Chapter 33
Of all the stories I have read about heroes, for one thing I am certain: We can all be heroes in our own lives, even with all our flaws, baggage, fears, and uniqueness. Not one of us is perfect. If I were to continue to strive for the perfect ‘normal’ life, I would be sadly disappointed. It doesn’t exist. The grass is not greener on the other side. The next-door neighbor doesn’t have a better life than I do. It’s just different, with a different set of problems. Even Andrew’s heroes have their own Kryptonite. And just like us, their story never really ends. There is always another chapter, a sequel, another movie. A hero goes through the same trials as us mere mortals, and the story still goes on.
When I ask myself when our story will be finished, I find I cannot answer. Will it be the day Andrew is set free from all the medications, infusions, and appointments? Will there come a day when I get a call saying, “Your son is well now, he has no sign of GVHD, no Trisomy 8 in his body?” Will I believe it? Will I lay my head down that night, allowing the fears and anxieties of the last two decades to melt away into the earth? Or do I sweep the nightmare under the carpet and pretend it never happened? Is it possible to feel whole again? Do I really want to be the person I once was? The truth is, I don’t think I would fit in her skin.
All these questions were bombarding me as I set the table for dinner. I was adapting a favorite soup recipe to Andrew’s dietary restrictions. ‘Mommy Minestrone’, my children called it when they were little, and they had asked for it by name today. As I pulled ingredients from the pantry, I heard Hannah and Andrew in the playroom down the hall, bickering over an X-Box game.
“Just play this one with me, then I will play HALO with you,” Hannah pleaded.
“Noooo, Hannah!” he grumped, followed by the sound of video games being knocked over. I sucked in my breath, knowing how long Hannah had worked to stack and organize them. I peered around the corner to catch a shock of red hair exiting through the garage door. Hannah called out to her brother. Silence. A minute passed before the sound of the television floated into the kitchen, and the faint glow of the screen seeped into the dark at the end of the hall.
Gathering my stack of carrots, celery, onions, and a zucchini from the garden, I set about dicing them for my soup. Finn was at my feet, hoping for scraps to fall off the table and into his mouth. “It’s not gonna happen,” I told him, nudging a furry rump with my toe.
Dropping the veggies into a soup kettle hot with olive oil and freshly minced garlic, I slowly begin to stir. Just until the onions become glassy, I told myself.
Hannah’s heated words drowned out the TV as she began arguing with Andrew again. When did they start arguing so much? What was the problem this time? I couldn’t tell. As long as nobody was mortally wounded, I figured they could settle it on their own.
Without thinking, my hands chopped a bunch of fresh basil, then plucked tender leaves from the woody stems of an oregano plant. They would go into the soup after the tomatoes, beans, and chicken broth. And then, at the very end, when the flavors had time to meld, I would add salt and pepper and red pepper flakes for a little heat.
My little radio behind the kitchen sink crackled. Laura Story’s comforting voice streamed into the kitchen in a staccato of static. Jon had offered to wire the kitchen for speakers, but I liked my scratchy little radio. Laura was singing “Blessings.” I swayed to the music, singing:
‘Cause what if your blessings come through raindrops?
What if your healing comes through tears?
What if a thousand sleepless nights are what it takes to know?
You’re near
What if my greatest disappointments or the aching of this life?
Is the revealing of a greater thirst this world can’t satisfy?
What if trials of this life?
The rain, the storms, the hardest nights
Are your mercies in disguise.
I continued to hum, reflecting on God and how my vision of Him had changed in the past years. I knew in the very deepest part of me that He was not only a man. He was the lake, the light, and the wise women who counseled me. God used the nurses and doctors who helped us—Julie, Sue, Becki, Anne, Diana, Leah—and everyone else who arrived when we needed them. God was the color of the Parisian sky in my oil pastels, and was in my fingers that created the picture of my flaming heart. God was the chicken that loved my son, who called for him at the gate every morning.
I thought about how we were all moving through our grief. How it was finding its place in our lives, shaping us, refining us, changing us. The great Alchemist had done his job, and somehow we had emerged through the fire, forged of stuff altogether stronger than the individual pieces that went into the making.
For me, acceptance of this life had been difficult. It wasn't until I was willing to live into the reality of our story that I was able to let go of the picture perfect plan I had counted on. Once I accepted our new way of being, I wondered why I hadn't done it sooner. It wasn’t simple or easy, but it felt so natural, so right. I had finally made my peace with it.
My singing was interrupted by Andrew shouting from the hallway. “You still can’t sing, Mom! You’d never make it on American Idol!”
I shouted back down the hall, “You’re wrong! I’m sure I’ll be in the top ten!”
The sound of a resumed video game floated into the kitchen. I breathed in deeply, then sighed, as the pleasure of preparing a meal for my family registered in my overtired brain.
When dinner was ready, I wandered down the hall to invite the kids to eat. Jon was due home any minute. I found Hannah sprawled across the day bed, her chin in her hands, feet up the back wall with her toes making circles around a long forgotten dinosaur poster. Andrew was sitting in a chair with Frightful in his lap, absently playing with her wing while talking to the television. Frightful looked up as I walked into the room, staring at me with her yellow eyes. “We’re all good here,” she seemed to say. I put my hand across my mouth to conceal a smile.
Hannah caught my eye with a look that said, “I tried to tell him!”
My first instinct was to admonish him, repeat exactly what Hannah’s eyes had conveyed: chickens don’t come in the house, but something held me back. It was like a set of arms wrapped themselves around me, held me in place and said, “Look! Look at what is here in front of you! What do you see?”
My mind worked slowly, assembling together the pieces of the picture. We were home. We were okay. My grown children were bickering like siblings do. Andrew was healthy, his face just now showing some color. After graduation, with the help of a job coach, he had landed a part-time job as a prep-chef in a local catering kitchen. In a few short weeks, Hannah would be starting her junior year in high school.
The playroom, now a media room, was a mess, littered with empty cups, plates of half eaten snacks, and piles of video games spilling from the shelves. It had been an unremarkable day—nothing special or out of the ordinary. We were simply living.
I heard Jon’s car in the drive as an answer formed in my mind.
What did I see?
I saw that we were living out the answers to our agonizing prayers. We had been given a new life, one we were still learning to embrace. We discovered that a willingness to change was not only the secret to survival, but the secret to happiness. And out of that would come joy—someday.
I imagined Jon walking in to this scene. What would he see? Would he notice the mess, the unmade bed, and a dusty chicken sitting on our son’s lap? Or would he sense the magic that lay beyond the mess? Would he understand the significance?
The door to the garage clicked shut and I felt Jon behind me, his hands dropping the usual stack of mail and bills at our feet. His arms wrapped around me tightly, replacing the invisible arms that held me back just moments before. He shifted his weight so his chin rested on the top of my head, and I felt him take in the scene before us: looking from Andrew, to his chicken, to Hannah sprawled on the bed with a smile. So ordinary, yet extraordinary. My hands reached up behind me, searching for Jon’s face. He grasped them in his own hands, bringing my palms to the sides of his head, then sliding his hands down my shoulders, my arms, and finally to my waist where he pulled me in close.
“I’m home,” he spoke into my hair.
As I stood there in that room, anchored to the earth by my husband’s arms, I knew without a doubt that I lived in the company of heroes.