When It All Falls Apart (Book One)

by Berry, Lucinda

  “Sure. Thanks.”

  I wound my way through the maze of hallways until I found the cafeteria. To my disappointment, it didn’t open until 7. I couldn’t make it until then without a cup of coffee. I wasn’t going to give up and found a vending machine with coffee I knew would taste terrible, but it was better than none at all.

  “Thanks,” David said as I handed him his cup with his two sugars and one creamer already stirred in. He slid the chair he’d been resting his legs on all night next to him and motioned for me to sit down. “Look, I’m sorry I was so pissed at you yesterday. I’m just scared. Really scared. And I feel so powerless to help her.” His big blue eyes filled with tears.

  I took his hand. “It’s okay. I get it.” I rubbed my fingers back and forth across his and felt some of the tension in his body leaving. “We’re going to get through this. No matter what happens, we’ll make it through it.” We had to get through it. There wasn’t any other option.

  David turned the TV on for the first time since we’d gotten into our room and we watched the early morning news beginning with the traffic reports. I couldn’t remember the last time we’d watched the news together. Neither of us spoke as we stared at the screen. Occasionally, one of us would turn to look at Rori whose color seemed to be getting more yellow with each passing hour. We’d gone through two series of morning shows before Dr. Koven walked into the door. Unlike us, she looked rested. Her face was flushed with the glow of pregnancy and her dark hair was pulled tightly back into a ponytail. She carried a cup of coffee from Starbucks and an IPad cradled in her arms. David rose from his spot to offer his seat.

  She smiled wide exposing perfectly white teeth. “No, it’s okay. Really. I’ll stand. But thank you.”

  Rather than sit back down, David continued to stand. As Dr. Koven read the nurses’ notes in Rori’s computer, he began to pace back and forth across the cramped room. “How are you guys holding up?” she asked.

  “We’re doing alright.” I responded.

  She looked down at Rori and concern passed across her face before quickly replacing it with ambivalence. “I’m afraid I have some bad news.”

  The room rolled and then stilled itself. I held onto my chair with each hand. David looked as if he might throw up on the floor.

  “Rori is very sick. We got the test results back from the lab and there are some serious abnormalities. I’ve called in a team of geneticists from UCLA and Children’s Hospital to consult on her case. They should be here within the hour.” She paused, giving her words a moment to sink in. “Unfortunately, Rori isn’t getting better. Her test results revealed that she’s experiencing acute kidney failure. It’s why she isn’t going to the bathroom and also why her ketones are so elevated. They’ve reached critical levels. Her entire body is completely acidotic. Our job is to figure out why.”

  “What are we supposed to do? How do we treat it? What’s the next step? Is she going to be okay?” David asked.

  “It’s important to remember that metabolic acidosis and kidney failure are not a diagnosis. They’re symptoms of an underlying disease. The only way to correct the acidosis and get the kidneys functioning again is to determine the underlying cause. Once we’ve done that, we can begin the appropriate treatment. It’s why we’ve called in a team of geneticists. We’ve ruled out all of the common causes and now we have to begin looking at rare and less common diseases. However, kidney failure is very serious and we have to begin treating it immediately even without knowing the cause of it.” Her face was emotionless. I wondered how she kept it that way.

  “How do we treat it?” David’s voice was thick with emotion.

  “We’re going to have to begin dialysis.”

  “A four year old can get dialysis?” I’d never heard of such a thing. I thought dialysis was something reserved for the elderly.

  Dr. Koven nodded. “It’s necessary when the kidneys are failing and unfortunately, Rori’s kidneys are failing. The job of the kidneys is to get rid of the waste products in the blood and when they stop working, the waste products begin to build up in the blood causing serious problems. This is what we’re seeing in Rori. Dialysis allows for a machine to artificially remove the waste in her blood and the excess fluid her body is retaining before putting her blood back into her body.”

  “So, you take it out and then she gets better? How long does it take to get better?” David had managed to stop pacing and was leaning against the far wall, arms crossed, anxiously rubbing his hands up and down his arms.

