After we received KayTar's muscle biopsy results, we had to order more tests to determine if KayTar actually does have a mitochondrial disease or whether the pathologist likes to read a little too much into subtle abnormalities. Well, the results are in.
Last night, our pediatrician called me and read the newest report to me, though, I still know next to nothing as I'm not an expert in these tests, nor is she. It is all blah-blah citric acid cycle blah-blah type II muscle fibers blah-blah mitochondrial dysfunction blah-blah-BLAH. I'm waiting for the neurologist's clinic to open, so I can call and get an official interpretation.
I didn't sleep well last night. I woke up nearly every hour and laid awake, "Will we know tomorrow? No, you know that even if it is abnormal, it won't be clear cut. But what if? What if this is it?" And shockingly, "What if the news is bad and after hearing it, we wish we could go back to this moment, to this existence of not knowing?" I don't think I've ever wondered that before.
In the past, instead of lying awake in bed all night I would have sat in front of my computer, releasing the words that churned inside my belly onto the freedom of the screen. Last night I realized I don't have anything new to say. This singular experience is a microcosm of our lives and of this blog, the history we seem doomed to repeat endlessly, waiting for answers that do not come. And yet, after nearly three years of waiting, I cannot resist the siren song of hope. She has had countless tests and not a single one has given a conclusive result, and I still cannot will myself to unclench my fist and release the need for an answer. This ceaseless, uncontrollable hope is a sickness and it can only be cured by first finding a diagnosis...for her.