I committed to a slash-and-burn attack on my life and then I heard God laugh, nearly audibly.
And it sounded like screaming.
On March 19, my two year old daughter, Iris, had a series of febrile seizures. I recognized what was happening because I once heard a story about febrile seizures. The minutes that recognition bought us may have helped save her from permanent damage.
So I'm going to tell you a story about febrile seizures. I'm going to tell you the whole thing and it's going to be long and then I'm going to be done with it.
And I want you to remember it.
March 19 was a Monday. Mondays are busy, full of deadlines and meetings and preparations. I don't have time for distractions on Mondays.
Iris's preschool called me around 2:00pm, roughly an hour before pick-up, to say that Iris had a fever of 102° and could I please pick her up. Iris rarely gets sick, though fevers for a two year old are not uncommon. She's a kid, kids spike fevers over nothing. Over everything. I usually let the fever run and don't give her any medicine until it hits 102°, anyway. This falls neatly under my "Shake it off" parenting style.
I wasn't worried, though I was aggravated. Picking her up early would mean making arrangements for someone else to pick up the boys, as their pick-up was at 2:30 and I wouldn't make it back in time. Was it really that important that they couldn't wait an hour for me to pick her up?
My mother agreed to pick up the boys and I headed for Iris.
When I arrived at 2:15, she was happy enough and ran to me, babbling away. Her teacher said that although Iris didn't seem sick, a red flag was raised when she didn't want to sing in circle. Singing is Iris's thing. All day long.
Were it not for her silence, they wouldn't have taken her temperature. Were it not for her silence, they may have even held off for an hour despite her temperature. But the lack of singing signaled something was wrong. They know her well.
Iris agreed that she felt fine but that, yes, she was sick. It was gleefully "terrible." We love identifying things as "terrible." It's good fun.
We hopped in the car and headed for the boys, picking up a Sprite on the way to help quell the fever. She talked with me about how "terrible" her fever was and laughed along.
I never noticed when she stopped talking.
Five blocks from my parents' house, I noticed Iris start to nod off. Her eyes were drooping and her head was nodding. This was good, she could sleep off the fever.
I pulled up in my parents' driveway at 2:45pm. My mom walked the boys out to the car and leaned at my window while the boys buckled in noisily in the backseat. We had excitedly decided that weekend to plan our very first trip to Disney World and started discussing some of the impending plans while the boys rough-housed with Iris behind me.
I hushed them a few times to leave her alone because she was sick. But they are boys and they adore her, so letting her nap when she was clearly groggy didn't occur to them.
It feels like we shamefully chattered on about our vacation for an immense amount of time because, in hindsight, I now know what was actually happening in the backseat.
The Pre-Seizure Activity
The boys were laughing. It was getting too loud and I was concerned about them aggravating Iris so I told them to hush. In the rearview mirror, I could see them pushing her head back, keeping her from nodding off. They giggled that Iris was drooling.
I turned to snap at them and saw that she was, in fact, drooling. And then, yes, it happened all at once.
Iris was drooling, her head nodding forward, but her eyes were set at an angle toward the ceiling above the passenger seat. She wasn't blinking and her stare was locked.
I called her name. I shouted her name. She didn't blink.
Now I understood the laughing. One of Iris's parlour tricks is staring into the distance and not acknowledging your calling her name or trying to make her laugh for as long as possible. She's remarkably good at this trick, though she will smirk during the game, letting you know you are close to winning. The boys thought she was playing.
I jumped out of the car, climbed into the backseat and started shouting her name and clapping my hands in front of her face. She never blinked or registered my efforts. I checked her limbs, noting that she wasn't stiff or shaking.
The Screaming & Driving & Illegal Bits
My mom was in the yard behind me and suggested we put her in a cold bath immediately to bring the fever down. I was already climbing back into the driver seat, throwing the car in gear. I realized this must be what happens right before a seizure, if she wasn't having a seizure already, and yelled that we were going to the ER as I slammed the car forward and spun into the road.
This entire scene couldn't have taken more than a minute. My mind was racing and pushing forward a story I'd heard a few weeks earlier about the toddler daughter of my husband's law partner having a febrile seizure as the result of a fever.
