Less than two months later, Abbie was diagnosed with epilepsy. In the midst of one of my many late-night online searches that followed her diagnosis, I came across Adelaide's story again and dove deeper into it through Kelly's unflinchingly honest and deeply moving posts on her blog, Inchstones. Kelly writes beautifully about the juxtaposition of Miguel's incredible opportunity to star in Hamilton on Broadway within days of Adelaide's death, while they both grappled with the loss in their own distinct ways.

Kelly gave a TED Talk on what she calls the "grief Olympics," the tendency to rank and compare our losses against one another. She argues that no one wins that competition, and that when we declare someone else's grief "unimaginable" — the very word Miguel sings in Hamilton when his character loses a child — we are quietly giving ourselves permission to look away. One moment has stayed with me: Kelly describes Miguel telling another bereaved father whose child had died as a young adult that he couldn't imagine losing a child he knew well, and the father replying that he couldn't imagine losing a child he never got to know. Loss is loss.

Kelly says that when her daughter would come up in conversation, she could feel people grow uneasy, eager to change the topic. She felt anxious, not because she didn’t want to talk about Adelaide, but because she didn’t want to make anyone else feel uncomfortable. I know exactly what she means. When well-meaning friends ask in group dinner situations, “Allison, how’s Abbie doing?” I know if I answer honestly, it will bring the easy banter to a halt and inevitably, an awkward silence will follow. More often than not, to spare everyone, I say something like, “She’s doing okay. Thanks for asking.”

But staying quiet leaves me feeling as if I have a secret part of my life that is too horrible, or unimaginable, for polite dinner conversation. Inspired by Kelly, I decided that I needed to do better in sharing the reality of our life with Abbie, and that was a major motivating factor for starting Wired for Hope.

A few months in, I reached out to Kelly to tell her how much her writing has meant to me and to thank her. Graciously, she wrote back, started following along, and invited me to write a guest post for Inchstones. In it, I tried to distill Abbie's story for an audience who had never heard it before. Kelly published the piece today, and I'm sharing it here.

It's taken me seven years since Abbie's diagnosis to be able to write about it. In that time, the pain hasn't lessened; in many ways, it's only grown. But it has finally been converted into something I can examine and strive to articulate. It's no longer just happening to me; it's something I've come to know intimately, woven into who I am. My sister recently shared this quote with me, and I think it's beautifully put: “Ideas come to us as the successors to griefs, and griefs, at the moment when they change into ideas, lose some part of their power to injure the heart.” — Marcel Proust

Thank you for reading, and thank you to Kelly for giving Abbie's story a wider home.

Last Sunday evening, I was in a state of complete panic about the week ahead. I stood frozen, staring into space and pulling at my hair — my terrible self-soothing habit — overwhelmed by all the tasks ahead of me and unsure where to begin. Luke had arrived home earlier that day after a summer away working as a counselor at a sleepaway camp, and we'd just returned from a week at Bethany Beach. But the calm I'd built up there evaporated the moment I thought about everything that had to happen next.

On Friday, we needed to be fully packed to fly out of town to move Luke into college. At the same time, I needed to do my job and work had piled up after a week away. I'd also recently started a new role at my company, which carries all the anxiety of starting over and proving myself again. My parents had kindly agreed to take care of Abbie for the weekend while we moved Luke into college, so I needed to ensure they had a detailed document covering her medications, her seizure protocol, and how to upload the RNS data each night.

My days were full of work, and my evenings went to helping Luke pack for college, but the tasks in both realms seemed to keep multiplying as our Friday departure loomed. At night my brain refused to power down, running endless lists of everything left to do, until I finally resorted to Ambien to force the shutdown.

Though this blog isn't about my other two kids, sending my firstborn off to college feels too momentous to leave out and it’s been dominating my thoughts since my last post. We spent hours on Saturday moving Luke into his dorm room followed by a massive Target run, and more unpacking and arranging everything in the small space. At dinner in the evening, we sat in a restaurant full of tables of three — two parents and a college freshman — all of us performing the same bittersweet ritual of a final meal before saying goodbye.

Afterward, we took Luke to stock up on drinks and snacks for his room. At that late hour, the store was full of upperclassmen on their first grocery run of the year — packs of gregarious students pushing carts together, mindlessly tossing in the starter staples: cases of soda, bags of chips, boxes of pasta, cleaning supplies that may never be used. I think it hit Luke right there in the brightly lit Publix that he knew no one, not a single soul, and we were about to say goodbye as soon as we got back to his dorm and unloaded the groceries. He wanted out of the store. Immediately. We left and drove him back to the dorm.

Once there, it was abundantly clear that Malcolm and I staying any longer that evening would not benefit anyone. As he got into his bed to cocoon himself from the situation, I felt my heart explode and the tears coming strong. I turned my back to him, closed my eyes, balled my hands into fists and physically pressed the tears back into my eye sockets so as not to upset him more by seeing me cry. Malcolm and I hugged him goodbye, told him we loved him, and made an abrupt exit as the RA (or an angel as I like to think of him now, knowing how he comforted Luke) arrived.

Deep breaths. Deep breaths. Deep breaths. He will be okay. He will find his people. It will just take time. Deep breaths.

We’re back home now. It's Sunday night again. Last week at this hour I was frozen, paralyzed by everything ahead of me. Tonight, with the college move behind me, I feel a sense of relief, still enough at last to feel the gratitude that last week's anxiety crowded out.

On its surface, the photo I've shared with this post may look unremarkable. But when I look at it, I see everything I have to be grateful for when it comes to Abbie. This is a photo that I take every summer at Bethany Beach: Abbie walking out ahead of me on the narrow wooden path, lined with hydrangeas and crepe myrtles, that leads from the house down to the beach. It's almost always just the two of us. Malcolm works in the mornings and comes down later, and the older kids drift down whenever they wake up. So for that walk, and usually about two more hours that follow on the beach, it's just Abbie and me — time I have always treasured.

The walk is filled with pure anticipatory joy, made up of so many small pieces. There's the turkey sandwich I've made exactly to my liking — a toasted roll piled with turkey, tomato, and fresh mozzarella. There are the snacks I've packed, like extra toasty Cheez-Its, which are very good in real life but taste impossibly better when eaten while reclined in a beach chair with warm sand beneath your feet. There's whatever light beach read I'm bringing down with me. There's the relief of leaving my work phone at the house, totally out of reach for a few hours. There's the heat of the sun on my skin. But most of all, there's Abbie nearby, the two of us completely at ease.

She has always been a beach girl, able to entertain herself for hours. I spread a big blanket under an umbrella, and she drifts between relaxing in the shade and running to the ocean to fill her buckets with water. She collects seagull feathers and shells along the shore and uses them to decorate her sandcastles. We eat lunch together. We wade into the ocean. And as usual she says, “I love you, mommy” whenever she feels the urge to say so, which is frequently.

Epilepsy has affected almost every aspect of her life, and beach time has not escaped unscathed. Heat is a trigger for seizures, and in years past, she’s had seizures walking back up to the beach house after a long day. But when we walk down in the morning, she’s well-rested and cool, the odds of a seizure are low, and I’m not watching her with the usual knot of worry.

