1/20/14

The rhino in the room

The common cold isn't a big deal, unless your body is already compromised. So when Eloise's neighbors were rhino virus positive, I knew we'd be in for it. But I wasn't prepared for how badly it would effect the wee mademoiselle.
Her lungs are diseased, and she is laboring for every breath. Her mechanical oxygenation needs have dramatically increased. The worry is that it takes so much energy to breathe, her muscles will expire and she will fail.
I had a very candid discussion with her doctors, respiratory therapist, nurse, and nurse practitioner, over whether Eloise's quality of life after this crisis, in all the years to come with eating problems and lung problems, if her quality of life will be worth working so hard to salvage. From my perspective, life here on earth really isn't that great, and life with God is infinitely better. So are we working so hard to keep her alive for a life that will be only struggle for her? It took me a whole night alone in a hotel room to square with asking the question.
Each of them said yes, because her brain functions perfectly. She has a healthy heart. She won't know any differently about eating. Compared to the other children in the unit, Eloise's quality of life will be pretty good. It will take more trips to the hospital. It will take patience from me. It will take help from my family. It will require years of trauma for me to deal with well after she is living a fairly normal life.
After this consultation, Eloise woke up as if she wanted her opinion heard as well. I smiled at her and gave her kisses and loves, and showed her the fairy mobile I made her. We looked out the window, saw the ugly construction zone, the crane, the smog, the prison workers cleaning the site. I couldn't help myself and said to her, "Why do you want to be here? The world is so ugly. You are suffering. Breathing is hard. I don't see what's worth living for." As if she was actually responding to me, she gave me this beautiful smile. First one I've seen in a day. Her eyes sparkled. I couldn't believe with all her struggles she used the energy to smile.
It was a bit too much for me. We listened to come of my favorite arias. I thought about the Venetian opera house, macarrons, Joan of Arc. I gained resolve. I restored resolve to keep fighting this agonizing war of attrition. At this moment I honestly can't see life's worth for either of us. But apparently Eloise does, and I'll trust her.

2 comments:

  1. Oh, sweet lady. You are her best and most candid advocate. Thanks for treating every ounce of that with earnestness. I'm sorry it is so very, very heavy and ever present.

    ReplyDelete