On the gift of time
By jennifer on in Uncategorized with 12 Comments
I am thinking about time lately. How the days can be so long and the years so short. I am at a loss as to where the decades of my life could have gone. The future slips away more and more quickly now. Soon, I think, all chance of the life I meant to live will be gone.
Since Jessica was born, my life has been one long caught breath. We careen one from disaster to another, not all of them medical, but all of them made, in the end, by the disease she has braved for all the days of her life.
That was fifteen years ago, when doctors first placed her in my arms and then took her away again. Fifteen years, a century, a second. Some days it is all of these at once.
July is her birthday, and exactly two years ago the hardest days of my life began. Harder even than the days after her birth and the devastation of learning her diagnosis. Harder because she is a young woman of imagination and stubbornness and flashing brown eyes; she is not an abstraction. She is. She has taught me almost everything I know about living, and to lose her now is a thought I cannot contemplate without gasping.
For two years we have held on by our fingers as the clock ticks down, more tests, more surgeries, and always fear, so much fear. The days go by in stop-motion, jerking forward, holding still. I’m in a very bad movie and I can’t get out. There is no narrative arc, no denouement, no roll of the credits. A badly flawed script, and I just have to keep reading my lines and doing the dishes.
And then when I least expect it, when I am bracing myself for the worst news ever, and holding tight to Jessica’s hand because this time they will have to wrench her away from me; this time, I am not so naive: her neurosurgeon says, “If I were an optimist, I would say she is improving.”
Looking at the words now I can see where you may have missed the part about the good news, but that was it; I was expecting to discuss the chances of permanent disability and death.
“Improving?” I echo, in tones of disbelief.
“The measurements show improvement, but only within the margin of error. But we can say she is not getting worse.”
There was a time when “she is not getting worse” would have seemed paltry, not enough, not nearly enough. But those days ended a long time ago.
“She’s stable,” I say, and some part of my body unclenches for the first time in two years. I grip Jessica’s hand tighter anyway.
“And so,” I say. “We just … follow up? Sometime?”
“So … six months?” I test, expecting him to say “three.”
“A year,” he says. “That will give us enough time. Unless her condition deteriorates before then, and you will monitor that.”
There was a time when my mind would have fixated on the uncertainty of “unless her condition deteriorates,” but this time my mind fixates on the promise of “a year.”
Anything could happen in a year. I could move to Paris, or fall in love, or write one true thing.
“Well, that is good,” Jessica says, staring at her father and me like we are insane because we cannot seem to speak. Good news has never so completely shocked us before.
“It is fabulous news,” I say, and the neurologist runs through the signs of deterioration, but not even that daunting list can deter me. We have been given a year.
The possibilities sparkle in a way they have not for a long time. I am greedy and I want them all, every glittering treasure.
“I would like some lunch,” Jessica says, and that seems like a very good place to start.