It's been a number that has been on my mind for a long time. Months. I check the calendar, I count back to February. How long has it been since the last time we had to take our son to the hospital? Nine months. Nine months of clear breathing. Nine months of hearing him speak in something more than a whisper. Nine months of pretending he is completely normal with no recurrent disease that could some day block his airway, or worse, spread to his lungs and cause a fatality.
Every cough, every raspy noise. Every time he cleared his throat I was on high alert. I watch for paleness, for fatigue, for shortness of breath. I listen to him breathe at night, his snores. Is it a regular snore? Or is that a blocked airway snore? Does he pant when he runs because he has asthma or is it something worse? And then the surgeries. Eighteen of them in the last seven years. The sadness, the terror, the anger, the questions, the hysteria and that one time on surgery #10 when I had a complete emotional breakdown in the middle of the hospital lobby as people hurried past me pretending not to notice that I was sobbing and wailing, alone, because my toddler son had been torn out of my arms by a nurse while he was screaming, "MOMMY DON'T LEAVE ME!!"
It was the first word that came to mind this morning when I woke up. Today was surgery nineteen and we had made it nine months, the longest we'd ever gone between surgeries.
* * *
I feel like an old pro now. I remain calm because it's routine. I listen politely to the nurses and resident doctors (who look like teenagers) as they explain things to me even though I've heard the explanations many times. I know they are doing their jobs and I let them. I have no place to go anyway. We're waiting on the real stars of the show anyway, the anesthesiologist, the surgeon.
I knit. And I can talk about the knitting now with enthusiasm when the nurses get so excited about my latest sock or hat. Before I wanted to yell at them, "Don't talk to me about this knitting, I'm trying to keep from going mad. Why would you talk about knitting when my son is about to go into surgery?" And today, the day of Nineteen I find myself explaining to the nurse how to make a cable knit, how easy it is, how I can do it without even looking while she explains to me the risks of anesthesia (hypertension, tachycardia, damage to teeth and lips, swelling of the larynx, sore throat, hoarseness due to injury or irritation to the larynx, heart attack, stroke, death).
I can knit while making eye contact as she reads the possible side effects. I could recite them myself because for eighteen surgeries I have had to listen to a nurse say that although death from anesthesia is rare it can happen.
Today, the Nineteenth Time, I marvel at my calmness, how none of it bothers me this time. And because of how we've handled it eighteen times, my son doesn't seem particularly bothered either despite the fact that just the night before he described to his brother how they will put a big tube down his throat and use a laser to burn recurrent growths off his vocal chords.
He's eight. I sat on the couch and watched them and thought to myself how nobody his age should need to explain all this stuff so clearly, so knowledgeably. And then I reminded myself how we've had it easy. Because we've known many with his disease who have had surgeries monthly or weekly. We've made friends with families whose children have since passed because they were defeated by their disease. Yes, we have it easy and I never let myself forget it. Except for my lapse on #10 I never, ever feel sorry for myself or for him because we have it GOOD.
* * *
It's the number of the surgery where we heard the doctor come in and tell us that he thinks we might be done for a while. That when he got in there he discovered there was nothing much to do. He did not use the word "remission", but indicated without saying so strongly that remission is probably what we have.
And I caught my breath and stared wide-eyed at his beaming face, but I couldn't return the beaming just yet because it felt too soon to hope. If I hope and it turns out to be wrong then I might have to start back at the beginning, back to the time when I broke down and cried in front of strangers, when I felt nothing but fear and despair. I don't want to go back there.
But in the waiting room, after the doctor had gone, I called my mom and told her the news and my voice quivered, nearly broke. I felt my eyes well up and felt the beginning of hope that Nineteen might be the last. Maybe not forever, but certainly for a long, long time.