Hello, my Substack peeps,

My conversation with Kellie and Erin on the P-I-G podcast was just released. And before I gear up to start running the gauntlet of captions and hooks and hashtags and what-nots that literally hurt my brain, I wanted to come here first where you all appreciate simple words, from the heart, on a page.

From the time we recorded this episode a couple of weeks ago, I anticipated this day. I have shared my story of losing Chandler many times, in writing and out loud. But during this podcast, they asked me a question that opened the door. And I walked through it.

I talked about what happened to Chandler on his last day. For the first time.

I wrote about it here. It was actually my first Substack post. But saying it, that is a different kind of vulnerability.

Why talk about it? Why go through that? Why not stick to the bigger story of grief and hope?

Because this isn’t just our story. And it needs to be heard. My desire is for Chandler’s story to land in places where vocations and avocations intersect with sacred final moments. Those moments will live forever in the minds and hearts and bodies of families who were present. It matters how professionals and paraprofessionals show up. Get me in rooms with those people and let me inspire, not scold, INSPIRE. Humans hold tremendous power in those final moments. I believe one inspiring story told to the people who can make a difference has the power to change the narrative for countless families.

I’m grateful that somehow I’m able to help others just by being willing to share my story. Not only a story of grief and profound loss, but also a story of discovering that grief and joy co-exist. And when that feels impossible…

Maybe we can just be willing to be willing…yes, I meant to say it twice…to be open to the possibility of joy. And that, just that, is a small step forward.

Lisa

Listen to the P-I-G Podcast

*Quotes in bold italics are taken directly from First, Brush Your Teeth—Grief and Hope in Real Time.

May 11, 2019. The day before my first Mother’s Day without Chandler.

When you lose someone you love, an undercurrent of fear about the coming year of firsts takes residence. It starts as a simmer. Then as each of the “firsts” approaches—first Mother’s Day or Father’s Day, first birthday, first Thanksgiving, first Christmas— the simmer becomes a slow boil, rising higher and hotter with each passing day, moving you toward THE day. That first one without them. You’re sure you won’t survive that day. But you also know, logically, that you actually will. Probably. You just cannot fathom how.

Mother’s Day had the audacity to arrive just four months after kissing my boy goodbye, stroking his cheek, holding his hand.

My kids left the door wide open— “Mom, what do you want to do for Mother’s Day?” The plan fell into place.

But the day before. What then?

Don’t ask me how it crossed my path, but somehow I spotted a Facebook ad for a FREE goat yoga event on May 11 near where I live. Not sure how goat yoga came to be nor exactly how said goats would be participating in the yoga. But, intrigued, I further investigated. I asked my daughter Charli if she’d be down to try it, and she was in.

I was skeptical at first because I learned that most goat yoga events are at least $35, so why was this one free?

“My suspicion was that we would show up and find we had the B-list goats—the ones that were too old or too heavy to jump up on our back and play. Or maybe the narcoleptic goats that fall over asleep when startled.”

I was wrong.

From the git go, those baby goats were frolicking, eating pony tails, hopping on backs, and loudly voicing their opinions.

“One of the goats seemed to have a case of mistaken species identity—he really LOVED the lady in the front row. They may have exchanged numbers.”

I decided then and there that perhaps the cure to all humanity’s ills is most certainly goat yoga. It was one of the most joyful experiences, together with my girl Charli. On the day before the day.

You can’t do goat yoga without working up an appetite. Next stop was Stacks for breakfast, where I decided to honor deliciousness over health. Not to say you can’t have both. Just not this day. We ordered a few things to share, all floating in some manner of fat alongside generous portions of sweetness. The guava French toast with toffee syrup full of actual toffee bits…

“It was…oh, I don’t even know a word for it. I just know my eyes rolled back, and I left my body for a minute after the first bite.”

The day ended with hot yoga, sans baby goats. The real kind of hot yoga, mind you. Not the kind elicited by my own personal hot flashes during down dog. The word I chose for the day, and for my time of moving prayer on that mat…JOY. The bracelet I was wearing, gifted me by a friend just weeks before… “Choose Joy.” The scripture that kept running through my mind all day— “The joy of the Lord is my strength” Nehemiah 8:10.

Today, May 9, 2026, I heard each of my kids—yes, I will call them that forever—and my grandbabies call me by the most precious names that bring joy to my heart.

Mom.

Mimi.

There’s one voice I would give anything to hear again.

The one belonging to my sweet boy. He never hesitated to say, “I love you, Mom.” I always looked forward to his beautiful words to me on my birthday and Mother’s Day. Four of those words live on my forearm in his handwriting.

There will never come a Mother’s Day that I don’t feel the sting. The missing. The longing for one more Chandler hug.

