A lot of you have been checking in about Johanna, thank you so much. Here it is:
This was a very bad, very good week.
My baby had her third surgery up at the Madison Children's Hospital on Wednesday. It didn't go as planned. Her nose didn't respond to the cauterizing and dilating, and then she was unable to wake from anesthesia for a very long time. I watched her scream. I watched her bleed. She was issued heavy narcotics. She couldn't eat from a bottle to feed her hungry belly. It was very bad.
Or here's another way to say it. The surgery went exactly as planned, though Johanna was no longer receptive to these procedures. I watched her breathe. I watched her heart beating. She was cared for appropriately by world-class doctors who were able to nourish her through IV fluids. She's finally at home with us in Illinois. It was very good.
Same story, told from different extremes.
Extremism is everywhere lately. Whatever you may think of our President, his rhetoric certainly tends to point out the biggest, the smallest, the smartest, the dumbest, etc. But our lives exist on a spectrum. And to tell a story from one end of the spectrum is to tell an incomplete, oversimplified story. Because on the same day, the sun that feels the "the hottest" is also allowing plants "the greatest photosynthetic processes," which absorb "the most carbon dioxide" which makes the earth "the coolest." (Science nerd example, I know; I can't help it.)
What I'm saying is, my daughter's syndrome has been helping me look at the world more completely. When people ask how she is lately, there is no short answer, no single superlative. She is a very light-hearted baby with some very heavy health issues. She is doing very well, and she is doing very poorly. There is cause to be pessimistic, and there is cause to be optimistic.
Basically, she is just like the rest of us: good and bad, up and down, sad and happy, all at once.
I like to think about that concept when I feel upset. Because at the very same time that things are upsetting, there is also comfort to be taken somewhere. Maybe this idea will give you some too. <3 I'm off to spend time with the babes. I hope you're well, Reader. I'll see you next Sunday. -Em