It's been a while since we've last posted here at Margins. My co-host Can has been busy with his startup Felt, and I ended up on an incredible startup/acquisition journey with a DTC intimate apparel company called Adore Me. That's right, Can is selling maps and I'm selling bras. That’s how we keep this newsletter free!

Today, I'm going to be writing about something a bit different than our usual content. My daughter, Samaya June Roy-Yang passed away on November 18th, 2023, exactly one year ago today.

She died from a condition called FIRES (Febrile Infection-Related Epilepsy Syndrome). It's a condition where someone with no prior history of seizures, after developing a fever, enters status epilepticus—prolonged or, essentially, non-stop seizures.

I've been needing to write about the whole journey for a while. For longtime readers, thank you again for spending time with us over the years and giving me the privilege of your inbox for something like this.

A few ground rules as we start this post:

• I’ll divide this into first recounting the nightmarish five days of her hospital stay, and then how I’ve been dealing with the grief.

• For reference, my wife is Janie and my 5 year old son is John Jay. They've naturally gone through unimaginable sorrow alongside me, but this post will primarily be an account of my journey. One day, I hope to help them tell their stories.

• This post is long. It’s easier to click the headline Technology and Grieving and read on the web versus trying to read in your inbox.

• If you don’t regularly read my writing, please excuse the casual, sometimes sarcastic tone given the serious nature of the topic. It’s how I write and deal with things.

• I'm going to try to somehow weave the theme of technology throughout. This is a newsletter about the business of technology and I don't want to veer too far away. I've swam pretty far into the griefluencer industrial complex over the past year and in no way aspire for that. Don’t worry, regular readers, there is some talk about Generative AI!

Finally, we’ve launched The Samaya Fund to further research both into FIRES and the intersection of neurology and immunology. I’ll cover it in a bit more detail at the end. We’ve never put button CTAs in our newsletters, but this one time, I’m going to do it. Please email me at ranjan@samayafund.org if you want to know more.

The Samaya Fund

Well, here we go. Wish me luck.

Day 1 - Tuesday, November 14th, 2023

The day began like so many other days in our current post-COVID world. Samaya had a fever that started the prior Friday and lasted through the weekend. Janie stayed home with her on Monday and took her to the pediatrician. We have a running joke that every time we’ve gone to the pediatrician with a kid’s fever, they just ask "is she peeing? Okay, just monitor her." This was the case again.

Tuesday, I stayed home with her. I'm normally in-office, so each call would start with some kind of off-hand joke, especially if the other person was a parent, "Fever, yeah, you know how it is once winter starts." Every parent who is reading I imagine has gone through this routine.

Samaya's fever had mostly subsided that day but she was kind of out of it. She wasn't eating though, and after giving her some Hawaiian Rolls (IYKYK) she threw up. Janie called the pediatrician, and we were given the "just monitor her" again. She was fairly lucid but just had no appetite. I consoled her and after she fell back asleep, I went back to taking calls. I’ve still been working through that guilt.

Rainbow Baobing

Around 4pm, I made her shaved ice. I cook a lot and have an unhealthy obsession with cooking gadgets. The more gears and app connections, the more I’m interested. Janie will uncomfortably smile as I outfit our tiny Manhattan kitchen with ridiculous things like a Combi Steam Oven or a $200 thermometer. I also have a bit of an Asian grandmother personality (or Latin, Italian, or whatever else) where I'm at my happiest concocting some new recipe and seeing my family happily eat it.

I also have an arsenal of Kitchenaid Stand Mixer attachments, and had recently bought a Shaved Ice mixer. For a bit of context, Janie is half-Taiwanese, and we go to Taiwan regularly. She speaks exclusively in Mandarin to our kids and wants to make sure they're truly bilingual. Baobing is a popular Taiwanese dessert where you freeze milk and cream, shave it down, and add fruits, syrups, and other toppings.

Samaya was my cooking buddy. Her favorite thing was probably making pizza (and covering herself in flour), but she was always ready to dive into some new culinary project with me.

She was more hyped over the shaved ice maker than any previous gadget, and we made it for a sleepover she had with her best friend.

Samaya even helped me make this TikTok, and I'll never forget her asking "Daddy, what is that voice?" and I said, "Samaya, that's the TikTok voice." She just kind of nodded.

yornajnar

A post shared by @yornajnar

That afternoon, the last thing she ever ate was some milk shaved ice. She had no appetite, but with every spoonful, she smiled and ate the entire thing.

And the last words she ever spoke to me were about this idea she had for making rainbow baobing. We had started experimenting with incorporating different berries directly into the blend to make them different colors.

She said "Daddy, can we make rainbow baobing this weekend? We'll use strawberries for the red, orange juice for the orange, lemonade for the yellow, and food coloring for the green."

She paused and I said "blueberries for the blue?" She stopped me because we had already tried that and she said it was too “suan 酸” or sour. I always loved when she mixed Mandarin words when talking to me.

She then said for purple we could use grapes. I said, "I'm not sure even purple grapes will really look purple.” And she smiled. She smiled. It was a totally lucid conversation.