And there will never come a Mother’s Day when I am not abundantly eternally grateful for the gift of being Mom to Chase, Chance, Chandler and Charli. They are my best thing. And Karen and Lauren, the remarkable women who love my sons—they are the gift you always pray for.

I will close today’s writing the same way I closed it on May 11, 2019. With the truth, the reality, that carried me then and continues to sustain me.

“I began this day with such joy. I will end this day remembering that whatever comes my way, I have a God who is with me, who will carry me through the hardest times, and who is able to plant seeds of joy in the soil of sadness.”

I’ve never been someone who grabs a requisite morning coffee to get going. Not because of some notable character trait. But because coffee can make me jittery and, how do I say this…make me crap my pants. That is problematic. And I tend to shy away from it.

I do, however, have a special bag of coffee beans tucked away in my pantry for the days when a decaf cold-brew sounds like it would hit the spot. The message on the package welcomes me into the world of coffee where I would otherwise be a gastro-distressed interloper. It says — Low-Acid Decaf.

I know, I know. What the heck is the point of that?!!! It’s like saying, “I’ll have a cheeseburger, but hold the cheese, and no meat or bun please.”

You see, the aforementioned gut issue doesn’t just lie in the “caf.” It’s also in the acid. And when you add the dairy on top of it for a nice latte situation, game on. Or off, as the case may be.

Out of the mouths of babes…

Which reminds me of a nugget of related wisdom offered by my son Chandler when he was just a little guy with the cutest lisp. “Jethuth and God don’t get diarrhea.” Which clearly means they can enjoy the occasional iced mocha with no issues.

But I digress.

When someone at work would make a “Starbucks run,” I could never resist. Knowing full well the probable consequences was not enough to deter me from responding cheerily, “Yes, please…I’ll take a decaf hazelnut iced latte.” And then tighten my laces for a quick sprint to the restroom.

All that to say, I used to enjoy a fairly regular weather-dependent iced or hot latte weekly “treat” routine with no real plan to upset the coffee cart.

Then one day it happened.

Someone gifted me an almost-full bag with the label “matcha” on the front. She said something akin to, “It tastes like grass. You can have it.”

My response when I opened it up to make my first matcha drink— “Good Lord! It’s bright fluorescent green! I’m gonna have to sweeten this up to swallow it.”

Having no idea what you’re actually supposed to do with this stuff, I scooped a couple teaspoons of the verdant powder into my glass, added enough cool water to take it to the brim and poured in some maple syrup to top it off. It took a bit of effort to dissolve the matcha in the cold water with my spoon, but once accomplished, in went the ice to make it nice and refreshing.

I took my ice cold matcha to work with me and proceeded to nurse it, which is my preferred way to enjoy any drink worth its weight. Which of course precludes any beverage aimed at cleaning me out for a colonoscopy or at prepping me for a prenatal glucose test.

I vividly recall stepping out of my office at some point that morning and announcing to my coworkers, “This stuff is amazing…it’s like magic! I feel alert and focused but not jittery!”

That’s the day I met my matcha.

Eventually, I began to add less and less maple syrup. Though I’ve never arrived at an unsweet sweet spot, I have settled on monk fruit drops as my healthy sweetener of choice. Matcha has become a morning anchor ritual that delights my taste buds and, as it turns out, does a whole lot more for me!

I can make a career out of researching a button hole. So naturally, I had to dive headlong into the evidence-based health benefits of regular matcha consumption. I was elated to find out that the vibrant green in my morning matcha is a concentrated dose of EGCG, an acronym for Extraordinarily Good to Consume for Glowing health. Well, maybe not exactly that. But not far off. After years of managing low bone density in menopause and then breast cancer, I was elated to learn that my daily fluorescent treat can actually help modulate bone loss and is linked to lower recurrence rates of breast cancer. Welcome to the toolbox, my little green friend.

Kyoto

In the summer of 2024, Chip and I went to Japan. Most of our time was spent in Tokyo, but we took a day to travel the countryside to Kyoto, about a two-hour train ride west of Tokyo.

In an entire day filled with exploration and discovery, the highlights included…

A walk through the iconic towering Senbon Torii Gates. Lunch at Vermillion Cafe with its cozy back patio set in a lush mangrove forest and serving up perfect avocado toast accompanied by bamboo-whisked ice-cold matcha. A trip through the 5-block, 400-year-old Nishiki Market.

All amazing memories. But the defining pinnacle of our day in Kyoto for this girl…

Ippodo Tea House in the heart of Kyoto.

My husband trekked for hours around Kyoto with me in search of this 300-year-old tea house. Mind you, Chip is a coffee guy all the way. No green tea has ever been accused of meeting his lips. So this was a pilgrimage of love for me.