The days had a slow and healing rhythm. Each morning, we’d wake her for her medications, but she’d stay in bed and sleep longer — a luxury she doesn’t have in real life, when she has to be up early to get ready for the bus that arrives at 7:30 AM. Later in the morning, she and I would make our way down to the beach, where we’d remain until nearly 4 PM. All of that rest, perhaps combined with the treatments the RNS device is quietly providing behind the scenes, made for a really good, practically seizure-free week.

I take the photo every year because I never want to forget this: the sight of her walking toward something she loves, at ease in her body and her world, with me right behind her. Tonight, while I’m still worrying about Luke and whether he feels lonely or homesick, I’m making space for memories of the beach walk with Abbie and hoping for a natural sleep tonight before what has to be a much less stressful week ahead.

My sister, who lives in California, won’t be able to come east for the holidays this year so she planned a rare summer visit to my parents’ home in McLean, VA with her boys. As depicted in Saturday Night Live’s Cousin Planet skit, cousins are seasonal entities who only materialize for the winter holidays, leaving them non-existent 360 days of the year where they reside on the Cousin Planet. After they leave, where do cousins go?

In the song, two cousins sing about how every day on the Cousin Planet feels like the day after a holiday marked by eating leftover ham, taking weirdly timed naps, and doing odd activities like walking backwards on a treadmill wearing pajamas out of sheer boredom. With this summertime gathering, it felt a bit like we broke the rules of the Cousin Planet. Where it’s always December, ‘Cause cousins don’t exist in the summer.

My sisters all stay in my parents’ house when they visit. Since I live nearby, I stay at my house and schlep back and forth each day. In the midst of this visit, Abbie started high school. The bus comes an hour earlier than it used to, at 7:30 AM, which has been a tough adjustment for her. Additionally, to her great disappointment, her best friend is not in any of her high school classes — I think because he’s not in the specialized program for students who need extra support.

On Thursday, I went to my parents’ house and the plan was for Malcolm to bring Abbie over when she got home from school. But as soon as she got home, she started texting me, ‘I’m so tired because I was at school and the bus ride was long. Do I have to go to grandma and grandpa’s house? Can I please stay home?’ I relented and told them to stay home and let her rest. I watched as the cousins swam, lounged around reading books, played various games in the yard, and ate endless popsicles, wishing Abbie wanted to be part of it all.

On Friday (no school for the holiday), she slept in and seemed in better spirits about going to see her cousins. She packed a small bag with extra clothes, a few trinkets she likes to play with, and a photo album filled mostly with pictures from before she had epilepsy. Her preschool used to print out photos and send them home with the kids. A long time ago, I put all of those photos into an album for her. Recently, she has taken to looking at it and asking me questions: ‘Wasn’t I so cute? Who are all of those friends I’m playing with? Do you like my dress in this picture?’ Right when we walked into the kitchen at my parents’ house, Abbie ran over to my mom and excitedly pulled out the book to show her. My mom sat down to look through the photos as Abbie stood near her smiling and pointing to things. Within a minute, she started having a myoclonic seizure. Excitement can be a trigger — there is a particular cruelty in that.

Once she recovered, we headed out to the pool. All of the cousins greeted Abbie, but she seemed overwhelmed by them. I thought of the Cousin Planet and wondered if it was blowing her mind to see them all there in the summer. She stayed in the shallow end and interacted almost exclusively with the youngest cousin, Mara, who is five years old. After a little while, she wanted to go inside where she remained the rest of the afternoon.

In the early evening, as some of us were outside having cocktails, she had another seizure while lying on the couch when my mom was nearby. After that, she fell asleep. I tried to rouse her for dinner but she didn’t want to join us. I brought a plate of food into the room where she was resting. After dinner, all she wanted to do was go home. I kept asking her to be patient since I was spending time with my sisters. But by 7:45 PM, I gave in, recognizing how miserable she was and left to go home.

I always have a little bit of FOMO when I leave to go home imagining my sisters hanging out without me, and it was sharpened this time by having to leave so early. On the drive home, I tried to explain to her why it was important for me to spend time with my sisters and for her to see her cousins. She stared out the window, sucking her thumb, and said nothing. When we got home, I helped her shower and she went to bed.

On Saturday morning, Abbie had three seizures shortly after she came downstairs for breakfast. The first one caused her to spill a full cup of hot chocolate all over herself. The second one occurred while she was helping Malcolm make pancakes. She recovered fairly quickly from those two, perhaps because the RNS device detected the seizures and provided stimulation. The third one that followed was much worse. After two or three minutes of myoclonic jerks, she collapsed forward on the kitchen counter and continued to be non-responsive for about ten minutes. Her eyes were open but she didn’t answer questions. Malcolm and I moved her to the couch where she fell asleep. Later, when she woke, I helped her get ready to go back to my parents’ house for the day. She insisted on bringing the album again.

While there were some good moments (sitting with Mara at a picnic table playing with air dry clay and painting rocks with my sisters and some cousins), for the most part she kept to herself. That night for the big Fourth of July BBQ, she didn’t want to sit at the table with all of the cousins. She wanted to be near me and Malcolm at the adult table. This may be because she feels safer from a conversation standpoint. It’s hard for her to keep up with the fast-paced dialogue of teenagers. Even with Mara at that table, I think it feels like too much for her to process.

Within minutes of sitting down to dinner nestled between me and Malcolm at the adult table, she had a seizure. Perhaps she sensed it was about to happen, and that’s why she wanted to be near us. While Malcolm and I tried to get her to move to another room to rest, she wanted to stay put in her chair. She sat there in a dazed state as we periodically asked her if she wanted to eat anything. I tried to carry on and enjoy dinner, but her seizure cast a shadow over the rest of the meal, and I felt overcome with a sense of sadness.

Throughout the weekend, I observed the older cousins and my sisters try to interact with Abbie. Some sat with her and looked through the photo album. Others asked her questions about high school, which she answered briefly, without elaboration. Some questions — what classes are you taking, for example — she was unable to answer and I jumped in to assist. I’m grateful for the efforts that they all made to engage with her. Yet, I still feel so sad that despite those efforts, Abbie is really unable to truly connect with any of them. People who only appear in her life sporadically, like cousins from the Cousin Planet, are too abstract for her.

That last morning, after three seizures before breakfast, she still insisted on bringing the album. I felt as if she wanted to show people who she was before all of this. I don't know what to do with that except to honor it and help facilitate her memories of that time. It is, perhaps, the least I can do.

First, some good news about the Responsive Neurostimulator (RNS) device: Dr. K responded to my messages in the patient portal about Abbie’s recent seizures. He said that the RNS device detected all of the ones we recently observed within one or two seconds of each seizure starting and provided treatment. The way he could confirm that this occurred is because when we swiped the magnet over the device while observing a seizure, the device recorded a picture of the brainwave activity sixty seconds prior to the magnet swipe and thirty seconds following it.

The device is currently providing 1.0 microcoulombs of stimulation when it detects irregular brain activity. During a conversation I had with J, my primary point of contact at NeuroPace, he said that Dr. K will likely increase the amplitude of the stimulation to 1.5 microcoulombs at the next programming appointment, and there’s room to go up quite a bit more over time. J reassured me that the recent data is evidence that the device is working as it’s supposed to, and we can anticipate that it will continue to become more effective over time.