That was the last exchange I ever had with my beautiful daughter. I think about it a lot. It reminds me of all the things I did with her. Cooking was one of those things where we spent so much time together. Spend time with your kids. Every one of those moments will really matter. But, Samaya had been talking about making rainbow baobing for over a month and it had been a really busy few weeks for me. I lost that chance.

She fell asleep and looked peaceful.

The Beginning of the End

Janie had put John Jay to bed in a separate room and fallen asleep with him. I laid down next to Samaya and around 10:45pm I noticed she started smacking her lips in an odd way. I tried to wake her up and she was very oddly non-responsive. It was unlike anything I had ever seen with her. Her eyes were open and she was awake, but she couldn't talk. As a parent when your kid is sick, there are so many moments where you try to not over-react and I wasn’t sure what to do. I shook her a bit and she just stared blankly.

I ran over to wake Janie up. Janie kept talking to her, kept shaking her, and there was no response. We picked her up and took her to the bathroom to splash cold water on her. She physically responded but couldn't speak. Janie called 911 and the ambulance came.

Janie went with the EMTs in the ambulance with her. I took this picture, and vividly remember thinking I'd show it to her years later to recount that crazy instance. It's the last time I ever saw her somewhat conscious.

She had a seizure in the ambulance, and as they wheeled her into the hospital, which is only 10 blocks away from our apartment, she had blood and foam coming out of her mouth.

The First Night

I loaded John Jay into a stroller it was faster to walk to the hospital than wait for an Uber. As we walked, I was dictating searches about fevers and seizures in children and saw endless info about "Febrile Seizures". I felt an ounce of comfort, as this seemed to be a somewhat normal thing.

When I got to the hospital, there was a lot of doctors and nurses around her. She had been intubated. A doctor told us, "She's critically ill, but she's stable."

Critically ill.

That night, I still assumed everything would be fine, but those words still stick out to me. It was the first sign this wouldn't be a walk in the park.

Around 230am, they attempted a lumbar puncture (spinal tap) to try to start to check for meningitis or other infections. Something went wrong and they didn't get the sample needed to evaluate these conditions. I took John Jay home around 3am and managed to sleep a few hours. Even with the critically ill comment, if I were to give a Hopefulness Score™, I was still probably around a 9/10.

Febrile seizures were normal. Right?

Day 2 - November 15th, 2023

I went back to the hospital around 7am, and learned that Samaya had another seizure at 322am. There were tubes coming out of her throat and sensors all over her head. We sat by her through the morning. Her eyes were open through the morning, and around 1pm was they closed.

Around 2pm, Janie noticed her foot twitching. She told the doctors, shortly thereafter we saw seizure activity on the EEG monitor. This is when all the more serious discussions started.

Now, a recurring theme in this piece will be about the care we received. Even given the tragic circumstances, I’m not angry. In fact, there were so many doctors and nurses at NYU Langone who were incredibly knowledgable and empathetic and the more we learned, the more we realized this was one of the best places she could be given the circumstances. But, I’ll write about both the good and the bad.

As the serious conversations started, I had begun ChatGPT’ing terms. Some of the doctors were amazing at conveying complex medical concepts into accessible language. Some weren’t. This entire experience solidified my belief that generative AI can help bridge communication gaps in medicine because why shouldn’t every patient be able to understand what’s happening in language accessible to them?

The conversations begin…

The first conversation that took on an incredibly serious tone was a doctor telling us they’d need to insert a central venous catheter (CVC).

Then we had a talk with the neurologist team who explained to us if the seizures continued, they'd have to increase the dosage of anti-seizure drugs and there could be a possibility of a medically induced coma. This is also the first time we ever heard the term FIRES. We didn’t even really process it because the term ‘coma’ was so traumatic that we didn’t realize in a few hours we’d be praying for a coma.

Enter the Rheumatologist

And around 3pm, we had one of the most seemingly innocuous conversations that will live with me forever. After intense discussions with grave-looking doctors, an overly friendly rheumatologist came over and started telling us they would potentially give her Intravenous immunoglobulin (IVIG).

It was one of the oddest experiences, because after hearing about catheters and comas, he went on and on about giving her antibodies from plasma and something called Kawasaki’s Disease. The other doctors seemed to ignore him. When I pressed him on what the risks of IVIG were, he basically said there were very few. I was so confused why he was just so nice and cautious about this seemingly non-critical topic, especially after all the horrible conversations we’d been having.

After that conversation I texted one of my main bro-chats, where the majority of bro-participants are surgeons. I asked what a rheumatologist was as I’d never heard of the field.

It's only after beginning my journey into learning about FIRES, that I’ve realized that conversation was the pivotal moment it became clear this was going to be something far, far different from a febrile seizure. The interaction of the immune system and nervous systems was now part of the equation. This is the moment we were moving away from just anti-seizure medication into immunotherapies.

One of my surgeon friends asked “FIRES?” It turned out he had a friend from high school whose son went through this.

The First Long Night

This is where things started to get really intense. Samaya was physically still at this point, so any seizure activity wouldn't be seen externally but only via her EEG readings.

There were a series of anti-seizure drugs administered in regular and increasing doses.

We sat there as they started with Midazolem. Then there was Ketamine. Then there was Pentobarbitol. Then there was Propfol.

Each time, someone would say something like “Bolus 3mg” and we’d wait. This went on for hours. At first the seizure activity was showing no signs of stopping, but then as the harder medications were administered, we’d see moments of respite. Those lines would calm down for a moment. And then they’d be back.

