This Is Us

Joy comes when we let go of the idea that we deserve it

Nearly five years ago, I knelt before my five-year-old son Sam in the basement of our friend’s home. The room was filled with a mishmash of furniture from upstairs and outside to accommodate all the people who had come to say goodbye. Sarah, Sam’s hospice nurse, was giving us directions for delivering morphine and other end-of-life medications. She told us to measure Sam’s life in “hours to days.” Sam had started to lose the ability to swallow. It was only a matter of time before he struggled to breathe.

I snuck off to the bathroom to quietly vomit, a habit that had begun a few days prior when an MRI confirmed that what my husband, Mike, and I had avoided and dreaded and planned for the past 30 months was upon us. Sam’s inoperable tumor, a monster scientists called a “diffuse intrinsic pontine glioma” or DIPG, was growing. The final moments were here. Death tugged on Sam’s one hand while we desperately clung to the other. I remember feeling the life slowly draining from his body, like a tire with a slow leak.

The past week had been chaos — a series of desperate actions and last-minute decisions and impossible, conflicting conversations.

Exactly one week earlier, Mike had received a grave phone call. We were standing in the kitchen, and I watched his face transform, heard his voice shift into an octave consistent with bad news. The air in the room morphed; the energy suddenly illuminated, screaming for action. I searched Mike’s face for clues, listened to the few words he spoke, attempting to uncover what had happened and who it had happened to. Mike said goodbye to the mystery caller, and I steeled myself for the news, assuming it was related to our tragedy, to our grief. I was wrong to assume.

“Craig’s dead,” Mike said, flatly.

Craig was one of Mike’s best friends from high school. He had been found in his office with what looked to be a self-inflicted gunshot wound. The kitchen remained silent and inert for a few moments as this new, horrifying reality settled, weighty and uncomfortable, into the room. The shockwave reverberated in our bellies.

“We have to go,” I said, breaking the silence. “You have to be there.”

We quickly rallied family to watch Ada and Mae, our two-year-old twin daughters, and immediately purchased three plane tickets to Florida to attend the funeral. But immediately after securing our flights, a voice in my head sounded a warning: Sam’s symptoms were getting harder to ignore. His energy levels crashed frequently and unexpectedly, his speech slurred, his eyes lost focus. He’d often scream out from his bedroom in the dark hours of night as if a ghoul had come to snatch him from his room, from us. I’d rush into his bedroom, breathless but knowing I would find Sam alone, still asleep.

Night terrors were his first symptom prior to diagnosis. They had gone away following treatment, but now, they were back. A flight could lead to increased pressure in his brain. If his tumor was progressing, a cross-country trip could be catastrophic, even deadly.

We decided Mike would travel to the funeral alone.

The days following that phone call merged into a hazy series of interactions, sights, sounds, and smells punctuated by knife-like realizations.

The morning Mike left, I received a phone call from a pediatric neurosurgeon at the Mayo Clinic. After reviewing Sam’s case, he believed there was a chance Sam had been misdiagnosed. He wanted to do an MRI.

The phone call was unwelcome and unbelievably frustrating. Most kids with DIPG succumb within a year. Sam had survived more than two. We had encountered several doctors over the years who assumed Sam had been misdiagnosed, each thinking they knew better than the last, each encouraging us to subject Sam to risky and traumatizing tests to assuage their curiosity, and each time living through the reconfirmation that Sam’s case was hopeless. Often I even found myself comforting the doctors at these appointments, distraught they had it wrong, that Sam did, in fact, have a terminal illness.

After the call from Mayo, I attempted to weigh the risks of satisfying this doctor’s curiosity and my own desperate desire for a different diagnosis with the mission we had set upon two and a half years earlier—to make Sam happy. Sam’s unstable condition meant that even putting him under anesthesia for an MRI could be life-threatening. But what if this doctor would see something new, something the others missed, something that indicated Sam would survive? I called Sam’s neuro-oncologist in South Carolina. I called his neuro-oncologist at Children’s in Minnesota. I called his hospice nurse. I called the neurosurgeon at Mayo. I asked them to organize a conference call, compare notes, and get back to me with a recommendation.

Later that day, I took Sam, Ada, and Mae to my mom’s house, hoping the kids could enjoy the welcome reprieve of warmer temperatures after an endless, unforgiving Minnesota winter. My mom, sister, and nephew Christian greeted us when we arrived. Christian was Sam’s best friend. The boys got busy building a fort with the dead tree bits and pushing matching yellow dump trucks across the street to the neighbors’ yard to find salamanders and rocks. The twins took turns pushing one another in the red and yellow Cozy Coupe. I tried to update my mom and sister on Sam’s condition as best I could. They, too, could sense a difference in him.

I put Sam down for his nap early that day. His exhaustion was palpable as he worked hard to keep up with his cousin. He slept for more than five hours. I checked on him every 15 minutes, feeling his chest for a heartbeat, holding my ear near his mouth to hear him breathing. His face looked so pale, so immobile; I worried he’d never wake up.

He eventually did rise from his long nap but woke up a changed boy. His words slurred in his mouth. His eyes struggled to focus. His body seemed empty. I carried him outside, and he tried to play again. Mostly, though, he just sat near Christian, quiet and immobile. Eventually, I carried him inside, snuggled him into a soft blanket, and turned on a movie.

