The Idyllic Chaos of My So-Called Life

by Amy-Noelle Smith

  The next day Audrey and I went to the hospital to visit Lilah. She was in the children’s wing. In place of the dull hospital blue covered walls, there were giant bright cartoon-like paintings of scenes from popular children’s programs. One wall had a mural of Sponge Bob Square Pants. Across the hall, the opposite wall had a brightly painted mural devoted to the Wizard of Oz where there was a playroom filled with new toys and computers.

  As I walked down the hall, I tried to steal a peek inside the occupied rooms. There amongst the tubes and machines were giant pictures of Superman and Scooby Doo, as if that would ease the suffering. I slyly peered into each room and caught glimpses of the children who occupied these cartoon caves. They were immobile and hooked to a variety of machines. Many had their heads wrapped in kerchiefs. One little girl turned her head and found my eyes as I passed by—her face a bluish-gray hue, her cheeks puffy and swollen, and the skin around her eyes as black as night. Her pinkish gray lips were dry and parched. She looked at me, and pulled her gray stuffed elephant to her chest, and did something I didn’t expect. She smiled and held up her small bandaged black and blue hand with the IV attached firmly, and waved. With a small smile filled with guilt and sorrow, I waved back.

  Lilah’s room had different scenes from the movie “Finding Nemo.” One wall was painted bright azure with the likenesses of two orange striped fish directly in the center swimming around a gigantic painted sea anemone. It was clearly meant to be bright and cheerful, taking loved one’s minds off the tragic inevitability of their children. Along the window, I spotted a reclining chair with a blanket slung over the back—probably were Lucy slept.

  Lilah lay in the mechanical bed with her head wrapped in a scarf that hid where the doctors had drilled into her skull to extract a piece of the mass. From what I understood, Lilah’s brain function at its highest point was like that of a twenty-four-month-old. She’d peaked about two years ago, and then her brain function began to regress. She had the capability of an eighteen to twenty month old. For that, part of me was glad. Glad that she truly didn’t understand the things that were happening to her. I wondered how much pain she was in—was pain the same thing without the understanding behind it, or the knowledge that tells a person that they are in pain, and should act accordingly. The relief that I felt for her lack of understanding was quickly replaced with sorrow—that maybe she felt even more pain because she couldn’t comprehend what was happening to her.

  Audrey walked in behind me with Lucy. The intonation in her voice was a clue that the news from the biopsy was not good. I guessed that the brain tumor was most likely malignant, because it could not be removed. Radiation and chemotherapy were the only way to shrink it. Lucy said that Lilah was in no kind of physical condition to withstand such aggressive treatment that ravaged the body and destroyed the will.

  “Thanks for coming,” Lucy said as she reached over to give me a quick hug.

  “Here, I brought this for Lilah,” I said, sheepishly handing her a light brown teddy bear gripping balloons that said get well. This was clearly an inappropriate gift.

  We sat beside Lilah’s bed, and I found her intense frailty disturbing. Lucy and Audrey were engaged in a round of small talk, which juxtaposed with the current situation seemed out of place. I’d always found it odd that at times of great sadness how people could carry on trivial conversations as if nothing was going on at all. As the thoughts poured through my mind, I heard my name, which snapped me back to the present.

  “Maybe you could play your guitar for the kids in the playroom—if you have time that is—I know teenagers can get busy,” Lucy said while stroking Lilah’s hair away from her face.

  “Yeah, sure,” I responded, only half paying attention. I’d let my mind wander as I looked at Lucy and Lilah. Looking at her, I thought about the randomness of the universe. It didn’t seem fair that a mother who loved her child so dearly would have to suffer the devastation of loss, while a mother like mine, who’d never loved me, would most likely never feel that kind of loss. It made sense in some kind of twisted way that I should be the one to die of cancer. My mother wouldn’t care. But to put this kind of devastation upon Lucy seemed more than unfair; it seemed downright cruel. I convinced myself that the universe was unequivocally random, because a loving God would never let this happen.