I've written before how I love financial graphs and charts. That embedded in every set of chart lines lives a true story. Unfortunately for me, that night, those charts told the worst story. Samaya's brain simply could not rest. I have stared at charts almost daily since I began trading in 2002, but for a few months after this all went down, opening any kind of chart was genuinely traumatizing.

My Hopefulness Score™ had dropped to probably a 5/10.

The Nurses

Throughout all this were the incredible nurses. Those first few nights there was a nurse named Jess who, long after most others had left, was running around the room, taking vitals, checking medications, and consoling us. She was apparently supposed to have the next few days off, but came back to work for the next few nights. Janie and I still talk about her.

Day 3 - November 16th, 2023

Samaya 'achieved' a stable comatose status in the early hours of Day 3. There was an overnight PICU doctor who came in and we were chatting with her. I brought up the term FIRES and she said, "Don't google FIRES."

Of course, after that initial conversation with the neurologists about 18 hours earlier, I had already googled FIRES.

The first featured snippet indicated the outcome of FIRES ‘can be poor’:

The second featured snippet was a bit more intense. It said mortality rates were up to 30% with a 66-100% chance of long-term cognitive impairment. I didn't tell Janie right away what I had seen.

I think I slept a few hours. I also realized, I'm a pacer. I would just pace back and forth through the hallways. I’d step outside the hospital and pace on the sidewalk as very early morning commuters passed me. I wonder how often those commuters see someone outside the hospital pacing and crying.

One of the most fascinating things about the entrance to the NYU Children's Hospital is a giant dalmatian statue with a taxi balanced on the tip of its nose (this is not AI, this is real).

Both Samaya and John Jay were born at this same hospital. The dog was apparently built in May 2018, which makes sense, because I didn't remember it when Samaya was born on December 13th, 2016. When John Jay was born on April 18, 2019, I vividly remember Samaya and I walking outside and her loving this crazy statue.

The creator had said:

“It’s a privilege to be able to do this for the kids. I wanted to make something so astounding it would distract even those arriving for the most serious procedures, and so lovable that young patients coming back again and again with chronic conditions would see it as an old friend."

It really did help. John Jay always comments on it when we pass the statue driving by on the FDR. He still doesn't know this is where his sister died.

A diagnosis of exclusion

Day 3 seemed....okay? Yes, she was in a medical coma but a very senior doctor who had been brought in seemed to reassure us. Of course, there were plenty of caveats around potential brain damage, but in these types of rare cases, this was not unprecedented. He told us a story about a patient who recovered from FIRES and, while in a separate schooling process, the patient recently went skiing with his family. That patient was apparently in a medical coma for months.

Samaya was taken in for an MRI and everything came back 'clean', which both seemed 'good' but also reinforced that this could likely fall into the FIRES category. FIRES is a 'diagnosis of exclusion' meaning you don't diagnose "this patient has FIRES" but instead, when you can't pinpoint any other cause attributed to the specific sequence of events, it's FIRES.

That day still seemed okay. My sister came up from Boston. My mother-in-law flew in all the way from Asia. Our nanny had been watching John Jay, and now a bunch of family were coming in to keep an eye on him. Everyone kept telling Janie and me to sleep. I was able to. She still couldn't.

Code Blue

Around 8pm, there was a bunch of doctors in the room and they were doing an echocardiogram. I remember thinking it looked like those first doctor's visits when Janie was pregnant and we'd see Samaya's tiny body in the sonogram.

That's when things really went south.

Suddenly, there was a lot of beeping. A lot of commotion. Her heart rate had dropped and doctors started yelling she had lost her pulse. A bunch of people started rushing into the room and it felt like a medical drama on TV. We were still in the room when the chest compressions started but were then ushered out.

This moment was as bad as you can imagine. Alarms blaring. Incessant beeping. A booming chorus of voices that balanced panic and professionalism. Lots of people counting out loud. And in the middle of it all was tiny Samaya. So many of the other moments that week were slow, drawn out, painful things, but this was just so awful.

Doctors and social workers stood by us in the hallway. Janie fell to the ground. There was a pediatric critical care doctor who dropped down next to Janie and helped her breathe while tightly grabbing her hand.

For six minutes, Samaya had no pulse. It came back. I later learned the term ROSC (Return of Spontaneous Circulation).

Her heart was still pumping but it wasn’t effectively functioning with the rest of her body. Some doctors said some stuff but my brain was in a fog. I felt completely helpless.

Someone pushed over some kind of computer on wheels. I later learned these are actually called COWs (computer on wheels). They told me they needed to put her on something called ECMO. They said something about given how dysfunctional her heart and lungs were, the ECMO machine would act as an artificial system. It stands for Extracorporeal Membrane Oxygenation which kind of gets to the point.

At that moment, I asked if we could please speak to one of the previous critical care doctors we liked and trusted. Instead I got an aggressive response, "we don't have time for this." So, I signed some digital screen with some kind of stylus, and we agreed to whatever ECMO was.

