It is strange, the details that one's mind takes hold of in the midst of great crisis. I can see the room as if I am not in it, as if I am watching from the doorway. I can see the weak florescent light from the room as it tries to hold back the darkness outside of the hospital window. I can see the tears brimming in our physician's eyes, my little boy kneeling at my lap, and my husband standing silent behind my chair, his hand resting on my shoulder. I see me, sitting in the sterile confines of a hospital room, holding the whole of the human condition in my arms. I watch as we whisper our last goodbyes to our daughter, Whitney.
I had lived in terror of this moment. My dreams had been haunted with chaotic versions of this very thing. The physicians had warned me of its coming, cautioned me on its inevitability. I knew. My mind knew. It was my heart that had refused to believe. As I held her now, her last breath long ago mingled into the air of the room, my heart struggled to learn its new beat in the presence of this great letting go. The old sheltered beat it had kept up for so many years, could never survive in this place.
We are all born dying. Some are just moving that way at a much greater pace. Whitney was on the accelerated track. When first I held her newborn form in my arms, there were a few blissful moments when she was the child that I had carried for nine months. Thinking back, I am sure that the nurses allowed me that grace. Flowers bloomed, sunshine spilled from the windows, and butterflies danced on the Morning-Glory vines. The possibilities before us were painted with whimsy and light as I held new life in my arms. It was only a few moments though, before the child I held had nothing in common with the one I had grown so familiar with. The words of the medical professionals created a stranger, a changeling. I resented the graveyard images they brought to my world, bare trees and howling winds heralding a long and icy winter. Extra physicians were brought in to bear the load of confirmation. So many words came from their mouths in a great whirlwind of destruction: Severe heart murmur, Down's Syndrome, weak reflexes, genetics, mental retardation, tube-feeding, and early death. The words swirled about in the icy wind, coating the bare trees like leaves.
It took just a few hours for my heart to adjust its beat this time. It took her opening her dark eyes and looking directly into mine. Worlds of knowledge seemed to be just beneath their surface. Instead of mental deficit, I saw beauty and truth. She belonged to me, and I to her. We were bound to weather this hostile landscape together. I would forever champion her cause, and she would teach me the truth about being human. There were so many mountains to climb in this new place. Each surgery, test, and infection threatened to throw us bodily down the jagged slopes. Through one of the many tests, the physicians were able to tell me that by a genetic fluke, Whitney would have less than a year to live. So it was, with Death perched on our doorstep, that we began to see the splendor in the sparse and colorless winter.
As it always does, life bends to accommodate so that the uncomfortable becomes the comfort. We had routine, we had laughter, and we had love. I was her nurse, my son her jester, and my husband her devoted knight. We decorated the bleak winter landscape with paper hearts and gumdrop trees. We made colorful paper chains and draped them playfully over the shoulders of Death, who had become a constant in our world. We grew used to his waiting presence outside our door, but we never invited him inside. It was with horror that I watched him walk in from the cold in the lonely hours of that December night. Like so many times before, we raced our girl to the hospital. This time was different. Our physicians response was not the same. He examined her and then looked up at me and simply stated, "It's her time." My sad heart beat protest at the inevitable.
Gently, he disconnected her from the heart monitors. He took the oxygen from her nose, and the tiny cuff from her arm. He then wrapped her in a cocoon of blankets and handed her to me with tears in his eyes. I watched, powerless, as her breath came slower and slower. I kissed her face and whispered my devotion in her ears. I smelled her hair and cried tears that washed down her cheeks as I lay my lips against hers, willing her to breathe just once more. I felt as if I were drowning. As if, by extension, my lungs were being deprived of oxygen were hers. My chest felt heavy and hungry, and I wondered if Death was claiming me as well. Then, nothing. Her next breath did not come. I looked about the room as if I could find the air that had left her lungs and put it in a box to keep forever. The room was still. The hour late. A life was lost from the world, and our sad little party was the only one that had noticed. Reality unhinged, and time unfastened. I do not know if I held her for one hour, or five. I could not leave. I could not walk away. For fourteen months I had been her greatest defender. I had been on the front lines fighting each and every battle that she could not win herself. I was her champion! How could I leave her alone? I looked up at the nurse who had known Whitney all of her life, and she knew. She offered to stay with her, holding her, until "they" came for her. I placed Whitney's little form into her open arms, every instinct inside of my soul screaming in protest. I gave her one last kiss and turned to walk from the room.
I am always amazed at the resilience of the human race. I am stunned when life moves forward after all seems lost. I had expected to need straight-jackets and tranquilizers, but instead I felt an overwhelming peace. I took the hand of my son, and the arm of my husband, and put one foot in front of the other until at last I was outside. It has been twenty-one years, and I am still putting one foot in front of the other. Whitney's life taught me compassion and empathy. Through her, I was gifted with the ability to decorate the bleak landscape of change and loss. I feel her presence whenever I am overcome with compassion at the plight of another. When I see someone now, lost in the vast, wild storms of tragedy, I can teach them how to plant a gumdrop tree, and hang a paper heart.