A year.
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?”
“Yes.”
“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.
Oh, I’m crying for you guys – good tears. Happy ones, as bebe tells me… You’re absolutely right – anything can happen in a year!
Oh my. What an inspiring story. Tears have been shed here at work. My thoughts and prayers are with you guys.
Again I am struck by your courage as well as Jessica’s. I cannot imagine what you have been going through over these years. Jessica’s simple acceptance of the cards she has been dealt is a lesson to any adult lucky enough to meet her. So what do I have to complain about? Nothing. God bless.
Awesome. Just simply awesome. What a wonderful gift this. I am so, so, so happy for both of you. Looks like you’d better get serious about this Italy trip.
I read this holding my breath, I realized after the fact. I’m so happy to hear the news. And Jennifer, you’ve written a very true thing just with this post, along with the rest of them! I hope your celebrating still!
This evening, I am attending a visitation for a man I cared for 3 days a week for the past year. He died of ALS. Your post has such meaning on so many levels. I hope you find the strength you need and thank you for sharing a piece of it with the rest of us.
With deep sympathy and with congratulations,
-R.T.
You and Jessica teach me so much with your perspectives on life. Only knowing Jessica through your posts, I see her as one of those special beings who despite what some people might consider “limitations,” carries within her the wisdom of the ages. I love how you write about her and about your life together.
I’m feeling grateful today for your unexpected gift of time and for the perspective you continue to give me.
Your strength is an inspiration to us all. I’m happy that you’ve received such good news.
My sister–who is more daughter than sister (she was born when I was 18 and well… every unhappy family is unhappy in its own way)–was diagnosed with bone cancer when she was 5. Her condition has not put her on a clock, but her body and her life are touched in ways that I notice–and she doesn’t–because she knows nothing about “normal.” Lately, I have noticed a developing limp, as tumorous bones in her leg push her angle away from her foot. Instead of a steady line from ankle to floor, Gloria’s foot pushes away at about a 30 degree angle from her ankle, and I know it must hurt, but she is used to pain in a way that I cannot imagine. So when I ask her if she is ok, she humphs and says, “Yeeeessss, Jessi,” in an exasperated voice. (She’s 13). So we go back to our business of painting pottery, and playing Pokemon, and whatever she wants to do, whatever she thinks is normal, and I try to forget that there could come a day when her legs or her arms might need amputation… I try to just be normal, too. Good luck and continued blessings, Jennifer. Thank you for sharing this one true thing with us all.
Congratulations. Not only on the good news, but that you can recognize it as such. That’s a wonderful thing. As I read your posts, I’m struck by how much I relate. It seems as though you deal with what every parent does, just amplified. I think it’s wonderful how you relish every moment. We all need to do that more.
Dear Jennifer, I am touched by your writing, because it is always heartfelt and true. My happy thoughts are winging their way to you and your precious daughter.
I am sighing with relief with you. I have come to love you and Jessica through your writing. Every day is truly a blessing and a year of blessings is truly wonderful.