Day 4 - November 17th, 2023

While Samaya was in surgery to be 'cannulated', I asked a few different doctor friends about ECMO. The reactions were consistent. Up until that point, I got a lot of "think positive thoughts", "kids are resilient", and "it'll be okay’s." This was the first moment I got a bunch of "oh shit’s.” I remember finding this WSJ article from a month prior which reaffirmed it was only for the sickest patients. The article had an image of big tubes by a patient's bedside, but nothing prepared me for walking into the room.

This picture is from the WSJ article and not of Samaya because I just can’t bring myself to share the photos of Samaya’s little body with those giant tubes coming out of her. I guess, that is the point of the machine, to act as an external heart and lung system, but my god, was that shocking.

My Machine

So to give my layman's summary of where we were right now (confirmed by poring over 1200 pages of medical records with a combination of Writer’s Palmyra Med and Claude), when Samaya's seizure activity would not stop, they had to give her more and more medication (the ketamine, pentobarbitol, propofol etc.) The sequential problems from the heavy medication were things like propylene glycol toxicity and lactic acidosis. Her internal organs were just not working.

Once she was on ECMO, there was another conversation with a friendly doctor from Spain. So many doctors. Many of them, including this one, were genuinely caring, friendly, and tried their best to explain what they were thinking and doing. But there were just so many doctors.

This doctor would be implementing CRRT or Continuous Renal Replacement Therapy. She proudly kept referring to this external, artificial kidney as "my machine" and seemed reassuring about her “machine helping Samaya” and clearing the toxins in Samaya's blood that her kidneys no longer could.

More wires. More machines. She was still with us, yet her heart, lungs, and kidneys were all replaced with machines outside her body. It was bad. My Hopefulness Score™ was maybe at a 2/10 at this point.

I paced and paced. I just stared at the monitors on the walls, seeing if she still had a heart rate and baseline oxygen levels. Just staring at charts. Pacing and staring at charts.

The first "conversation"

Around 11am, the older, experienced doctor called us into his office. The day before he had seemed a bit positive. Today he seemed somber. This felt a bit like "the conversation" without officially being the conversation. All night we were dealing with internal organ issues, but he took us in a whole other direction. Her EEGs were showing almost no cerebral activity. He very cautiously used the term 'brain death' while reinforcing we were not there yet.

I think it's in how he spoke. He looked sad. I'm sure this man has seen some shit over the years, but he genuinely looked sad.

Janie and I walked to a waiting room and cried together. I said "she's gone" a few times. But she wasn't gone yet.

Hopefulness Score™: 1/10.

The last night

That night is a bit of a blur. As one can imagine, the connections of an artificial heart, lungs, and kidneys with two completely distinct systems (ECMO and CRRT) is complex to say the least. There were nonstop issues with the machines. There were doctors and nurses untangling and re-plugging in endless wires.

Another thing that happened was her body started to swell. Like, really swell. There were so many machines and wires, but you could see her face ballooning up. Her blood vessels were leaking into her tissues with the official term being facial edema. Giant tubes. Her body and face was so swollen.

A few days later, when we had to coordinate her body being transported from the morgue to the funeral home, they send you a picture of the deceased to confirm it's actually them. The morgue guy on the phone warned me before sending the photo that it might be traumatic. I told him I already knew.

There was another code situation late into the night. They turned of the CRRT after that. There was almost no brain activity, except for a few bursts of seizures.

Day 5 - November 18th, 2023

That morning, during the rounds, one of our favorite PICU doctors walked up to Janie and gave her a hug. I saw some tears from her.

Hopefulness Score™ officially was 0/10.

Up until that point, almost all 'the conversations' were in the waiting areas or Samaya's hospital room. That morning we were asked to go to a conference room.

Janie, my sister, my mother-in-law, and me all sat on one side of a table. I remember maybe four doctors across from us. They walked through everything. The complications from the medications. The lack of brain activity. They explained how they could slowly remove the ECMO and any other life-sustaining technologies. There was a Do-Not-Resuscitate order we'd need to agree to.

I tried to remain composed. It's almost comical to me in hindsight, but the deep-brain-business-MBA in me uttered something about "we agree and assume will certainly be some procedural questions along the way." I think the doctors just kind of stared at me. I genuinely wonder what other people say when you agree to let your child die.

And then I looked out the window and saw the East River. It was a sunny morning. Samaya was born at the same hospital, and this was almost the exact same view we had that night in December 2016 when Janie and I first held her tiny body in our arms. She was our firstborn and we were nervous. But she made us feel everything would be okay.

Yeah, that view and memory was the end of my attempt at feigned composure. The doctors left the four of us in the room.

Goodbye

Over the next few hours, friends and family went into the room to say goodbye. Then around 2pm we all gathered together in the room. This might sound weird but it was the most beautiful of goodbyes. Samaya had this way of bringing beauty and poignancy to so many around her, and even in her final moments, she delivered that same energy.

I can’t bring myself to share photos from that moment, but instead here is Samaya asleep with a green hair attachment thing a friend had given her. She was growing up. But more important, she has her pink blanket she called bùbù (Chinese word for cloth). It was gifted to her by a former client of mine when she was born and she held that thing every day of her life. It laid over her body as the doctors started unplugging the machines. The whole thing felt properly funereal.

