The girls had given me a card they’d made. On the front they’d written: “We love you very, very, very, very, very, very, very, very, very much!” Nine “verys” from two giggling little girls added at least five healthy years to my life. The girls climbed into the SUV, and Tye, Jay, and I stood quietly in the rain. Words weren’t needed. Nothing we could’ve said would’ve added any meaning to that moment. Besides, silence is a language we understood, so we embraced in silence, and nothing was lost in translation.
Chapter 4
January 11, 2008. I wondered if it was the day my daughter would die or the day that God would work His miracle. As I readied myself for the trip to the hospice center, it occurred to me that I probably should clean the kitchen before leaving the house. The thought of coming home to dishes in the sink worried me in an almost unnatural way. But what good mother cleans house on the day her only child might die? I did the dishes quickly and left for the center.
Instead of taking the expressway to the hospice, I took the back roads. Along the way, I stopped at a deli and picked up a sandwich. Then I stopped at one of the mega hardware stores and roamed the massive aisles looking at lamps, lawnmowers, floor and window coverings, and tools. Anything one could possibly need to fix or improve a home could be found within these walls.
Then it hit me like a punch in the stomach; Nicole might die this very afternoon, and what would she think if she knew I was milling around a hardware store? Why had I even gone home at all? Why hadn’t I spent the night? The guilt was sickening, like a bit of bad meat rotting in my stomach. Stalling was useless, and it surely wouldn’t change the events of the day.
When I arrived, there was no significant change in Nicole’s condition. I couldn’t wait to kiss her and let her know I was there. The phone rang; it was my friend Sherry. “How do I get to where y’all are at?” She asked. “Are y’all near the hospital up there?”
“Yeah, pretty close,” I said. “We’re on the same street.”
“I’ll be up there when I get off today. Y’all need anything?”
I hesitated for a moment as I wondered if I should tell her what the plan was for that afternoon. Should I tell her not to bother coming because if everything went according to plan, Nicole might be dead at four o’clock? I didn’t know how to put that into words that sounded appropriate, so I didn’t mention it. “No, we don’t need anything.”
“Have y’all eaten?”
She kept saying “y’all,” but I knew she meant me.
“Yeah, we’ve eaten.”
“What y’all eat?”
“Sandwich.”
“Alright then. If I get lost, I’ll call y’all.”
“Okay, we’ll be here.”
Shortly after I hung up with Sherry, the nurse came in and sat with me for a while. She looked up at the white board. “That’s a beautiful scripture,” she said as she recited it aloud. “This is the day that the Lord has made. I will rejoice and be glad in it.” I explained that I was anxious about what would happen later, and I wrote the scripture on the board as a focal point. She told me that she had come in the room earlier before I arrived and talked to and prayed for Nicole. “I just loved on her and loved on her,” she said as tears welled up in her eyes. I was humbled, and I thanked her, though thanking her seemed most meager. “Have you eaten?” She asked wiping her eyes.
“Yes, I had a sandwich.”
“That sandwich sitting over there unopened?”
I looked over at the sandwich that I was planning to eat at some point.
“I’m not very hungry.”
“But you need to eat something.”
“I’ll throw up.”
She left and quickly returned with a cup of coffee. “Just sip on this,” she said, “and I’ll be back to check on you.”
Over the next hour or so, several people stopped by. One by one, they came and introduced themselves as employees of the hospice and said they had come for nothing more than to simply be with Nicole and me. They asked if I needed anything. They might as well have been asking a newborn if it was hungry or cold. If I needed anything, I didn’t know it. Like an infant, I would depend on someone else to know and supply what I needed.
All I knew for certain was that I was there, and that not too long ago Nicole and I were living our own lives. And then she got sick and, by the score, doctors and nurses and therapists and social workers began falling out of the sky. They were everywhere, in our refrigerator and cupboards. They found their way into the ice trays in our freezer. Their names could be found on food labels. In our wallets, their faces replaced those of dead presidents. In the attic behind the Christmas decorations, in our medicine cabinet, they were there. Our lives were no longer our own. Every facet was governed and judged by someone else. First we were free, then we weren’t, and now we were here. That’s all I knew for certain.
