As the little girl, holding her father’s hand, walked towards me from the waiting room, my brain started making a list.

_too small for developmental age_



We went into my triage room and I chatted with her father about his concern, nothing serious, a normal kid thing. She moved awkwardly and clumsily – but deliberately – into the triage chair so I could check her vitals.

_neurologic deficits_

_language delayed_

I clicked a few buttons on my chart, glanced at her medical history, and just simply stopped talking, staring at the screen.

An unimaginably rare disease.

So rare that I won’t name it, out of concern for her privacy.

And a disease that is 100% fatal.

The rest of the waiting room, the rest of the emergency department, it all faded away. There were no more overhead pages for sepsis, security, CPR. There were no other patients, curled up in wheelchairs, braced against their pain, supporting a broken wrist, broken ankle, bleeding hand, painful belly. There were no sirens, no beeps, no alarms.

There was nothing left in the universe except myself, this tiny dying child, and her gentle father.

He pointed at my shirt, a picture of a cartoon T-rex; I wear it on the long days to make myself and my patients laugh.

“She loves dinosaurs.”

I knelt in front of the triage chair so that she could see my shirt up close. I pointed to T-rex. “What’s this?”

She paused, then reached out and touched my shirt, and smiled. “Rar!”

“Yeah!” I said, laughing. “Rarrrr!”

Her father and I talked for a few more moments, about her prognosis, about their plans for her final years. I held a room for them immediately, not because she was acutely ill, but because the rest of her life could be calculated in moments, and I wanted her to spend as few of those moments as possible in my ED.

“But, watch this! This is her favorite thing.” The father held out his hands to his daughter, and she stood up and took them immediately, knowing the routine.

Counter-balancing herself against him, she put one foot, then the other, onto his shins, then ‘walked’ up his legs, his stomach, his chest; ‘climb-the-parent,’ lots of kids do this, and then flip themselves over and land on their feet again.

But she didn’t flip, she kept climbing, up, up, until she stood on his shoulder, her hair brushing the ceiling tiles, taller in that moment than she would ever have the chance to be, a glimpse of the world as she might have seen it had she been given the opportunity to grow, to age, to live.

Maybe if he held her high enough, she could seek the safety of the sky and the stars.

Then she flipped herself over and landed back on earth again.

She was smiling. Her father looked down at her with his soul in his eyes and said, “She’s a miracle.”

And I was reminded that not all miracles bring us a happy ending, and that sometimes the best work we do in this world ends with us saying goodbye.

I reached down and gently tapped her on the nose. She grinned at me.

“I love her,” I said.

Her father smiled. “So do I.”