(Aria January 2008 Photo Courtesy of No Worries Farm)
I snapped this photograph just before we packed into our car to go to the hospital where Aria was going to be admitted and our cancer journey would officially begin.
I can't tell you what made me think to capture her at this time. As I look upon it now, I'm certain I was trying to get as many images of her as possible knowing that these might be her last.
This essay is something I wrote describing the suspended reality of those first few moments of the journey.
Surreal is how I describe the experience. Of course, that’s the right word. Except it’s too small. The pastoral landscape along my school-route commute dimmed as if the crispness of the cold snowy January day had been smeared with wet ash. I drove the speed limit but the car crawled like being stuck in rush hour traffic. I parked along the curb next to the school barely remembering how I got there and took some deep breaths as I stared at my baby sleeping soundly in her car seat. When I looked out the window, I saw Reo and Aria lined up ready for me. They ran into my arms the moment they saw me. Aria lifted her left arm above her head showing me that she didn’t have pain and then shared her preschool treasures. I knelt on the ground willing this moment to last forever, knowing that as soon I stood up, life as I knew it was gone.
I strapped them into their car seats memorizing their faces. They sensed the tension and quietly waited for me to speak. I cried first. Guys. Listen. I’m feeling really sad, so try not to be scared if you see Mama cry. Aria… We are taking you to the hospital today because you are very sick and there are doctors waiting to help you. Right now we’re going to go home, grab a snack, and meet Dad. Together we’ll drive to the hospital.
They didn’t say a word. At the time I couldn’t utter the words leukemia or cancer. I simply did not want to believe it true. On the way home, I gazed into the snow- dusted wheat fields and watched the color of my life, as I had painted it, dribble into a muddy puddle. What I had imagined of the future, looked like a penciled outline on an enormous canvas I hardly recognized. My every movement, getting out of the car, helping the kids, holding the baby, juggling backpacks and school papers, was stiff and robotic. Lighthearted goldfish snacks, grapes, and apple juice boxes were juxtaposed against the unrelenting fear-filled weight of cancer, chemotherapy I didn’t yet understand, and the real possibility of death.
I wanted the silent, twenty-minute drive to the hospital to feel safe. I muttered sentiments of courage but I didn’t feel brave. With every passing mile, my eyes darted around searching for positive signs for what lie ahead. Nothing. Only a wrenching feeling that something awful was coming closer. The sensation reminded me of watching video footage of tornadoes. Storm chasers seek potentially life-threatening storms, putting themselves in positions where they know there is no escape and nothing to do but film the impact and hope for survival. My eyes became a camera, taking in every detail along the way. Full impact of our a new reality, including the devastating fear that Aria might die, thundered when two metal doors closed as we entered the oncology ward.
Checking in, signing consent forms using a Mickey Mouse pen, I looked around the waiting room that reminded me of a small daycare. All added to a growing sense of unearthly doom. Surprisingly, my vision sharpened with every detail registering in high definition. The experience was like putting on swim goggles, forgetting to peel away the protective covering and then after doing so, sinking into a crystal clear under water world.
We cautiously walked into the playroom. Aria climbed into her dad’s lap and buried her pasty sullen face in his chest. I think she finally gave herself permission to drop the bravado and feel sick. Reo found toys to play with while I held the baby. I clutched her to my chest like a life preserver. I needed to hold onto life because death felt too close. A lovely, cheerful nurse walked into the room, picked up Aria’s limp arm and put a hospital bracelet on her wrist. Despite signing consent, I hadn’t voiced my permission. Inside my mind I screamed, Noooo! This can’t be happening! I watched helplessly and felt my stomach knot. The first of several that would happen throughout the day. Already, too many new pieces of this journey were in motion and beyond my control.
I asked the nurse, Is this standard procedure or something?
She smiled, tilted her head slightly and with tender eyes said, My understanding is that you are being admitted today. Is that your understanding?
It was but I denied it.
No. I thought we were here to determine IF Aria had it.
I still couldn’t say cancer or leukemia.
The nurse took a breath. Her eyes searched mine trying to find something to say. I remained speechless.
Doc gave me a hard look and said, No. We understand we are being admitted today.
I stood up and started to pace.
A few minutes later a mother and her daughter walked into the playroom and sat down at a table and started to play GoFish. I guessed the young girl to be around eight years old. She was thin, pale, bald, and sunny. She and her mother were giggling, thoroughly enjoying themselves. I loathed their happiness and hated seeing them there pretending to be normal. It never occurred to me that they could actually be enjoying themselves. Aria, glued to my husband’s lap, stared vacantly, pale and miserable. How on earth could this mother and daughter find even a thimble-full of joy in this wicked place?
I sat at their table to find out. I squeaked a hello and asked how long they’d been coming to clinic. I’m sure we exchanged small talk and nice-nice but I don’t remember. The mother told me that her daughter had been in treatment going on five years.
Everything in the room vanished at that moment. I thought I had fainted and fallen off my chair. Five years? I had no idea that a cancer journey could last so long. I don’t think I said anything more than, Wow. I’m certain my mouth was wide open for a long time. The woman stared at me and with a knowing smile asked, How long has it been for you guys?
15 minutes, I said.