A tall, well-built man in a suit came into the room and introduced himself as the chaplain. His first comment, as was almost everyone’s, was how tall Nicole was, how she filled the bed from top to bottom. He eased down into the armchair across from me and asked how I was feeling about that afternoon. Truthfully, I was feeling as if a thousand tiny shards of glass had lodged in my throat, and every time I swallowed, I was reminded that I was a few seconds closer to losing Nicole. “Anxious,” I said.
“Sometimes I sing when people are removed from the ventilator. Would you like me to sing this afternoon?”
“Thank you for offering, but I’d like for it to be quiet.”
“Do you or Nicole have a favorite scripture you’d like me to read while the machine is being turned off?”
I shook my head, “I’d just prefer it quiet.” The truth was, I didn’t want any of them there. I wanted to be alone, but I didn’t know how to tell them without seeming rude or ungrateful. The night before, the nurse told me that they had a protocol:
When someone is removed from the ventilator, we all come into the room and gather around the bed. We place our hands on the person so they know they’re not alone, and we send them off with love and peace. It’s so beautiful.
I was horrified. I didn’t want friends, doctor, nurses, or chaplains present for that sacred moment. But how could I even suggest this to these caring people whose only objective was to make sure we weren’t alone? How could I tell them that Nicole and I and the sunlight that was pouring through the window were enough?
As I sat sipping the coffee that the nurse brought, I thought about what might happen that afternoon. I knew, by all indications, what was supposed to happen. Nicole would be removed from the ventilator and at some point shortly thereafter die. Contrary to indication and aside from my faith, however, that seemed unreasonable, and I couldn’t believe this would be the outcome. God would come through. He was bluffing me like he’d bluffed Abraham, and at the very last minute, right before she took her last breath, He would say, “Now I know for a fact that you have faith,” and then He would restore everything. There had to be a ram in the bush because there was no way He would actually take her. He knew she was all I had.
In any case, I walked to the foot of the bed and pulled back the covers. Nicole’s feet were warm and soft, and I caressed them as I began to pray. “Father, forgive Nicole of all her sins, and place her spirit in right standing with You. Teardrops splashed down on her feet, and I massaged them in like an ointment. I covered her feet and made my way up to the head of the bed. I ran my fingers through her soft, curly hair. “Don’t worry about me.” I choked back tears. “Your mommy is tough, and she’s gonna be okay.” But deep inside, I didn’t feel okay. It felt as if my bones had turned to chalk.
As I stood there humming, You are my Sunshine, a song I’d sung to her since her birth, I imagined how wonderful it would be if the angels came and spirited both of us away at the same time, that in one instant I was a mother weeping over her dying child and in the next both of us would be suddenly free; all of our looming fears would become extinct. The mere thought of it wa
s rapturous. I sat down in the chair next to the bed, not knowing that within seconds, and without the intervention of medicine, my Sunshine would slip away.
I had grown tired of the music that was playing, so I turned off the CD player and turned on the TV. Tom & Jerry’s “Robin Hoodwinked” was on. As I watched, I thought about what would happen when the ventilator was turned off. “You know, Nicole,” I said as I turned to her, “later on, this room will be filled with a lot of people we don’t know, and you know how I feel about that.” I said this jokingly because she knew how uncomfortable a situation like this would make me.
I turned back to the TV as Jerry and his diapered young cousin were about to spring Robin Hood from jail. Just as they sneaked the key from Tom the jailer, I saw Nicole moving in my peripheral vision. I sprang up and pressed the nurse’s call button, but it wouldn’t ring. When pressed, the buzzer could be heard very clearly throughout the small facility. I pressed and held it, but nothing happened. I started to run for help, but it would’ve meant leaving Nicole alone, and that was out of the question.