  Lucy was talking when I finally tuned back into the conversation. “We’re going to stay through the end of the week, then we’ll be going home. I’ve got a visiting nurse coming to help us out. I’m gonna take four, maybe even six weeks off from work. Thank god they’re gonna let me take a leave of absence. We’re gonna try to make her as comfortable as possible.”

  I sat there and listened to her words, and I started to feel my eyes narrow as my knuckles wrapped around the bottom of the chair. Was Lilah not worth saving, not worth trying to save? If what you contribute to the world is the acid test for survival, then none of us, especially me would be worth saving. I felt myself stand up. It was as though I was no longer in my body. I was looking at myself from the outside. “Isn’t there anything you can do? You can’t just let her get sicker. You can’t let her die!” I bellowed as I ran out of the door.

  I walked through the halls of the hospital as though I was in a tunnel. The edges were fuzzy, and I could only see directly in front of me. I made my way to the waiting room, and flopped into a dusty chair. Why was I always letting my temper get the best of me? Audrey entered the waiting room with a look, half-disappointment, half-pity. She sat down beside me. I was always waiting for her to yell and scream at me for being such an idiot, but she never did. I envied that in her personality.

  “You need to apologize,” she said gently but directly.

  “I’m sorry,” I returned.

  “Not to me. To Lucy. This isn’t an easy thing for her. It’s more than not easy. It’s devastating. She’s the only one who knows what it’s like, and we cannot make any judgments about her decisions. I will not, will not allow you to lose yourself again around her. Am I clear?”

  “Yes. It’s just that. I get so upset—it’s not fair!” I ached.

  “Honey, you more than anybody knows how unfair the world can be. Our job is to—I don’t know, find a way to just make sense of it, in the best way we know how.”

  I shook my head as I got up from the chair—preparing to walk back down the hall and apologize for my outburst. I felt like I’d been saying, “I’m sorry” a lot the last couple of months. I guess that’s what happens when you are around people who actually pay attention to your behavior. Audrey took her hand and patted my back as a sign of reassurance. She was good at reassuring people. No wonder she made such a good teacher.

  I made the long walk back down the hallway, dreading the thought of facing Lucy out of sheer embarrassment. As I fumbled through the open door, Lucy was feeding Lilah some vanilla pudding. She looked over at me, and as I started to say, “I’m sorry” she held her hand up, signaling with a sideways and down motion that matched the movement of her eyes that everything was fine. I think she understood, and I was glad about that.

  She looked over at me as she was spooning pudding into Lilah’s mouth. “Did I ever tell you about the day I brought Lilah home?”

  I turned my head from side to side as I widened my eyes to silently signify no.

  Lucy smiled and continued. “She’d been in the hospital for three months. She was born at twenty-eight weeks—three months premature. She was so tiny, she could fit in the palm of my hand, and she looked so fragile with her translucent pink skin. I was so scared, but she made it. I got to bring her home on December 22nd. She was the best Christmas present I could have ever asked for. It was just the two of us, and we had mountains to climb and obstacles, whew, so many obstacles to overcome.

  “I’d fixed up a nursery in the corner of this tiny bedroom. I had the most ethereal bassinet. It was all white, and had a kind of hood that lapped over the top. The long white lace fabric hung nearly to the ground. It was on rockers so her
bed could gently sway back and forth. On the wall, I’d painted a pink bunny to watch her as she slept, and there was a mobile made up entirely of stuffed little pink and white bunnies that turned slowly to the song ‘Rock a Bye Baby.’

  “That very first night, I laid her in her bassinet, and I watched her all night. I never went to bed. I never even felt tired. And I knew that no matter what the problems were that I was the luckiest woman alive. I was forever in love with this child, my child.”

  I felt my eyes strain trying to fight the tears that involuntarily welled up along the edges of my eyes. “I kind of envied her. I mean, I don’t know if that’s wrong for me to say, but she’s so lucky to have someone like you to be by her side, to love her no matter what.” I struggled for the right words, and part of me was inwardly saying, shut up already.