My mind was flashing "fever" and "seizure" and "time." My mind was screaming, "You don't have much time!"
None of us were thinking, we were moving so fast. My parents say that I was out of the driveway and down the road in seconds. It never occurred to us that my mom should have jumped in the car. I was already gone by the time they realized what was happening.
The hospital was less than ten minutes from my parents' house. They jumped in their own car and were right behind us but apparently only for a couple of minutes. My dad tells me that one second my car was in front of theirs on the road and the next I was simply gone.
I remember that second precisely.
We were on a straightaway and I was shouting Iris's name, leaned forward in my seat with my eyes darting between the road ahead and my rearview mirror. Aware of how terrifying this must be for the boys, I would alternate my shouting at Iris with giving the boys directions in a low tone. "Keep her head back. Tell me if she starts shaking. Is she breathing? Is she blue? We're going to be okay."
Quinn and Grey never cried. They were scared but they followed my every direction. Quinn held her head back and confirmed her breathing. Grey spoke softly to her without ceasing, promising, "Iris, you'll be okay. You'll be okay, Iris." And then occasionally asking if the doctors would have to cut open her throat.
He is five. Quinn is seven. Every hospital scenario they've ever seen on TV must have hit them and they started asking gruesome questions, though calmly, as though they could handle it if I would just prepare them.
I screamed the entire time, save for when I spoke to the boys.
I screamed at Iris. I screamed that she would be okay. I screamed for her to look at me. I screamed for her to stay awake.
Then Quinn told me it would be okay, she was moving her legs. In fact, she was shaking them.
She had gone into convulsions. She started spitting out something that looked like foam. That was the second my car disappeared from the road ahead of my parents.
Flashers on, I pushed the gas pedal to the floor. It's a strange feeling to know you can't go any faster. It's an odd bit of math to weigh the danger in your backseat to the danger under your wheels.
Years of playing Pole Position actually came in handy. I knew how to take one of the sharpest curves in our neighborhood at top speed without flipping the car. If you live in Gulfport, it's that crazy curve on Creosote Road by the concrete factory. The one that is all gravel and blind spots.
I took it at 50mph.
I wondered if we had always been meant to only have her for this brief time. I wondered what the point had been, if this had always been the plan. My mind just went there.
Moments later, a traffic light changed from yellow to red ahead of me at a three-way intersection. My life was measured in seconds. I leaned on the horn and moved into the as-yet empty oncoming lane and drove straight through it.
The boys must have felt like we were in a movie. Their mother driving like a bat out of hell and screaming without pause.
Are you counting the mistakes I was making, so far? It's astonishing.
The hospital is right behind a shopping center that includes several buildings laid out in something of a T-shape with a road breaking through the cross-point and running along the outside. If you take the road through the cross-point, you come out near the hospital. I entered the shopping center at full speed.
Right as I approached the cross-point intersection, I spotted a police car. I recognized the choice: get pulled over for reckless driving as I pass him or pull him over myself.
Other than the part about their being heroes, this is the boys' favorite part of the story. Where their mother pulled over a cop.
I laid on the horn and barrelled in behind the police car, virtually shoving the three cars out of the way that separated the space between us. I'll be damned if the man didn't wave me around. So, good to know, cops will let you around them if you look crazy enough.
I didn't want around him. I wanted him to stop. So I started screaming and waving my arms. Or maybe I never stopped screaming.
Somehow I ended up outside of my car and running toward the police vehicle. He stepped out and I scream/ shouted that my daughter was having a seizure. He informed me that a hospital was nearby and I... didn't hit him.
I wrapped a lasso around my fury and informed him that he would escort us to the hospital. Stopping him had cost me time and he would buy it back for me.
There are four million speed bumps between the entrance of the shopping center and the entrance to the hospital on the other side. Lights and sirens don't flatten them. In case you ever wondered.
That police officer bought back all of the time I lost by stopping him, as he escorted us directly to the ambulance bay doors and punched in a code to let us directly into the ER.
I scooped Iris out of her car seat and started murmuring that she would make it, hold on. She was alternately limp and convulsing lightly. The police officer assured me he would care for the boys.
