When Your Sick Child has Had Enough

I’m a lot of fun at parties.

Inevitably, when people introduce themselves, the topic of work comes up. I usually say that I work at Seattle Children’s Hospital. I’m a pediatric palliative care provider, and I work with families of children facing life-threatening or life-limiting illnesses.

My team has expertise in pain and symptom management, complex communication and decision-making, end of life, and grief.

In these social moments, I tenderly tiptoe around the minefield of emotions that comes with talking about what many people, even in the medical field, describe as unimaginable: the death of a child.

I might occasionally share an anecdote about an anonymous child who surpassed the expectations of their diagnosis and is out in the world. Or an almost Hollywood-like story about the last-minute wedding of a young adult who understands intimately how precious life is.

As I’m sure you can imagine, in the setting of a casual get-together or cocktail hour, this conversation, which started as a relatively innocuous icebreaker, can sometimes change the barometric pressure in the room.

This is a part of the human experience that everyone fears and no one wants to talk about.

I look into the eyes of people who grip their glasses a little tighter, remembering their hardest goodbye, or look around for their children and allow themselves a brief moment to consider the what-ifs.

We usually try, somewhat awkwardly, to transition to something lighter.

But occasionally, someone loosens their grip on their glass and says, “That sounds really hard. What led you to this work?”

In that moment, my life flashes before my eyes.

I consider all the things that led me to question some of my most deeply held beliefs about life, death, and what matters most when we know a child is dying. I consider how those changes in me led me to this work.

Then I run through a quick algorithm to decide which parts of my truth to share.

When I was asked to share some thoughts with you, I thumbed through my mental Rolodex of stories. The patients, their families, and my colleagues who have taught me along this journey.

There are dozens of stories that push and pull at me. Stories that would hit the right note and that have shaped my practice.

But in this dialogue, where the question isn’t only about the role of the professional, but also about gathering in solidarity to explore the human experience at the end of life, the child’s story I feel most compelled to tell is mine.

Her name is Mari.

In what feels like another lifetime, my sweet and feisty newborn began losing physical skills. One day she was rolling over, and soon she was straining to repeat that same motion.

Time freezes in my brain and in my body when I remember sitting in a specialist’s office and hearing the words, “You should take her home and love her, because this diagnosis means just one thing. Mari will not live into adulthood, and she will be lucky to live into childhood.”

I can still feel my heartbeat pounding in my ears, drowning out the words that followed.

Instead of taking our usual commute home, we walked the miles back, silently replaying those words and our own denial over and over again.

The image of our cherubic, engaged, now six-month-old baby did not align with this death sentence.

So we worked hard to focus on the life in front of us.

We celebrated birthdays monthly because we knew there would never be enough of them. She had her first bites of ice cream far too early.

Eventually, the early signs of illness crept in.

We noticed panic in Mari every time she was forced to interface with the medical world.

During one particularly difficult illness, she had to be placed on a breathing tube to support her failing respiratory system.

She wept. She made intense eye contact while tears streamed down her tiny cheeks.

The only thing that could temporarily ease her panic was bringing our faces close enough for her to stroke our noses, sometimes for hours.

So we hovered over her bed and let her touch our faces. We hoped we could stifle our own cries so we wouldn’t add to the fear-filled tears on her tiny ICU bed.

Just a day later, she wriggled her hand free enough to dislodge her tube, whether the medical team was ready or not.

She said, “All done,” over and over.

I’ll admit, that was a pride-filled moment for me.

I thought I had evidence that she was fighting too, that she was fiercely declaring to the world that she was so much stronger than anyone thought.

But then the sad realization dawned on me.

She was communicating, in a powerful way, what had taken us far too long to understand.

We were fighting for the wrong things, and our best-laid plans had removed her voice from the conversation.

We paused. We recalibrated.

We made a commitment that our desire for her to live could not be the only voice we listened to. And if anyone had to pay the painful price of shouldering that burden, it had to be us.

Eventually, a new doctor told us about the many years she might live. Then came discussions about a tracheostomy, spinal surgeries, painful medical procedures, and a life isolated from her peers because of the risk of illness.

When our answer was a firm no, we were asked to meet with a specialist who could hear these questions differently.

He introduced himself to me, and that was the first time I learned about palliative care.

We sat together, and he gently explained that while medical technology gives us the opportunity to do everything, some families lovingly choose to intervene less.

To spend less time in the hospital. To reshuffle the predetermined list of priorities and create their own.

Many years later, as I navigated my professional path as a clinical social worker, I found myself looking around and asking many of the same questions I had wondered about as a parent.

Is she a diagnosis, or a person facing one?

I recognize the privilege of having enough time to reach a place where we could hear, so loudly, what mattered most to Mari and to us as a family, and then work with her palliative care team to translate those wishes into a medical plan.

I want to be clear that I do not believe the choices we made as a family are right for everyone.

I tell every family I meet in this work that if it matters to them, it matters to me.

The work is not about defining the pathway for each family. It is about empowering them to listen to their own voices, and most importantly, to the voices of their children.

Some families I meet, like mine, have been navigating their child’s serious illness for months or years. They’ve been preparing themselves for the day when someone speaks a version of their worst fear:

“Your child is dying.”

For others, a typical day becomes seared into memory forever because of a series of events that many describe as a living nightmare.

In the blink of an eye, their child is changed forever, and the way they interact with the world will never be the same, even when death isn’t the outcome.

People often think about palliative care as choosing quality of time over quantity of time.

But we aim to infuse quality of life into every part of the illness and focus holistically on the family and their goals.

As a family, we teetered along that same tension. There were still hospital stays, but far fewer of them.

Then one cold winter morning, as we were being discharged, Mari said, “Goodbye, stupid hospital. I’m never coming back here again.”

I told her that we might have to come back sometime.

But she insisted that she would never come back again.

Another pause. Another moment of recalibration.

And the support of a team that empowered me to honor her and what she was telling me.

So, as expected, when another cruel illness weakened her body, we stayed home.

I told her the story of the day she was born. Her grandma read her books every evening, and her dad snuggled her all night.

The same team that met me in that sterile clinic office and told me about palliative care huddled in our living room and gave us all the tools we needed to help Mari transition into whatever came next for her.

In a tiny voice, on a cold afternoon in January, Mari opened her bright eyes and said, “Mom, I’m going to be a butterfly and fly into the sky. Won’t that be nice?”

I told her it sounded nice that she could fly, and that we would be okay.

A day later, she did.

So when the grips on those glasses loosen and we move beyond the surface into the heart of all of this, it is my greatest honor to hear these tiny voices and speak them loudly into the room.

I miss Mari today as much as I did that day, and I have some regrets.

But answering the call to let her speak through me, and allowing her to guide her own life and death, is not one of them.

Thank you.