Ry's last week of life in hospice, we drew closer as Cystic Fibrosis dealt the final blow
|May 1st, 2005
Today, a year ago on a morning soft and warm like this one, hospice made its first visit to our house. I am forever grateful to those people for what they did for Ry, but calling them was such an admission that he was really going this time. I asn't ready for it. To be fair, I never could have been ready.
On this quiet May morning, I began to mix up Ry's nebs when he motioned me over to his side. "Allie?" I set down his nebulizer and focused my full attention on him. "Yes, pook?" He looked away from me, almost embarrassed to ask what he was about to ask. "Do we have to?" I was confused. "Do we have to do what?" He sighed and gazed out of the picture window in the living room. "All the meds. The treatments. They aren't really helping, and Al..I'm tired, I'm ready to go. I'm ready to stop. " He looked up at me. "But if you want me to, I'll keep with the meds."
My eyes made a beeline for the floor, not wanting to meet his pleading gaze. How could I deny him this request? I could hardly stand to listen to him breathe anymore, each breath a crackling, wheezing labor. It sounded painful, and hard, and I hated to be reminded of what Cystic Fibrosis was doing to him. He was right, we did his treatments more out of habit than help now. "Ry, it's okay. Stop. Relax. Rest." I closed one of his thin hands in both of mine.
"Are you sure?" "Yes, I'm sure." He squeezed my hand. "Thank you." He lay his head back on the pillow and closed his eyes. "I'm just tired. It's annoying.'' I sat by him until he fell into a sleep, holding his hand.
The day waws filled with me and Ry notifying people of the fact that he'd opted to start hospice and he was, as he said 'circling the drain'. People were in shock about it, even as they came to visit Ry and saw how weak he had grown. Nobody thought he was capable of death. He was such a toughie.
I never thought him capable of it either, even as I sat with him and watched him sleep, gently wiping his forehead with a wet cloth, before his sweat had a chance to turn him into a human salt lick. He opened his eyes as the sun set over the range of mountains outside our window. "oh, now I feel really pathetic." He smiled. I tossed the washcloth on the endtable. "You're not pathetic, not by a long shot." I gave him a kiss. I made him sit all way up and sat behind him, his head resting on my shoulder. "I love you, Ry." He smiled peacefully, his eyes closed. "I love you too."
It's amazing how when the sun is setting, things are at their most beautiful. But I knew it was about to go dark.
May 2nd, 2005
It's strange to me that the most beautiful days, when so much life was returning to the earth, the one who brought color to my life was leaving it. It was a surreal event, and still hadn't become real to me. It was all some sort of dream I would wake up from, unscathed, and we'd both laugh about it later.
I brought the chilled soda from the kitchen, slipping a straw into it and setting it on the table next to him. His eyes were closed, soft lashes fanning against his cheeks. He looked like an angel. In moments like this, I forgot how sick he was, I looked past all obvious signs and saw only what I wanted to see, his light, his soul. I think we're alll guilty of that from time to time.
I sat next to him on the edge of the couch, and he stirred. His great brown eyes opened to reveal the glittering mischief within. Recognition flickered in his eyes, and a smile crept across his pale face. He gave a small stretch, and I put my hand on his shoulder, unable to keep my hands off him for more than a minute anymore. "Are you comfortable?" He nodded quickly "Don't worry about me, babe. I'm getting taken care of." His voice was soft now, the power that used to be behind it lost to all the damage CF had done to his body. Even now, it couldn't break his spirit. It couldn't make him lose his smile.
I took him in my arms and rested his head on my shoulder. It was my faovrite way to sit with him when he felt sick. We talked a little about what Ahava had done and said that day, all the people that had gone in and out, coming to say goodbye to Ry. As he slipped into a gentle sleep, aided by the morphine that was easing his journey, I sat and took in every bit of him I could. His scent, the feel of his soft cheek, his gentle curls sticking every which way. As I sat, listening to the oxygen whisper into his useless lungs, I swear I saw an hourglass out of the corner of my eye, mocking me.
May 4th, 2005
Ry was obviously so much weaker when I laid eyes on him that morning. I knew the time was coming ever closer, like standing on a train track and the light getting brighter, train whistling, but you're frozen in your place.