  “I wish it were that simple. Until we find out the root cause, she’ll have to continue to be on dialysis and I have to tell you that there are instances in which dialysis doesn’t work.”

  “What happens then? What’s the next step?” I asked.

  This time Dr. Koven couldn’t hide her emotions. I saw the lump of them rise in her throat and watched as she swallowed them back down. How many times a day did she have to go through this with parents?

  “If dialysis doesn’t work, we’ll begin looking at a kidney transplant. In some cases–”

  “A kidney transplant? Are you serious? How is this even possible? Three days ago she was perfectly healthy. She was totally fine. It doesn’t make any sense...” David was rubbing his arms hard enough to rub them raw. He looked like he might crumple on the floor at any minute. I wanted to reach out and take him into my arms, but I couldn’t. I was frozen to my spot. My brain heard the words she was saying, but they didn’t register.

  “We don’t know, but I can assure you that she’s going to be in the best hands possible. The genetics team works with all types of rare disorders and I’m certain we’re going to find an answer. I understand how hard this must be for you to hear.”

  “But she’s going to make it, right? Right?” I asked. My voice sounded hollow like it wasn’t my own.

  “We can’t say. Your daughter is very sick. I have to be honest with you. There’s a chance she might not make it through this. Kidney failure can be fatal.”

  David looked as if someone had punched him in the stomach. I grabbed a chair and pulled it over to him. “Sit down,” I said. I was afraid he might fall over if he didn’t. I stood behind him and placed my hands on his shoulders to steady him as he hunched over putting his head in his hands.

  Now was the time for me to freak out, but I still felt nothing. Dr. Koven had just told me my daughter was suffering from a medical problem that had the potential to kill her and I was completely numb. Maybe I was in shock. People responded to bad news differently all the time. I was sure any minute the emotional impact of the news would hit me. It had to. Until then, my job was to be there for David and Rori.

  “What’s the plan?” I asked. My brain automatically shifted into project management mode from all of my years in operations.

  “This morning we’re going to begin getting her ready for dialysis. The first step is a very minor surgery where we open her veins up so we’re able to insert the dialysis needle. Like I said, it’s very minor so she won’t go under or anything. We’ll sedate her heavily and numb the area so she doesn’t feel it. The procedure only takes a few minutes. Then, once the opening is in place, we’ll begin dialysis. I want to begin it as soon as possible. Hopefully, by this afternoon she’ll be going through her first round.” Dr. Koven explained.

  “And the geneticists will be here shortly?” I asked.

  “I’ll bring them in once they’re all here. They’ll extensively review all of her charts and the blood work she’s had done. They’ll want to examine her as well. They’ll take a detailed family history from the two of you. It’s important that the two of you try to think of any family members both within your immediate and extended family who may have gotten sick, especially anyone you know who may have died in early childhood.”

  I felt David’s quick intake of breath when she said the word “died.” He’d been right all along. This was serious.

  Chapter Seven

  Rori woke up as they were wheelin
g her down the hallway for the surgery to prep her for dialysis. “Mommy, I want Puppy,” she cried. “Where’s Puppy?”

  I wanted to kick myself. How did I forget to grab Puppy? Puppy was the pink stuffed animal she’d slept with since she was a baby. I’d forgotten the most important thing when I’d gone home to get our stuff last night. David never would’ve forgotten it.

  “Oh honey, mommy’s so sorry. I forgot to get her last night. I’ll get her today for you, okay? I promise.”

  She started to cry, but without any tears. Her face crinkled up as it always did and her mouth turned down, but the tears that would normally wet her face were absent.

  “I want Puppy,” she sobbed. “I want Puppy!”

  “Celeste, why don’t you go get it for her?” David asked.

  “But what about her surgery?”

  “You heard Dr. Koven, it’s only going to be minor. I think it’s important to get her. It’ll make her feel so much better if Puppy is here when she wakes up.”

  Rori looked up at me expectantly. Her eyes matched her yellow skin.