As I approached the ER nurse's station, Iris started to vomit. It was as though something was slowly squeezing her esophagus, without retching, but rather very slowly squeezing everything out of her like a tube.
The nurse took us to a bed, I laid Iris on her side, and then it started. The real seizure.
It was impossibly horrible. It was terrible.
Her entire little body looked as though a metal pole had been strapped to her spine and electrified. She was jerking and her jaws were locked, her eyes bulging wide open and staring.
I had stopped screaming the moment I stepped into the ambulance bay. I never screamed again. I never cried. I took a deep breath when those doors opened and I was in control. I would not be removed.
Iris was on a gurney, nurses and a doctor surrounding her, fumbling with equipment. I made myself invisible, quietly and calmly answering questions. Never taking my eyes off of Iris's eyes.
If she could see, she would see me.
A nurse said, "Mom, you can get close to her. You can touch her." I gently squeezed between the bodies and crouched in front of her, placing my face in her line of sight and held her hand. I told her she was doing a great job. I told her she was so strong. I told her she would be okay. I loved her. I loved her so much.
Her eyes were impossibly wide. Her jaws were clenched and her body seemed to break itself into pieces, recompose, and then explode again, all tethered to that invisible metal pole. I never stopped murmuring to her.
Then I noticed the commotion. The ER was not equipped for children. They didn't have an oxygen mask that fit. The intubation tray was the wrong size. Everyone seemed to be standing in some kind of sludge that prevented quick movement of body or thought.
If I had made myself invisible up until that point, then that empty space where my body resided began to glow red.
The Not Killing People
I raised my eyes from Iris and looked at the group of medical professionals and intoned in a low and calmly throaty voice, "Other than the fact that you clearly do not have the right equipment, can anyone tell me what is happening?" My intended effect was that everyone in the room would tremble in fear and beg forgiveness. Maybe cry for failing us so miserably.
For every second that I was calm was a second I intended to take off of their lives if I did not see progress.
I tried to make myself glow white with innocence but my eyes surely betrayed me. The next time I looked down, Iris had an oxygen mask on.
(the photos in this post were taken by Al after he arrived at the hospital)
The details here forward are irrelevant and tedious. So much happened in such a small space of time. My parents gained on me when I stopped for the cop, so they were apparently pulling in behind me shortly after I entered the ER. They called Al to come quickly.
Iris was placed on oxygen and I was assured that she was getting enough oxygen to her brain. They attached lines of fluids and medications to stop the convulsions. I pressed my lips to her forehead and prayed without stopping. The seizures, however, did not stop and she did not wake.
No one had any answers. Yes, it was probably febrile seizures. No, they couldn't stop them. No, they didn't know why it was happening.
Al arrived. For the first time since we'd arrived at the ER, I was not alone. Iris had a CT scan. She popped her IV during another seizure. I grew to hate her ER doctor. I blamed no one and everyone and above all else remained calm. I would not be removed.
I did not cry.
When it became clear that the seizures would not stop, the hospital transferred us to a PICU in Mobile, Alabama, at USA Children's and Women's Hospital. I asked Al to ask my parents to go home and pack some things, but through an epic mis-communication everyone ended up leaving.
I left Iris's room to ask Al a question and realized I was alone. It took too long to figure this out, kept me out of her room for too long. I reentered the ER and, from halfway across the department, caught sight of her bed and realized she was having another seizure. She was alone in the room.
I sprinted through the ER and didn't kill a single member of the medical staff along the way.
The version of the story you are witnessing is my own. It differs from what those outside of my head witnessed. To such an extent that upon discharge, a nurse pulled me aside and said something remarkable:
"I've worked in ERs for 20 years. I've seen thousands of desperate mothers watch their babies on these tables. I don't know what profession you are in but I'll tell you this: It is a disservice to the medical profession if you are not in it. You owe it to people to work in medicine. I've never seen someone so composed, going through what you are going through today. It's a gift."
He told me that no matter what happened at the next hospital, no one would ever move fast enough. No one would ever have enough answers. But if I could remain patient, I could trust that they knew what they were doing and were doing their best. I had to trust them.
