This post is dedicated to my Papa, Dr. James Costanza (November 26, 1935 — October 9, 2015)
My arms are glowing. There is glitter everywhere. Glimmers of gold dust sparkle from my wrists to my elbows. Stardust twinkles in shades of yellow, sea green and iridescent blue. I extend my arms palms up, examining my forearms, twisting and turning my wrists in the warm hallway light, illuminating a host of glitter that shimmers up to my shoulders.
I track the glitter to my collar bones, while simultaneously attempting to sluff the stardust from my upper body using my open palms, but the glitter has adhered itself to my skin, like wet sand.
I step from the low glow of the hallway light into the brightness of my son’s sunlit room, positioning myself inches away from the mirrored sliding closet door. I carefully examine my face and neck. Shimmers catch the sunlight in various hues and sizes. My face is full of stardust.
“How is this happening?” I wonder out loud, suddenly frantic to free myself from the sand-like shimmers covering my face and neck, but the glitter has ingrained itself into my pores, illuminating my face with shades of yellow and sea green.
I begin to worry about what else and who else in my house might also be covered in iridescent, pore-adhering glitter. I mentally retrace my steps through the house, from the garage to the kitchen and through the living room—the home of my children’s preschool art projects—projects that are, more often than not, covered in glitter.
I stare into the mirror as I begin to gently brush the glitter on my cheeks with the inside of my index finger. I think back over the last week, through each painted piece of artwork—mentally packing and unpacking each painted, colored or stamped piece of construction paper or holiday craft from Everett and Nora’s preschool buckets—but I can’t recall glitter.
I look away from the mirror, down to my hands— palms up— searching for progress.
But my hands are free from stardust.
I hold my hands up to the light pouring through my son’s window, twisting my wrists, moving my hands back and forth in the bright light, but my hands are clear. I fan my fingers like starfish, searching for glimmers on my palms and the backs of my hands. But my hands are empty.
(Even now, as I write this, I still don’t know from where that glitter came.)
I look back into the mirror, at my glowing body and empty hands, at my face full of shimmers, but then a sliver of bright orange from the corner of my son’s mirrored closet door catches my eye. Everett’s bright orange Halloween costume— A NASA astronaut spacesuit and hat.
I slide the closet door aside, simultaneously parting a sea of puffy toddler-size coats and vests to see the front of the suit. I reach for the NASA logo sewn to the heart of the astronaut suit and softly brush the patch of stars and letters with my fingertips.
The patch—the NASA image and logo—is a part of me. An image woven throughout my childhood home, ingrained throughout my memory: the large NASA bumper sticker on my Dad’s guitar case, the NASA patch on the front of my 4T – 5T sweatshirt, the NASA stickers on the door of my little brother’s room, and the NASA logo on the front of my Mom’s white T-shirt and hat. All giveaway gifts and gear from my grandfather, an aerospace engineer. A man who worked for NASA, who designed pieces of space shuttles, who supported the hard work and progress of moving our world closer to the stars, the moon and the mysteries of the universe. A man who flew a plane to and from work for years. A man who was as close to the sun, moon and stars as a person in this atmosphere could be. A man who would have loved to see his great-grandson in an astronaut suit and NASA hat for Halloween.
My mind takes me back to the last time I heard Papa talk about his time at NASA. I don’t remember him often talking about his aerospace designs or his time at NASA, but one night, sitting around a table, forks and spoons down, my college friends asked my grandfather question after question about space shuttles, the moon, the stars and the mysteries of universe.
I remember listening to Papa and watching the faces of my college friends light up with wonder and excitement as he told us story after story about outer space and the inventions he helped create to get there.
I watched Grandma too, the way she was enjoying the wonder and bright eyes of my friends around the table. I remember she looked happy under the warm glow of the kitchen lights.
I remember feeling thankful we were talking about anything but lung cancer—Papa’s recent diagnosis and prognosis. The cancer didn’t seem real as we sat at the kitchen table wrapped in warmth, surrounded by good friends, family, conversation and the sound of the sea rolling through the open kitchen window.
The next morning, I sat with Papa at the kitchen table, over the newspaper and bowls of cereal. He had saved me the sections on fashion and art along with the comics—my favorite. He read the front pages, while I read about local art (saving the best for last). He set his paper down and leaned over his coffee mug to tell me he had gotten a “port” earlier that week. I wasn’t sure what to say. I didn’t know what a “port” was, and I felt embarrassed, even a little guilty, because I felt like I should have known more about ports, cancer, treatments and lungs. I felt like knowing something (anything) about a “port” might have showed him that I was working as hard as the rest of our family—our information-collecting, resource-finding, system-creating, difference-making family—to fight lung cancer. But I didn’t know anything about ports, radiation treatments or lungs. All I knew was that I was terrified of losing him.