  “Can I ask you a question?” I timidly suggested.

  Lucy’s eyes drifted down, and then up again swiftly to signify yes.

  “Well, um, where is her father?”

  Lucy had a broad cat ate the canary smile that drifted across her face. “Oh him. Hmmph. He found out I was pregnant, and he was gone. I guess in his defense, we’d only been dating a few months, and I really didn’t think I could even get pregnant. I’d had three miscarriages with my ex-husband, and had been told by my doctor that my endometriosis made it nearly impossible for me to carry a pregnancy to full term.” She paused, and then huffed out a short muffled laugh. “I guess he was right. Anyway, he got out of town right from the beginning. He doesn’t even know about her struggles, not that it makes him any less of an ass, I guess.”

  I leaned over to her, and whispered to her in my naive quivering voice. “I don’t believe in miracles usually, but if, if one were going to happen it would happen for you and for Lilah. I know you’re gonna see a miracle.”

  Lucy placated me and my naive statement as she put her hand on top of mine. She knew, as well as I did, that there would be no miracles. Not in this room.

  It was hard to believe that two weeks had passed since my visit to the hospital. Lucy and Lilah were home, and she seemed to be doing a little better. She was eating and seemed to enjoy our time together tending to the wild flowers in the garden. She was taking medication to help with any seizures that the tumor caused.

  I didn’t know if it was an urban myth or not, but I remembered hearing stories about people on death’s door, and then suddenly their tumors or cancer or whatever it was that had plagued them physically just simply disappeared. Stories just don’t create themselves, I thought, they have to come from some kernel of truth. That flimsy grasp on a distorted reality is what kept me thinking that Lilah was doing better, that she was going to be fine. I knew deep down that I was lying to myself, but I chose to ignore it. I was going to believe, believe in something.

  We sat out in the backyard garden brimming with wild flowers of every hue. Lilah sat in her chair, and I sat in the dirt, weeding the growths that threatened the flowers health. I pulled a few flowers to put into a vase—a few scarlet, a sprig of purple, and a sprinkle of yellow. Daisies were my favorite so I included a few white daisies intermittently among the vibrant flowers. As I sat there arranging the flowers, I didn’t know what the future would bring, but I continued to have one single permeating thought. Today...Today is a good day.

  Chapter Seventeen

  The memory of that Tuesday was branded into my memory, scorching and painful, burning my skin and exposing my flesh to the stinging winds of reality.

  It was an unseasonably warm day in the middle of November when Lilah passed away. She’d been doing better, but very suddenly she had several seizures that completely incapacitated her. She’d been put back into the hospital, and on a quiet Tuesday morning while she stared at the mural of Charlotte from the book “Charlotte’s Web,” she exhaled her final breath, and her heart ceased its rhythmic chant. The funeral, just a few days later, was small and intimate with just a few people there to mourn the loss of a young life never fully realized.

  The memorial service was held at the funeral home, and not in a church. The room looked Grecian with its white woodwork and colonnades that stretched from the ceiling to the floor. The chairs were white with pink cushion pads. The drapes were a thick material that swirled with variations of corals and reds. It seemed to be an overly pink room to me, and didn’t possess the austere formality that I thought a funeral home should. Pink is not a very serious color. I would have thought that mourners would be more suited to differing tones of beiges, calming and serene shades of blue, and ethereal whites placed throughout the room.

  The casket, long and smooth with a gleaming cherry finish, was placed at the head of the room. The inside of the casket was billowing with white satin that surrounded the now lifeless body of my friend, her head resting on an iridescent satin pillow. Her body in death was spared from the constant and involuntary contortions that had afflicted her in life. The room was cluttered with chairs and flowers. Many people who didn’t have the time to attend the visitation or the service sent colossal floral arrangements—some of which seemed to border on bad taste.

  I’d brought a small arrangement of wild flowers from our backyard garden that I placed in a crystal vase that I bought at a collectibles shop in the center of town. I’d brought Lilah’s favorite flowers. White Shasta daisies, vibrant pinkish purple Sweet Williams, and deep maroon Cosmos flowers. She’d had a hand in giving each of these flowers life in the soil on this earth, and I thought it was beautifully ironic that they should go with her into the next life.

