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Chapter 1: Maggie's Diagnosis


(Excerpt from Magnolia in November)


If you’re looking for a feel-good coming to Jesus book that has a tidied-up resolution at the end with a proverb or two about faith or perseverance, this isn’t it. It’s also not a “why us?” Job sob-fest about the unlikeliness and injustice of our plight. This book ends abruptly with no real resolution because as of now, I don’t know what the future holds. I do know that God knows, but unless He chooses to bestow His reasons for why, the reasons are moot. I’ve grappled with my theories and explanations, wrestled in anger and fury with God like Jacob in my mind. At least I did. I don’t anymore. Perhaps I’ve finally reached the state of acceptance, although it’s difficult to admit how utterly powerless I am to protect my daughter from her medical condition.


My oldest daughter, Maggie, was diagnosed with an extremely rare and serious condition called Lennox-Gastaut Syndrome. I had never heard of it before her diagnosis. The short explanation is that it’s a medication-resistant seizure condition that causes frequent and debilitating seizures, developmental delays, and abnormal EEG brain scans. Between seizures, her EEGs show slow spike and wave (SSW) and generalized paroxysmal fast activity (GPFA), which contributes to her seizure activity, developmental delays, and behavior problems. For years, our goal was seizure elimination. I’ve lost count of the medications we have tried and failed, plus the ketogenic diet. There have been periods where we’ve had seizure-free days, but those are few and far between, usually followed by cluster seizure episodes and, during the worst of them, emergency hospitalizations. We’ve stopped striving for the elusive goal of being “seizure-free.” Instead, we strive for quality of life and the predictability of managing her almost clockwork witching hours when she has her daily bursts of seizures. The regimen of pharmaceuticals that accompany breakfast and dinner keeps her at baseline, which today means between ten to twenty seizures more or less over the course of a typical day. Before her diagnosis and medications, she’d have about ten seizures over a typical hour. We’re at the stage where our next treatment considerations will likely be surgical, but even with that course of action, our options are limited. When Maggie has seizures, her entire brain lights up like a Christmas tree.


As far as her prognosis is concerned, if she survives to adulthood, she will likely require lifelong care and it is highly unlikely that she will ever be independent. She’s more susceptible to injuries from seizures, sometimes holds her breath involuntarily during seizures, and is at an increased risk of Sudden Unexpected Death in Epilepsy (SUDEP).


Over the years, there have been so many nurses, doctors, and assorted medical specialists, most of them blur in my mind into a parade of masks and scrubs.


#


For the privacy of the medical professionals we’ve consulted over the years and their respective institutions, I refer to them by letter rather than their full names.


“How’s Maggie doing?” Dr. A was Maggie’s first pediatrician. It was our six-month well-visit appointment.


“She seems to be extra fussy, I’m not sure,” I replied.


“Let’s check her out.” I hold Maggie while Doctor A gently examined Maggie all over her body. Maggie recoiled at any touch near her ears. “Okay, yeah. It looks like another ear infection.”


“It seems like she just has them back to back. It cleared up then came back,” I said. “Is that unusual?”


“Not really. Babies’ ears have shorter ear tubes so they’re more easily prone to infection. Some kids get them often. We’ll revisit at her nine-month well visit whether she needs a consult with an Ears-Nose-Throat specialist,” she said.


I don’t remember exactly how many ear infections she had at this point. It wasn’t enough to warrant ear tubes, yet, but it was enough to have that under consideration in the future. Sure enough, Maggie continued to have frequent ear infections and by our nine-month well-visit appointment, we received a referral to a pediatric ENT specialist.


“Good afternoon, my name is Dr. B. How’s Maggie doing?”


“She seems to be extra fussy, I’m not sure. We’ve had [I don’t remember the exact number of] ear infections so far and I notice that she’s not as verbal as other kids at daycare,” I replied.


“I think it’s too early to worry about her talking, but let’s see what going on with her ears,” Dr. B replied. “Can you please give her a bear hug and hold her arms so I can see what’s going on inside her ears?”


I wrapped my arms around Maggie’s body, gripping her hands. She nuzzled into my chest, clearly uncertain of this unfamiliar man in a mask and white lab coat. “It’s okay, Maggie,” I whispered. Then Maggie tried to flail around while the doctor tried to look in her ears. He couldn’t. I wrapped my legs over hers to keep her from kicking. In the end, his wife who handled billing, and a nurse came in to help restrain Maggie. His examination confirmed, yes, she would be a candidate for ear tubes.

