When Luke yelled my name that night, it was in that voice that wasn’t quite a yell because only a psychopath would fully vocalize in a house full of sleeping children. It had all the intensity, though, with the gravity of an official summons. I got up quickly, but with some judgement. I had been cleaning up vomit, washing sheets, and caring for the ones who necessitated these chores all day long. I would have bet real money that Luke was summoning me to the classic parenting Sophie’s Choice: “Do you want to strip the sheets off the bed or bathe the kid?” What I saw when I walked into the bathroom was my robe-clad husband sitting on the edge of the tub, holding Madeline, our brown-eyed four-year-old. I can’t remember what he said – I think it was a half sentence like, “She’s not…” or “I can’t.” And indeed, she was not and I could not.
She couldn’t hear me and I couldn’t reach her. She could not stop her eyes from rolling back and forth, her jaw from clenching, her lips from forming rapid sounds. I couldn’t protect her small tongue from her vice-like bite, any more than I could stop myself trying. The saliva in her mouth tinged with blood, my fingernail turning black for my ill-conceived effort.
“She’s having a seizure,” I said with relative calm, because seizures are at least a label that doesn’t require an exorcist in our modern day and the name took away some of the fear. Madeline had had a fever all day and the term “febrile seizure” was like cold tap water on a steam burn. What did I know about febrile seizures? There was a frantic librarian in my brain, opening all the tiny drawers in my card catalogue containing any references to this term. They don’t last long, I think. They are scary in the moment…something about kids growing out of them? As the cards came spilling out of my mental catalogue, Madeline’s face turned the color of fog and I realized none of this mattered and told Luke to call 911. That whole interlude probably lasted 30 seconds, but it haunted me as 30 seconds became a minute, then five, and all my internal reassurances grew hoarse and fell silent. In its place, a sobbing panic.
I placed Madeline on our bed, stripped of sheets because of the laundry backlog of a bona fide sick day. She sounded like a broken machine, doing everything with a jerking rhythm. Her breaths were deep, saliva drenched bursts, her lips contorting, spewing pseudowords and aphonics with a rapidity that reminded me of a Pentecostal in the grips of glossolalia. If it was disturbing to witness in a chapel, it was a downright horror movie to watch coming from my soft-spoken baby girl. Her beautiful deep brown irises were completely swallowed by her dilated pupils, the whites turning red with the strain of her at once limp but tight and spastic body, like a dissection frog hooked up to electricity. Zap. Her hand clenching. Zap. Her teeth snapping. Zap. She has wet her pajamas. Controlled by the malevolent puppet master of neurons, drunk with power, sending another jolt. Another. Another.
I knew she couldn’t hear me, just as I knew she would bite my finger, potentially clean off, if I put it in her mouth. However, 12 years of standing between my children and all comers, foreign and domestic, overrode any logic and I said her name every way there is to say a name.
Beseechingly? “Madeline?”
With command and authority “Madeline.”
Cajolingly? “Come on, Madeline!”
I offered her anything I could think of, “Do you want to watch Bluey and snort pixie sticks?” and promised anything God might be inclined to want from me. I thought of all the Berenstain Bears books I had artfully dodged reading to her and threw that into my prayer, though I doubt He blamed me for my weakness in this regard.
I carried Madeline downstairs, placed her on the couch on her side and gingerly attempted to change her wet pajamas as the ambulance backed into our driveway in what seemed to be a very unhurried fashion. As they came in, she quieted. I wanted desperately to see her gaze fix on me, but her eyelids shut with finality and she was loaded onto a stretcher. The relief I thought I would feel at the seizure ebbing and cavalry arriving felt instead like transference of anxiety. We were now entering “The System” when all I wanted to do was take her back inside and cry into her hair and revel in the stillness of her body and peace of her breathing.
When we arrived at the hospital, I was struck, as I always am, at the entire concept of this 24/7 palliative factory, the oddest mix of panic and monotony, a binary drawn by those in scrubs getting paid to be here, and those of us vacillating between gratitude such a place exists and dreading the day we get the bill. It defies belief that the nurse taking Madeline’s vitals was here two hours ago as I was folding laundry and packing lunches. I could never have predicted the trajectory that would bring us together, but my worst night is her barely-worth-mentioning work anecdote.
As we wait, I keep expecting all of us to say the magic words in unison, ready, 1, 2, 3, “Febrile seizure!” and echo all the things that were written on those cards in my brain. I visualize the next steps where they tell me its good I came in and I am willing to accept that they might be lying, and judging me for being so extra and groundlessly calling an ambulance. Maybe so. Madeline was sleeping soundly, I was coming down off of an adrenaline rush, and I had engagements back home with some long-winded children’s books.
Fine, fine, I would jump through the hoops of CT scans, blood analysis, and even force my “didn’t even wake up during a rectal temperature check” level of tired toddler to pee in a cup – a feat that took hours and required IV fluids and 2 foil capped cups of apple juice to produce a specimen.