Since Abbie was diagnosed with epilepsy in December 2019, Malcolm has shown up in ways I couldn't have anticipated. As I described in a prior post, our experience with epilepsy started the day after Abbie wandered out of gym class into the pouring rain to be sick outside. The next day, I took her to the emergency room at Children's Hospital in DC. Those months of unexplained vomiting, we would later learn, were seizures all along. When the ER doctor finally told me that Abbie would be admitted, many hours after we'd arrived, Malcolm came in to take over so I could go home to Luke and Harper.

Abbie has stayed in the hospital countless times since that first night — for multi-day EEGs, for other monitoring, and most recently for the RNS surgery. Every one of those nights, Malcolm slept in her room in whatever was available — the worst being a non-reclining chair in the ICU after surgery, separated from the next patient by only a curtain. This has always been his domain, in part because he can fall asleep anywhere and I cannot, but mostly because that's just who he is. I have never once had to ask.

After more than a year of failed medications, we sought a second opinion at NYU Langone Epilepsy Center. The initial appointment fell at the peak of the pandemic, and I took Abbie up on the train while Malcolm stayed with Luke and Harper. It was a production that involved roaming the streets of New York at night searching for a COVID test after I received notice of the 24-hour testing requirement in a reminder text at 9 PM. Luckily, we found a makeshift testing booth on a street corner a few blocks from the hotel that would provide instant results. But the harder part of getting a second opinion fell to Malcolm. Dr. D wanted Abbie admitted to NYU for a three-day EEG. Malcolm took her up on the train and stayed all three days and nights without relief while I was home with the other kids, except for one afternoon when my best friend showed up from New Jersey, bag of arts and crafts in hand, without being asked. She kept Abbie entertained for hours so Malcolm could leave the hospital, go for a run in Central Park, and have some time to himself. For Malcolm, who had barely left that hospital room in days, the fresh air and solitude were a gift.

Malcolm is a benefits lawyer — work we've joked for years is too boring to discuss. When he says the word "ERISA," my brain immediately travels somewhere far away. But during our eight-month battle with Anthem Blue Cross Blue Shield to get coverage for the RNS surgery, his expertise turned out to be exactly what we needed. He guided me through the process of getting my employer to apply pressure on Anthem — a strategy my company ultimately declined to pursue — as well as the many levels of internal and external appeals. His knowledge mattered even when the system failed us.1

Yesterday, the day before Father's Day, Abbie had a very hard day. She stayed in bed until 10:30 AM after her morning medications, lethargic and slow. By dinnertime, she was already asleep in her room. We woke her for her evening medications at 6:30 PM and got her into the shower. She came back downstairs afterwards still in a daze, without her pajamas on. We guided her back upstairs, got her dressed, and put her to bed.

Their nightly ritual is for Malcolm to read a few pages of a chapter book as she starts to fade off to sleep. “Abbie, do you want me to read to you?” Malcolm asked. But she was already closing her eyes. She was so exhausted she couldn't even turn her head to the right so we could scan the RNS device with the wand to upload the day’s data. We coaxed her into turning her head, did the scan, turned off the lights, and slipped out of her room. In the hallway, we looked at each other and simply frowned. There was nothing more to do or say — just that small acknowledgment, shared between us, of how hard this is.

While we've handled Abbie’s epilepsy differently in many ways (I am obviously far more public about it than Malcolm chooses to be), there is no one else in the world who knows precisely what's been lost. We parented the same happy, healthy little girl for seven years, and then we watched, together, as she gradually slipped away from who she was. We've lived through medications with dreadful side effects that altered her physically and emotionally — steroids being the absolute worst. We've sat with the uncertainty, the grief, and the shared anxiety of what lies ahead. But we've also shared the joy. Abbie says or does something so unexpected and so funny that it stops us both in our tracks regularly. And quite frequently, we find ourselves the joint objects of her affection. “Mommy, come here. Daddy, come here.” She pulls us both in and hugs us as tightly as she can, and Malcolm says, “It's an Abbie sandwich!” In those moments, everything else falls away. I look at him and think about everything we’ve carried together. While the road ahead is uncertain, I am deeply grateful that Malcolm will be there to navigate it with me.

As I write on this Sunday evening in the days following two graduations, I feel as if my heart is beating outside of my chest. I derive some comfort though in knowing that this feeling is not unique to me. For weeks now, my social media feed has been filled with graduation posts. I assume that parents everywhere are experiencing similar mixed emotions of joy and pride combined with awe (and some degree of sadness) at the passage of the time.

On Friday, when I shared pictures of Abbie’s graduation on Instagram, a former pro bono client who lives in Saudi Arabia (more on that another time, perhaps) immediately messaged me and shared a video of his third child, a twelve-year-old girl named Dana dressed in a beautiful pink cap and gown proudly carrying a large decorated sign with her face on it as she paraded down a narrow street to family cheers. He wrote, “Congratulations on your daughter’s graduation, Allison. My daughter Dana graduated from elementary school today also.” The sign she carried was strikingly similar to one that Abbie made for her graduation, and in the course of our Instagram chat, it struck me how universal these feelings are that I’m having.

Luke graduated from high school on June 1st, and Abbie graduated from middle school on Friday. Luke is already gone from the house, and his absence is omnipresent for me. Abbie will start high school in the specialized Excel program on July 1st, and I wonder how that’s even possible. She grows taller and more adult looking but remains so childlike in her personality and cognitive abilities.

The day after Luke graduated, I flew out of town with him for his college orientation. After spending one night in the hotel with me, the next day we walked to the school and waited in line outside of a dorm where he would be assigned a roommate. Parents were not allowed to enter after the student received their assignment. I watched him walk inside with his suitcase and pillow in hand, and I knew I was going to cry. I turned to leave and head back to the hotel when I noticed two other moms standing outside of the dorm wiping tears from their eyes. Of course, I made a beeline for them. Both of them, like me, were sending their first child off to college. While we recognized this was only orientation, it was a brief glimpse of the feelings we’d have in August when we did this for real. In the comfort of complete strangers, each of us expressed our particular anxieties for our child (or young adult, I should say), different yet also in some sense similar.

Luke left Friday to be a counselor at sleepaway camp all summer. He returns from camp one week before we drop him off at college. While I spent this whole year knowing the time would come for him to leave, it somehow still felt far too sudden now that he’s gone.

Abbie’s graduation from middle school began with the fifteen eighth grade students walking in one by one to “Pomp and Circumstance”, a song that elicits the memories and emotions of both my own graduations and my children’s prior ones. After they were seated, each student was presented an award for excellence in something. My sweet aspiring artist was awarded Excellence in Artistry.

Two girls in the class got up to sing “Riptide” accompanied by a teacher on the ukulele. There was initially an almost Saturday Night Live skit sense about the scene, and I glared at Luke and Harper who were attempting to stifle giggles. It was as if it was just too tender to witness first hand, and laughing quells the discomfort. The girls sang in their sweet high-pitched voices, "I love you when you're singin' that song and / I got a lump in my throat 'cause / You're gonna sing the words wrong."