“That should stop the ear infections,” Dr. B said.

“What if it doesn’t?” I asked.


“Well, the ear tubes will naturally fall out when they’ve served their purpose. Sometimes, kids will need a second set of tubes, but that’s pretty rare. Usually one does the trick.”


We scheduled Maggie’s first ear tube procedure. It was an outpatient procedure. Andy and I drove to the outpatient facility before dawn. I remember dressing Maggie in a dinosaur-print hospital gown. I remember Maggie, then I, frantically searching for her pacifier. It slipped from her mouth and slipped between the bedding and sheets. I remember whispering the lyrics to “Your Song” in her ear. I remember holding her tight until the nurses came with a gas mask to sedate her.


“It’ll be okay,” the nurse said. “She’ll fall asleep and we’ll let you know when she’ll be ready for you.”


What I remember the most was the waiting room. There were three even rows of back-to-back chairs with more facing in from the perimeter of the room. There were no windows in this room and it was illuminated by the tubes of fluorescent lighting overhead. There were clear partitions between the registration and financial desks for medical privacy. Each of those booths had two chairs. This outpatient facility had numerous types of procedures administered to all ages. I watched the people waiting and observed what they did while they waited. Examining the chairs, I could see the well-worn dips on the seats from those most popular chairs. It seemed, based on obvious wear and tear, that the chairs closest to the doors to the procedures and those furthest away were most frequently sat in. I could also see scratches from the armrest, probably from people drumming their fingernails or deliberately chipping the coating from boredom and nervous anxiety for their loved ones. A television on mute was on in the corner. It was an old-fashioned boxy TV hanging from the ceiling like those that you’d find in classrooms in the late 1980s. I don’t remember what was on, but it was probably a cooking, sports, or home remodeling show. Generally speaking, most waiting rooms would have something distracting and non-controversial on the television if there was one. I watched others mill over to the coffee station and brew themselves single servings of coffee from a Keurig machine or use the water cooler machine to refill their cups with hot or cold water. I saw people anxiously thumb through outdated copies of print magazines and the selection available either about fashion, home decor, or sports. I mostly watched people sink into their chairs of choice and scroll their phones with a cup of coffee balanced between their knees. Sometimes, I’d see people wearing headphones. Typically, most people sat as far from one another as they could and only spoke in whispers to whomever they brought. People sat in nervous anticipation for whatever reason they came and conversations with strangers were tacitly discouraged.


Eventually, Doctor B came out in scrubs. “You can see her now. She did great. She’s just now coming out of anesthesia.”


The recovery room looked like the first room. I held Maggie in the hospital bed as she squeezed me. Nurses checked her vitals and hovered around, occasionally asking questions or reaching around Maggie to remove IVs or whatever else she had on.


Eventually, we were discharged.


We continued with our well-visit follow-ups with Maggie’s pediatrician. We continued our ENT follow-ups. I would make appointments with her doctor and ask, “Why is there a gross smell coming out of her ear? Does she have another ear infection?”


The answer was no, she doesn’t. The ear tubes were supposed to drain so that just meant they were working until they weren’t. Either they fell out or got clogged, I’m not sure, but a few months later, Maggie was back to having frequent ear infections.


“Does this mean she needs another set of tubes?”


“Well, yes. It looks like she does. I think this time, we should remove her adenoids, too.”


“Okay.”


We scheduled Maggie’s second ear tube procedure. It was at the same outpatient medical facility. In a daze of de-ja-vous, I remember the dinosaur print hospital gown, the missing pacifier, the “Your Song” encores in her ear, and holding Maggie so tight until the nurses came to sedate her.


“It’ll be okay,” the nurse said.


What I remember the most, the first of many Groundhog Day reruns, was the waiting room: back-to-back chairs, fluorescent lighting overhead, people waiting, well-worn dips on the seats, an old-fashioned boxy TV hanging from the ceiling, single servings of coffee, and outdated print magazines. I mostly watched people sink into their chairs of choice and scroll their phones with a cup of coffee balanced between their knees. Nervous anticipation.


Eventually, Doctor B came out in scrubs. “You can see her now. She did great. She’s just now coming out of anesthesia.”