When I said, “I know I should know this, but what is a port?” I watched his face brighten with a smile and his eyes light up as he sensed an opportunity to teach. Which made me wonder if maybe he had known all along that I didn’t know anything about ports, lung cancer or radiation and that maybe he knew I was scared. Perhaps, he even knew I was terrified.
As he began to explain the port, he unbuttoned the top of his blue-collared shirt, showing me the round port embedded in his chest. At first, I was scared. But, as we looked at the port together, as I heard wonder in his voice while he explained how the port was engineered, the mechanics of it, and its significance, and as he taught me about the invention that was now a part of his body and his life, I felt less scared. It didn’t feel like we were talking about cancer. It felt more like we were walking together on the moon, marveling at the stars and the earth, exploring the miracles of the universe.
When I think about my life and the challenges my family faces (life with a feeding tube, daily seizures, developmental delays, fragile lungs and frequent or prolonged illnesses), I am often in awe of how my family and my community have taught me—how they are teaching me—to receive our day-to-day life with creativity and wonder. I think about the photo shoot with Jessica Rice, when she and I blasted confetti out of the tubing of Nora’s compression vest. I think about Nora’s American girl doll and how my mother sewed a G tube into the doll’s tummy, because these days, there are so many ways a modern mother can feed her baby. I think about Becky Dean and her daughter Grace, Nora’s best friend, and how Becky looks at Nora and sees a ballerina, how she looks at Nora’s Rifton Activity Chair as a platform of creativity and expression. These people, like Papa, remind me to walk the path between the moon and stars, to hold fast to the confetti-filled chaos and star dusted miracles of my day-to-day life.
I stare back into Everett’s closet and start making a mental packing list for our upcoming trip up the California coast to Grandma’s house, to the warm kitchen and the sound of the sea. Her words from our last phone conversation echo in my mind, “It will be cold, you’ll need warm jackets for the kids.” I stare at the row of puffy toddler vests, sweaters and jackets. I step away from the closet, staring at my upper body still glowing with stardust. I begin to wonder if my children are old enough to visit Papa’s grave, the white marble wall, outside the bright church, facing the sea.
But I think I want to go alone.
I want to tell Papa about Everett—the great-grandson he never met. I want to tell him about Everett’s NASA Halloween costume and how Everett looks into the sky when he hears airplanes, how his eyes fill with wonder as he searches the clouds for planes in the sky. How I often wonder if Everett might fly a plane one day too, like his Papa, just to be close to the sun, the moon and the stars.
I’ll tell him how his daughter, my Tia, has become one of my closest friends, my safe person, my hopeful person. He has to know that she flew from Colorado this summer as quickly as she could when she heard my crackly whispers at Nora’s ER hospital bedside. She was on her way only moments after hearing the word that had become my breath prayer—“help.” I’ll tell him how she coaches, encourages and celebrates me as a mother and as a writer. And when I sent her “The Mother Who Found Her Voice,” she told me, “Papa would be so proud of you”— words that gave me the courage I needed to post and invite others to read it.
I’ll explain how Nora’s feeding tube is part of Nora’s life and body, just like his port. I’ll marvel at his clever and inventive daughter, my mother, and the matching G tube button she sewed into the stomach of Nora’s doll, and how the doll’s G tube button somehow makes the feeding tube less scary for the people around Nora. Their eyes fill with wonder as they have an opportunity to see and understand the well-engineered miracle before them.
I’ll tell him about the unexplained stardust that covered my arms, shoulders, neck and face, and how I think in some cosmic way, the universe—even God himself—is showing up again and again, arms open and palms out, through glitter and song, to remind me that I am not alone in this, and the universe is (actually) on my side. I’ll explain that I am tired and it has been hard for me to see and receive wonder, hard to holdfast to the miracles and beauty of my day-to-day life, and it seems like it has been even harder to manage the pain. But I’m trying to open my arms—hands out and palms up—to receive beauty and wonder. Because, regardless of the next painful piece of this journey, regardless of the next diagnosis or prognosis, I want to run towards wonder with open hands. And the only place I can imagine beginning again is at the white marble wall by the sea.
Before I go, I’ll kiss the marble stone. I’ll tell him I love him and I miss him. I’ll carefully arrange painted pictures from Nora and Everett—ones decorated in stardust—and I’ll leave a copy of my most recent story, “Stardust and NASA Stickers,” against the white wall facing the sea.
I stare again at my palms, studying the creases of my hands, moving them back and forth in the sunlight. I notice a single iridescent glimmer—a speck of confetti-green stardust with a hint of blue. I close my hand tightly around the stardust. I turn from the mirrored closet doors towards the light of the window, facing the sun. I close my eyes tightly and say a prayer—a prayer for wonder. I open my eyes and uncurl my hand. I raise my palm to my breath and softly, carefully blow and watch as the glimmer of stardust soars into the light of the sun.
Photo: Jessica Rice Photography