Billy was ten years old when he celebrated his last Christmas with us. He was brought home from the hospital in an ambulance so that he could be with his family. The driver knew what this trip was about. He flashed the ambulance lights and gave an occasional siren whistle as he drove my little brother home. How excited Billy must have been! My parents had ordered a hospital bed and set it up in the dining room to ensure Billy’s visit was as comfortable and safe as possible. My other brothers and I were filled with anticipation to have Billy home for Christmas, but we were also anxious. We hadn’t spent much time with our brother recently, and we didn’t know what to expect. Billy had spent the majority of the past year in the hospital; he had been diagnosed with lymphosarcoma, an acute form of leukemia. My mother had taken him to see the doctor one day when she noticed some strange lumps on his shoulders, and she came home without him. His prognosis was bleak. There wasn’t a cure, and the disease was aggressive.
During earlier visits, Billy had been different from the brother we had known only a few months before. He was bloated and glassy eyed, and he spent much of his time sleeping. He couldn’t go out and play with us. His hair had thinned, and one side of his face sagged because it was paralyzed. For this Christmas visit, our parents warned us to control our wild behavior and roughhousing, to be careful not to knock into our brother and cause him to fall. Billy was in pain. He was fragile, sick and dying. We were told it was his last Christmas with us, his last trip home, but we were just too young to understand. The magnitude of this information was beyond our comprehension. Our excitement for the holiday season, for school vacation, Santa Claus and presents under the tree, was subdued by the mysterious melancholy and sadness that filled our home. I can’t imagine the helplessness my parents felt over those many months of watching their young son die. I can’t imagine how it felt for them to know this Christmas was his last, how they possibly could have found even an ounce of holiday spirit. They did all they could to celebrate– for us, for them, for Billy.
Over the thirteen months of his illness, Billy fought like a brave little warrior. At one point as he neared the end of his life, he said he didn’t know it was so easy to lose a life. Billy’s little body was simply giving out. His doctors and my parents agreed that nothing more could be done. It didn’t make sense to continue the barrage of medications he was taking; he was administered morphine instead to relieve the pain and help him through his last days. Billy wasn’t expected to live much longer than a week. I think he knew he was nearing his end. Our parents wanted to make this a special time for him and for our family. He was a feisty little boy with a big heart, and they wanted to bring him home. Billy’s caregivers had grown to love him, and though they are trained to deal with disease and death every day, they were deeply saddened to witness his dying. Nothing more could be done to save him. I am grateful to those caregivers for devoting their lives to helping our family, to helping families like mine who suffer through the terminal illness and death of a loved one. They give us strength and guidance, and they hold us when we grieve and mourn.
It has been forty-six years since Billy’s last Christmas. Often, I ask myself why I still feel that gloomy little cloud over my head during the holiday season. Billy’s death was so long ago, but no matter how hard I try to shake off the sadness, it’s still there. For me, it’s more than grieving the anniversary of a loved-one’s death. Of course, I mourn deeply the loss of my little brother. He would be fifty-six years old now. I miss having known him. I wonder what he would be like, who he would have married, if he would have had children. I wonder what he would have done for a living, if he would have loved music or the arts or hunting or flying. There is something far more profound that I am saddened by, though. My brother’s illness and death was the beginning of the eventual demise of my family. My family did not survive this loss. My parents relied heavily on alcohol to mask their pain, and they eventually divorced. My older brother killed himself through extreme alcohol abuse and drug addiction; I believe he suffered survivor’s guilt. I turned to religion and joined a religious cult, hiding from my family and from society for almost a decade. My younger brother dangerously started down a wayward path, but luckily caught himself. My younger sister, who was conceived a year after Billy died, was born into a shattered and broken family and grew up alone with a heartbroken mother.
I will never forget that Christmas Day. My young parents did the best they could and tried hard to create a Merry Christmas for all of us. My brothers and I romped and played with our new toys and gifts, fighting and bickering as we normally did. Billy was brave; he intuitively knew he was dying, yet his excitement and joy filled the air. He couldn’t participate in most of our crazy antics, but he loved watching us. We did somersaults and cartwheels in the living room, driving our parents crazy, and we sang and danced for Billy while he sat on the couch and laughed at our silliness. He watched us with smiling, soulful eyes because he was so happy to be home with us. My every Christmas is touched with memories of our last Christmas with Billy whose gift was his presence, his love, and his joy. I write this in memory of my brave little brother.
I will miss my father on this Father’s Day as I have on so many others. I will miss him differently than I have missed him for the majority of my life, on the days when he was alive and we were not talking to each other.
Laurie Schaffler 