dammit! (getting through the night together)

From Jodi

The same memory of Caemon keeps playing over in my head. I’ve tried to move past it and write about other topics, but it seems this particular story demands to be written before I do anything else. This memory is about a night that Caemon and I spent in the hospital and how we got through the night together. To understand it and appreciate it for the triumph it was, a little back story is necessary.

Transitioning to life in the hospital was demanding and exhausting in every way imaginable. Things had to be sacrificed or at least placed on hold, like Timaree’s emerging doula career. We lost half our income when Timaree went on unpaid leave to care for Caemon full time, but we could not afford for both of us to be unemployed, so I kept teaching, commuting back and forth, and occasionally sleeping at our house in Santa Rosa. This necessity caused a huge rift in my relationship with Caemon, who was mad at me for a very long time. He never really said why exactly, though those around us theorized that because of his very scary and stressful situation, he needed someone or something to direct his anger at, and I was a safe choice. Part of me understood, but it hurt just the same. I would hurry back to the hospital as fast as humanly possible, breaking multiple traffic laws in the process, only to be met with “I don’t want Mamma!” as soon as I walked through the door. It broke my heart. I brought things to please him, familiar items from home or treats from the store. This bought his approval for a short time, but as soon as I would establish some routine and trust with him, I had to leave again. On top of this, I had to play the heavy and get him to do things he didn’t want to, like take his meds and go back to his room after playing in the hall. After a time, I refused to do things and stepped out of his room during stressful procedures. I didn’t want to be tagged as the mean mom anymore.

Mid-December 2012, just before Caemon’s Bone Marrow Transplant

I was stressed and tired from my end-of-semester duties but grateful to finally be off work for a while. I could focus all of my attention on Caemon’s transplant and recovery. Timaree and I could continue our routine of sleeping every other night at the family guest house across the street, which, as time went on, became more necessary as we were four months in to an intensely exhausting experience, and life in BMT was multiplying those stressors: more meds meant more machines beeping at night; the transplant regimen required multiple visits from the nurses for lab draws, cultures, boluses, etc. There were nights I did not sleep but instead stood watch, placed cool cloths on his fevered forehead, played his favorite music, and chatted with nurses and docs as they floated in and out all night. Nights away at Family House were the only thing keeping us sane. We could sleep for a short time uninterrupted, take a shower, and return in clean clothes for another 36 hour round.

But Caemon hated this arrangement. It confused him, stressed him out, and caused problems we simply did not need. Nobody liked it, and we were all a bit cranky from the situation, no one more so than Caemon. We didn’t want him to worry about who was going to be sleeping with him that night or who was going away or for how long, but worry he did. Sometimes for hours leading up to sundown, he would start to get agitated, obsessing about it getting dark. That was the case this particular night when it was my turn to sleep with him at the hospital. Timaree, Brie, and I distracted him from his worries with the closest thing we had to a night time routine and waited it out until he fell asleep, and then Timaree left for the night. I fell asleep on the chair bed beside his.

Sometime after midnight, Caemon woke up, rolled over, and saw that it was me with him and not Timaree and shouted “No Mamma!” which startled me awake. I looked at him, blinked hard, and sat up. “I don’t want Mamma here till morning!” he proclaimed and stood up on his bed.

I scrambled out of bed. “Caemon, you need to sit, Baby. Please be careful.” Caemon had pulled this move before in the hospital, standing on his bed in defiance, fed up with his situation and ready to lay down the law. The difference was that now he was much sicker, had fewer platelets, and was attached to many more lines and tubes that could be pulled out. It was dangerous. “I know you’re mad, but please let me lay in bed with you until you fall asleep. Mommy will be back in the morning.” I moved to take his hand, but he jerked it away, stumbled over his massive pile of pillows, and almost toppled backward, but luckily he recovered.

“Noooooo! I want Mommy to come back right noooowwwww,” he yelled.

Oh, it’s going to be like that, I thought. He would fixate on Timaree and not let up, but really, who could blame him? She was his constant; she didn’t leave him for days at a time like me. But I was his mother too, and I wasn’t about to lose his love and trust because of circumstances neither of us could control. First, though, I had to keep him safe. “Caemon, if you don’t sit down, I’m going to have to call the nurse. You’re scaring me.”