When we finally arrived and stepped inside Ippodo Tea House, it was not unlike Indiana Jones upon finding the Holy Grail. Chip asked one of the ladies who worked there if she would take a picture with me. I was grinning like the matcha groupie I’ve become. You’d have thought I’d just met Elvis. Or maybe Bruno Mars, which would be far more probable.

I perused the menu and landed on an iced green tea for immediate enjoyment and then ordered tins of green tea and matcha to bring home with us. After schlepping a backpack around all day in 90+ degree weather, let me tell you, my first taste of that freshly brewed ice cold green tea was literally an “I’ll have what she’s having” moment.

I’ve long since finished off the tea we brought home from Ippodo Tea House, but I still treasure the little silver tins, souvenirs of a pilgrimage to the home of a green drink that accidentally appeared in my life and earned its permanent place of residence.

I’m embarrassed to say, in all my years of making matcha, I never owned the proper paraphernalia. Only recently have I outfitted myself as a legit matcha enthusiast—with a bamboo whisk and a ceramic matcha bowl. Imagine my surprise as I witnessed the velvety consistency of properly dissolved matcha!

It’s true…there’s a day for this.

Which brings me to today. It happens that today is National Matcha Day. Shame on me for not knowing that until I received a thoughtful email from Starbucks letting me know I can celebrate with any number of matcha items on their menu.

Instead, I decided to indulge in a particularly scrumptious matcha blend I discovered a couple of weeks ago at a local tea shop called Febe Coffee. They call it Pandan Matcha Latte with Nutty Sea Salt Cream. It is a deliciousness beyond words.

I contemplated taking out a loan and treating myself to a daily Febe Coffee masterpiece each day. I chose instead to research (of course I did) how to make that lovely drink myself. It entailed the purchase of pandan, which again, had to be researched. I found an organic pandan concentrate on Amazon, and it did not disappoint. That nutty, earthy flavor added to my matcha? Chef’s kiss. Haven’t tried making the nutty sea salt cream on top yet, but it’s coming. I think the secret may just be in the crushed toasted sesame seeds, but we shall see.

Truth be told, if someone brought me that perfect drink made with love at Febe every day, I wouldn’t be mad about it. But in between my tea shop visits, my homemade version in a stainless steel Yeti, sipped ice-cold all morning, will more than suffice.

Maybe you’ve arrived at this point in the story and think, “What does her weird obsession with matcha have to do with me?” Fair enough.

It’s all about the next small step.

How could I have known that the simple act of mixing up a glass of green powder, water and maple syrup the day I met my matcha would evolve into a morning ritual that nourishes my body, supports my specific health needs, leads me on an international pilgrimage, and just makes my taste buds so darn happy?

Maybe, OK, let’s be honest…probably your next small step is not matcha. Whether things are going well for you today or you’re reeling from unexpected news or you are just treading water until the tide can push you to shore, the next small step matters.

The next small step. Not all of them. Just the next small one.

What is one thing, just one, that you can do today to make your body or your soul or even your tastebuds feel well served?

A couple weeks ago, I shared a post called How Did I Get Here? I talked about how my book First, Brush Your Teeth—Grief and Hope in Real Time came to be. I ended with this question:

You can click on the question to read How Did I Get Here? Or, in case you’re approaching your quota of written word consumption for today, here is the nutshell version. I wrote every single day for an entire year after losing my son Chandler to traumatic brain injury on January 1, 2019. That collection of writings became a book.

My year of writing was sometimes cathartic, sometimes grueling, and always fueled by my love for Chandler and a desire to honor his own aspiration to become a writer. So when the time came to attach a title to my heart and soul poured out on paper, you’d think I’d come up with something deep. Something, let’s just dream big here, bordering on profound. Nope.

When faced with the challenge of naming my humble attempt at communicating what words can never fully capture, I asked myself, “How can I distill my first year living without Chandler into a singular title?”

It actually wasn’t hard to land on First, Brush Your Teeth.

Looking back at the hardest seasons of my life, some that I would deem (with no hint of melodrama) as devastating, I recognize a common thread. When everything felt like just way too much, when what lay ahead of me overwhelmed me to paralysis, I zoomed in on the path just in front of me and took the next small step.

Without intention or formality, I developed a philosophy for navigating hard seasons. When it feels like too much to ask your hurting, grieving, overwhelmed mind and heart and body to scale the mountain ahead, embrace the power of the next small step…

First, brush your teeth.

