When It All Falls Apart (Book One) (9 page)

Despite how sick she was, I still didn’t feel anything. It was if the plug connecting me to my emotions had come undone. I tried to bring myself to feel guilty about my lack of feelings but I couldn’t feel the guilt in my heart in any kind of a real way. Instead of spending time trying to get myself to feel something I couldn’t, I focused on my feelings toward David and doing what I could do to make him feel better. Unlike me, he was an emotional wreck. He wasn’t sleeping for more than an hour at a time and it had nothing to do with our uncomfortable hospital conditions. He didn’t eat and I was pretty sure he’d lost as much weight as Rori. He was starting to resemble a tweaker with his sunken in face and constant teeth grinding. He consumed coffee by the gallon and all the baristas at the hospital Starbucks already had his order memorized.

Since Rori didn’t do anything but sleep, we had endless hours to talk to each other and it allowed us to talk about all the underlying issues going on between us. It reminded me of how things used to be and felt wonderful. We finally got the opportunity to clear the air about our awful fight.

“Babe, I’m sorry. I’m really sorry I said what I said and I know there’s been a rift between us ever since. These early years are so hard. Everybody struggles, but I promise you once we get out of here, things are going to be better,” It was the third time he’d said it since yesterday, but I liked it more every time he said it.

I laid my head on his chest, “I’m sorry too. I don’t know what’s happening half of the time. I hate fighting with you.”

He kissed the top of my head. “I know I’m different...”

It was the first time he’d admitted it. It felt good to hear him say it—validation that I wasn’t crazy. “It’s weird for me.”

“Can you believe I turned into you? God, how do you live this way?”

I burst out laughing and punched him in his arm. “It’s not so bad. You get used to it.”

“I always wanted kids. You know that. I just wasn’t prepared for this.”

“Neither was I. Any of it.”

“And certainly not this.” He motioned to Rori strapped up to all of her machines in her hospital bed.

I let out a deep sigh. “We’ll get through this. I promise you.”

Later on while we were in the cafeteria staring at our plates instead of eating, he looked at me like he used to with eyes overflowing with love. “I need to do better at being there for you. We need to spend more time with just the two of us.” I beamed. I missed him so much. Was it possible this crisis would be the thing to bring him back to me? “How about once this is all over, we go away for the weekend together?”

“Like without Rori?” We hadn’t left her alone overnight with anyone since she’d been born.

“We’ll leave her with Robin and Trey. She loves them and she’s totally comfortable there. She probably won’t even notice we’re gone.”

I squeezed his hand under the table. I couldn’t imagine getting to have him all to myself for an entire weekend. “Can we lay in bed until noon, please? God, remember when we actually used to do that?”

“We can do whatever you want to do.”

He took my hand on the walk back up to her room and I had to hold myself back from skipping down the hallway. My thoughts were racing and already planning ahead to where we could go on our weekend. I knew Robin wouldn’t hesitate to watch Rori. She’d offered on numerous occasions especially since we’d watched Emma overnight for her and Trey plenty of times. David had always refused her offers saying he’d spend his time worrying about her instead of enjoying himself. I was so glad he’d changed his mind. I wondered if he meant we could go away for the entire weekend or if he’d only meant Saturday night. I wanted to rent the small cottage on the beach where we’d spent our tenth anniversary. It was one of the most romantic weekends we’d had waking up each morning with the sound of the ocean and the smell of salt wafting through our windows.

David was bummed we couldn’t have visitors but I secretly enjoyed it just being the two of us. There were also long periods of silence but even those periods were comfortable again. We could sit in silence without feeling as if we had to fill up the space. I didn’t even miss work and I always missed work.

“Are you asleep?” I whispered from my chair shortly after the two a.m. nurse check.

“I wish,” he said. “I feel like I haven’t slept in years.”

“I get jealous.” My voice came out barely audible.

“Huh? I can’t hear you.”

I cleared my throat and tried again. “I get jealous.” I felt so silly finally saying it out loud. Who got jealous of a 4 year old?

He rolled onto his side and propped himself up on his elbow. “I know.”

“You do?”

“You’ve had me all to yourself for over ten years. Now you have to share me and you don’t share very well.”

