"She can understand some of what you say, but doesn’t talk."
"She is umming because she is happy."
"She won’t understand to not wiggle when you poke her in the arm with an IV, so we need to hold her still."
"She likes you and want’s you to hug her."
"She hasn’t had a major seizure for four years. She still has small ones."
"Yes, we’ve seen a geneticist."
We are back in the medical world with Farah. Lots of preliminary office visits and two kinds of short hospital stays to do tests. In this world, Ana and I are Farah’s interpreters and talking medical history encyclopedias. We are dreading the week in the hospital after her surgery.
The way she lives in the moment is an inspiration, but … in this case, there will be pain, and she won’t know why or that it will end. She can’t tell us about it and minimize it by packaging it up in words and turning it into a story about how much it sucks. I fear that she’ll just get wrapped up in it.
Her MRI was much more complicated because we can’t communicate. She can’t understand not to wiggle for an hour, and so she needed to be sedated. And so there was an IV, and she couldn’t know not to move as they fished around in her arm with a needle. I think it would be different for us if we knew she understood it better. It seems even more mean that she doesn’t, and instead just sees two people holding her arm while another stabs it with a needle.
And then they wheeled her off, asleep, into another room and we went to the hospital cafeteria to wait for a few hours, and the maze of wide hallways, fluorescent lights, and endless doorways reminded me of the two weeks I lived in the Children’s Hospital with her. After several days I felt like I was at sea, on a long passage, far removed from the normal world and instead stuck on board a weirdly quiet, sad, and tense ship, with Mom’s sitting alone and crying in the basement cafeteria.
I’m so glad we’ve been mostly away from the world of hospitals and doctors and tests. That Farah is not medically fragile, and that this will probably be over in a few months.