I’m not talking in metaphor here. I’m talking literally. Just get up and brush your freaking teeth. As I wrote in my book…

Anyone who has lost a loved one knows the first days and weeks are disorienting. I don’t want to get out of bed. And if I do get out of bed, what for? What’s next? I thought if I would just drag myself out of bed and brush my teeth, I might make it downstairs. And if I made it downstairs, I would maybe get a bite to eat. And if I ate something, I could possibly feel up to getting dressed. But first, just brush your teeth.

Maybe your first step is—comb your hair, make your bed, brew your coffee, or grab your journal. Maybe today your next small step is to sit down on your couch and simply feel all the feelings with a box of tissues in your lap.

What I’ve learned is that each sacred small step is a building block, laying a foundation of resilience. Do not underestimate the power of the next small step.

And that, my friends, is how every dentist’s admonition became the title for a book about losing Chandler.

Lest book shoppers in search of tooth care tips pick up my book only to be sorely disappointed at its contents, I added the subtitle — Grief and Hope in Real Time. I think that’s a fair tip-off.

What does Grief and Hope in Real Time even mean, you ask? I’ll unpack that next time.

Never underestimate the power of a pizza.

My youngest son Chandler was hit by a car on December 15, 2018. The waiting room for the SICU (Surgical Intensive Care Unit) became our family’s new living room. Friends popped in and out, coffee in hand, often bearing bags of food to share with us. We did what you do in waiting rooms. Wait.

One night as our collective stomach growls threatened to wake the entire SICU, several boxes of hot pizza showed up in the waiting room. Just for us! It was like manna from heaven. Apparently, there is a pizza angel, and he or she had decided we needed the crispy crust and the melty cheese and, yes, the pepperoni.

Desiring to extend our gratitude for said manna, I launched an investigation into the pizza angel’s identity and learned that a man named Martin Dugard had anonymously sent the pizza to our family.

When I contacted Mr. Martin Dugard, I learned why.

Martin knew Chandler.

Martin was a regular at a local restaurant, Board & Brew, where Chandler worked. He and Chandler had struck up a friendship. Chandler knew that Martin was a writer, a good one, of the New York Times Bestselling sort. During their conversations, Chandler told Martin he wanted to become a writer and asked him how to go about it. Martin graciously shared his knowledge with Chandler.

That single exchange with author and good human Martin Dugard changed my life in ways I couldn’t even know yet. Learning from Martin—a stranger who had become his friend— that Chandler wanted to be a writer was like the revelation of a piece of my son I didn’t know existed.

On January 1, 2019, Chandler took his last breath. And I kept writing.

Without that pivotal conversation with Martin Dugard, I may have continued writing here and there because, quite honestly, it helped me process the pain of losing Chandler. And I definitely would have been motivated to continue writing every time someone told me that my words were helping them in some way. But every single day for the first year after Chandler’s death?

I’m the inspiration for the children’s book If You Give a Moose a Muffin. So for me to commit to doing anything every single day for a year, besides go to the bathroom and brush my teeth, it has to be mandated by God and the IRS. And to actually follow through and do the thing every day for a year? That requires a level of attention, persistence, determination, and resolve that doesn’t show up casually in my DNA.

But I did it. I did it because of Martin’s words to me. I did it for Chandler. I did it with Chandler, the writer. There were so many days the last thing I wanted to do was sit down and write more words about life without Chandler. And I could hear his voice—Mom, you’ve got this.

My year of daily writing became my book First, Brush Your Teeth—Grief and Hope in Real Time. When it came time to put a name on the cover of my book, there was no one I felt more honored to have there than the Pizza Angel who told me who my son wanted to be.

And all of it because a compassionate, generous person sent pizza to a hungry family in a SICU waiting room.

Author’s note: Martin Dugard’s new book, The Long Run, releases Tuesday, April 14th.

This is a follow-up to my story “It’s Time: The Part We Never Told.” I will warn you, it’s a tough read. But it’s true. And it’s important. And we lived it.

When you write and speak freely about your story, it’s easy to take for granted that folks who are familiar with you or your work just know—the striking details, the context, the origin. So when someone asked me recently, “How’d you get here?” I realized people don’t just know by osmosis.

For those who are curious, here’s the Reader’s Digest version of how I got here. The full version—and I swear this is not a book plug but rather a strategic move to spare you all the details when you thought you were just reading a Substack post—is in First, Brush Your Teeth—Grief and Hope in Real Time. More about that in a minute.

On December 15, 2018, I got a call that my youngest son Chandler had been hit by a car and I needed to get to the hospital immediately. We learned that night that if he survived, he would be paralyzed and would have significant brain damage.

Eighteen days of terror and hope and plans to outfit our house for a wheelchair and hope and brainstorming spinal cord and brain injury rehab facilities and hope. And then dwindling hope. And then reality. And then total devastation.

I watched Chandler take his last breath on January 1, 2019. It was a privilege to witness his first breath. And to be present for his last. And it is a pain so deep, it will be with me until the final breath leaves my body.