The recovery room was the same. I held Maggie in the hospital bed as she squeezed me. Nurses checked her vitals and hovered around, occasionally asking questions or reaching around Maggie to remove IVs or whatever else she had on.


Eventually, we were discharged.


“She’s still not talking or walking? Should we be concerned?” I asked Dr. A.


“Developmental delays aren’t unusual with kids who have had frequent ear infections. It impacts hearing and if children aren’t hearing correctly, then it’s difficult for them to develop speech. Ears also impact balance, so that could be an explanation for not walking yet. I’ll write a referral to ECI (Early Childhood Intervention) for an evaluation,” Dr. A said.


The initial consult with the ECI Case Manager C and Speech Language Pathologist D took place at home.


I don’t remember the exact questions, but I do remember my answers. C and D alternated asking the questions to an extraordinarily long questionnaire and the answer choices were Always, Sometimes, Rarely, or Never.


“Does Maggie ever do [fill-in-the-blank]?” C asked.


“No, never,” I replied.


“Has she ever [fill-in-the-blank]?” D asked.


“Um, maybe. I mean rarely, I think,” I replied.


Eventually, the test was over. In every category, Maggie was failing to meet minimal developmental skills for her age.


“Yes, Maggie qualifies for services,” C said.


We worked out the logistics of receiving services. Maggie’s daycare confirmed that they would be able to accommodate the space and time for Maggie’s services on-site while Andy and I were at work. We scheduled periodic phone conferences and in-person meetings to review Maggie’s progress notes and goals. Maggie started receiving speech therapy and occupational therapy twice a week.


I forget the frequency of parent progress meetings, but they always seemed the same.


“Has Maggie ever done [fill-in-the-blank]?” C asked.


“Um, maybe. I mean rarely, I think,” I replied.


“Has she started [fill-in-the-blank]?” D asked.


“No, never,” I replied.


Eventually, the test was over. In every category, Maggie would fail to meet minimal developmental skills for her age. There would be growth, but so minute and incremental, it would only be noticeable to relatives who visited infrequently. Progress would seem imperceptible to those who were with her day in and day out. Despite the frustration and lack of progress, we kept up with our at-home therapies. Her therapists met with her twice a week for her sessions. We trucked on.


“I think she’s peeing,” I told Andy. “See how she’s raising her arms and looking surprised?”

“Yes. Is she wet?” He asked.


“Yes.”


We started potty training. At intervals prescribed by whatever potty training book I was reading at the time, we would diligently sit Maggie on her potty. She did not want to sit. She wanted to run around and climb and move. Occasionally, rarely, she would pee in the potty, but that happened infrequently. Instead, she would sway side to side or stamp her feet or kick the potty until my phone timer would go off.


“She cannot be peeing that much,” I said to Andy.


“Maybe she has a urinary tract infection,” Dr. A suggested. “Since she’s still in diapers, we would need a catheter to get a sterile urine sample.”


I held Maggie’s arms overhead while nurses surrounded her. I stared into her eyes and whispered “Our Song” into her ears. One of the nurses removed her pants and her diaper. Another butterflied her knees and pressed them down while yet another nurse set up the pediatric catheter kit. I stroked her hair and kissed her face. Her eyes, her face, seemed confused. I held her. The wail of pain, the cry that sounded more animalistic in its keen, the expression of horrified betrayal, reverberated through the halls of the pediatrician’s office, echoed across Rockwall, Garland, Dallas, the entire state of Texas, and bellowed inside my chest. I whispered lyrics into her ears as I cried. I cried for her pain, for her confusion, for the betrayal she must have felt towards me for letting the nurses do this. I cried for her pain and my guilt.

When the results came in, I got a call from Doctor A’s office.


“Negative. No UTI.”


Maggie’s arms would flay up again, then again. Her eyes would roll backward. She stopped looking surprised. Her face began to take on an expression of absolute terror.


“There’s something wrong. Something serious,” I said to Dr. A. I described Maggie’s arms going up, stiffening, her eyes rolling back.


“It’s hard to say. Could you video it next time it happens? In the meanwhile, here’s a referral to a pediatric neurologist.”


I kept my phone next to me at all times, ready to hit record. It seemed to happen all the time, yet I couldn’t capture it. I eventually did, but it had already started. These episodes happened more frequently for longer durations. Her fear whenever it would happen was undeniable.