He wouldn’t sit, so I hit the call button. I doubt anyone working was surprised. Everyone who was awake probably heard him screaming, and though I tried to calm him by using a soft tone of my own, again I couldn’t be mad at him for yelling. “I understand that you’re mad and sad about Mommy not being here. I’m sad too. I wish we could all be together, Son.” The door opened and Abby walked in. Now how was this for coincidence? This was the same nurse who came to Timaree’s rescue on a very similar occasion with Caemon. She knew what to do without being told. She stood on the other side of the bed, said nothing, and watched. If he stumbled, she was ready; otherwise, she would not intervene.

“Now go get Mommy while the nurse stays here,” Caemon ordered, pointing his finger toward the window toward Family House. I so admired this clever boy who used the nurse’s arrival to his advantage. Still, I wasn’t about to get up in the middle of the night or to wake up my wife.

“I’m sorry, Caemon, I can’t do that. Mommy is sleeping, and . . .”

“Call her and wake her up right nooooowwww!” he yelled, getting even more upset.

“Sweetheart, I can’t, and I won’t. It’s my night to be with you, and as your Mamma, I want to have my nights with you too. It’ll be okay. I promise. We’ll get through the night together.” I looked directly at him, and he knew I was serious. I felt bad for him, and I badly needed sleep, but I also needed Caemon to trust me. After months of being relegated to second-class status, I needed him to let me comfort him.

“I want it to be Mommy’s night tonight and the next night and the other nights. I want Mommy to have alllllllll the nights,” he countered, counting all the nights on his fingers.

“I know you do. I know you wish Mommy was here right now and that we could all be together and not have just one mom at a time. That’s what I wish.” That gave him an idea.

“Get another chair bed from outside and we can all sleep in my room!” he exclaimed, excited that he found a solution, but another chair bed would not fit in this tiny room as it had in previous rooms we had occupied. It wasn’t an option.

“I wish we could, but it won’t fit in this small room.”

“Take me to Family House, then,” he demanded.

“I can’t do that, Son. It’s the middle of the night, and it’s my night. . .”

“I don’t like your clothes. Mommy’s clothes are better.”

Ah, so the stinker thinks that if he’s mean to me, I’ll get angry and leave, and Timaree will have to come back. I tried not to smile. “Tell me something I don’t know.”

Pause

“Dammit!” He swore, and I nodded, affirming his frustration. In fact, there had never been a more appropriate moment or reason for him to use this word. He nailed it.

I waited a moment and then made my pitch: “Look, I can snuggle with you, dance with you, or just lay here and hold your hand, but I can’t wake up Mommy or leave or take you out of the hospital. I so wish I could. How’s this? When you’re better, I promise that I will take you out of this room. We’ll go down that hall, get on the elevator–you can push the buttons that take us downstairs–and we’ll get in our car and drive over the Golden Gate Bridge. We’ll listen to Mumford and Sons all the way, and when we get home, we’ll sleep together in that big bed I bought for us, okay? The whole family will sleep together. Until then, please, let me help you get through this night.” I held out my hand.

“Well, actually. . . ” he paused, “will you dance Jack Johnson’s Sleep through the Static with me?” he asked, finally accepting his circumstances.

“Of course” I responded, relieved and overjoyed.

As I made my way around the bed, Nurse Abby, who hadn’t said a word, mouthed, “Good job,” as she moved out of the way so I could pick him up. He placed his arms around my neck, put his head on my shoulder, and Jack started singing, “All at once, the world can overwhelm you. . .”

 An Epilogue from Timaree

The next morning, Jodi told me the story, which I found both comical and powerful. My wife and son had figured it out together, and while it had been so difficult, they were closer for it. While Caemon would still occasionally fret as sundown drew near, for the most part, he was okay. There was one evening, however, as the lights in the city started to twinkle and the last glimmers of sunlight started to disappear from the bay, Caemon expressed his concerns: “I’m worried that the twinkly lights are coming on. I’m worried that it’s getting dark now. I’m worried it’s going to be night.” He knew I had stayed with him the night before and that tonight would be Jodi’s night, but he tried to change this: “Mommy, I want it to be your night tonight. It’s your night!”

“No, Sweetheart,” I had to explain, “Tonight is my night at Family House, and it’s Mamma’s night to stay with you.”

“But I want it to be your night!” Jodi was in the room, and we all tried to convince him that it would be fine, but then we left it alone and worked on finding something to distract him. After a few minutes of silence, Caemon stood up on his bed. Jodi and I both looked at each other, wondering what would come next. Then, Caemon stretched out his arms, looked at Jodi, and said, “It’s okay, