the boulder

More often than we would like to admit, there are times in our lives when we step outside of ourselves, look back at our shell of a body, and wonder why we are doing the exact thing we DON'T want to be doing.

"Why am I saying this?" "Why am I doing that?" "Somebody stop me!"

I know you've done it too--seen yourself from the outside. You've seen your mouth moving against your will, or your hand coming down angrily on the table, startling your inside-self.


I am taking care of a two-year old little girl who recently had surgery to remove a malignant brain tumor. And, along with the tumor, they took out a large portion of her brain as well.

She has a huge incision down the back of her smooth head and a drain which starts inside her ventricles then pokes out through her forehead and snakes down the side of her bed into a very precariously leveled contraption with pressure controls and outlet valves. And she has big, curly, black pigtails that sit atop her head like two poofy, round dollops of cotton candy.

Her hands are tied down to the bed so she won't pull out the drain or her feeding tube.

At first, when I would come into the room, she would look at me, and smile with her eyes.
A few days later she started crying anytime I would listen to her with my stethoscope.
Then, she would cry anytime I began to approach her while wearing gloves.
Later, she would start crying as soon as I washed my hands.
Now, she cries anytime I enter the room.

I've tried taking off my white coat before I go in, which only worked one time. She associates me with everything that is painful and awful about her life. Her nurses are starting to have the same problem.

Today, as her dad was lying curled up in bed with her, we stood outside her room reading the results of her MRI. Cancer everywhere.

She is too young for chemotherapy. So now we wait.

I started making changes to her orders. Allowing her to eat preferred, though less-nutritious foods. Removing the visitor restrictions. Changing vital signs from every 2 hours to every 4 hours, since those terrify her.

And I know what's going to happen. Her dad, lying curled up on that bed, is going to be certain that we have given up on his little girl. He is going to push for more, and we will push back for less, but ultimately give more, just as he wants. More tubes and lines. More pain. More precious, invaluable time.

I want to tell him that was are not giving up. That things are the same, just different. I want us to all breath, and me to listen, and her to be comfortable if she can't be healthy. I want him to not have tired, darting eyes.

But I see the huge boulder of what is to come rumbling towards us.

My chest tightens and my insides twist.

And as we all stand there, doing "rounds," I want jump up and down and yell "It's coming! Don't you see that it's coming? It is about to flatten us, you guys!"

Instead I stand there and ramble off numbers, just like every other white coat you've come to hate.



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