I had begun writing on CaringBridge since about three days after the accident to keep people updated on Chandler’s condition. I was surprised to find that processing each day through my writing was cathartic and that people were telling me they were encouraged by my writing…that it was giving voice to unexpressed emotions they’d had.

I also learned that Chandler had wanted to become a writer. How did I learn that? From a conversation with Martin Dugard, a successful writer who knew Chandler from his job at Board & Brew, a local restaurant and social hangout. Chandler had asked Martin how to become a writer, and Martin had graciously opened up that conversation with Chandler.

After Chandler passed (see, I still avoid the actual word), these three realities converged. My writing was helping me process my grief. People were telling me my words were helping them. And my son wanted to be a writer.

I committed to writing every day for the next year and a dear friend helped me move from my Caring Bridge platform to my website that I still have today. I’ve said many times, as the poster child for “If You Give a Moose a Muffin,” I don’t do anything every day except brush my teeth and go to the bathroom. But I had three strong motivators. Chiefly, my son Chandler cheering me on.

Some days, many days, I didn’t want to write. And I heard Chandler saying, “Mom, you can do this.”

At the end of that year, I was relieved and afraid to stop writing. I wondered what a day would look like if I wasn’t putting pen to paper, a physical reminder that Chandler was not here that day. Would I forget, just for a day maybe, that I didn’t lose my son? Or would I feel separate from a story that will always remain the fiber of my being?

I soon fell into the rhythm of not writing every day. And I decided it was time to collect that year’s writing into one place where hurting people could read about grief and hope and what it looks like in real time. Thus, the title of my book First, Brush Your Teeth—Grief and Hope in Real Time.

So that’s just a brief catch-up of how I got here. Next time…where in the world did the title First, Brush Your Teeth come from?

“Go get the family...when they see how strong he is, maybe they’ll have a change of heart.”

I previously shared Chandler’s story, our family’s story, in It’s Time: The Part We Never Told.

Now I want to share the story of Chandler’s last day as told by my son Chance.

Chance is a prolific songwriter—processing pain, expressing joy, and savoring life through the setting of story to music. His album Pin Your Name to the Stairs is all about Chandler.

But this song…this song. Change of Heart. It is brutal. It is true. And we lived it.

Change of Heart by Chance Espinoza

Those days were so long
You were cut so short
They came to your room without
Reading a page of your report
I knew they wanted you to stay
Who’s to say who is to stay anyway

Hey, maybe we’ll have a change of heart

Phone call, remarks
Disclose concern
Plead your case with a holy phrase
Peg and trach
You said what if he was born this way
An ungodly thing to say
No comfort or care

Maybe we’ll have a change of heart
Maybe we’ll have a change of heart
Maybe we’ll have a change of heart
Maybe we’ll have a change of heart

We know you would

So much for ethics now
So much for ethics now
I’ll never forget that sound
Cough, mercy, cough, breathing, not breathing now

So much for ethics now
So much for ethics now
Pull the pin and disavow
At least he’s resting now

Why do I share Chandler’s story?

I share Chandler’s story because no family should have to go through what we went through. I am sharing to bring awareness to families who will sit in those same rooms faced with the same unthinkable decisions and don’t know what they don’t know until it’s too late. I am sharing to let families who have already experienced this nightmare know that they are not alone. And I am sharing it for doctors, nurses, future healthcare workers in training, spiritual care directors—every person whose job intersects with end-of-life moments—that they might see the human cost when a system fails the very people it is meant to protect.

Give this story wings.

If Chandler’s story moved you, please help me get it into the right hands.

• Share this post with a healthcare professional you know.

• Send it to someone you know who needs to hear it for whatever reason.

• Post it to your own community.

Every share is wind beneath the wings of Chandler’s story.

Read The Part We Never Told

This is the part of losing my son Chandler that was never in the book First, Brush Your Teeth--Grief and Hope in Real Time. It is the part our family carried privately for years — the part that happened in the hours before he passed on January 1, 2019. The part that turned the profound pain of losing Chandler into a nightmare of a different kind. One that was completely preventable.

I am telling it now because families deserve to know what we didn’t know. Because the sacred space around a loved one’s final hours can be violated by carelessness, agenda, or cowardice — and most families never see it coming. We didn’t.

If you have ever sat in a hospital room making impossible decisions, this story is for you. If you work in any space where last moments are a reality — this story is especially for you.

The Part We Carried Silently

On January 2, 2019, the day after Chandler died, I wrote in my daily blog post, “So many thoughts and emotions I want to share, and also some things I’m pissed off about, but my body, mind, and soul are spent.”