I held him, playing with his hair and occasionally glancing up at the TV. The days went by so fast now, I struggled to hold on to every instant I got by Ry's side. I wasn't even sure of how I felt about it. I wanted him to finally be free of a body that no longer obeyed him, no longer respected him. But in my selfish heart, I longed for him to stay with me. I knew it was a selfish desire, and a wrong one, to keep him with me, but I loved him. Of course, that's also how I could let him go.
The fevers didn't seem to bother him, I think they bothered me more. I kept his forehead wiped with a cool cloth, but I wished I could do more to help him. He constantly reassured me that he was fine. Every time he woke up, he told me loved me, and I would respond in kind and gently kiss him. Every time he fell back to sleep, I wondered if his soft eyes would ever open for me again.
Then, around 9 o clock, his eyes opened and he sat up all the way. "I'm hungry." Like nothing in the world was wrong. We, of course rushed around like a bunch of ants on a cracker trying to get something together, even though we knew he wouldn't eat much. While we were cooking, Ry and Ahava, our beloved 4 year old, sat on the couch together, speaking in hushed tones. I knew Ry was telling Ahava he was going to die very soon, and my heart ached to see the hurt expression on her face. God, I prayed she understood her Aba would never leave her by choice. His mother Hannah served up dinner, and I brought a glass fo wine out to the living room for Ry. He smiled. "Smart woman. Nothing like booze to lighten the mood." We all watched carefully as he took a drink, and a bite of food. He looked up at us, watching him, and set down his fork. 'I know I'm dying, but do you all have to be buzzards?" tension broken. His specialty. What could we do but laugh? and we all sat down, adn enjoyed our last family meal, which he ate little of, but seemed to enjoy what he did have.
A half an hour later, he got sleepy, and quietly drifted off to dreamland. Darius, my brother in law, shook my shoulder around midnight, I was getting tired. "Go lay down, I'll get you if he gets worse or anything. "Worse? I thought. If he gets anyworse, he'll be dead. But I obliged, and laid down as May the 4th finished....and May the 5th began
May 5th, 2005
I awoke to someone shaking my shoulder, 2 hours later. Darius' voice reached my ears through the fog. "Allie. Allie, wake up" A million thoughts ran through my head as I woke up. Oh god, Ry. Did he die while I was sleeping? Oh no I looked up at Ry, laying on the couch, He was awake. That's why Darius woke me up.
He was pale and ashen, the tip of his nose, and the edge of his lips were blue. I kissed his forehead gently. "I love you so much. Are you okay? Not hurting or anything?" he shook his head weakly. I had never seen him so bad, I didn't know it was possible to live like that. I wiped the sweat from his brow, and he mouthed "I love you." I almost broke into tears, him using all of his energy to tell me that. "I love you too, baby. So, so much." I gently moved him so I could hold him, his head on my shoulder, and told him to go to sleep, it was okay. He nestled his head comfortably on my shoulder, and softly whispered to me "I love you...I'm tired...I'm okay" and he closed his great brown eyes, and drifted off to sleep.
His breathing worsened dramatically over the next few hours. Family gathered close, waiting for the moment when he could no longer draw a breath. I closed my eyes and struggled as I listened to it, weak and raspy and irregular. He looked calm and unruffled, peaceful, and it was the only thing that calmed me. a few hours later, his eyes opened, just enough to look at us all, taking attendance, no doubt. He seemed satisfied, and gave in to his heavy lids, never to open his eyes again.
I wondered how his breathing could be supporting life. It seemed so little, so weak, unable of oxygenating an ant. I continued to ask our nurse nervously if he was comfortable, and she reassured me that he was okay. I stroked his hair and spoke to him softly, telling him how much I loved him, and how wonderful he ewas, but it was okay, he could go whenever he was ready. As the sun broke over the earth like an egg's yolk, he paused, like a million times before but something was different. He took 3 shallow, short breths, like the rapids in a stream, and then, he gave a long sigh, and I knew it was his last. I held him close to me, whispering everything I had felt for him over these years as quickly as I could. a minute later, our nurse, tears in her eyes, told me "It's over. He's gone."
5:58 am. And so began the longest night.