These past two years, my daughter’s story has been the story beneath everything else I think about, or feel, or write, or do. Today, we have a name for part of what she’s facing.
Results from baby Inara’s MRI are in. She has mesial temporal sclerosis: scar tissue in her brain. The cause: her repetitive cluster seizures in the winter and spring of early 2012. The impact: it’s probably the reason for most of her developmental delay, and for the period in 2012 when she lost skills she’d previously gained. (She’s now gaining again, but the months after her seizures were difficult.) We don’t know yet how bad (or not bad, relatively speaking) the sclerosis is; we have follow-up appointments with neurologists and epileptologists to debrief and discuss options.
I am taking the news with some degree of soldierly stand-at-one’s-postness. It could have been far worse–what we were actually checking for, in the MRI, were lesions. There are none. On the other hand, ever since those seventy-some days in the hospital with her, I have feared there would be lasting damage. That fear proved founded. Now we’ll wait to find out how severe the damage, and whether surgery will be needed to remove it.
I wrote this on the last pages of No Lasting Burial, about that winter that began 2012:
I sat in that hospital by her bedside, in the cold of winter. It was warm enough in that carefully sterile place, but I felt cold. I felt angry. I felt exhausted, and determined. The wind that rattled the windows one night seemed to hurl against the hospital glass all the moaning horror and shrieking of the shedim.
Now my daughter is improving, and we are on the other side of that time together. Yet those nights by her bed are recent in my heart, and they hurt. I don’t know what this past year has meant, only that the love I now hold for those I call my own is fiercer than anything I have ever felt. I have learned that hope, which I had thought small and delicate like a moth in the night, can be hard as steel, a blade with which you cut your way through a press of moaning and hungry foes.
Today, knowing the name (mesial temporal sclerosis) of something afflicting my daughter is both anxiety-inducing and comforting, strangely. Now we know there is a wound, and we know the name of that wound, and soon, we will know what to do about it. We have been given much cause for hope this past year, her mother and I. After the initial shock of the news, all this MRI really means is that we now know just a little more than we did yesterday, and we will be better able to help Inara than we were before. May she continue to improve and grow, my beautiful little girl.
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