The next day, I resumed writing about everything...as if wringing the grief from my heart into a jar that I could pick up and hold whenever I wanted. A jar that would ultimately sit on my shelf in the form of a book chronicling my first year without Chandler. But that middle part...the part about being “pissed off.” That part was never shared.

When my son Chance released “Change of Heart,” a song about his brother Chandler’s last day, that was my clear mandate. The time had come for me to tell my story of Chandler’s last day. That part about being pissed off.

From that day on December 15, 2018, when Chandler was hit by a car, throughout his time in the hospital, until today, I have been an open book about our story, about his story. Literally. I wrote a book about it. The one chapter of the story I did not tell is, arguably, the chapter that will be indelibly imprinted in our minds like a lingering scar from a white-hot torch. And what makes it so? It was entirely preventable.

It is one kind of nightmare to see your son lying paralyzed, coursing with tubes, surrounded by a forest of machines, inhabited by breath from a respirator. The result of an accident. It is another kind of nightmare to see your son suffer in the worst way imaginable. The result of deliberate action. And inaction.

I will endeavor to use “I” rather than “we” when it seems appropriate, since I don’t presume to be an accurate historian on behalf of Chip, Charli, Chance, and Chase. We each have our own internal landscape that was laid down that day.

The story of Chandler’s accident, his 18 days in the hospital, and the first year of my own day-by-day processing of life without Chandler after his passing on January 1, 2019, are detailed in my book First, Brush Your Teeth--Grief and Hope in Real Time. I am ready to release the part of the story that I have never told publicly, a dark cave in my internal landscape accessed only by those I have chosen to allow entry.

I ask myself why I want, or need, to tell this story. Is it because I hope for some sense of catharsis? Yes. Is it to try and prevent this from happening to another family? 100% yes. Is it to bring awareness to the importance of organ donorship? Yes. Is it because I hope and pray to God that somehow those who caused Chandler’s suffering will read this and face, possibly for the first time, the reality that what they did was unconscionable? Hell. Yes.

At Christmastime 2018, we had just gotten home from the hospital and were about to go to bed when we received a call from Chandler’s neurosurgeon. He said he had hoped to deliver better news, but the latest imaging showed severe diffuse axonal injury, carrying the worst possible prognosis. He told us that comfort care would be an appropriate choice to consider. Comfort care, sometimes known as end-of-life care, aims to control pain and other symptoms so the patient can be as comfortable as possible.

Our family agreed without reservation that Chandler would not want to simply exist. We also agreed without reservation that he would want someone else to be given the gift of life because of his healthy organ donation.

The next day we had the necessary conversations at the hospital. The staff, the nurses, and Chandler’s doctors appeared supportive and compassionate.

Chip and I endured the long, painful interview with One Legacy, the organ donor organization brought in by the hospital. I had no idea how grueling the process would be. But we knew this is what Chandler would want.

The hospital worked with One Legacy to coordinate staffing and scheduling of the operating room where Chandler would be taken at the appropriate time. The day was set. January 1, 2019.

The morning of December 31, 2018, as I was driving to the hospital, I received a call. It was the hospital’s spiritual care director. “Everyone is talking about your decision and disagrees with it. Do you know that Chandler will die alone on a cold, steel operating table?”

This woman, this spiritual care director, had the audacity to speak these cruel words to me in an attempt to manipulate my emotions and change my mind about a decision that was made by Chandler’s family. The people who truly know him. Adore him. Would move heaven and earth to see him wake up and take life by the horns like he did during his 25 vibrant Chandler years.

I learned later that she had called Chip first. Having made no headway with him, she then called me.

When we arrived at the hospital, one of the doctors who had been part of Chandler’s care since the night of the accident called us into the conference room on the Surgical ICU floor, our home for the past 16 days. She told us she had to recuse herself from the case as she had a conscientious objection to our decision. She urged us to trach him, PEG him, and put him in a long-term acute care facility, a common protocol for patients with severe brain injury, wherein the patient is dependent on tubes inserted for feeding and breathing. At one point in the conversation, she asked, “If Chandler were born like this, would you be doing this?”

Just let that sink in for a minute.

My resolve collapsed. I was confused, terrified, angry, distraught.

I called One Legacy, sobbing, and told them I didn’t know if I could go through with this. I recounted what was said to us. They told me that this was absolutely not true. Chandler would not be alone -- if I wanted to be with him in the operating room, I certainly could be. Our physician family member, there with us the whole time, said that she would be honored to be with Chandler. The person from One Legacy also informed me that what the doctor had done in having a meeting with us to recuse herself was completely unnecessary and uncalled for. She could have quietly stepped aside from the case. Shame on her.