While it’s a romantic love song, I thought of my love for Abbie. The lyrics imply a nervousness that stems from such deep emotion. The narrator cares so deeply for the object of his affection that even her imperfect quirks, like messing up lyrics, make his heart swell. It’s about loving her for who she actually is, not just an idealized image. I feel this overpowering sense of protective love for Abbie when she’s interacting with someone we don’t know, and they ask her a question. I have long struggled with whether to jump in and explain quickly, “Abbie has epilepsy and it takes her time to convey her thoughts.” Instead, more often than not, I remain quiet and pray that Abbie can answer the question appropriately and if not, that the person she’s speaking to senses the situation and responds empathetically.

After more remarks from some of the students and the awarding of diplomas with kind words by the homeroom teacher about each student, there was a slide presentation which included photos of each child as a baby, elementary school-aged and present day, set to more tear-jerking music.

With “Pomp and Circumstance” still ringing in my ears, I’m sitting now with so many emotions between the two graduations. I’m proud of Luke and excited for his next chapter of life, but I miss him and I’m struggling to come to terms with the fact that it’s the end of an era for our family unit of five. As Senior year traditions have already started for Harper, I’m anticipating that my heart has to survive this all over again this coming school year.

I’m also incredibly proud of Abbie for her persistence in the face of this disease that has stolen her ability to succeed in school. How frustrating it must be for her to learn things only to forget them. She recently brought home a quiz that she received a 4/10 on. She asked, “Mommy, is this still a good score?” I told her that if she tried her best, which I knew she did, the score didn’t matter. “But is it a good score?” she persisted. Later that evening, Malcolm called me up to his office area. The worksheet was sitting on his desk with a post-it note on top in Abbie’s curlicue handwriting that said, “I’m sorry I got a bad score.” My heart broke for my sweet little girl.

As she starts high school soon, I worry about more of the same occurring. She is clearly starting to understand grading and care about it more than she has in the past. The work is going to become more challenging, and she’s going to start getting homework. How can I best support her through all of this? What’s going to happen after high school? While I always have a persistent low level of anxiety about what the future holds for her, it’s front of mind now. It used to feel like a faraway concern, and no longer does. As I gradually move towards acceptance that her future will be completely different from her older siblings (and all of her typical peers whose milestones I see on social media), it’ll be our job as parents in the coming years to help navigate that path for her.

The days are long, but the years are short. While perhaps wildly overused at this time of year, the adage perfectly captures the beautiful, exhausting paradox of life, especially parenting. In the moment, hours of endless repetition, meltdowns, and routines can feel agonizingly slow and mundane. Yet, in the blink of an eye, the years vanish.

These graduations are unique, yet they are also all the same. Parents everywhere all over the world are marveling at the fact that it feels like yesterday when they held a beautiful baby in their arms, and wondered what the future would hold for this tiny person they already loved more than anything they could have ever imagined possible. As I move through these post-graduation days with what feels like my heart outside of my chest, I’m comforted to know that I am not alone. In fact, it’s more likely than not that the middle-aged woman in line behind me to check out at the grocery store is also currently going through the routine motions of daily life feeling equally raw and exposed.

Abbie’s seizures persist despite the implantation of the RNS device. She had two particularly bad ones last weekend which we marked with the magnet. I contacted Dr. K via the patient portal and despite a reminder later in the week, I’m still waiting for a response. She had another one on Saturday in a hotel lobby after we arrived in Philadelphia for my nephew’s bar mitzvah. Luckily, Harper was standing next to her and stopped her from falling. I’m trying to maintain hope that the device is eventually going to help, but in all honesty, I write from a place of despair this evening. But despair, I’ve learned, is not the same as giving up.

On May 8th, we had our third appointment to continue calibrating the Responsive NeuroStimulator (RNS). This time, a representative from NeuroPace attended the appointment. When Dr. K asked how Abbie was doing, I was about to answer when Abbie chimed in to say, “I still get blurry eyes. And, when I try to say something sometimes I can’t think of what I’m saying.” I’ve seen her struggle to come up with words to complete her thoughts many times, but I didn’t realize the degree to which she was becoming aware of it. It’s one thing to observe it. It’s another to hear her describe it.

At the prior appointment, Dr. K increased the detection settings to make the device more sensitive. The data revealed an unintended consequence: Abbie was receiving too much stimulation for brain activity that wasn’t seizure-related — just “noise,” as Dr. K described it. As a result of those changes, she went from receiving treatment about 1,000 times daily to receiving it about 6,000 times daily, which is too much, he explained. Fortunately, the stimulation itself — measured in microcoulombs, a unit of electric charge — was still at the lowest default setting.

So Dr. K and the representative made two changes at the appointment: 1) the detection setting was reduced to avoid excessive frequency of treatments; and 2) the stimulation setting was increased from .5 to 1.0 microcoulombs to provide more amplitude to the treatments. Dr. K explained that the goal in all of this is to find the right balance so that she’s not under-treated or over-treated. It’s an iterative process filled with trial and error, he said. He repeated a statistic he’s cited previously: “It generally takes at least six to eight months to see a 30% seizure reduction.” Patience.

A day after the appointment, a Saturday, Abbie had two myoclonic seizures forty minutes apart. Malcolm used the magnet to flag both events. On Monday, I reached out to Dr. K through the patient portal and he confirmed, after reviewing the data, that treatments were provided for both events. He also confirmed that the number of treatments per day went down to around 2,000 as intended.

May 12th was Abbie’s annual Individualized Education Program (IEP) meeting. I dread this meeting every year because it’s an accounting of the lack of progress she’s made since she was diagnosed with epilepsy more than six years ago. She struggled through more than a year at the public school until it was established that Montgomery County Public Schools could not meet her needs. At that point, the county was legally obligated to place her in an approved private specialized school and cover the tuition and services. During the annual meeting, we go through the exercise of confirming that her placement at this particular private school remains appropriate.

In advance of the meeting, I spent time reviewing the 50+ page draft IEP document. It begins, “Abigail’s multiple disabilities related to epilepsy have an impact on her verbal comprehension, processing speed, working memory, retention of academic skills and understanding, executive functioning, as well as expressive, receptive, and pragmatic language.” It goes on at length detailing the results of various standardized tests like the Measures of Academic Progress (MAP). In almost every area of testing (reading, writing, and math), Abbie’s educational functional testing scores were equivalent to that of a second or third grader. These test results are essentially unchanged since her diagnosis and are indicative of the toll this disease has taken on her brain.

The IEP walks through each of the academic, social, and emotional/behavioral goals that the school team set for Abbie last year with concrete testing data indicating the lack of progress being made. While there are small glimmers of progress in certain areas, overall it’s an incredibly disheartening document to read. However, it was a relief to see her described as a “happy and kind-hearted student.” I give an enormous amount of credit to the staff at the school for creating a supportive environment where even a student who is facing so many challenges continues to enjoy going to school.

This year, since Abbie is fourteen, there is a new section in the IEP called Secondary Transition. This is where they start to talk to the child about what they envision for themselves after high school. Abbie apparently talked about wanting to be an artist. They guided her into considering a career teaching art to young children. “After graduation, Abigail will obtain employment at a preschool.” While I appreciate what they’re attempting to do with this new section, it’s incredibly hard to read. For the first time, it was there in black and white — not the future I had imagined for her, but the one this disease has made more likely.