I think it was on Day 2 that a friend had brought over a bluetooth speaker. We had been playing music for Samaya throughout this nightmare and I wondered what should be her parting song. She loved Let It Go, but it didn’t feel quite right.

Samaya had always loved You Are My Sunshine. There was a version by a folk singer named Elizabeth Mitchell we had found on Spotify and Samaya would always sing it in the car. She loved to memorize song lyrics. I remember when she was memorizing Let It Go, I told her that the 'frozen fractals' verse was too hard and she said "Daddy, I always know all the words." My little girl knew all the words.

Around 2pm, as our family and friends gathered in the room, and Janie kneeled by Samaya and I stood behind her, I put on You Are My Sunshine, making sure to hit the Spotify repeat button twice.

There's the first verse we all know well. We sang it in elementary school. It's the joy and happiness we all associate with the song:

You are my sunshine, my only sunshine

You make me happy, when skies are gray

You'll never know, dear, how much I love you

Please don't take my sunshine away

What I will never forget is, mentally registering the second verse as we stood there. As the machines were unplugged, and that caring PICU doctor knelt next to Samaya and listened to her heartbeat with a stethoscope until it forever stopped at 2:18pm on November 18th, 2023, that was the first time I actually thought about the words in the second verse:

The other night, dear, as I lay sleeping

I dreamed I held you, in my arms

When I awoke, dear, I was mistaken

So I hung my head and cried

There were plenty of times I’d be sitting in the front seat of our car as Samaya sang this song. I even remember smiling a bit as she'd go into the second verse and thinking "my little girl knows all the words." But I never actually thought about its meaning.

From a bit of searching, I later learned that the second verse (and sometimes there’s a 3rd and 4th) is usually sanitized out of the happy kids versions.

The song was not just about love but about loss. Part of loving someone so much can be grief and loss. And it’s okay. The grief is so strong because the love was so strong. And in that moment, Samaya sent me the message we could and should still feel her sunshine, even amidst the grief. Somehow, even as her brain had long stopped working, and her heart beat its final beats, she made sure to remind us we'd be okay.

The After

Everyone waited around the hospital for a few hours as we moved her body to be transported to the morgue for an autopsy. We had a conversation with a social worker who read off a script. We had a conversation with a friendly counselor who talked about how to tell John Jay his sister had died. We signed some forms. We headed home.

That night, we gathered with our family members who were in town at our apartment. We drank some wine. We talked about Samaya. We talked about other things. We cried.

Waking up the next morning was tough. It was surreal. A friend had dropped off some jugs of coffee at our doorstep. Food delivery seemed to be the most common thing from friends in the subsequent days and I get it. There's so little you can do but you want to do something. A bunch of business school friends pooled together a Grubhub gift card (and I confirmed later, they were very cognizant to not make it Doordash).

How to Grieve

And thus began the grieving process. I still think about this illustration one of the art directors at my company sent me:

Therapy. Books. Podcasts. Conversations. I started trying to process things.

Messages

People sent messages. Lots of messages. If I didn’t respond at the time, I’m genuinely sorry, but I know you get it. I had previously never quite realized the power of the emoji reaction and viewed them as a cop-out to communication. But in this case, the heart emoji reaction became my go-to ❤️. It simply told the sender, I’m still here.

Most of the messages fell into the “I can’t imagine” and “I have no words” category. That’s why I’m writing this. So I can help you try to imagine and tell you in my own words. Some of the words that impacted me most positively fell into the category of Robin Williams in Good Will Hunting delivering the classic “it’s not your fault.”

I went to dinner with a friend of a friend whose son had FIRES. I made a comment about how Samaya had noticeably ‘spaced out’ a few times and maybe we should’ve caught potential seizure activity. She looked straight at me and said that’s wouldn’t have changed anything with FIRES. One of the comments that I think about to this day was a doctor friend saying, “you could’ve been given the exact date this would happen a month in advance and it wouldn’t change anything.”

The loss is tough. The guilt is tough, too. People have really helped.

The other perfect thing to say was “we know Samaya was loved” or “we know Samaya was a happy kid.” I remember my sister and mother-in-law both saying this, independently, at the hospital. That’s all I ever want to know for certain. Her time was brief but it was full of love and happiness.

I think she was happy.

Relative Grief

Another thing I noticed was a lot of comments in the category where someone shared a story of grief with the caveat “I know yours is so much worse.” I want to write here that, it’s okay. You don’t need to say that.

My grief is so specific. It’s gargantuan, but it’s specific. Samaya was almost 7 so there were so many clear memories. She was just at that age where you started to get real glimpses about who she’d be as she grew up. She wanted to be a ballerina.

That hospital stay ravaged us in its brevity, but would a long hospital stay be worse? The median hospitalization from FIRES is 87 days. Would a long drawn out stay that still ended in tragedy taken an even greater toll on us?

I don’t know the answer to any of these questions, but what I have learned is grief is grief, and those people who surprised me with stories that they had been living with grief right under my eyes, those really helped. Sure, if someone told me “I get your pain, my goldfish recently died,” I might not be quite as understanding, but my main takeaway from this journey has been to try harder to recognize the grieving that may exist behind someone’s daily life.

Online Communities

It wasn’t just people I personally know. I’ve been a longtime Redditor and in September 2021 I wrote in this newsletter:

"Reddit is probably the social platform that has brought me the most uncomplicated joy over the past decade."

