on jackie.

Each time I sit down to write about Jackie, it always begins with the same sentence "she's her own kind of perfect." That's also where I usually stop writing, my finger hovering over the space bar, because I don't know what to say beyond that. She is broken and by every definition fragile. But still, to me at least, mind-bogglingly perfect.

Once a month, I throw some clothes in a bag and catch a train to New Jersey. As soon as I'm there the bag gets tossed aside, the baby is kidnapped from whatever brother happens to be entertaining her at that moment and then I hold her face up to mine to whisper my hellos. I look for a flicker of recognition and some part of me hopes that she'll smile, knowing that the chances for both are slim. She looks in every direction but mine, and still my heart regularly explodes. Her eyes. One eye, her right eye wanders off randomly. Her eyebrows also go up and down so that she constantly looks surprised by what she's seeing. Surprised by what's in front of her and off on the periphery, where her right eye is exploring things. She looks ridiculous and heartbreakingly cute.

I have never loved someone more or wished for the outcome to differ from what it will likely be. Probably not today (it's been months since her last uncontrolled seizure), but eventually and entirely without warning she will be there, nose pressed up against mine and then, she won't. This is the part that I cannot accept. This knowledge, the result of articles and google searches that always leave me bargaining with God.

Her last trip to the hospital, for an annual check-up that we'd known about for months, showed an almost constant rate of seizure activity. We hadn't prepared ourselves for that blow. Or, maybe it was just me that was unprepared. I sometimes manage to convince myself that she'll outgrow all this. That she'll get better as she gets stronger. I tell myself that she's beaten the odds so far and so, no one can definitively say what her future will hold. It's a mental pep-talk that keeps me from focusing on what might be, and focusing instead on how perfect each moment with her is. Even so, whenever she ends up in the hospital, I become painfully aware of the delicate balance between life and death, and how absolutely incapable I am of handling that transition with any sort of grace.