Her upper body twitched several times as if she were trying to suppress a cough, and then she opened her eyes for the first time since December 6. She gazed upward and past me. There was no grimace, no expression of fear or pain, just the effortless gaze of someone who had been awakened out of a light sleep. I knew the angels had come to take her and that she was seeing beauty and light. I knew she was seeing the warm, loving faces of people who had come to embrace her. I knew that she was stepping out of the cocoon of her flesh and walking into an ecstasy that she never imagined possible. I called her name several times. I caressed her shoulders and cupped her face in my hands. I kissed her lips and told her it was okay.
The entire episode lasted about 10 seconds, and then her eyes closed and she fell still once again. I ran out to the atrium and called for the nurse. Both she and the assistant began running my way.
“Something’s happened,” I said.
“What do you mean?” The nurse asked as they rushed into the room.
“She was moving.”
By this time we were at the bedside. For all intents and purposes, Nicole looked to them exactly as she always had, lying comatose with her chest rising and falling to the ventilator. I couldn’t bring myself to say to them that she was gone. The two of them were on one side of the bed, and I was on the other holding Nicole’s hand.
“She was moving, and then she wasn’t,” I told them.
“It’s okay, honey,” the nurse said. “It’s probably her sugar; you know how brittle she is.”
The nurse had donned her stethoscope and was listening to Nicole’s chest. The assistant was preparing to stick Nicole’s finger to check her sugar. There was something about sticking her finger that sent a panic through me. I didn’t want anything else done to her—no tests, no needles, nothing. “But she doesn’t have a pulse,” I said, and they both stopped what they were doing.
I looked up to see Dr. Akwari rushing into the room. I was surprised to see her as she’d said she would arrive at 3:30 p.m. It was only a minute or so after one o’clock. “What’s happening?” She asked. The nurse shook her head, “She’s passed.” Dr. Akwari motioned with her arms for them to move. She leaned over and listened with her stethoscope. Then she disconnected the ventilator tubing and listened again. She stood up straight and simply nodded. Finally, she whispered, “Yes, she has gone.”
Before I could move from the bedside, Dr. Akwari had come around to my side and embraced me, hugging me tightly to her bosom. But I felt okay. My daughter had just died, and I was okay. I was saying this over and over in my head, “I’m okay, I’m okay,” when I realized that I wasn’t standing on my own and that the doctor was bearing most of my weight. I was weeping, but it sounded like someone in the next room.
As I struggled to pull myself together, Dr. Akwari whispered in my ear, “This is so beautiful; please understand how beautiful of Nicole to have gone this way. Please, come with me,” she said as she grasped my hand.
As we were leaving the room, the nurse switched off the ventilator, and the sudden silence was overpowering. I turned to see my daughter, my little girl, lying dead, the covers pulled back, the ventilator tube jutting from her mouth. It came to me in that moment that maybe I was the one in a coma. I was sure of it. I had been in some type of accident and was in a coma. I was hallucinating; all of this was some type of drug-induced hysteria. Soon I would come out of the coma and Nicole would be standing at my bedside. All of this, the kidney failure, dialysis, all of it will have been a horrible nightmare. “They’ll take good care of her,” Dr. Akwari said as she tugged my hand.
We went out into the atrium and sat on the sofa. She began talking, but my attention was focused on what might’ve been going on in the room, the sounds of things being turned off, and switches being flipped. I was anxious that they were with her, touching her, changing her gown, and giving her clean blankets. I was her mother; these are the things I should’ve been doing. I struggled over the doctor’s voice to hear what was going on. Dr. Akwari stayed with me until the nurse came and said I could go in and sit with Nicole.
It was the first time in over a month that I had been alone with Nicole that there was complete silence, no ventilator or machines whirring, no tubes or IVs. Earlier, I had opened the windows in the room. Even though it was January, it was a very mild day, and the blue skies were filled with the bright, noonday sun. Everything was quiet and still, except for the inhaling and exhaling sound the earth makes on a breezy day. I leaned down and kissed her forehead, cheek, and pale lips.