  Sure, I guess I could. But I wanted to be here for her surgery.” I said, turning to look at David. “Why don’t you go? It might do you good to get some fresh air.”

  “I suppose I could go if you wanted me to.” He reached down to brush Rori’s hair out of her face. “Rori, honey, daddy is going to go home and get Puppy. Mommy’s going to stay with you while the doctors get you ready for your medicine. By the time you’re done with the doctors, Daddy will be back and he’ll have Puppy. How does that sound?”

  “No! I want Daddy! I want Daddy!” Her voice echoed throughout the hallway reverberating off the walls. I wanted to cover my ears.

  “Sweetie, don’t worry. Daddy is going to be back really quickly. I promise it’s going to be okay,” he said.

  She reached out to grab his arm, the wires getting tangled from her movements, sobbing. “Daddy, please, don’t leave me. Please.”

  We’d reached the room and the nurse was standing in the doorway expectantly. David turned to face me, shrugging his shoulders. Of course she wanted David. She always wanted him.

  “Okay, I guess I’ll go then.” I forced a smile.

  I kissed them both quickly on their cheeks and was gone. I fumed as I drove. She’d cried out for David in front of all the nurses and doctors. They’d all heard it and I knew what they were thinking. They were wondering what little girl wouldn’t want her mom to be with her when she was sick. I imagined they were behind their desks at the nurse’s station gossiping about it. I knew none of them would look at me the same again. Something similar had happened a few months ago when Emma and Rori were playing together and I knew Robin still hadn’t forgotten it even though she never brought it up. I was sure they’d look at me the way she had.

  It had happened during one of our weekend play dates. Emma and Rori loved to play together. Emma was only two months older than Rori so they’d known each other since they were infants. Robin and I had been thrilled to be pregnant at the same time and excited for them to grow up together. Most people who lived in Los Angeles were transplants and we were no different. My family was scattered across the country and all of Robin’s were in the Midwest. Emma and Rori were as comfortable with each other as siblings and recently they’d even started pretending they were. When we’d go out to dinner or take them for walks, they would giggle and tell people they were sisters even though they looked nothing alike. They couldn’t have been more opposite. Emma was a perfect combination of Trey and Robin’s genes. She had the blond hair of Robin and the green eyes of Trey. Her pale skin and defined bone structure coupled with pale skin made her look like an oversized doll. Unlike Emma’s ivory skin, Rori’s olive complexion mirrored mine just like her deep brown eyes. Whereas Emma was small and dainty, Rori was large boned and gangly—a body that would take years to grow into. No one ever believed their stories about being sisters, but people humored them with smiles and questions.

  Our families got together all of the time. A weekend rarely went by that we didn’t see each other at least once. We were as comfortable at each other’s houses as we were our own. Robin and I knew how lucky we were that our husbands got along so well since it was rare to find couples where both sides of the dyad liked each other.

  We’d been at Robin’s hanging out and grilling steaks on the barbecue. The men were hovered over the grill drinking beer and discussing which basketball team they thought was going to end up in the final four. They were already waging their bets. Trey was as big of a sports fanatic as David and the two never tired of talking about sports. Robin and I were off to the side, sipping red wine on their new patio furniture while we watched Emma and Rori zoom up and down the concrete slab leading up to Robin’s driveway. Emma was on her new Razor scooter while Rori struggled to ride Emma’s training wheel bike with the long flowing pink streamers coming out of the handlebars. Rori was clumsy like me and having a tough time coordinating the pedals with any productive movement so it was no surprise when she took a tumble. She crashed down onto the concrete and let out a wail when she saw blood coming out of her knee. She was tough when she got hurt except if blood was involved. She completely lost it if there was even so much of a trickle.

  I jumped out of my seat and ran to scoop up Rori’s crumpled body. She pushed me away. “Get away from me, Mommy. I want Daddy.” She screamed. She wiggled and pulled away from me in my arms, frantically struggling to get out of my arms and then she screamed it again, louder this time. “Get away from me, Mommy! I want Daddy!”

