, she lay on my belly and looked right into my eyes, and before I even knew she was a girl, I could see the entire universe in her face. I just saw stars, a galaxy-filled blackness. Spiritually I’m an agnostic, but I knew she came from far away, and she came to me. And I’d been waiting for her for a long time.

In the cab at night, it seemed like the buildings reflected in the river were like galaxies, and our movement home was like flying somewhere we needed to be. She was with me again. I couldn’t sleep that night from the terror of replaying what had happened, but the fact that she was in our house, in our bed, safe, was so precious. So amazing.

In the days before this happened, our family had already gotten an unusual amount of attention. My husband got some big career news and a grant review, and I got a letter published in the New York Times, all while I was making a series of high-level presentations at my company. And meanwhile our little sweetie had blithely gone about her business, being a joyful kid who made valentines and played with trains and interrupted dinner conversation with ideas, jokes, and various complaints about the food.

Now all the other stuff looked small, and she was everything, and she was part of everything all at the same time. She flowed into the world, and could be moved around our little city in an instant, and every building was fragile and strong at the same time, and every child was fragile and strong at the same time.

While she and I waited for a cab that night, playing on the huge musical stairs that help make Children’s Hospital an architectural monument to art and beauty and play, a family nearby engaged in a game with their little tiny cancer patient of a child, and my heart sunk. Sometimes being a mom overwhelms you. You mother all, you lose all, you gain all. A hand on your cheek is everything, when it comes, when it goes.