I held Jacob's hand as he slept and my eyes drank in the sight of him. I studied his facial features closely, trying to commit every single detail to memory. I never wanted to forget an inch of him. He was sleeping deeply now and the pain medications had finally given him some relief. After several rounds of failed chemotherapy, his tiny body almost looked as if it belonged to a ninety-year-old man.
I couldn't help but remember my beautiful boy on the day he was born. I was consumed by the love and joy I felt the first time I saw his face. He was my miracle child after six years of infertility. Andy and I had both cried when the nurse handed me our baby. Falling in love with my son, Jacob, was like coming to life all over again. Motherhood had given me emotions I never knew I was capable of feeling.
And, there I was, staring into Jacob's eight-year-old face and wishing I could do something, anything to take his sickness away. It was in my nature to protect Jacob at all costs, but leukemia was the one thing I could not ward off or save him from. It broke my heart to be so helpless and a part of me felt like I had failed my son in some way. It was torture watching Jacob live through everything he had lived through as a result of such an aggressive form of cancer. It was hard to comprehend how an innocent child could be afflicted with so much pain and sickness.
Suddenly, I was remembering the bone marrow biopsy Jacob had endured. Jacob had been sick with what we thought was a bad flu that wouldn't go away. After the blood tests and spinal tap, the doctor wanted more tests. Despite the local anesthetics, Jacob still experienced a lot of pain, not to mention how terrified he was. When I saw the size of the biopsy needle piercing my child's skin and sinking into the back of his hip, I felt rage. When I heard the shrill sound of Jacob's cry, I felt murderous. I wanted to leap across the table and strangle the doctor. I wanted to punch the nurse and throw the large needle against the wall. Instead, I held Jacob's hand and stroked his hair, fighting back my own shrill cries.
We had been hopeful despite hearing the words "acute lymphocytic leukemia". Andy and I stayed up all night one night reading everything we could. Surely our son would respond to the first round of chemotherapy and then go back to being a happy, healthy boy. We were convinced this was something we would get through and eventually put behind us. We were a happy family with the resources to get our child the help he needed. Andy and I never mentioned the "D" word, because it simply wasn't going to happen to us. But, Jacob's body did not respond to chemotherapy. In fact, his white blood cell count was higher and it was affecting his liver. Another spinal tap confirmed the leukemia had spread. The doctor convinced us we could stay on top of it with a more aggressive approach. After radiation and more chemotherapy failed to attack the disease, the doctor dared to mention hospice care and say the "D" word. I begged and pleaded for a bone marrow transplant and aggressive radiation, but Dr. Charles explained to me all of the reasons why Jacob was not a candidate. None of it sank in, though. All I could think about was how badly I wanted to do anything to save my child.
I sat there beside his bed and held his hand as I wept, memories of our happiest times and our lowest points swirling around in my mind. All of it was a dagger to my heart; the happy times just as bitter now as the bad.
I must of have fallen asleep slumped over Jacob's bed, because I was startled awake by the touch of a hand on my shoulder. I popped my head up and realized it was our hospice nurse, Kayla, standing beside me. She motioned for me to come with her. I glanced at Jacob, sleeping what was sure to be his last sleep, and I allowed Kayla to guide me into the hallway.
"Have you decided to keep him home and in his own bed," Kayla gently asked, "because the time has come to make that decision. Andy's waiting downstairs, but he wants to keep Jacob at home instead of transporting him to the PCU."
I slowly shook my head back and forth and mumbled, "He's staying here with us."
Kayla held my hand and her eyes met mine, "I've called the chaplain and he's getting in touch with your pastor. The volunteer will be here within the hour and the social worker will be coming with her."
I just stared at her, still shaking my head slowly. Back and forth, the answer is no. No, no, no, no.
"Bethany," Kayla whispered softly, "would you like me to call anyone for you?"
"Just my parents and Andy's mother," I choked, "Everyone else has already been by and I don't want a house full of people right now." No, no, no, I don't want any of this. Please, make it go away.
I felt the familiar sensation of Andy's hand on my waist. Instinctively, I turned to him and buried my face in his chest. I pressed myself up against him and I was overcome with the sensation of needing him. My son was sick, but there I was longing for the physical connection between my husband's body and mine. The way Andy pulled his fingers through my hair and wrapped his arms around me indicated he was feeling something similar. Kayla excused herself and slipped into Jacob's room, closing the door softly behind her.
Andy and I made our way down the long hall and escaped into the privacy of our bedroom. My husband's tears blended into mine as our bodies fought together against the worst kind of grief imaginable. Afterward, we held on to one another and cried the kind of tears only an anguished parent would cry.
After Andy and I had composed ourselves enough to meet with our parents and our pastor in Jacob's room, I found myself frozen in the hallway. I wanted to run to Jacob and hold him, but I also wanted to turn around and run in the other direction. Nothing ever prepares you for the moment you are going to say goodbye to your own child. I wasn't ready for that moment to come. I felt an icy fear take hold of my body. Just the day before Jacob was awake and talking to me. He was looking into my eyes, smiling. He put his hand to my cheek and said, "Mommy, I love you. When I'm in heaven, I will miss you the most." And then he had fallen to sleep. It was the last time my son spoke to me. I wanted that moment back. Please, just give me that one moment back.
The pastor began saying a prayer and everyone bowed their heads. I somehow made my way to the bedside and I knelt down to clutch Jacob's hand in mine. I have no idea how much time passed or when the prayers ended. I didn't notice when Kayla left or when my pastor said goodbye. My parents and Andy's mother stayed the whole night, as did the hospice volunteer. I never left the bedside. I couldn't bring myself to leave the bedside. At one point, I curled up in bed with Jacob. With my arms wrapped around him I whispered in his ear the story of his birth, told him about meeting and falling in love with his father, and expressed how lucky I was to be his mother. It wasn't until the following morning, when Kayla knelt down beside me and nodded her head, that I even realized it was over. Just like that, my precious boy was gone.