January 1, 2019. Out of the corner of my eye, I saw the New Year’s Day parade on TV.…just as the organ donor float was passing. It was like a sign, a glimmer of light on the darkest of days. We are losing Chandler. And in our loss, someone else, maybe more than one individual, will live.

We entered the conference room, once again, for our first, and only, meeting with the doctor who would step in for the doctor who had recused herself. He sat down at the table in the conference room where we had sat multiple times before to hear news that never got any better. He flippantly remarked, “It’s really not that bad.”

Let that one sink in.

It appears he had not even seen Chandler. He had no idea whether or not Chandler had been “trach-ed and PEG-ed.” He went on to say that Chandler was young and strong and encouraged us to consider, and here we go again, that we “trach him, PEG him, and put him in a long-term acute care facility” to see if he would improve. Because, of course this doctor who just breezily popped into the conference room knew Chandler’s situation better than the neurosurgeon who had watched Chandler repeatedly fail to respond to stimulus and who had read the latest imaging, informing us as gently as he could, “Chandler’s injury is diffuse throughout his brain and brainstem -- it’s like someone took a paint brush and splattered paint onto a canvas.”

The Struggle

Shortly after noon, we were instructed to say our goodbyes to Chandler. We left the room knowing that the next news we would hear would be that Chandler had passed peacefully and his organs were on their way to their recipients. We did not get our Christmas miracle. Someone else would.

The process for preparing for organ donorship would be to remove medications that would hinder the harvesting protocol and replace them with a different medication to keep the patient comfortable. In order to avoid a gap in pain control, a calculation must be made to start the new medication at a dosage that will afford equal pain control as the current medication. This did not happen. I’m saying this in simple layman’s terms, but the physician family member, who remained in the room to accompany Chandler to the OR, witnessed everything and knows exactly what went down. She watched Chandler begin to be in distress.

As Chandler lay there struggling, his physical body reacting to pain, the doctor at the helm instructed the nurse, “Go get the family...when they see how strong he is, maybe they’ll have a change of heart.”

A change of heart.

We surrounded Chandler’s bed. Confused. Terrified. This was not at all what we were told would happen. He would be kept comfortable.

The minutes ticked by, and he continued to struggle despite our begging for something to be done. The doctor was long gone. The nurses had to text him to give him updates.

At one point, we —his family—were told to hold him down so he would not rip out his tubes.

We watched Chandler suffer. Struggle. Choke on yellow mucous. The sounds.

We. Will. Never. Forget.

Never unsee.

At some point, it was determined by the doctor, present for perhaps a total of 10 minutes the entire day, that they could not go through with the organ donor process.

Now there was only one objective. Stop his suffering.

I had to chase down the doctor and beg him to please make Chandler comfortable. He had instructed the nurses that they could only titrate up the medication every 10 minutes. So I watched the clock and implored the nurse at every 10-minute mark to please increase the medication.

Chandler passed on January 1, 2019, late in the afternoon. His last hours were spent in needless suffering.

I watched my mom pass in the hospital from lung cancer. It was peaceful. I watched my father pass in the hospital after a broken hip. It was peaceful. They were not in pain or agony. When we talked with the doctors at the hospital, we were assured that Chandler would be kept comfortable. That, and knowing his vital organs would give life to others, provided us some semblance of strength moving through those last days and hours. Until it didn’t.

I now know that there is a thing called a Hero Walk. As organ donors are wheeled to the OR, staff and family line the hallway to honor that individual. Chandler was deprived of his Hero Walk. Instead, his last hours were marked by agony and suffering. We, his family, were deprived of a meaningful point of redemption as we said goodbye to Chandler. And someone, maybe more than one person, was told they would be getting a new, healthy organ on January 1. They were deprived of that gift of life. I hope they ultimately received the organ they needed. If they did not, that is on shoulders of the man at the helm of Chandler’s care that day. Shame on him.

Now What?

And so, as we began putting the pieces of our lives back together after Chandler, we did not speak publicly about the details of his last day. We did not share about the egregious efforts of the staff to persuade us not to do what we knew full well Chandler would want done.

In the summer of 2021, after much back-and-forth and bringing in others who had more “pull” than the Espinoza family, we were finally granted a meeting with the CEO and the head of the ethics department at the hospital. We spoke the words to them that had been said to us — by the doctor who had recused herself, by the spiritual care director, and by the doctor directing Chandler’s care on his last day. As we recounted our story, they were visibly shocked. They assured us that nothing like this had ever happened at the hospital and that they are in full support of the organ donor program.

The meeting ended with the CEO saying, “If there’s anything else you need, please let us know.” I was naive enough to believe he meant it.

