“The people who walked in darkness Have seen a great light; Those who dwelt in the land of the shadow of death, Upon them a light has shined.”
Isaiah 9:2 NKJV
Christmas in the hospital during a dark season of declining health of our child… there is a shadow of death in our planning and conversations. It feels lowly, blue. It feels exhausting, draining, whatever new words you can think of in that vein. We are deeper and deeper. And yet, the true meaning of this season is close to my heart, perhaps more than ever. Into the dark, into the ugly, into the stinky stable parts of our lives, the great light is anticipated, awaited, needed. There is no sparkle to this scene, true light though can engage with these despairing times.
Today I spent a good amount of time walking through this transition with the Palliative care team. They helped me to process how to discuss the changes with our kids, how to give them opportunity to share their hopes, questions, worries. To allow them to say what is most important to them during this time. They helped walk me through code status options at home and at the hospital.
It does not feel like good work to process these decisions. It feels gross. But if we do build this framework now, it should allow us to give our family focused time together pursuing what is most important to us instead of individually harboring worries about what may come in the future. We are hoping for more laughter, more happy years even. I hope for more focused moments to express how precious they each are for who they are.
I also had conversations with the medically complex care team about central line versus picc line, single lumens, double lumens, ect. They are going to reach out to the infectious disease group about risk factors. I am still hoping to talk through all of it with the general surgery team as well. Who knows though, this week and next may not be the best for actually accomplishing any work around here.
Most important of all, Aimee is doing great. We got her up in her wheelchair for a movie. She slept through it completely, but so comfortably. She smiled today. She was more awake. Tomorrow we will start back to our regularly scheduled programming by unpausing the med trial for something to help her stay awake more. I was able to reduce her trach cuff for a few minutes here and there to allow her to make noises. Beautiful little noises.
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