I couldn’t see his face in the dark but I didn’t need to. I knew he was smiling. “Does that make me pathetic?” I asked. “I mean, I know I shouldn’t. I know it’s stupid, but I miss you. I miss when I was the most important person in your life.”

The silence stretched out between us. Finally he spoke again. “You both are important to me. I’ll work on giving you more of my attention. I realize all of it goes to her.” His voice was kind. “Come here.”

We’d been taking turns sleeping on the cot and tonight was his night. I crawled into the cot with him that was smaller than a twin sized bed. I curled up next to him so he could spoon me from behind, wrapping his arms tightly around me. He smelled sweaty because he hadn’t showered since we’d been at the hospital and it’d been four days, but I didn’t mind. It was familiar and comforting. We managed to fall asleep together, but my last thought before nodding off was that he hadn’t said I was the most important person to him and only one person could hold that coveted spot. When it came down to it, you always had to choose. I knew Rori was supposed to be the most important to me just like she was the most important person to David, but if I had to pick between saving his life or saving hers, I had to admit I’d chose him. I also knew he couldn’t say the same about me, but I was going to have to learn how be okay in second place if I wanted our marriage to work.

A nurse I didn’t recognize came in for morning rounds. I was beginning to know all of the nurses as they rotated through shifts. It was the first male nurse we’d had and he was so full of energy he practically bounced into the room. He wore scrubs with Disney characters on them like every other nurse on the ward. His were SpongeBob and I wished Rori would open her eyes to see them. She’d just recently been turned on to SpongeBob and thought the show was hilarious. We could never get her to switch shows even though David and I found everything about it annoying.

“The genetics team is going to be here at 4,” he said checking her vital signs.

I was surprised they were coming so late because the majority of the face to face time with the doctors was in the morning. We had yet to see a doctor after the early afternoon. I didn’t know if it was a good sign or a bad one.

I had expected the entire team of geneticists to be at the meeting and was surprised when Dr. Wilcox walked into the room alone. Dr. Koven wasn’t with him either which I thought was odd. He had a folder tucked underneath his arm.

“How are you guys doing today?” he asked.

Everyone always asked the question and I still had no idea how to answer it.

“We’re okay,” David responded. I liked that he’d started referring to us as a “we” again.

Dr. Wilcox pulled out the stool from underneath the computer table where they made entries about Rori and wheeled it over in front of us. He took a seat. “There’s not an easy way to have this conversation today, so I’m just going to get started.”

David gripped my hand. I squeezed tightly back.

“I’m fairly certain we’ve narrowed down a diagnosis for what’s going on with Aurora. We’ve gotten all of the blood tests back from the labs. Both yours and hers. In addition, we’ve been able to take a look at the ultrasound pictures they completed yesterday. It looks like your daughter is suffering from a very rare genetic condition known as Autosomal Recessive Polycystic Kidney Disease. All of her blood tests were consistent for what we could expect to see in a kid with autosomal recessive PKD. That was why we ordered the ultrasounds yesterday. We wanted to look at her kidneys and her liver. We found numerous cysts on her kidneys and she’s begun to develop cysts on her liver too. Again, this is exactly what we would expect to see in someone with autosomal recessive PKD.”

I breathed a sigh of relief. We finally had a diagnosis. At least we knew what was wrong with her and could start to treat the disorder rather than her symptoms alone. I wondered how long it would be before she started to get better. I was ready to attack the problem as quickly as possible so all of us could start feeling better.

“How did she get it?” David asked.

“It’s a genetic disorder. One that’s inherited from both sets of parents.”

“But I don’t understand.” David looked puzzled.

“Genetic disorders are tricky. Every person carries their own unique blueprint of genes. All of us are carriers for various types of disorders. However, most of the time, they never manifest because only one parent carries the gene. It’s only in those cases where both parents are carriers of the gene that a child will develop the disorder,” Dr. Wilcox said.

“Yes, I get that. I understand what you’re saying. We had genetic testing when we were trying to get pregnant and Dr. Keene explained all of that to us, but he told us we didn’t have anything that would create a disorder in any of our children.” David’s head was cocked to the side, eying Dr. Wilcox quizzically.

“Yes, I know you had the genetic testing. We spoke with Dr. Keene and reviewed all of your charts. Maybe you remember Dr. Keene telling you that your wife was a carrier for this? I see a notation in the chart in which he explained to you that Celeste was a carrier for autosomal recessive PKD. Do you remember that conversation?”

