Day 37, late night

Dear Friends,
Our apologies for not being in touch for the past few days. Our goal for the weekend was, along with the rest of the country, to take a break from some of our labors, and to get Sophie and Sage to take a break as well—the successful result of which has meant silence on the blog. For that we apologize.
The past few days have been quiet, steady ones. Sage had the smaller trach put in on Friday morning, which went without a hitch. Hopefully that will bring her some relief from discomfort, and move her further along the road toward getting off the ventilator entirely. That afternoon she took another long walk around the ICU, and even tried to make a break out the doors to the ICU and for the elevators. Sage wants to get out of here (no offense to the wonderful caregivers at DHMC)–and we want to encourage her in that direction. Soon, soon, we hope...
The weekend also saw Sage taken entirely off her Fentanyl drip. This is a good thing, of course, but it is not an easy thing, as it means that Sage is left to struggle with her pain and discomfort, and the lonely anguish of not being able to speak, without the help of a synthetic opiate. Her strength, her courage, her will are… how to describe them? Profound. Awesome. "Epic," as the kids these days might say. I do not exaggerate. She does not complain. There is no whining. There is no self-pity. There is not even any anger. To look into her eyes—clear, enormous blue pools of compassion and desire—is to feel simultaneously refreshed and chastened. She makes jokes (we asked her the other day if there was anything we could bring her from "outside." "A burger and fries!" she mouthed emphatically). She thrills at the battle scenes in Lord of the Rings and giggles when we tease her about Vigo Mortenson. Bug is forged of flint and steel and fire. Our job now is to keep that fire inside her burning bright, to send her hope, to remind her that this will pass, that she will get out of here, that fate surely holds something great in store for her…
She has been struggling with a bit of nausea the past few days and has had trouble keeping her food down. This might be due to any number of things, so it is not something we are freaked out about, but we are certainly keeping our eye on it. Sophie asks in particular that The People of Good Jou-Jou send some good jou-jou this way with regard to food. It is heart-breaking to see Bug working so hard, to express hunger and thirst and appetite, and then to see her experience the nausea, and the frustration of nausea. So: People of Good Jou-Jou: Visualize food for bug! A healthy appetite! A happy belly! Second Helpings! Thank you!
The past few nights too have been a bit difficult for The Bug. That probably has a great deal to do with coming down off the fentanyl, but she has clearly been uncomfortable at night both physically and emotionally. A lot of shifting around, and a lot of anxiety. One can only imagine how difficult and how dark the nights must feel for her. Please everyone say a prayer for her in the evenings, send her sweet dreams and restful nights. She needs them, and I don't think it would be unfair to say that she has certainly earned them.
The days since you last heard from us have been lovely. The heat has broken, and on both Saturday and Sunday we took Bug outside for some sunshine and fresh air. On Sunday she walked with us out of the ICU, into the elvator, out the main entrance of the hospital, past the parking lot and around the grounds! That was huge and happy, for all of us. When she passed Timothy's car, she noticed the Maryland license plates and stopped. We flipped it open for her and suggested that maybe she'd like to practice her stick shift work...? She gave her nurses the eye and took a step in that direction with a big laugh. Humor is a great healer. It makes everyone feel better.
So of course does a two year old, and that was the other lovely bonus to getting Sage outside: She was able to spend a bit of time with her cousin Lucy, who obviously cannot go into Sage's room but blows get-well kisses on practically an hourly basis. With a cry of "Come on Sagey!," Lucy took it upon herself to lead Sage and "the entourage" around the grounds, and when Bug was ready for a little wheelchair time Lucy grabbed her hand and stationed herself there as Sage's very own personal escort. Big smiles all around, which we hope you will share when looking at the pictures below…
I write this next to Sage's bed. Beautiful Alice gave her a beauty treatment today, a trim and a manicure, and Nurse Jen gave her a bath and washed her hair, so Bug is fresh and clean and sleeping peacefully. As Lucy says, "Blessings for Sagey." And blessings and thanks for all of you. Sleep well, and please stay with us. We promise to do the same.