‘We have an answer, and it isn’t the one we had hoped for,” the doctor looked at us with a professional demeanor.
In his cramped office, he had moved his chair around to the other side of his desk, so he could sit close to Ana and me. I registered that this wasn’t a good sign.
He laid out several printouts of the colonoscopy report on his desk, flattened each, and then traced the jagged lines of the colored hues with his pen as if pointing out directions on a map. I leaned forward and studied it like I might be able to understand.
Behind the curtain, my thirteen-year-old girl was asleep, still under the throes of anesthesia. She had worried herself to sleep during the colonoscopy, a single salty line of tear dried on her soft cheeks which she probably did not even recall. Her hair — those dark curls — was matted down after an hour in the OR.
As the doctor spoke, I sat straight, almost too straight. IBD, Ulcerative colitis — was the prognosis. Rare, but getting common, he said. I absorbed everything he said yet the words were coming too fast, a torrent. They were disintegrating, falling apart in my mind. I kept looking down at my perfect, beautiful Jenny. Her legs peeking through the curtains, the curve of her skinny back. I now have a name for the mystery ailment that plagued her. I sigh in relief before anticipation and a slight tinge of worry take over.
“We have to work on controlling the inflammation immediately,” the doctor said. “There are a limited number of medications we can try — the most effective we will prescribe. You can get it from a pharmacy. There are side effects though — ”
“What happens?” Ana’s voice sounded like it was coming from a cave. “What happens if the inflammation isn’t stopped?”
“Colon damage from repeated inflammation. Possibly cancer down the road due to the open sores,” said the doctor. He didn’t blink or hesitate. He said it softly.
On his bookshelf, I noticed, there was a photograph of him with his wife and daughter, at what appeared to be his daughter’s college graduation.
The bones in Ana’s face seemed to shift. I reached over and held her hand, held it tight. What was going to happen to us?
“Every single day counts,” the doctor said.
The doctor’s receptionist knocked on his office door.
“I reached the CVS,” she says to the doctor. She hands us a printout with a list of medications listed in chronological order.
We drive crosstown in our tiny Civic, with Jenny strapped into her seat behind us. She is talking as if nothing has changed. But our life as we know it has changed, even though we do not recognize it just yet. I am listening but barely registering.
We pull up in front of a CVS on Islington road. I had passed the building a hundred times or more in the years I had lived in the town. In what seemed another life, I had speed-walked down Islington on my way to the downtown library without giving this place a second glance. I had dined at a nearby restaurant during the winter.
Now, I waited in the back of the car with my sleepy girl as my wife walked down to the pharmacy and waited in line — Something that would become second nature to us going ahead. The queue moved ahead, where a pharmacist was waiting to give her a packet of medication — Each medication, over the years as it changed, became our next ray of hope.
I didn’t believe that God had caused this to happen. Nor did I believe that, by praying to him, he would spare us. Still, every moment of every day became a prayer. Soon, the medication later came in the form of an injection, delivered via FedEx from a pharmacy in Atlanta. Each packet of injection — into two single doses. The ritual of opening the box with a knife every two weeks became a prayer.
Over the coming days, I searched for reasons — a way of understanding our being on the wrong side of such a statistic. Seventy out of a million babies. Somebody had to be one of the seventy, didn’t they? Why us? Why not us? I blamed the environment: maybe it was the water we had used to drink. I blamed modern medicine: maybe it was the DPT vaccination she had received at her six-month checkup.
But mostly, I blamed myself. I was the father. It had to be my fault, somehow. Maybe it was the shitty food we ate years ago to save money or the fact that I sent Ana to India when she was pregnant. Or the stress of my last job before she was born.
It didn’t occur to me to blame God — nor did I think of asking him for any special favors. Yet my prayers continued. Watching my little girl’s face become pale — A sign of blood loss, her nails getting whiter, her breathing heavier due to iron deficiency.
I watch her face for signs of worry — Things that she wouldn’t tell me. I held my breath as if my breath itself were a prayer.
Each night, I put the girls to sleep — as I had since the day they were born — I told them a story. Now that story was as long and meditative and devotional as a prayer.
As I told the stories of how the little prince vanquished the giant, my impractical brain tried to find schemes to slay this disease while my practical brain kept telling me — It’s chronic. Learn to live with it Z. The faster you make peace, the happier you will be.
If I missed even a single word of the story, I had to start all over again. Next — even if she was fast asleep — came rounds of “Sarosh Yazad Panah baad”, the prayer for the guardian angel of sleep, once for each of them as my hand slowly curved over their sleeping heads — Afraid of waking them up.
Then I closed my eyes until all was darkness, slow and quiet. I watched her breathing heavily, in silence.
Please watch over my daughter and keep her safe.
Please keep her safe while I sleep…
I whisper over and over again.
All in complete darkness with Mr. Melbourne, her teddy bear as my only witness.
Please…..
Never once did I wonder who, if anyone, might be listening.