I had been a regular reader of r/daddit as we raised our kids and that afternoon, I posted this:

Seriously, read through the replies. It’s incredible. It was so perfect at that moment. Over the next few days, reading through helpful, caring responses was such an amazing complement to the IRL love. A friendly reminder, please don’t screw up Reddit.

The Funeral

Right away we had to start planning the funeral. I gave a bunch of specifications to a coworker and friend who called around and made a Google Sheet of options. It might sound ridiculous, adding comments back and forth on a Google Sheet helping, but those little acts of routine with familiar tools really helped. I never thought of Google Sheets as exactly therapeutic, but here we are.

I’m glad I had someone helping me because from initial searches I ended up with reviews like this (I’ll admit I laughed):

We found a funeral home about 20 miles from us. Samaya would be cremated and we could choose some items to send her off with. We debated over what to do with her blanket and ended up cutting it in half. Half went in with her, and our half is still in our bed every night.

We chose some books. Samaya had gotten this book from a classmate for her birthday and had started getting into telling jokes.

She always loved me asking Alexa to tell us a joke. When she was younger she would have no idea what the joke was about, but if I laughed, she’d laugh.

We weren’t planning on flipping the switch to start the fire after the coffin was inserted into the cremation chamber, but they asked us if we wanted to, and in that moment, Janie and I stood together and sent her off.

How We Remember

We held a memorial for Samaya on December 2nd. It was held at her school, Avenues The World School, where Janie has worked for over a decade and John Jay is now a kindergartner. The entire community was so incredibly supportive throughout this. The school let us use the gymnasium and provided all the food and logistics to bring over 200 people together to celebrate Samaya.

This whole experience made me realize just how valuable it is to have coworkers who truly care for you. I feel genuinely #blessed about my family and friends, but we also spend so much our lives at work. To have that additional layer of support from this other group of people makes such a difference. Thinking about going back to work as a respite rather than a responsibility makes such a difference. And you know when your coworkers really know you.

Janie’s coworkers were also so supportive during this, and with some of the other parents, dedicated a playground at the school in Samaya’s honor. They arranged flowers there today.

Editing Videos

In those first days, I couldn’t watch any videos of her. It was too painful. Photos were slowly becoming okay, but videos were too visceral. The organizers insisted we didn’t have to prepare anything, but I was not about to turn down the chance to create some content to celebrate Samaya.

I’ve long enjoyed toying around with video editing and I had started using an app called Videoleap about a month before Samaya passed. Around Halloween, Samaya and I were playing around with it—we were going to be Spidey & His Amazing Friends and she was going to be Ghost Spider (I know…😢). She asked if could create a video of Samaya talking to Ghost Spider.

It’s…a work in progress that we’ll never get to finish. Samaya wrote down her script on a post-it and put it on the floor. That high-five at the end 😆. It’s so beautiful, and probably a bit haunting, for me.

I was determined to make some videos for the memorial. I’m still not sure if this was the right approach, and perhaps therapy sessions years from now will indicate otherwise, but it turned into some sort of grief bootcamp. I ended up going through pretty much every single photo and video we ever had of her. Watching them multiple times. It started incredibly painful but after a while it became cathartic.

Hours and hours of sifting through photos and videos to make something we felt captured Samaya. After a while, Janie got into it too, as she wanted to handle the video of Samaya and her school friends (as she knew everyone far more closely). I found this picture I took of her late into one of the nights:

We created a few videos, including the You Are My Sunshine one above and this one below of her “early years”. Looking back at the title, it’s a cold reminder of how young she was taken from us.

The song is Yellow, the Chinese version, from the Crazy Rich Asians soundtrack. Samaya knew all the words.

I think it helped me.

Making Memories

As the months have passed, I’ve thought a lot about how we remember. The memories that live purely in your head versus those triggered by photos and videos. I learned there are Spontaneous or Voluntary recall memories which are driven by pure internal retrieval. Apparently, these activate the prefrontal cortex and hippocampus and are more focused on the information retrieval.

Memories triggered by photos and videos trigger Cue-dependent recall and more actively engage the amygdala and evoke emotions. Basically, photo-triggered memories are supposed to be more emotionally evocative.

In some ways, I get it. If I want to spend time remembering Samaya, it’s a lot easier to just pull up some albums and sift through photos and remember the associated moments. But there’s also something stronger for me when I just take a moment and think about her.

How we remember is something I’ve thought a lot about in relation to technology. I have thousands of photos and videos to help me. I think about what it must’ve been like to lose a child a century ago. Maybe you’d have a photo. What about a few centuries ago? How did people preserve the memories? Were they as strong?

While we haven’t been writing Margins for a while, I have been guest-hosting the Big Technology podcast with Alex Kantrowitz on Fridays. On the February 2nd episode, we were talking to Joanna Stern of the WSJ about her experiences with the Apple Vision Pro (remember that whole thing?).

Around 26:31, she brings up how technology like the Vision Pro, combined with AI, could change how we think about preserving the memory of people and the afterlife. It took everything to maintain my composure and I wasn’t ready to talk publicly about Samaya, but this is something I had been thinking about.