At the meeting, the school team recommended that we enroll Abbie in Excel, a highly specialized education program within the high school for students who need even more support academically and socially. The student-to-teacher ratio is 3:1 as opposed to 8:1 in the standard program. Excel students attend school eleven months of the year, with only August off. They take one fewer academic class each semester, using that period instead for additional support with their coursework. Most don’t graduate in four years, staying on for one or two years beyond that. After describing the program, we were asked, “So parents, what are your thoughts?” Holding back tears, I responded, “This sounds like the right option for Abbie.”

Two things can be true at the same time. I am incredibly grateful that this amazing school exists and that we have access to it. I’m utterly heartbroken that my once precocious and sassy little girl has a disease of the brain that has robbed her of the future I hoped she’d have.

Last Friday was Parents’ Day at Abbie’s school. The teacher welcomed us to the classroom and turned down the lights to prepare for the students’ video and slide presentations. I waited nervously when Abbie’s name was called. A year ago, she had refused to present her project, saying she had stage fright. She walked up to the front of the room filled with parents and peers and read aloud from the slide deck she’d prepared about what she wants to be when she grows up. “My dream is to be an artist so I can be creative. I like to paint and draw. I will learn to make big sculptures, digital art and charcoal.” She stumbled over certain words but got through it, and this time, in the darkened room, I let the tears come. I was crying for all of it — for what the IEP said she couldn’t do, and for what she was doing right in front of me.

At the April 10th appointment, once again, not all of the clinically observable seizures were reflected in the data from the device. Dr. K reiterated that this happens when seizures originate in regions of the brain that are located away from the electrode placement. This makes our use of the NeuroPace magnet critical.

When we swipe the magnet over the RNS during a seizure, it tells the device to take a ninety-second recording of her brainwaves. Having these electrocorticogram (ECoG) images, rather than just raw numbers, allows Dr. K to refine the detection settings and better understand what Abbie’s specific seizures look like.

Currently, Dr. K said that the device is providing stimulation approximately 800 to 1,000 times daily, which is an indication of irregular brain activity that it has been able to detect. He increased the sensitivity of the device to capture events earlier, but he’s holding off on increasing the dosage of the stimulation until she hits the two-month mark.

During the appointment, Dr. K rattled off some rough statistics like, “It can take up to six months to see somewhere between a 30-35% seizure reduction. After like six or seven years, seizure reduction can be up to 70-75%.” He explained that these numbers are for children who have the RNS placed in the focal point of their seizures. For Abbie, the device is in her thalamus since there isn’t a single focal point for her seizures (explained more in Grand Central Station). The data on this placement is not as comprehensive because it’s a newer use of the device.

Dr. K said that he’s working on compiling data for patients who have the RNS device placed in the thalamus region of the brain. Based on what he’s seeing so far, he told me that “50-55% of patients experience more than a 50% seizure reduction over time.” But then he added a sobering caveat: “This may not be the case for every person. Some people just don’t respond to the RNS.” His rough statistics and comments made my heart sink. What if Abbie is one of those people who doesn’t respond?

On Friday morning, I returned from a week-long trip to Japan for work. That evening, I was boiling water to make pasta for Abbie for dinner. She sat at a barstool in the kitchen waiting. I went into the bathroom near the kitchen and heard a thud — her phone hitting the floor, an unfortunately familiar sound that means she’s had a seizure.

When I ran out of the bathroom, Abbie was having a myoclonic seizure. Her head fell down on the counter, her hands were clawed, and she was jerking. I texted Malcolm from her phone (“seizure, come to kitchen”) as I held her up. He came in from the sunporch and turned off the now furiously boiling water. We carried her to the couch, where she fell asleep, as she typically does after more severe seizures. In the midst of this seizure she bit down hard on her thumb, which is a common occurrence because she self-soothes by sucking her thumb. This opened up an old wound that had recently healed, and it was bleeding quite a bit.

In a jet-lagged haze, I muddled through the rest of the evening — getting Abbie fed after she woke up, giving her medications, getting her showered, scanning the device to upload the data, and putting her to bed. The next morning, I decided to take her to urgent care to get her thumb evaluated. It was swollen, and I worried it could be infected. At urgent care, the doctor explained that since it was an old injury reopened and it was located on her knuckle, we shouldn’t close it with stitches. She prescribed topical and oral antibiotics as a preventative measure and sent us on our way.

Abbie’s thumb is healing, and I’m back to the routine of caring for her after a week away. I keep coming back to what Dr. K said — that 50-55% of people with the device in their thalamus see meaningful seizure reduction. I’m working on letting that statistic be enough to hold onto for now. Half a chance is still a chance.

With Luke heading off to college in the fall, we decided to take our most ambitious spring break trip. For months, I’ve been planning this trip to London and Paris, our first time taking the kids to Europe. While I was excited for the trip, I was also incredibly nervous about how it would be for Abbie. I worried about how she would handle the activity-packed days and city walking, since she gets easily fatigued. I was concerned that much of the content of the guided tours would be beyond her comprehension level. I also knew from experience that travel of any sort tends to lead to increased seizure activity due to the disruption in her routine and sleep schedule. While my parents offered to have Abbie stay with them while we went away, I wanted her to be with us on what might be the last time our family of five went away for spring break together.

Traveling abroad to a different time zone with Abbie is not a simple matter. The key, as with many things in life, is preparation and organization. Even then, so much remains out of our control. It’s critical to take anti-seizure medications at set intervals to maintain the medication level in the bloodstream. Abbie takes her morning medications at 8 AM and her nightly medications at 6:30 PM. In advance of the trip, our physician’s assistant created a medication schedule that accounted for the time change. Even though we followed it, Abbie had multiple seizures daily on the trip. We brought the NeuroPace tablet and scanned the device every night so that the seizure activity was captured for the epileptologist to review at the next appointment, this Friday.

Two weeks prior to the trip, Abbie’s period started for the first time. We’ve always known this was going to be challenging for her to understand and manage on her own. As a result, in consultation with the pediatrician, we planned that she would start an oral contraceptive pill (OCP) which would reduce her cycle to once every three months. However, an unfortunate side effect of the OCP is that it can reduce the efficacy of one of her anti-seizure medications, Lamictal, by as much as 50%. As a result, our neurologist instructed us to gradually increase the Lamictal dosage over three weeks and then get blood work to assess the level of the medication. Unfortunately, we were in the middle of this delicate titration period when it came time to depart on the trip.

While the pictures I shared as Instagram stories showed the high points, there were frankly many low points on the trip. One particularly heart-wrenching moment occurred after three days in London, when we went to the St. Pancras International train station to take the Eurostar to Paris. As part of the UK exit check, there are self-service kiosks with a two-step process. First, you lay your passport flat on a scanner to open a set of gates. Then, you’re in an enclosed space where you need to look into a camera and align your face into an oval on the screen. After doing that successfully, the second set of gates open.

I went through the kiosk after Luke and Harper. Malcolm helped Abbie with the first step, laying her passport flat. Then she was in the enclosed space alone between the gates and needed to align her face in the oval. She looked up at the screen as directed by the security personnel, but she was not placing her head correctly. She was getting more and more agitated with each failed attempt because she didn’t understand why the gates wouldn’t open and she was trapped inside. All I wanted to do was jump back over the gate and help her. Finally, security pulled her out and she and Malcolm waited in a long line with other people who could not go through the self-service system, mostly parents with toddlers and babies.