I did. I remembered that conversation and panic seized me.

Oh my God. This can’t be happening.

I shook my head pretending as if I didn’t remember the conversation. I wanted to say something to divert the discussion, anything to derail what was about to happen, but I couldn’t find my voice.

“I remember he said something about Celeste being a carrier, but he said it wasn’t possible to pass it on to our children unless I was a carrier and I don’t have the gene.” David still looked lost.

Dr. Wilcox looked David directly in the eye. “Dr. Keene was correct. There is no way to pass the disorder on unless both biological parents carry the gene.”

“I don’t get. It doesn’t make sense. How is that even possible then?”

My chest tightened. I couldn’t breathe. I was going to throw up and have diarrhea all at the same time. I stared at the bathroom door wondering if I should sprint to the toilet, but in addition to not being able to talk, I also couldn’t move. I was rooted to my spot as the world swirled around me.

This time Dr. Wilcox placed his hand gently on David’s knee and repeated, “There is no way to pass this disorder on unless both biological parents carry the gene.” His gaze was unwavering. I turned to David and saw it happening. The reality registered as the blood drained out of his face, rendering him completely white.

As if he was a robot, he repeated in a mechanical voice devoid of all emotion, “Unless both biological parents carry the gene. I don’t carry the gene.”

My thoughts couldn’t translate into language. My brain was on fire. The two of them continued the conversation next to me, but I couldn’t hear them. The sound had been turned off in the room. The walls were breathing—inhaling and exhaling around me.

Dr. Wilcox stood up, startling me back into my body, crashing me into my seat. “I’m sorry. I wish there was a way to make this less difficult, but there isn’t. Don’t say I didn’t warn you. I get off at six if you wanna meet me for a beer.”

I wasn’t included in the invitation.

“It’s about to get even more uncomfortable in here.” David still looked as if he was in a trance. He was staring into Dr. Wilcox’s eyes not blinking. “In order to make sure our diagnosis is one hundred percent accurate, we have to do a blood draw on the biological father to be certain. Also, given the level of Aurora’s condition and how fast she’s deteriorating, she’s most likely going to need a kidney transplant. Since you and Celeste aren’t compatible kidney donors, we’ll want to run his blood type because there’s a significant chance he’ll be a match and we like to try to match donors with family members.” Dr. Wilcox shifted his gaze to me for the first time, searching for answers

“Celeste, tell Dr. Wilcox who Aurora’s father is.” David’s voice was one I’d never heard before—ice cold and clipped. He never called Rori Aurora, not since the day we wrote it on her birth certificate.

“I-I-I...” I couldn’t say it. I swore I’d never tell.

“Celeste, tell the doctor.” He spoke through gritted teeth.

“I can’t.” This time my voice was one I didn’t recognize.

“Clearly, this is a lot to digest. I’m going to leave and give the two of you some privacy to discuss the situation. I’ll be back in the morning and we can decide how to proceed from here. In the meantime, I’ve ordered another round of dialysis for Aurora to continue throughout the night.”

He got up from his stool. David stood up along with him. I thought he was going to shake the doctor’s hand but instead he followed him out the door, clicking it behind him without a second glance.

I
didn’t expect David to stay gone all night, but he did. I kept waiting for him to walk back through the door, but each time the door opened, it was only the night nurse. I couldn’t stop texting him.

I’m so sorry. Please talk to me.

I gave up after my tenth apology went unanswered. My skin felt tight like it no longer fit my bones. I clawed at it as if there were termites crawling underneath and paced the small room methodically. The resolve I’d worked so hard to build evaporated and I was pummeled with images from That Night. Phil’s face and his lopsided grin—the raw lust that emanated from his eyes as if he was possessed by a demon. His smell infiltrated the hospital room as if it was alive. I tried to banish the memories—the way he grabbed my hair as he threw me down on the bed, how he’d ripped my blouse open and the sounds the buttons made as they scattered on the floor—but I couldn’t. They just kept coming and each time they did, David’s face contorted across Phil’s. I kept seeing how he looked when the news from Dr. Wilcox finally registered. The image was stuck on repeat. It made my stomach lurch and I ran to the bathroom again and again, heaving into the toilet until there was nothing left except thick green mucus.