If Apple had only released spatial video capabilities on the iPhone just a bit earlier could I have more immersive memories? I had created a deepfake of my own voice on Descript, and Samaya wanted me to create one for her. Unfortunately, the sample paragraph you had to read was too complex and I didn’t push it. Would I want to have her voice like that? I probably could if I tried now but really don’t want to. Is that so different from having all the videos I have the privilege of owning in 2024? I’ve been toying a bunch with AI music, but the one subject I won’t make an AI song about is Samaya. Needless to say, there are a lot of questions that are going to be really weird and complex in the coming years around how we remember. These are the Margins-y things I think about a lot.

And the memories are all I have now.

The Music

Well, that and the music.

Music has always been a big part of my life. My dad played guitar and I still have his 1974 Fender Mustang up on my wall next to my Gibson SG and Yamaha acoustic. In the days after, all the music hit extra hard. In the immortal words of Wesley Snipes, you really move from hearing to listening. Every lyric, every chord, every note. You feel it.

My Spotify searches became things like “music for grief” or “songs about losing loved ones”. I wondered if I’d get some kind of “please seek help” notification (there weren’t any). I made a grieving playlist. That Wiz Khalifa Paul Walker tribute song was good. Forever Young by Bob Dylan and Keep Me in Your Heart by Warren Zevon worked. I’ll admit it, I’ll Be Missing You by Diddy is on there (it was before we really knew everything!).

But there really aren’t that many songs about losing a child. I guess that’s a good thing. There was one, Who You’d Be Today by Kenny Chesney that captures things pretty accurately, but the gold standard has to be Tears In Heaven by Eric Clapton. I learned to play this years ago and remembered the story of Clapton losing his 4 year old son. I remembered it well enough that I couldn’t listen to the song for a few weeks. When I did, it delivered.

There was this one video, where Clapton debuts it live on a news program. I could not get over it. I checked the dates and it was six months after his son died. To go in front of the world and deliver something like this astounds me. As I’m writing this piece, I keep thinking of him doing this. Thank you, Eric.

Music and Samaya

But music isn’t just for healing. It was such an integral part of my time with Samaya. We’d sit in our little music corner. She had started to really get into this singing app called Yousician where you sing and it scores you. There’s an intro-level song called “Oh no!” where she got a perfect score and was so proud of herself. “I got ALL the stars, Daddy!” I’ve still been using the app but I can’t ever do this song again. I don’t want to lose that score.

And then there were the movies. Frozen and Let it Go were naturally up there, but Sing and Sing 2 were our family favorites. It’s about a bunch of animal characters that put on grand musical shows.

There was a “prickly teenage porcupine with a punk rock attitude” named Ash (voiced by Scarlett Johansson). Samaya absolutely loved the song Set It All Free. Watching this video just guts me, but I’ve watched it hundreds of times. The way she looks at me a few times. Even details like, she learned how to scroll the trackpad. She’s learned to read and is reading lyrics in real time. When I stomp my foot, she responds with clapping. This is my favorite video.

As a family, we’d dance along and mimic some of the scenes from Sing 2. There’s a dance battle featuring a British-accented mountain gorilla named Johnny that would get us all involved.

But there’s a scene at the end of Sing 2 that would feature Samaya and me.

There is a curmudgeonly, leather jacket-clad lion named Clay Calloway (voiced by Bono) who was a former rock star that withdrew from the world after his lioness wife died. He’s been brought out of retirement for the grand show, and is supposed to do a duet with Ash.

Ash is starting to sing U2’s “Still Haven’t Found What I’m Looking For” while Clay is backstage. He’s nervous and afraid to go onstage. Around 0:50 he has a vision of his deceased wife, who nods at him to let him know that it’s okay to go out there. When we’d recreate this, it made me uncomfortable when Samaya once exclaimed “that’s his dead wife!” I wasn’t sure how to talk to her about death.

I’m not going to say that the “go ahead, it’s okay” ghost-lioness head nodis my inspiration in writing this post, but I do know that if Samaya was next to me right now, she’d say, “go ahead Daddy, it’s okay.”

Calloway walks out on stage. Samaya and I would mirror their movements, our height difference about on par with the lion and the porcupine. Around 1:41, I’d lean down and we’d sing face-to-face. Around 2:11, we’d stand back-to-back. Usually, we’d just pretend to play instruments, but sometimes, when we were ambitious, she’d hold a ukelele and I’d grab an electric guitar. And we’d laugh and we’d sing.

I miss her.

And After

We had a trip planned to LA in mid-December. Janie’s close friend was getting married and we were going to celebrate Samaya’s birthday at Disneyland. We went.

We went to the wedding. It was good for Janie to see so close friends. At dinner, someone who didn’t really know us asked me, “have you ever thought about having a second kid?” That was one of the first moments where I had to make the split-second decision of “do I get into it?” At that moment I didn’t. Sometimes, depending on the moment, I do.

We were having dinner at some chain crab shack the night before Disneyland and an odd guy that resembled Kip from Napoleon Dynamite came over and asked if we wanted a picture. He said he was from the restaurant and Janie said to go ahead. It got a bit weird because after he took this picture, he asked Janie and me “do you want to kiss for a picture?” We declined.