When Abbie finally made it through that line, she ran into my arms and burst into tears. I stood there comforting her amid the bustling crowd, but she couldn’t stop crying. A security woman walked up to me and whispered, “Follow me.” She guided us to a section of the station that was roped off as a waiting area for people with disabilities. It was a blessedly quiet space amid the chaos of the station where Abbie could collect herself before it was time to board the train to Paris.

Despite the seizures and the fatigue, there were moments of pure joy. Abbie struggles to retain much of what she learns, which makes it all the more delightful when something breaks through. She surprised us all when our Eiffel Tower tour guide asked the large group what color the now brownish Eiffel Tower was originally painted. Silence. Abbie raised her hand and answered matter-of-factly, and correctly, “Red.” At the Louvre, standing in front of the Great Sphinx of Tanis, the tour guide asked who knew about the head on the animal body. Abbie proudly blurted out, “It’s a Pharaoh from Egypt” which was exactly right. Despite being tired on the tour of the Tower of London, she was clearly delighted to see King Henry VIII’s bed, noting how it compared to hers in size. When we roamed shops in both cities, her primary focus was on finding special trinkets to bring back to her best friend. She was so excited to bring those little items to school with her on Monday.

There is no doubt the trip would have been easier had Abbie stayed behind. I also recognize that our focus on her needs sometimes detracted from Luke and Harper. A few nights, we served Abbie dinner in the room and went out nearby, just the four of us. The vibe of a family meal changes when she isn't there; I feel more relaxed, yet I’m always wondering if she’s okay back at the hotel.

There’s no perfect solution, and hopefully we struck some balance of both including her and carving out time to focus on the other two. In a way, although it was a vacation, I feel like I survived it. I had a wonderful time, but I’m also relieved that it’s over. When I think about the trip now, I have an image of Abbie standing at the window of our hotel room in Paris with her phone in hand taking video after video of the beautiful sparkling Eiffel Tower at night. She couldn’t get enough of it. Neither could I.

The doctor was soft-spoken with a lovely Turkish accent. Those attributes, combined with the weight of the information, made it challenging for me to process everything he was saying in the moment. Since the appointment, I’ve reviewed my notes and spoken to NeuroPace twice to gain clarity on my remaining questions.

Epilepsy encompasses a wide range of conditions. The key concept is that it is any brain condition that makes a person persistently prone to having seizures. Given this broad definition, if you know more than one person with epilepsy, chances are they have vastly different experiences.

Abbie has multifocal epilepsy, which means that her seizures do not all originate in one single focal point in her brain. This is why she has never been a candidate for resective surgery. Believe me, this is something I have asked about from day one and have regularly raised in appointments with her neurologists.

The RNS is used for people with all types of epilepsy. The device has two electrodes. Electrode placement is highly individualized based on where the seizures originate. For people like Abbie, the thought is that by placing the two electrodes into the centromedian nucleus (CMN) within the thalamus on either side of the brain, providing stimulation to that area will spread to other areas. This is because the CMN is a bit like Grand Central Station where brain waves from other parts of the brain travel through it.

The RNS does four things: monitors, detects, records, and stimulates. Via the electrodes, it’s constantly monitoring brainwave activity. When it detects abnormal activity, it records it - essentially taking a ‘picture’ of the brainwaves. Each picture is ninety seconds long. The device has enough memory to record 720 seconds in a day, or eight pictures. If there are more than eight instances of abnormal brain activity in a day, it records the most recent and overrides the oldest, but it still tags that oldest event as having occurred. Finally, the device provides stimulation pulses in response to these abnormal electrical events (seizures). Over time, the device gets smarter based on the more data it collects. The goal is that it delivers stimulation that interrupts the abnormal brainwave activity before it fully develops into a seizure.

I showed up to this appointment with my seizure log in hand. Abbie had eight seizures that I observed since the surgery. I was eager for information from the doctor about each of those seizures. But not all of them were reflected in the data that the device collected. This is because when they implant the device initially, it has generic non-personalized instructions about what it should detect as abnormal brain activity. Also, it’s not monitoring/detecting/recording in every area of the brain since the electrodes are only in the CMN. This is why not all of her seizures were reflected in the data. The doctor explained that we will likely see more seizures in the data at the next appointment as the device becomes smarter or more personalized.

There were two big seizure events captured by the RNS, both of which we knew nothing about. One was at 4:07 PM on a school day. Abbie had arrived home around 4 PM and gone up to her bedroom. I was working in my office in the basement, and Malcolm was working from his office in our bedroom. So, she must have had that seizure in her room alone.

The other one, the longest seizure the device recorded, was at 3:15 AM. While we already knew that she has irregular brain activity at night based on multiple overnight EEGs through the years, this was a significant seizure in her sleep which scared me. Generally, nighttime seizures place people at a high risk of SUDEP (sudden unexpected death in epilepsy). However, Abbie does not have tonic-clonic seizures. She has absence and myoclonic seizures. With absence seizures, people lose awareness usually for a few seconds. During myoclonic seizures, people exhibit brief jerking movements while remaining conscious. Given this, she is fortunately not at an elevated risk for SUDEP. Regardless, the thought of these seizures happening at night worries me.

After going over the data, the doctor programmed the device to provide a low level of stimulation when it detects abnormal brain activity. He warned us of signs to look out for that would indicate she may be getting too much stimulation, e.g., if she stops talking, starts drooling, or seems overly tired. Since the appointment, I’ve observed a few seizures that appeared to end very quickly, presumably because the device detected the abnormal brain activity and provided stimulation.

I cautiously asked the doctor about whether we could hope to see cognitive improvement, and thankfully he said yes. Over time, as the RNS device gets smarter and provides stimulation quickly when it detects abnormal brain activity, we should expect that she will have fewer seizures. He explained that each seizure is like a “hit to the brain” which inhibits the brain from improving. The fewer seizures she has, the better the chance her brain has to recover.

Lastly, I promised to highlight some of the silver linings. Here’s a big one. Abbie tells me that she loves me multiple times a day. She also likes to say things like, “You’re the best mommy in the world.” Another favorite is, “I am yours and you are mine.” On March 19th, I decided to keep track. Combining both verbal and texts, she said “I love you” to me fourteen times and “I am yours” three times. I’ve read that hearing these words, or similar affirmations, releases oxytocin in the brain. Put simply, it feels so good to be loved by my sweet Abbie.

Friday was Abbie’s fourteenth birthday and a milestone day in her treatment. We had our first appointment with the new epileptologist, and he programmed the RNS device to start providing stimulation based on four weeks of data since the device was implanted. With the doctor’s permission, I made an audio recording of the appointment. The transcription is fourteen pages single-spaced. Needless to say, there’s a lot of information to process. I’ll be condensing everything into a summary in my next post. For now, I’m taking a break from our regularly scheduled programming in honor of the Oscars tonight.