  I entered the room during the visitation, and began the tense struggle not to cry. I walked through the endless line of flower baskets reading each card, purposefully ignoring the casket that was centered on the front wall. Each time that I felt my eyes begin to water, and the tell-tale lump in my throat begin to form, I excused myself and went into the bathroom to calm myself, and to allow the tears to dry and the lump to dissipate while taking several deep breaths. I repeated this exercise about five or six times during the two hour-long session.

  During the visitation, everything I did had been a sham. It was as if I’d planned every movement and activity in order to avoid the casket in the front of the room. I’d made another lap around the room and acted as though I was interested in the flower arrangements, all the time struggling with the glossy casket in the front of the room. Audrey had made me make small talk with a few guests. My words were spoken through a clenched jaw so that I could keep myself on an even keel. I glanced at the guest list, unable to concentrate enough on the names to comprehend who had signed the book. I finally settled into an oversize armchair. I just sat there, not wanting to look at the body. My eyes were fixed to the ground, and on my tattered Payless sandals I’d worn with my silly flowered sundress, my knuckles curved tightly around the arms of the chair, and my jaw continued to clench in order to fight back the tears. I would not fall apart, not here, not in front of Lucy. I thought about how unbearable the funeral would be tomorrow.

  I woke up the next morning to the sound of the rain thrumming along the rooftops. It was a light rain that looked as if it wouldn’t last. The diaphanous gray clouds fell away as the blue sky was exposed, and the sunshine struggled to touch the ground.

  I looked into my makeshift closet, which was a metallic hanging rack that contained everything that couldn’t be stuffed into a drawer, and pulled out a sleeveless black cotton jersey dress that looked to be about two sizes too large for my frame. It would do just fine. Anything I wore today was going to be garbage by night-time. I would never wear this dress again.

  I had this constant feeling that lived and breathed in the pit of my stomach. It gave me waves of nausea alternating with waves of panic and misery. I desperately needed to make it through this day. I didn’t know if or how I was going to make it, but I knew that I had no other choice.

  I walked with my wrinkled black dress into the funeral home. They had moved the pristine casket into the chapel area. The chapel are
a had the same columns as the visitation rooms. Instead of pink, this room was decorated with a hideous array of floral patterns and doily curtains. The chairs were arranged in uniform matrix-like rows. The center aisle led straight to the deep cherry box that held Lilah’s once frail body, a body now without a spirit, a body that seemed to defy labels and definition—not frail, not strong, not anything.

  The mortician was pulling double duty as an usher passing out programs to the visitors. Audrey and I moved down the center of the aisle and chose two seats about five rows back, and more importantly on the end. I liked end seats in case either one of us needed to make a quick getaway for tissues or to catch our breath.

  There was just a smattering of mourners at the service; about twenty people, not a lot by anyone’s standards. Lucy didn’t have much family. Her father and stepmother came to pay their respects although they hadn’t seen Lucy or Lilah in the last five years or so. According to gossip Lucy’s mother died around ten years ago in an auto accident. Her father was remarried in less than six months. I overheard Lucy and Audrey talking one day; she’d suspected that her father had been having an affair for a while, and was on the verge of divorcing her mother. The other mourners were people from the neighborhood, the hospital, and Lucy’s work.

  I kept a tissue nestled tightly inside my hand. I liked having something to fidget with as the minister spoke. During the visitation when I’d felt the overwhelming urge to cry, I found that if I squeezed my eyes and the tissue in my hand with resolute determination, the urge seemed to pass without incident. I sat there with Audrey watching people in their fixed state of depression come in like deer in headlights, eyes widened and lost. Will had asked me if I wanted him to come to the service, but I’d said no. I would have a hard enough time containing myself without looking to him to decipher his emotional state. We’d made plans to meet at Lucy’s afterward where people would be bringing over casseroles and deli platters to help ease the suffering.