Sometimes only a Han Solo quote suits

I never wait in the surgical waiting areas designated for parents. Periodically a secretary will holler, "Will the parents of..." And the wait for the child's name is interminable. It's a small eternity, long enough for your heart to stop and your breath to catch in your chest.
So as Eloise was wheeled into the operating room this morning because she pulled out her own G-J tube, I returned to her bed space to change her bed sheets and organize her clothes. I missed it when they called my name. That Code Blue? That was my baby. She quit breathing. Her heart slowed down. They couldn't get her to breathe, and gave her chest compressions. That's when the nurse ran to me and said, "They need you in the OR, STAT."

Not the kind of words a parent wants to hear.

She started breathing with intubation. She came back, with her G-J tube replaced. Two hours later she was smiling again. There is no reason to believe she will have any long-term damage from this.

One of the nurses here at Utah Valley lost her baby boy, after a struggle in the NICU. Today was his funeral, and all here have had heavy hearts. I don't understand why some go and some stay. I don't understand why Eloise has to suffer so much. My world is upside down, and I feel like the only thing tethering me to life is motherhood. I can't fail with that.

I've seen more in this world than most - the poorest parts of this world, the destitute, the hopeless. I've seen children die, and what's worse is watching them suffer. But I am supposed to believe in miracles. I have had faith all along the way. I have prayed, fasted and sacrificed in the name of faith. But it just keeps going. It's six and a half months now. The problems compound on each other. She quit breathing because her whole life she's been trained to protect that airway, no matter what. She pulled her G-J tube because she only now started to reach and grab for things. What else is she going to grab?

I have been here every day. I have been involved with every single step in Eloise's life. I have spent enormous amounts of effort keeping my girls at home healthy and happy, and trying to make sure they feel my love. My family has sacrificed for Eloise. It is incredibly hard to keep a marriage alive under pressures like this.

How much more is there?! She almost died today, during a pretty routine procedure. She will have dialations in the OR 3 times a week, needing anesthesia. We will be making trips to the operating room weekly for six months, and then probably twice a month. What more can I do? Is losing my mind the uttermost farthing?

A Han Solo quote comes to mind. "No reward is worth this!"


  1. Been thinking of you, and this, and all of everything today as I'm studying post modernism and post structuralism. Theodor Adorno: "to write poetry after Auschwitz is barbaric." This idea that things are too complicated to be understood or to be fixed, but that there is a value in witnessing suffering, that it might not transpire unwitnessed. But don't reduce it by trying to make meaning out of it, once the depths are plumbed then to point to a meaning is to turn a blind eye to the rest. Thank you for being Eloise's advocate in this life, and for stretching yourself to fill all your roles the best you can. And for keeping a record.

  2. Also - why mourning with those who mourn and comforting those that stand in need of comfort are two separate and distinct things. Comfort can be inappropriate. I remember a cardinal rule of the U burn clinic was to never say everything was going to be ok. Instead to say "I'm here, I'm right here, I'm not going to leave you as long as you need me." You are managing so well all the spinning plates, be kind to yourself over your limitations.