In If I Had Legs I’d Kick You, Rose Byrne (a Best Actress nominee) plays Linda, a therapist who is reaching her breaking point caring for her young daughter with an eating disorder so dire that she needs supplemental feeding through a tube. Linda struggles to manage her daughter’s illness while living in a motel after a massive leak causes the ceiling of her apartment to collapse, all while her absentee husband (Christian Slater) second guesses how she’s handling everything. Linda repeatedly declares to her coworker therapist (Conan O’Brien), while lying on his couch, “I need to be alone.”

Throughout these past seven years since Abbie’s epilepsy diagnosis, I’ve had many moments where I felt pushed to my limit, on the edge of completely unraveling. I desperately needed support, yet I didn’t know where to begin to ask for help. At the same time, all I wanted, in these dark moments was to be alone, away from it all. Solitude has become an extremely rare and sacred gift.

The most challenging times are when one of my other kids is struggling while Abbie is also in a difficult phase with regard to the frequency and severity of her seizures. I feel enormous guilt about the fact that since her diagnosis, a grossly disproportionate amount of my mothering energy goes towards her.

Before I go further, I want to say that my son, Luke, has approved me sharing this. He is eighteen years old now and heading off to college in the fall. I’m incredibly proud of the young man he’s become.

During the pandemic, like many other children, Luke struggled with depression and anxiety. The shift to online school during the lockdown and the pressure of preparing for his bar mitzvah created a perfect storm of conditions that seriously exacerbated his psychological wellbeing. Online school was also dreadful for Abbie who was still at her old school, which was unable to meet her needs in person, let alone in a virtual environment. With the help of a special education attorney, we were engaged in a protracted dispute with Montgomery County to get her placed in a more appropriate school.

At the darkest moments during the lockdown, between Abbie’s new epilepsy diagnosis, Luke’s mental health issues, and my full-time job, I was hanging on by a thread. It was too much, two kids on the edge of a disaster at any moment. With the five of us essentially trapped in the house indefinitely, solitude was a mere fantasy.

There was one day in the summer of 2020 that may have been the closest I’ve come to losing it. Luke was twelve. Harper was eleven going on twenty-two. Abbie, eight, was on steroids used to reduce neuroinflammation, specifically for drug-resistant cases of epilepsy. Her sweet little face was swollen, she gained weight and had mood swings.

We spent a week at Bethany Beach with my childhood friend and her family. The night before the drive home, Harper decided to put a scopolamine patch on herself to help prevent the usual car sickness she suffered from. The next day, at the end of the three-hour drive home, as we sat at a traffic light, Harper opened the car door and started to get out. Malcolm and I yelled simultaneously and told her to get back in the car. She said quietly, “But we’re home.” When we walked into the house, she started calling out for my friend’s daughter who had been at the beach house. Then she asked, “Why aren’t you guys putting Abbie to bed? It’s the middle of the night.” It was broad daylight. Malcolm and I were stunned. We got her to lay down on a bed and called the pediatrician. I was convinced that this was the onset of some sort of mental illness, like schizophrenia. My heart was racing, and my immediate panicked thought was, I cannot handle this. There is absolutely no way I can handle a third child with serious issues.

We learned that scopolamine, if taken in high doses, can cause acute toxic psychosis. It’s likely, the pediatrician explained, that because she put the patch on the night before, she had too much of the medication in her system. I felt flooded with relief as the pediatrician continued to explain that in a few hours, Harper would return to her normal self. This incident has become a funny family anecdote now, but at the time it was truly terrifying.

Years later, I still have moments where everything seems to be coming to a crisis point and like Linda, I fantasize about complete solitude. On Friday, our family, along with my parents, celebrated Abbie’s birthday at our favorite local Italian restaurant. While eating dessert, my mom asked for a bite of Abbie’s ice cream. Abbie stood up and walked around the table to my mom’s seat then gestured that she intended to spoon-feed it to her like a baby. When my mom obliged, we all burst out laughing. In that moment, I looked around the table and thought, what in the world would I do without each of these people?

The other losses seemed small at first — trivial, even — but they accumulated, and in the end, their weight was crushing. When Abbie was diagnosed, she was on the cusp of learning to ride a bike. While I continued to push her to learn, it was a failed pursuit. Her seizures are often triggered by exertion, and frequently, she would have one while trying to learn to ride. Much more slowly than I care to admit, I realized it was unsafe, stopped pushing the issue, and eventually donated her bike to a charity.

She was on a soccer team with her school friends, and she loved it. The coach, a dad of one of the players and a friend, called me during a practice to say that Abbie seemed confused. I came to get her and brought her home. She started saying she didn’t want to go to the games, but I insisted that she go. The coach would put her in for a few minutes, but she’d stand on the field looking unsure and unhappy. Ultimately, I realized she needed to leave the team.

Abbie swam for our neighborhood pool in the summers. She was just beginning to become a strong swimmer, but she started to have seizures in the water. I took her off the team and got her lessons with a teenager at the pool so she could continue learning to swim. She frequently had seizures during these lessons, and as a result did not enjoy them. Eventually, swimming also fell by the wayside.

The first Halloween after Abbie’s diagnosis, when we had already moved her to a new school, her friends from the old school invited her to trick or treat with them. The girls wanted to go alone and the parents felt okay with that. But Malcolm followed along in the distance behind the girls in case Abbie had any issues. She quickly became fatigued as the girls ran from house to house. Malcolm and Abbie left the girls and came home early. That night, I realized that it was likely the end of an era with these friends and Abbie would hopefully start to make new friends.

I kept Abbie in Sunday school much longer than I should have with the selfish hope that she could possibly have some type of modified bat mitzvah when she turned thirteen. The rabbi and school staff did all that they could to help, but it ultimately became clear that Abbie was not understanding anything they were covering in Sunday school. I finally made the difficult decision to withdraw her and let go of my hope for a mitzvah ceremony.

She was invited, with us, to her former best friend’s bat mitzvah. Forty-five minutes into the service, she started to say she wanted to leave. Malcolm sat in the hallway of the temple with her until it ended. At the party that followed, there were flashing lights which are another seizure trigger for her. She wanted to go back to the hallway. Instead, I insisted that we stay. I made space for her to sit at our adult table, ate dinner quickly, and then finally admitted that she was miserable. We quietly left the party and drove home in silence. I couldn’t help but imagine a healthy Abbie out on the dance floor with her friends, lost in one of those dances she’d memorized at sleepaway camp — the camp she never got to return to.

For my birthday two years ago, my sisters gave me a digital picture frame. Malcolm and I loaded hundreds of pictures onto the frame and it sits on a ledge in our kitchen. As happy as it makes me, many of the pre-diagnosis photographs are bittersweet. The ones that hit me the hardest are those of Harper and Abbie playing together in the typical ways that sisters who are two years apart do: building a sand castle, taking a bath together, in soccer jerseys after a day where they watched each other play, messily baking cookies, pretending to be teachers reading to their stuffed animal students. But that gradually ended. Harper continued to mature, and Abbie did not. Their relationship has evolved. Harper has become more of a caregiver than a peer to Abbie, and that breaks my heart.

I’ll close with the promise that my next post will be lighter. I’ve learned that there are silver linings to be found if you look for them. Fortunately, I’ve found many for which I am grateful.