  I turned to look at Robin who had automatically jumped up with me when Rori fell and was standing behind me. She was looking at me curiously with her face wrinkled up. She caught my eye and quickly changed her face to one of sympathy. “Sometimes they just want their dads,” she said, but her voice was forced and awkward.

  David came running over and Rori easily collapsed into his arms as he wrapped them around her. “It’s okay, sweetie. You’re alright,” he cooed.

  Within minutes she was smiling again and skipping off to the grill to be his helper calling after Emma to follow her. She giggled as he picked her up and threw her over his shoulders as if she weighed nothing. Robin and I took our seats again.

  Fucking brat.

  I tried not to think of her that way, but sometimes I couldn’t help it. Why did she insist on embarrassing me? Why did she always have to make me look like such an idiot? Robin had immediately started chattering away about the latest sale at the Pottery Barn as if nothing had happened, but I knew something had shifted between us that day. She had wondered the same thing I knew the nurses were asking about me now––what kind of a mother was I?

  I didn’t know. I’d asked myself the same question on more than one occasion. I didn’t understand why I seemed to be such a terrible mom because it wasn’t as if I hadn’t wanted kids. The opposite was true. I’d wanted to be a mom from as far back as I could remember, but I had never counted on having a daughter who seemed completely indifferent to me. Nothing had happened how it was supposed to happen.

  I wanted to take a long shower before heading back to the hospital. The sterility of the hospital made me feel dirty, but I knew I didn’t have time to wash it off. Rori was going to expect Puppy as soon as she was finished. I pushed my ruminations aside and focused on the task at hand.

  By the time I got back to the hospital, Rori’s preparatory surgery was complete and she was sleeping peacefully back in her hospital room. David was by her side holding her hand. I placed Puppy on her chest.

  “How’d it go?” I asked.

  “Really well, surprisingly. They numbed her up pretty good and it only lasted like five minutes. She was sleeping again by the time we got back to the room.” He handed me a cup of coffee with the familiar Starbucks logo on the side. “The nurses told me there’s a Starbucks on the 2nd floor connecting the two sides of the hospital. I figured you’d need this.”

  I smiled. “Thanks, hon.”r />
  Before I had a chance to take a sip, there was a knock at our door. Everyone always knocked before coming in, but it was more of a formality than anything because they were always through the door before we had a chance to invite them in. Dr. Koven came through first followed by two men and one woman. I didn’t know what I’d expected the geneticists to look like but I hadn’t expected them to look so young. They looked like they were barely out of college. The two men looked like the kind of people who had grown up sitting in front of computers all day playing video games. The woman was small and wispy. She looked like she was jumping out of her skin even though she was standing still and her eyes darted around the room taking everything in.

  “Let me begin by introducing myself. I’m Dr. Wilcox, the head of pediatric genetics at UCLA.” He stuck out his hand to me and then David. I glanced at his badge and noticed he had an M.D. and a Ph.D. behind his name. I’d never seen so many letters behind one name.

  “You have an M.D. and a Ph.D.?” I asked.

  He smiled easily. “Yep. Did my Ph.D. in molecular biology first. Well, I was actually finishing up my Ph.D. while I was in med school.”

  He was the first genius I’d ever met. He’d probably skipped high school and gone straight to college. His long hair was orange and curly and he tucked it behind his ears constantly. He reminded me of Carrot Top except with a mousey face. Unlike Dr. Koven, he wasn’t wearing a white lab coat. He was dressed in regular business casual clothes. I followed his worn khakis down to his black Converse shoes.

  The other man was a tall Black man who towered over him. He wore a collar shirt buttoned up to his neck. He stuck out his hand next. His hands were soft and nails neatly clipped as if he had recently gotten a manicure, but he had a firm hand shake.

  “I’m Dr. Martin. I’m one of the fellows on Dr. Wilcox’s team.” He pointed to the antsy woman who had taken up a position behind Dr. Wilcox and was devouring her fingernails. “This is Dr. Hettinger. She’s a second year resident.” The woman barely looked up at us before looking away.