I told him I was a writer. I would write about this. That was my service. I thanked him, suspecting he told the same thing to every mother that stood next to those gurneys. It bolstered me, nonetheless.
The ambulance crew arrived and loaded Iris into the back and I sat in the cab with the driver. The moment we hit the highway, the driver hit the lights and immediately power to the entire rig was lost. We had to return to the hospital and switch to a different ambulance, a different crew.
Again, I began to wonder if everything was happening for a reason. I kept breathing and let it happen around me. I was separated from Iris by a steel wall, with only a small window through which I could see a portion of the gurney. I felt a million miles away from what was happening.
My parents were already at the hospital by the time we arrived at USA.
USA Children's and Women's Hospital is a well-oiled machine, but one with a personal touch. Does that make it a cyborg? In any case, it was amazing and welcome and everything that we needed. Finally, someone knew what they were doing and could take the guise of control away from my willing hands.
They got to work.
Iris had not regained consciousness since the first seizure ended. Truly, she had not made willful eye contact since the first seizure started. She had simply gone away and stayed away. The first seizure started before 3pm and we arrived at USA after 7:30pm.
She finally woke up in the PICU sometime after 10pm. She didn't quite make eye contact but she was there.
EEGs are not our favorite.
Over the next three days, we tried to figure out what had happened.
The CT scan was clear, an EEG was normal, and a lumbar puncture resulted in nothing indicative of infection such as meningitis or encephalitis. We went home on Wednesday with nothing more than a sharper eye on her and my "Shake it off" parenting style detoured.
Iris's ultimate diagnosis was an Atypical Febrile Seizure. Atypical because of the way she presented before the convulsions (the locked staring) and because the seizures would not stop.
Had she had the single seizure, they would have called it a febrile seizure and sent us home.
So what is a febrile seizure, regardless of whether or not it is atypical? As you know, I'm not a doctor, but the "mom interpretation" is that it is a seizure brought on by a rapidly rising fever, not necessarily due to how high the fever ends up being. It's the brain's reaction to the rapid rise in temperature, most commonly affecting children between ages 6 months to 6 years.
Most people don't realize it's happening until their kid is on the ground convulsing, so the locked staring may only be atypical in that I witnessed it happening. For instance, had the school not called me, Iris would have been on the playground when it happened. Or had I taken her straight home, she would have been alone in bed when it happened.
It could never happen again. Or it could happen every time she has a rapidly rising fever.
The New Normal
So what now? Now we have a fever protocol and keep an anti-seizure gel on hand. If her fever reaches 99.1° we give her Motrin and call the doctor. If it reaches 102° we take her to the ER. If she starts having a seizure, we roll her on her side, call an ambulance, and give her the anti-seizure gel.
Edited to add: Seriously, call an ambulance. My driving? Yeah, don't do that. There's a reason our protocol specifically includes calling an ambulance. I could have killed us and other people.
Until she makes it through a handful of fever spikes with no event, we are on constant watch. It's a different way to parent for us but it is what it is. So far, no sign of seizure has happened since that first day.
Iris is happy. She's healthy. She's perfectly normal. You would never know she went through this. In light of how thoroughly fine she is, it seems distinctly melodramatic to retell the story of those three days.
I am retelling the story because it was a story like this that made me take my daughter directly to the ER at the first sign of seizure. I recognized her drooling and locked staring as pre-seizure activity only because I had heard a story like this.
The single most important decision I made was to ensure she never lost oxygen to her brain. Minutes matter in the cacophony of crisis.
Singing again by Thursday
If you were one of the people that caught this story on Facebook or Instagram or Twitter as it was happening, thank you for your support. It was in that long drive to the out-of-state PICU, as I felt my mind set adrift, that I reached out to my support system to anchor myself back down. I'll write that story another day but the short version is that knowing I was not, in fact, alone in that metal cab made so very much difference. Knowing that my thoughts and prayers and positive energy were multiplied by you and yours made that ambulance move at the speed of thought.
Thank you so much. For being there, for supporting us, and for listening today.
Please share this story with other parents.
Like it on Facebook or tweet it or Pin it or whatever it is you do.
When minutes mattered, it was a story that moved us in the right direction.
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