Kyle died early on a Sunday morning. His last meal was vanilla pudding, fed to him lovingly by his grandmother Shirley, while reruns of “Inspector Gadget” played in the background. When Kyle was born 25 years earlier, the family had been told he would not live more than a few weeks into infancy. But Kyle surprised everyone by surviving a quarter of a century with debilitating cerebral palsy. What surprised me most about Kyle was that he was always smiling, even though he was unable to communicate or control his body, and even though a majority of his life was spent on his grandparent’s living room floor.
I visited Kyle’s grandparents a month after the memorial service. Their living room, once a collage of toys and DVDs surrounding the living hearth that was Kyle, was now quiet and organized. I could hardly recognize the space without him. Kyle’s grandfather Bryce had recently been diagnosed with glioblastoma multiforme, but the family still smiled. Having just begun his course of gamma knife treatments and chemotherapy, Bryce had opted to keep the hairstyle his neurosurgeon had left him. Calling it his “Mohawk,” he grew a beard, began sporting punk rock tee-shirts and took to wearing thick black plastic framed glasses. Shirley and Bryce were adapting to yet another medical hardship with the style and grace they seemed to exude. They smiled together, not worried about tomorrow or depressed about today, but rejoicing in the love that made their family so indestructible.
Standing on the front porch during my last visit, I listened to Shirley as she talked about the recurrent pneumonias that finally took Kyle and the process of dealing with Bryce’s newly diagnosed brain cancer. I watched her as the sun set that afternoon, the light catching a newly visible grey streak she let grow in her hair to match Bryce’s punk rock style. It was obvious that she had become the keystone that held her family together; yet she seemed completely oblivious to the weight that she bore.
For the first time on that porch, I was able to sense her sadness as she spoke of the physicians who had cared for Kyle at the end of his life. She spoke of a surgery to repair Kyle’s hiatal hernia, she spoke of his inability to recover, and of the myriad of health care professionals who would visit periodically to suggest treatments before disappearing. Shirley recounted her feelings of helplessness as Kyle would cry, lapsing in and out of consciousness, and her frustration with the lack of face time doctors gave her. Grievous, she remembered feeling uninvolved and uninformed while decisions were made for Kyle during his final decline in health.
With the crisp smell of autumn in the air, and a languorous sunset catching the trees around us, Shirley asked, “Will you tell your classmates to remember to talk to their patients?”
“I will,” I responded.