Aimee’s hazel eyes opened wide in the dimly lit hospital room. She elevated her bed and switched on a light near her. Immediately, she grabbed the necklace she had begun to string the night before and started to add more beads.

The night had been rough, with a beeping IV at the end of each chemo infusion, and later, a predawn blood draw. Our plan was to leave the hospital early, arrive at home in time for a family breakfast, and get to school for first period at her junior high.

Nearly eight years after her acute lymphoblastic leukemia diagnosis, and another relapse recently, Aimee was enduring an intensified chemotherapy regimen with weekend hospitalizations twice a month and attempts at normalcy in between.

“Maybe you should just try to get a little sleep, Aimee,” I suggested.

“No, Mom. I really want to string these beads. Doing this helps me feel better and gives me lots more energy. Besides, I want to wear this necklace for my eighth-grade school picture.”

I let go, trusted her judgment, and felt a comfortable softness inside.

From the time of her leukemia diagnosis at age six, creative projects sustained Aimee during hospital stays. She seemed intent upon transforming her suffering into beauty.

In addition to activities the hospital provided, Aimee always had other projects from home with her. Toward the end of her life, we frequently lugged our portable sewing machine with us and positioned it on her food tray table, which we placed alongside her bed. She perched there for hours during one hospital stay—sewing boxer shorts, each of a different, thoughtfully-chosen fabric, seventh-grade Christmas presents for her friends.

The frequency of hospital stays called for simplification of our imported projects. Aimee’s bead workshop at Camp Tecumseh two summers earlier instigated yet another creative passion for her. Beads were light, sortable, easily organized, took up little space; they had storage boxes specifically designed for them. And Aimee loved beading—its focus, the beads themselves, the beauty of the finished products, the opportunity to thrill another person. The nurses loved Aimee’s creations, leading to the start-up of Aimee’s Bead Shop at the hospital, complete with a sign that hung in the window of her room. I don’t remember cash being exchanged; I do remember “special orders.” At home, she beaded with her best friend, Erin, and her sister, Molly. Aimee made necklaces to match her outfits; I still have them, wear them, never take a trip without one. She created a beaded gift for each of her friends in the last year of her life. Connectedness all the way around—in life and death.
Creative, exploratory behavior was not new for Aimee. From an early age, she examined anything she could see with her eyes or reach with her hands. She grabbed at mobiles, attempted to scribble with crayons, pounded on her little cobbler’s bench, easily joined song circles, loved to march with bells on her wrists, and created conversations with her puppet, Charlotte.

Both Aimee and her younger sister, Molly, had expressed their creativity before the grief of cancer invaded their childhoods. I can still see them sitting at their yellow-and-turquoise Care Bears table—drawing, coloring, painting, cutting, gluing, positioning stickers,
making up songs—later, sitting together in a large, comfortable chair, Aimee reading to her little sister, the two of them chatting and laughing. Sometimes, an elaborate arrangement of Afghans and stuffed animals occupied our white laundry basket, which was pulled around our family room with giggles and enthusiasm. I didn’t always understand their escapades, but refrained from getting overly cognitive about what was going on. Weekend shows featured their choreography, singing, and puppetry skills. The narrow but long hallway that spanned our bedroom doors became an art gallery, with rotating exhibits of drawings and paintings.

Cancer isn’t contagious, but creativity is, particularly when young people find satisfaction, strength, and hope in it. It added a powerful sense of normalcy to our lives which, after Aimee’s leukemia diagnosis, were anything but normal.

Molly was two then, Aimee six. Within weeks, Molly had created an imaginary friend named Sally to fill in for her older sister when she was at the hematology clinic, in the hospital, or suffering from the side effects of her meds. Sally was a mystery to Aimee, but I believe that this imaginary friend for Molly came out of the same creative energy that sustained Aimee through the pain of her treatment. I was grateful for Sally and for creativity in general.

The months and years were an extended process of diagnosis, treatment, a long remission, relapse, consults, additional treatment, remission, relapse, new treatment, more and more decisions about treatment or not, an unwilling bone marrow match, treatment, death. Although it was Aimee’s body and spirit that experienced this process most dramatically, our whole family traveled this emotional rollercoaster, the backdrop of our lives.

Creativity was the sisters’ pathway through the weeks and years of Aimee’s cancer.