I pulled up a chair next to the bed and sat holding her hand. I tried to make sense of the fact that she was no longer in her body. It was too much to fathom that she was away from me in a way she never had been before. I was acutely aware that after 27 years, we were apart, and the separation was tangible. And I thought, so this is what it feels like. Although I wasn’t sure what “it” was.
I sat alone with Nicole for about an hour. Several times I thought I saw her breathing, but when I rose to call for the nurse, the breathing stopped. I began preparing myself for Eunice’s arrival. I wanted a clean face, no tears. She had just lost her sister Vivian, and I couldn’t have myself falling apart on her.
As I sat at Nicole’s bedside, Dr. Akwari came in and sat down in front of me. She reached for both of my hands. “God is enough,” she said. “He will see you through this, my dear.”
“I know,” I nodded. “Thank you.”
“What will you do this evening? Where will you go?" She asked.
Her question took me by surprise. I hadn’t given any thought to leaving. Nicole was lying there, and she no longer had diabetes, no longer had renal failure or needed dialysis, she didn’t need oxygen; she wasn’t required to be anywhere or do anything. She had no more restrictions. She was no longer under a doctor’s care, and I had thought of nothing but sitting next to her, holding her hand, and embracing her freedom.
“You won’t be alone tonight, will you?” The doctor continued.
“No, I’ll stay with a friend.”
“Here, take down my number, and don’t hesitate to call me anytime you need to talk.”
Eunice arrived and took care of calling the funeral home and everyone else that needed to be notified. Soon, our friend Cynthia arrived. The Director of Nursing served us tea while we waited for the funeral home to come.
As we talked, there was a soothing calm that settled over the room. I could feel my muscles begin to unclench for the first time in as long as I could remember. The angst that always rested just below my ribcage was gone. Occasionally, I would look over at Nicole to see if anything had changed. Sometimes, looking wasn’t enough, and I would walk over and kiss her cheek. For almost three hours, we sat and talked and sipped tea, and I was very content. But then I saw the hearse pull past the window. I listened as the doors opened. I heard the awful clinking sound of a stretcher being snapped into place.
When the two men in suits came in, Eunice took my arm at the elbow to guide me out of the room, but I felt the need to gather some things to send with her: a change of clothes, her hair brush, clean socks. It was very odd to me that she should leave with nothing. “We’ll take good care of her,” one of the men said.
We stepped out into the atrium, and the men closed the door, but as quickly as I could sit down, the door opened and I could hear the wheels of the stretcher. My back was to the door, and I'd initially decided not to look, but I couldn’t help myself. I turned to see the thick, black bag atop the gurney, Nicole’s thin frame barely making a dent in it; it looked empty. It was in that moment that I realized I wasn’t okay, that my daughter was dead, and that more than anything, I wanted to be inside that bag with her.
Chapter 5
I stepped out of the hospice building feeling naked and disconnected, like I had forgotten to get fully dressed. “There’s no telling when she last ate,” I heard Eunice say to Cynthia. I knew they were talking about me, but it seemed like I wasn’t there, as if I were eavesdropping on a private conversation. “We’re gonna stop for dinner,” Eunice said to me. “Are you okay to follow in your car?” I nodded.
As we walked across the parking lot, the chaplain pulled into a spot and got out of his car. “Are you leaving?” He asked looking at his watch.
“Yes,” I said. “Nicole decided that 4 o’clock didn’t fit her schedule.”
“She’s gone?” He asked.
“Yes.”
He looked confused, displaced almost. “But what happened?” He asked. Eunice laughed and said, “Everybody decided on 4 o’clock, but Nicole said, ‘Y’all don’t run this show.’ And then she blew kisses to her mother… and left.”
The Truth About Butterflies: A Memoir Page 3