My Madeline was a bundle of barely conscious contradictions. She didn’t stir when a needle was placed in her pale arm, but the seemingly benign pulse oximeter would summon all her wrath and aversion, bringing nurses back again and again. Watching her reenter her own consciousness and sentience was like watching Frankenstein’s monster come to life, complete with the resentment of being reanimated.
It was a challenge to revel in each new skill set returning as my brain illogically wondered, “What if this is all I get?” At one point, she was communicating in inflections only. A grunt and a whine as she tried to remove her ID bracelet, a coo and sigh as a nurse wrapped her in a blanket fresh from the warmer. I wasn’t getting anywhere with my questions, so I attempted to appeal to her baser nature and stuck out my tongue. She stuck out hers. I had a foothold and I rallied.
All those tests found nothing, and I was so sure that the morning would mean freedom from this florescent cage that I arranged a ride for us and packed up our meager belongings. A kind, petite doctor of Indian descent, her complexion still somehow dewy and golden in the harsh light, tried to help me step out of the world I was so determined to occupy. “Even if the seizure was febrile, it was abnormal. If you leave now, we won’t get answers and it may not be in her best interest.” She wasn’t following the script and I was too tired to improvise. In fact, to say I was tired at this point was like saying I was unhappy to see my daughter convulsing on my bed – I was like a woman hollowed. I stared at the doctor and felt my consciousness trying to get its clumsy hands on her words and deliver them to my frontal lobe for closer inspection, but it was no use. She left and I wedged into the glorified pallet on stilts that was the triage bed. I pulled Madeline in and slept.
Later I would be made to understand that she felt the best course of action would be to transfer to a children’s hospital in Washington DC and take another test – one that was reserved for freaks and aliens with wires glued to one’s head and lines wobbling on a screen. This meant a long day (“Probably 8-10 hours,” she said, realistically) sitting in the tiny non-room waiting for the incredible honor of being loaded into another ambulance, registering at a new facility, further and further from our home and all our comforts. It felt like Madeline was being punished for having a crap brain, and I was complicit. All of this made so much worse by the fact that I wasn’t just agreeing to it – I was agreeing that she would do it. She was the one who needed to keep that IV in her arm indefinitely, who didn’t even remember (thankfully) anything that led us here and who was asking to go home every few minutes with all her four-year-old “are we there yet?” energy.
Our course was set and I was determined to make the most of it – we broke out of our room and explored the little play area, replete with books and a few toys. We ate food that Luke brought us, and reveled in the joy of seeing Ruby and Davey as visitors during our incarceration. I briefly thought, “Well, it could be worse,” as I watched Davey pull out cords, sneak out the door, lick multiple questionable surfaces, and then demand to go home within 10 minutes. I at least had a pretty good cellmate in Madeline.
The time came, we were whisked away to DC, and were immediately settled into our room. Madeline’s date with the EEG commenced, and I grimaced as I watched a woman put globs of creamy Vaseline-like putty, then pats of glue on to each electrode and stick them to her forehead and all the way across her scalp, coating her glossy, thin hair. Two hours later, as we both slept, they were removed and someone much smarter than me looked at the series of peaks and valleys on a computer screen and deduced that a “slowing” in one part of her brain may have caused all this. A bug in the system, a glitch in the programming. When you get into the minutia, it never seems a shock – only shocking that it doesn’t happen all the time. Electricity misdirected or misfired results in uncontrollable jolts coming from your own brain. It would be fascinating if it wasn’t so horrible.
What followed – a consultation with a neurologist and a prescription for emergency medicine – seemed to happen so quickly after the hours of waiting and wondering. Our room afforded us a perfect view of the Potomac, a lovely cathedral on the other side, and a little sliver of the Washington Monument a few blocks down. When Madeline woke up, she was in absolutely no mood to give humor to me or our surroundings, and patently refused to answer questions or be placated. On a whim, I grabbed her, bedding and all, and sat her up on the wide windowsill in my lap. It was transformative – she was dazzled by the view and we were like tourists looking at a historic city from above.
While she dozed off, I completed my homework assignment while Luke braved the infamous DMV traffic to rescue us. My part was only slightly less harrowing as I had to watch a video made in the 1980’s about the benefits and proper administration of Diastat AcuDial Rectal Gel, and waited with horror and anticipation for how the demonstration would be portrayed. Watching a terribly rendered 3-D male essentially sodomize an unconscious woman with a plastic syringe was about what I expected, but still somehow left me feeling like I had seen too much and not enough. Hopefully they will never have to be used, but I would like to go on the record to state that if such medication is required to stop a convulsion that I myself may be experiencing, unless I am at home and wearing a skirt, let the seizure take me.
We got home and all felt right and wrong in the way that it does when you can’t quite breathe the same way anymore. It wasn’t until a few days later that Luke and I finally talked about it all – what he walked into, what I was afraid of in that hospital room, and who we would need to be to keep her safe and keep our sanity. For now, we wait for more information that will come from an MRI and follow up appointments, but I am eternally grateful for our boring now.