Treatment, as well as times of remission, require a tolerance of not knowing. The creative process allows us to express the intensity of our feelings and sometimes to forget about our feelings by losing ourselves in creativity. I think Aimee used it both ways, depending upon her needs of the time, and that Molly did the same with her own confusion.

Recently I started sorting through bins of Aimee’s papers and drawings from across her fourteen years. I looked at some of these items for the first time since her death over twenty-five years ago. I found everything from renderings of graveyards for a classroom play to a drawing of our family swimming together, each with a smiling face.

To my surprise, I came across Aimee’s turquoise-and-pink bead box, filled with multiple varieties of beads carefully sorted into containers, two bead design boards, pamphlets like For the Love of Beads, 1993 and The Basics of Bead Stringing, and a fully completed but never mailed bead order form in Aimee’s handwriting, probably a hint of her planned projects.

I found a cookie cookbook in Aimee’s handwriting that she and her friend Kuleni created together. Her mother had kindly and generously turned over her kitchen and its baking ingredients to these two fifth graders on days when both were free after school. They created and baked a series of cookie recipes which they tweaked after taste-test feedback from their families. The table of contents listed treats such as Tart ‘n Tangy Lemon and Oatmeal Cinnamon Specialty cookies. I have a taste memory of these treats, if such a thing is possible.

I found leftover cuttings of a shiny, purple fabric, matching thread, and yellowed pattern pieces. Aimee and I had not been able to find a dress that fit her, looked like junior high, and seemed sophisticated enough for her friend Marisa’s Bat Mitzvah. After multiple shopping trips together, she decided to make a dress for herself by herself. We found a pattern and fabric that she liked. The dress turned out beautifully, no time or necessity for a necklace.
Aimee had the time of her life that evening. A little over a year later, she was buried in that dress.

After an early December 1993 surgery followed by an extended hospitalization, Aimee had no time for shopping before what turned out to be her last Christmas. She decided to make presents at home for her cousins, grandparents, aunts, and uncles—everything from custom-designed stationery to baked goods to tie-dye shirts. The gifts were mailed late, but Aimee serenely said goodbye to them at the post office. Somehow the receipts from these holiday mailings ended up in a bin I was sorting through.

I think that throughout her life, Aimee’s creative projects pleased her, helped her to see beauty both in herself and her connection to people she loved. I remember the relaxed, calm look on her face and the stillness of her body when she was absorbed in one of her projects—be it a First Communion needlepoint for Molly, a Lithuanian Easter egg for our dining room centerpiece, or her latest beading project.

Was Aimee consciously aware of what she was doing? She seemed to plan for times and ways to indulge her creativity. Other occasions seemed completely spontaneous. I remember her sitting at our kitchen table, bald and with tears running down her cheeks. She described how little interest her seventh-grade friends had in the creative projects they used to enjoy together, like making clay beads or applying puff paint to T-shirts.

Molly never wavered as her sister’s partner in creativity. But as time went on, Aimee became more focused on her friends and school activities. She was busy trying to participate in and survive the social and academic pressures of junior high. Molly would learn more about that duress for herself in a few years. But Aimee would not be there with her customary and individualized guidance and advice for each new grade. Aimee died in late March of eighth grade. She left no high school advice for Molly. How could she have?

A young female teen with no hormones or developed breasts, no curves, menstrual period, or stylish hairdo—all destroyed or rendered impossible by the side effects of chemotherapy. All the while, she attempted to negotiate early adolescence for herself with the support of her loyal friends—going to school dances, sleepovers, parties, football, and basketball games—whenever she was able. She even played softball for two summers primarily to be with her friends and ran junior high track the semester before she died. We went through many debates about immunity, what was safe, how concerned to be about a friend’s cold. Masks were not part of our culture then. Through all of this, Aimee was still the person her friends called for help with math homework or any project that had to be done soon and well. She remained the mediator in her group of friends. They remained her stalwart supporters, never missing an opportunity to surprise her in some creative way during a hospitalization or to welcome her home afterwards. They were the pallbearers at Aimee’s funeral.

A local artist did a portrait of Aimee for an award in her name at her school. He used multiple photographs, including her eighth-grade class picture, to capture her face. In his final version, Aimee is wearing that necklace she was stringing in the hospital so many years ago.

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