In 2nd grade, at the parent teacher conference in the fall, her teacher expressed concern that Abbie was falling behind. We hired a tutor to help after school. One time, Abbie told us that another little girl made a comment along the lines of, “Abbie never knows what to write down on her worksheet.” This happened more than once. Never one to micromanage my kids’ interactions at school, I actually called the little girl’s mom and asked her if she could talk to her daughter. The mother was incredibly kind.

At some point, Abbie started throwing up. The school would call, and Malcolm or I would leave work in DC to pick her up from school. She never seemed ill when we arrived to get her. She threw up with us as well sometimes. At first I thought she had motion sickness like her sister. I started carrying emesis bags with me. I took her to the pediatrician who thought perhaps it was some sort of GI issue, and she suggested we go to a gastroenterologist. Shortly after getting that advice, Abbie had an incident at school where she was in PE, and she wandered out of the gym into the pouring rain and threw up outside. The school called us, and the gym teacher reported that she seemed dazed when this incident occurred.

One of Abbie’s best friend’s was a little girl who lost her brother to DIPG, the deadliest form of childhood brain cancer. Her mother had become a close friend. That night, I stood in my laundry room with the door closed because its adjacent to the kitchen where the kids were. I recounted the incident to her, and she suggested that we go to the emergency room asap to get an MRI. The next morning, I woke up, packed a backpack full of snacks, and drove to Children’s National Medical Center.

When we arrived, the ER was packed. It was December 11, 2019, right before the world would learn about COVID-19. After hours and hours of waiting, we were admitted. In what was by far the scariest moment of my life, I sat in the MRI room as they scanned Abbie’s brain waiting to learn if she had a brain tumor. When I look at the MRI order now it says, “7 year old with concern for seizures”. I don’t recall anyone explaining that to me at the time. All I could think about was whether she had DIPG or some other form of brain cancer.

When I learned that the MRI was normal, I was overcome with relief. I can’t remember all of the details now, but the medical records indicate that another MRI, this time with contrast, was ordered for the next day. This one says, “7 year old with concern for encephalitis.” Again, the findings were relatively normal. Next, a lumbar puncture was ordered, again due to concern for encephalitis. This too was normal.

Finally, it was an EEG that showed irregular brain activity. That was when we first heard the word, epilepsy. Neither I nor Malcolm knew anything at all about epilepsy. Abbie was discharged, and we were sent home with instructions to meet with a neurologist who could prescribe an anti-seizure medication. Naively, we were both incredibly relieved and thought this whole thing could be resolved with a pill.

Academically, while she’s in 8th grade at a special school, her reading, writing and math skills have stalled since her diagnosis in 2nd grade. She’s currently functioning closer to a 3rd/4th grade level in every subject at school rather than an 8th grade level. Her teachers have described her as “consistently inconsistent.” The neurologist has explained that due to irregular brain activity at night, her brain does not consolidate memories of what she learned during the school day. This plays out with her having to be taught the same things over and over again.

Before the surgery, Abbie only took baths because it was safer. She had seizures while showering which resulted in falls. This meant that I was helping a 13-year-old girl bathe. Now, after the surgery, she’s taking showers because the incisions need to be kept clean and rinsed with fresh water rather than bath water. I’m still helping her to ensure that she rinses out the shampoo and cleans her body thoroughly.

While she can dress herself, Abbie often requires assistance in the mornings before school. I suspect this is because her anti-seizure medications have not yet kicked in, and as a result she seems a bit dazed. She cannot tie her own running shoes. She struggles to zip her own hoody and coat at times.

Abbie has one best friend, an incredibly sweet fourteen-year-old boy who is in her class at school. She had other best girlfriends from her prior school before her epilepsy diagnosis, but those relationships were unsustainable. The other little girls continued to mature, while Abbie stayed stuck at age seven. She still has a giant Frozen castle in her bedroom that she does not want to part with. She still periodically plays with things like LOL dolls and American Girl dolls.

Until last week, Abbie slept in the bottom bunk of a bunk bed that we got for her when she was four years old. The bottom bunk was flush to the ground. Against her will, I replaced the bunk bed with a queen bed from Pottery Barn Teen this week. She came to terms with the change once it happened and has adjusted.

My husband, Malcolm, still reads to Abbie every night. They read books that are appropriate for much younger children including an interminable series of books about unicorns. He’s a saint for tolerating those books as long as he did. I could not have done it.

I’m still too scared to lay out here in writing all of my hopes for how the RNS device may change many of the things I’ve described above about our current ground truth. Is it greedy to hope for dramatic changes in her cognition? Is it unrealistic to hope that she could start to show real progress academically? For now, I’ll just say that I’m hoping for seizure control, after seven long years of living with the constant uncertainty of when one will inevitably occur.

Welcome to this space where I plan to chronicle my daughter Abbie’s post-surgery journey and how the Responsive Neurostimulator (made by NeuroPace) will hopefully have a positive effect in decreasing the frequency and severity of her seizures caused by epilepsy. I am not a doctor, and I don’t intend to provide any medical advice here. I’m writing for other non-medical people, primarily for other parents of children with epilepsy.

It has been a very long road to get to February 10th, 2026, the day of the RNS Surgery at Children’s National Medical Center in Washington, DC. I won’t go into all of that now. The TL;DR is that Abbie was a healthy and typical little girl until age seven when she was diagnosed with epilepsy in December 2019, shortly before the COVID-19 pandemic shut down the world.

Since that time, we have attempted to address Abbie’s seizures with about fifteen different medications. While some of the medications may have helped, she continues to have seizures on a regular basis. The seizures have affected her cognition, and in many ways she is frozen in time as a seven-year-old as she approaches her fourteenth birthday in March.

After an unsuccessful eight-month battle with Anthem BCBS to get coverage for the RNS surgery, we switched Abbie to Carefirst BCBS at the beginning of 2026 and the surgery was immediately approved by Carefirst. On February 10th, Abbie was admitted and underwent the 3+ hour surgery to implant the device. She was released from the hospital on the 12th, and she’s been home recovering since then.

The first couple of days at home, she slept a lot. Her eyes were nearly swollen shut from fluid draining while she lay flat resting. Today, she awoke with her eyes slightly less swollen and she’s been walking around the house more and sitting upright which will hopefully allow the swelling to continue to subside.

At the hospital, the kind folks from NeuroPace explained how to transfer data from the device to the cloud where it will ultimately be reviewed by the epileptologist who will be programming the device which will continuously monitor, detect abnormal, pre-seizure activity, and immediately respond with stimulation to interrupt it. For a month following the surgery, the device is only recording information. It is not yet turned on to respond.

We left the hospital with a tablet and a wand that attaches to it. Later that evening, I held the wand over the device and watched as it transferred the data it was collecting to the cloud for a few minutes. A prompt came up on the tablet screen saying, “Data from the neurostimulator was gathered successfully and uploaded to the cloud database.” I was overcome with a feeling of relief and satisfaction knowing that finally, after seven years, the care team will have extensive data about what’s going on in Abbie’s brain and this data can be used to both program the device and inform decisions about medications.

From now, until March 13th when the RNS device will be turned on to respond, we will continue to transfer the data daily. I am incredibly hopeful that this device is going to be life-changing for Abbie and for our family. I’ll keep you posted here as we continue on this journey with the newly implanted RNS device.

.

Subscribe now