After the meeting and having some time to process the discussion, we wrote the following email to the CEO:

Chip and I want to extend our deepest appreciation for the time you took to meet with us regarding our experience at ****** Hospital with our son Chandler Espinoza. We truly felt heard and understood, and we accept your sincere apology that the hospital let our family down in the worst situation imaginable. We also believe that had you been at the helm in December of 2018, our story would have been different. We left our meeting with an assurance that there is no policy or procedure in place that would lead to another family experiencing what we experienced. As you said, it was a “person-specific” situation. Which leads to my next point.

You had graciously expressed that if we wanted or needed to address anything more, we could contact you. Our family would like you to know that there is a significant unfinished piece of business for us and, in reality, for the hospital.

Since Chandler’s suffering on January 1, 2019, was tied to specific persons (and specifically executed at the hands of Dr. --------), this individual should be held to account. This doctor’s words, attitude, and actions were egregious and should not go without notice and correction by your institution. This doctor must be confronted with the reality of his actions on January 1, 2019, and the life-altering impact they had on our family. We not only have to live with missing Chandler, we also have to live with horrific images of Chandler suffering in his last hours unnecessarily. Chandler was robbed of a peaceful passing; our family was robbed of the ability to sit with him and see him pass peacefully; Chandler was robbed of the opportunity to give life to others with his vital organs; our family was robbed of knowing Chandler’s legacy lives on through his organ recipients; and donors waiting for his organs were robbed of precious life-giving gifts on January 1, 2019. All at the hands of Dr. ---------.

Therefore, the Espinoza family is asking that Dr. -------- be subject to whatever in-house peer review process the hospital has in place. In reality, we would like to see this doctor dismissed from his duties at ----------- Hospital as he is a stain on the institution. But we are aware that such action must be precipitated by thorough investigation and review of his actions. We assume that this doctor is not immune to such a review.

We assert that either Dr. --------- 1) Was incompetent in knowing how to provide adequate comfort care to alleviate suffering, or 2) Had an agenda that was counter to what our family knew Chandler would want and, therefore, refused to administer the appropriate drug protocol in order to keep our son comfortable and eligible for organ donation. Either way, it does not bode well for this doctor, and it is imperative that he be held to account.

I am including an account from a close family member who is a critical care doctor. She witnessed all of this firsthand as a family member knowing Chandler from birth, and also from a medical standpoint, knowing the end-of-life protocols she had enacted as a physician. She stated to me that even in her volunteer work in some of the most under-resourced places in the world, she had never seen anything like what she saw happen with Chandler.

The letter from this family member documented in concise medical terminology what she witnessed that day, in particular the actions of the doctor directing Chandler’s care. I will not include it here.

Like I said, I was naive enough to think the CEO of the hospital meant what he said when he told us to contact him if there was anything else we needed. Multiple follow-ups. No response. I even emailed just before the anniversary of Chandler’s death, imploring him that it would bring some sense of healing or release to know that the person who caused Chandler’s suffering was at least confronted, reviewed, reprimanded….something!

No response.

So this is it. The part of the story we never told.

Honestly, I can’t even venture a guess as to what, if anything, will come of releasing our story.

Here is what we would we like to see as a result of bringing this story out into the light.

1) Hospitals will communicate clearly and in a timely manner their policy and protocol with regard to end-of-life or comfort care. If there is any conflict with a family’s wishes, the family is then able to transfer care to a different facility. We did not know what we didn’t know until it was too late.

2) Doctors who cannot support a family’s end-of-life wishes will remove themselves from the case or be held accountable by the hospital for their actions that result in undue suffering for the patient and the family.

3) Staff members will honor a family’s decision for end-of-life care by withholding manipulative language aimed at forcing a counter agenda.

4) People will become aware of the power of organ donorship. Yes, it is a difficult process for a family, but it is a pinpoint of light and hope in a dark time. Chip is alive today because he received a healthy liver from a donor whose family endured the pain of the process.

5) Families who, God forbid, are facing a situation such as ours will be empowered to ask questions regarding all aspects of end-of-life care and make decisions they are comfortable with.

6) The doctor who directed Chandler’s care on January 1, 2019, will be reviewed, and he will reap appropriate consequences for his actions.

This story is not just our story. I spoke with a social worker who has seen it happen as well. I know there are countless others who carry with them images they will never be able to erase, memories of their loved ones suffering, because an institution, or an individual, was either incompetent or committed to an agenda in opposition to that of the family and the patient.

Please share this story. Our voice is louder together.

Lisa Espinoza is the author of First, Brush Your Teeth — Grief and Hope in Real Time, a memoir chronicling her first year after losing her youngest son Chandler on January 1, 2019. She is a national keynote speaker, and her work centers on hope and the power of the next small step during hard seasons.

You can find Lisa at lisaespinoza.com.