We have this picture on our fridge. It’s the first family picture where she is really just not there. There’s a bit of guilt that we’re all smiling, but it also reminds me that we’re letting her knows we’re still going. We haven’t given up.

And Time Passes

I thought all of this happening in the dead of winter would make those first few months exponentially tougher. The darkness of it all. But as Spring came, I realized it was a different kind of tough. As kids started filling the playgrounds where she’d play, and we started going back to the places where she’d go, it was a whole new set of dormant memories triggered.

We’re still living in the same apartment in Peter Cooper Village. A lot of people asked us if we’d move, either apartments or even cities, to help move on. But I like having the memories triggered. I want to remember it.

Samaya was a New York City kid. She insisted on using her Metrocard every morning to buy her bus ticket for the M23 crosstown bus even though I told her the cops probably wouldn’t ticket her.

She Was Growing Up

All the NYC kid memories you might imagine. The Natural History Museum. The Central Park Zoo. We spent a lot of time in the East River parks. In recent years, there were so many playdates and birthday parties with her friends.

There was that sleepover she had with one of her best friends, Natalia, just a few weeks before this all happened. It the biggest deal ever for her. She sent her a video invite. She wrote out all these signs around the house. It’s all she talked about for a few weeks.

The event lived up to the billing. There were movies and baobing and dancing an dress-up and a lot of chaos coming from the kids room. The next morning Natalia’s dad came to pick her up. They had prepared a whole performance thing, and he was in a rush. But he sat down, and we all watched them do some kind of musical number. He still talks to me about how that tiny decision now carries so much meaning.

That silly little sleepover will remain one of the more significant moments in Samaya’s life. In her short memory and life, it mattered. It mattered so much.

Shelter-in-Place

When she was 6 months we moved to Stuytown / Peter Cooper Village and have lived there ever since. For those who don’t know, there’s a lot of green space in the complex. It was a life-saver during COVID. We’d sit right outside our apartment in a field, sometimes for hours on end. I remember hitting send on the Doordash piece while in a portable chair outside as John Jay and Samaya played. So many memories in Stuytown.

When Samaya was born, my startup, Informerly, was on its last legs. I had started consulting and had a pretty flexible schedule. Then the pandemic hit. I almost look at it as a blessing now, because it meant I got to spend so much more time with her. At the time, with two toddlers in a NYC apartment, it was certainly stressful, but looking back, I am so thankful for that time.

Samaya loved to cheer every night at 7pm for healthcare and essential workers. She’d remind us every evening a few minutes before. Remember that whole thing?

Spend Time With Them

Which brings me towards the end of this post. This has been the worst journey imaginable, but one of the few things that keeps me going is the memories. There are so many memories. We spent time. We laughed. We hugged. We danced. We sang. We read. We cooked. There were tantrums. I watched her start to grow up.

Make the memories. Keep making the memories.

I know things can get busy. I’m guessing most Margins’ readers are doing some important professional things. In the past three years, my work got a lot busier (those bras ain’t gonna sell themselves!) while Samaya’s school and friends’ life started taking more shape. It was less time together.

Make that effort. Focus on your kids. Pay attention. I’m not pretending I was ever perfect at this, and even as I’m writing this newsletter, John Jay is hovering around me. It’s not easy!

But for those moments, when you start to feel your focus being drawn away from your kids, when that phone notification or outstanding email starts to distract, maybe say “Samaya” in your head. Her name, after all, is connected to Buddhism meaning a sacred vow.

All you have are the moments and the memories.

Samaya’s Bench

We spread some of Samaya’s ashes in the East River right near our house. There’s a bench at the very end, around maybe 21st street. We call it Samaya’s Bench. It’s where Janie is sitting there on the far right with the black jacket, and if you follow me on Strava, you’ll see its where I always end my runs. I sit there and listen to our songs. I think about her. I remember her. I miss her.

The Samaya Fund

If you’ve made it this far, thank you.

Right after Samaya passed, we talked about starting a fund. My same coworker friend who had done the Funeral Google Sheets for me started working with our corporate lawyers, who took on the incorporation pro-bono.

There were a lot of conversations. With medical researchers and professionals, with other bereaved parents who had started similar things, and with people focused on healthcare innovation. It was quickly clear, this was not something to rush into. We needed to find something that we could genuinely see as relevant and important in the long-term.

Janie and I were connected with the NORSE Institute and an incredible woman named Nora Wang whose own son had passed years earlier. This was the only organization focused on NORSE (which FIRES is a subset of, you can read my layperson’s glossary here. There are a lot of acronyms.) Through the NORSE Institute, we’ve been connected to other families who have gone through the same thing. Those family Zoom sessions are probably the most therapeutic thing I’ve experienced so far. We will definitely continue working with this organization.

But in many of those early conversations, that exchange with the rheumatologist kept coming back to me. That’s when it was no longer just epilepsy. FIRES is one of the most extreme interactions of the immune and nervous systems, but we are just beginning to understand the connections between the two. Neuroimmunology only became a field a few decades ago. There have been major breakthroughs within the last decade changing how we think about these systems. Technology is helping us understand how these systems interact in completely new ways.

What started with Samaya’s journey is something I’m excited to work on for the years to come, and I’m sure you’ll be hearing a lot from me on this (yes, there will be a newsletter). Please learn more here at SamayaFund.org.