Each hour that passed, Sam seemed to lose more of himself. By the time, I called Mike late that afternoon, I had to warn him, “Sam looks and sounds very different than before you left; just be aware.”

Mike spoke with Sam on FaceTime for a few minutes. I heard his voice crack when he said, “Bye-bye Buddy Roe. I love you and I’ll see you soon.” Sam handed me the phone, and Mike’s astounded face confirmed that the physical changes I saw in Sam were real. We both began to cry, the only language we could muster for the moment of deep knowing.

“I’ll try to book a flight home for early tomorrow,” he said.

“I think you should,” I replied.

After that call, I decided to leave the twins with my mom for the night and devote myself entirely to Sam. That night I slept on Sam’s floor, afraid he would go, and I wouldn’t know it. When we woke up the next morning, he could no longer control his head. I held him up to play with blocks, but our game was interrupted when he vomited on the floor. As I carried him upstairs to bathe him, I sobbed quietly. I knew it was happening fast. I knew we didn’t have long. I knew I was powerless.

After his bath, my sister came over, and we took turns watching Sam breathe. It was a Wednesday.

Mike called his parents so they could book a flight to come say goodbye.

I posted something on social media.

This was it.

Dozens of people streamed in and out over the next few days to visit. Friends and relatives flew in from out of town. Visitors brought toys and wine and tissues and food. We all waited, together, for the end. And as it drew near, I sang Sam’s favorite lullaby to him from my knees in the presence of his hospice nurse and more than a dozen people who loved him:

“Wise men say.
Only fools rush in.
But I can’t help
Falling in love with you.”

I didn’t mind that they watched this intimate ritual. I wanted Sam surrounded with love. As I finished the song, I squeezed his little hand three times, a secret message we practiced every night before bed for when the time came that Sam could no longer speak.

“What does that mean?” I asked him.

“It means, ‘I love you,’” Sam replied.

I felt frenzied and worthless, kneeling before Sam, singing to him, squeezing his hand. I wanted to protect him, fight for him, square off with the monster, slash its face with the pure hatred that lived in my hands and arms, shatter its eardrums by unleashing a guttural scream of anguish, plant my foot on its throat, crush its windpipe, and watch as it struggled for air and succumbed, satiating my desperate motherly need for violence, for order. Instead, I swallowed the violence inside of me, resigned to the knowledge that the monster that lived in Sam would inevitably wrap its bony sharp claws around the most vital part of his brain, the part that told Sam’s heart to beat and lungs to breathe, and squeeze the life from his fractured little body. Unable to fight but desperate to act, I pleaded with him.

“What can I do to make you happy right now, Sam?”

The room was perfectly silent, reverent, as we waited for Sam’s response. Sam looked at me, his face full of confusion, and said, “I am happy, Mom.”

My heart exploded with a love so big and so raw and so pure I could taste it on my tongue. I drank it in — his words, his grace, his purity — and held back sobs. I felt a profound sense of sadness that he couldn’t live accompanied by an immense, throbbing sense of relief and pride and joy. Relief because in that moment my deepest desire for Sam was that he was happy. Pride because of the grace he exhibited in a chilling moment. Joy because I knew I was so damn lucky to have that moment, to hear those words from his lips, to have a mantra I could live by, could cling to for the long days ahead.

Sam died the next day.

When I think back on Sam’s final words, “I am happy,” I am awestruck and humbled. I don’t know how Sam found happiness in a moment like that. A moment in which Death had his long, stringy fingers around his neck, stripping him of his ability to live. A moment in which he was preparing to leave us. A moment in which his mother was kneeling before him, pleading for a way to make him happy. Whether due to the wisdom created by a lifetime of illness or his young age or some innate gift bestowed upon him at birth, Sam possessed a grace that allowed him to see happiness even in a moment most of us would define as profoundly sad. I believe he looked around and saw a room full of people who loved him. It was that simple. At that moment, he wasn’t afraid of losing his capabilities. He wasn’t angry because he deserved better. He was content. He was loved. He could see that and it made him happy.

Happiness is not something you find externally but something you cultivate deep inside of yourself.

Sometimes I still think to myself, how dare we be happy without our Sam? How dare we celebrate? How dare we enjoy? How dare we, for one second, forget that Sam had brain cancer and died and that we are broken? But Sam’s words pull me out of that mental frenzy, back into the present, and I realize we are doing exactly what Sam’s life taught us to do.

Sam’s final words taught me that happiness is not something to be sought. The very idea of pursuing happiness is flawed. Chasing something we think we deserve is misguided. I find that without the idea that I deserve to be happy, I am free. I am free to stop and to see, to breathe in preciousness all around me and express gratitude for what I have rather than seeking what I think I deserve. I am free to see that stillness is the antecedent to joy, that happiness is not something you find externally but something you cultivate deep inside of yourself.

Sam taught me that happiness is not the absence of pain. On the contrary, experiencing real pain made me more capable of profound joy. When I look back on my time with Sam, the moments that were the happiest were small. They were simple. They were fleeting. It was their fragility, their fleeting-ness that made them miraculous. It was the fact that I didn’t deserve them but got them any way that makes me happy.

And I am. Happy.