Control

“What’s with the rocks?”

“Do you have a few minutes? Pick a rock and I’ll tell you a story . . .”

Rock #1 green: a lesson in trust (not in the book!)

As I approached Karis’s transplant ICU room, I could hear her yelling. “Don’t come in here! The bomb is about to go off! Please, listen to me! DON’T COME IN HERE! It’s OK for me, but I don’t want you to die! Please, please, don’t come in here!”

Karis’s yelling dissolved into whimpers and then outright sobs as the nurse in fact entered her room. But when Karis saw me in the doorway, she started yelling again. “Mom, stop! There’s a bomb in the wall that’s going off any minute! Please, please don’t come in here!”

I respected Karis’s wishes because I saw her doctor coming down the hall. “I know. I heard. I’m trying to figure out what to do. Clearly Karis can’t stay here.”

Karis’s mental break had a name: ICU psychosis. The medication for ICU psychosis wasn’t working. Neither were my fervent prayers. Karis had been in this ICU so many times that everyone knew her, and seeing her like this was upsetting the whole unit.

I sat down in the hallway outside of Karis’s ICU room so that I wouldn’t upset her further by going in. Leaving Karis alone with the degree of fear I knew she was feeling went against every one of my mother-instincts. The situation was entirely out of my control.

Sitting there, I heard Dr. C talking with the head nurse of 11 North, one of two transplant floors. He had decided to try something very risky, which involved major sacrifice on the part of 11 North nurses: move a critically ill patient to a regular floor. This story is told in more detail elsewhere, but within hours back on 11 North, Karis was back to normal mentally and emotionally.

The nurses were as thrilled as I was to have “their” Karis back. Not once did I hear them complain about the extra work she caused them. For weeks the other nurses on the floor absorbed the patient load, each one caring for five patients instead of four, with the head nurse pitching in with more direct patient care than she had done in years.

The day came when only one nurse was assigned to Karis. Then the extra equipment disappeared, piece by piece. The day came when the unit was back to normal, with Karis just one of her nurse’s four patients.

The day came when I felt like things were back under control.

But there’s more to this story and to the lessons in trust God wanted to teach me through it. One day Karis spoke to me, looking into my eyes so I would know how serious she was. “I don’t ever want to return to the ICU. I would truly rather die than return to the ICU. Mom, don’t let anyone ever take me there again.”

With Dr. C’s help, Karis expressed her desires formally, legally, including a DNR order. That meant if her heart stopped or she was no longer breathing, she did not want to be resuscitated. The order was entered into her electronic record and taped to the front of her chart and posted by her bed. And Karis relaxed, more at ease than she had been since this whole episode began.

Until—her father arrived on a visit from Brazil and her brother came from DC. They walked onto 11 North and into Karis’s room together. After the initial greetings and hugs, one of them caught sight of the “No ICU, DNR” order. And they went ballistic, blasting out of the room to find Dr. C.

I sat by Karis’s bed and held her hand while we listened to them yelling in the hallway. Until I couldn’t stand it anymore, and went out to try to intervene. To regain some control. To advocate for Karis. I heard Dr. C firmly state, “No, I can’t change these orders. They are Karis’s express wishes.” My husband and my son charged right past me on their way back to Karis. To tell her that her wishes were unacceptable. To tell her their wishes had to be respected. That she had no rights over her own life. That she couldn’t just choose to die. That we all, as a family, had fought too long and too hard to just give up.

Barely containing my outrage, I watched Karis quietly listen to her father and her brother. Touching them, physically and emotionally. Calming them down. Telling them how much she loved them. Telling them it was OK; she would change the order. That she hadn’t meant to scare them or hurt them. I watched these two strong and beloved men weep as she tenderly cared for them.

And when they left to get something to eat, it was my turn to sit there as she cared for me. As she told me that it was OK. That God was in control of how long she would live, of when she would die. That when it was time, his will would be done—not hers, not her dad’s or her brother’s, not mine or anyone else’s. She didn’t need an order or a piece of paper with her signature. She had the Lord. And so did our whole family, even if we weren’t able to feel it all the time.

It took me a long time to fully work through the trauma of this situation; to sort it all through, especially with my husband. To find the lesson in trust the Lord had for me. A lesson Karis had already learned, long since. He holds the whole world in his hands, from the small people to the strong ones. All of us are vulnerable. All of us need to know someone else is in control. Someone worthy of our trust.