“Hope is the sure conviction that all will be well no matter how things turn out.”
I heard these words at a time of great challenge. My son, Simon, a delightful four-year-old, had recently been diagnosed with cancer. Not leukemia or something else with an impressive cure rate. But neuroblastoma, “one of the deadliest childhood cancers,” according to a New York Times article I had tried not to read.
Life with cancer offered plenty to hope for: new blood cells after chemo; safe surgery; a peaceful night’s sleep; a slot on a clinical trial. Sometimes our hopes were met, but patience and adaptability often covered for success. Along the way I enjoyed precious moments with Simon. Once he glanced at the monitor during an echocardiogram and exclaimed: “I can see the point at the bottom of my heart!” Delight is a fine fuel for hope.
I swapped stories on a listserv with other parents facing this disease. “Hope,” I once shared, “is as much a part of living well as it is of dying well, if dying is the project at hand.”
And I believed it, even as Simon’s cancer outpaced treatment and our vigilance shifted to helping him die. We did a fine job, keeping his needs and wishes foremost in our caregiving. At the age of seven, Simon died quietly in the sacred middle of his parents’ bed. All had indeed been well—as well as could possibly be—when dying became the project at hand.
I can’t say exactly when the hopeful spirit that had infused my life with Simon disappeared. Gradually I entered a stumbling, cobwebbed fog of grief where nothing seems right, nothing feels real, and hope is an abstraction with nowhere to land. Forty-one moons have grown full since Simon died. I wonder if life will ever feel real again. If I’ll truly find hope again.
I believe there are times when hope is impossible. When a dull watchfulness scans the universe and finds no trace.
One of Simon’s nurses sent a note just after he died. She called Simon “feisty and witty, with an extra special intelligence and charm.” Her description makes me smile. She emboldened the rest of us—me, my husband, and Simon’s sister Miriam—saying: “I expect that your family will re-create something as lovely as you had when Simon was with you.” I still draw courage from her words.
The other day Miriam, now eight, observed our morning behaviors. Mom is slow; Dad is fast. “Since half my genes are from you and half from Dad,” she said, “that means I’m medium.”
“You are the cutest thing there is!” I gushed and encircled her in my arms. This feels good, I thought, this delight, this almost unself-conscious blurt of mommy hyperbole.
She looked up, still weighing her world, and caught my eyes. “And Simon . . . too,” she said.
Yes, and Simon, too.
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