“What do you mean you don’t have any appointments available for six months?” I shrieked. “There is something seriously wrong with her!”


“I apologize, Ma’am. Our next available appointment for a new patient is in six months,” said Neuro Scheduling Receptionist E. Her tone was flat and unruffled.

I begrudgingly scheduled the appointment for six months and proceeded to call other neurology offices. Most were not taking new patients or did not treat pediatric patients.


“Our soonest appointment for a new patient is in three months,” said Neuro Scheduling Receptionist F.


I begrudgingly scheduled our first Neurologist, Dr. G. Three months felt like an eternity. I called around, but in the end, Dr. G was our soonest option and I took it.


In the meanwhile, I juggled my appointments. I was pregnant with my second daughter and as I felt my daughter grow in my womb, I tried to bond with this new life growing inside me, but the latter half of my second pregnancy was marred with worry over the uncertainty of my oldest daughter.


#


Over the two-and-a-half—foot-wide padded treatment table draped with a roll of white paper, I wrestled with 21-month-old Maggie. It was November 2018 and I was about 37 weeks pregnant with my second daughter. I held her down while nurses painstakingly parted her hair and used six-inch Q-tips to apply goop directly onto the skin of her skull, pressing electrodes on the goop and then topped by squares of gauze. I lost count of how many were placed on her skull while I sang in whispers.


Maggie has tightly coiled curly hair. Everyone in our family has curls, my husband included. Trying to wash, detangle, or style Maggie’s curls regularly was already an act of dramatic torture.


“Maybe she’s tender-headed,” I remember someone saying. Maybe, I thought.


This, the excruciatingly slow and detailed process to make sure that every electrode was positioned accurately for her first EEG brain scan, was simply torturous for Maggie. She didn’t talk then and is still non-verbal to this day. After thrashing and attempting to pull off the electrodes, she settled on my lap, her keening a resigned wail of helplessness. When we lay down, she slowly ripped the paper she could reach. She always liked the sound of paper tearing.


For this EEG, Maggie needed to stay up all night before the appointment. Sleep deprivation triggers seizures and if that is what was happening, we needed to see them. We also needed to see her brain scans while she was both asleep and awake.


After the electrodes were in place, nurses wrapped gauze around her entire head. I held her hands and stared into her eyes.


“I hope you don’t mind, I hope you don’t mind that I put down in words how wonderful life is while you’re in the world,” I sang in her ear.


“We’re going to dim the lights and she can go to sleep. We’ll come back in when the test is over,” the nurse said.


I kept singing in her ear, holding her hand, staring into her eyes that became heavy, and as she began to drift to sleep, both of our eyes widened to the sounds of a bellowing, honking snore.


I brought my mom because she was supposed to help keep Maggie awake during the drive from Garland to Frisco.

“She’s starting to fall asleep,” I remember my mom saying from the backseat while I weaved through rush hour traffic.


“Tap her face! Spray water on her! Do whatever it takes to keep her awake!” I yelled in exasperation.


“Ay, Vane. That’s so mean,” she replied.


“I don’t care! Do it! Keep her awake. That’s why you’re here.”


Maggie stayed awake for the almost hour drive. Now, when I needed her to fall asleep, all we could both hear was the sound of my mother snoring like a rusty revving chainsaw. I couldn’t move. There were no call buttons for nurses that I could reach. If I did move, Maggie would certainly rip off the gauze from her head. Keeping Maggie pressed close to me with her fingers entwined with mine, I shimmied as close as I could to the edge of the table and tried to swing my leg to wake her. Damn, I couldn’t reach her. I started whispering loud, “Mom! Mom!” No response. Even a shriek, “Mom!” did nothing to revive her. Eventually, Maggie did fall asleep to her guttural metronome. Eventually, the test was over.


“Your daughter has epilepsy,” the neurologist said. He showed me the readings from the test, like a musical staff of squiggly lines.


As I held her throughout the test, as I held her while she slept, I thought she was peaceful. She gently snored in my arms.


I forgot the exact number, but the number of imperceptible seizures she experienced during that test was a punch to the gut. On the outside, she slept serenely. On the inside, according to her EEG read-outs, her brain was hosting a New Year’s Eve fireworks display.

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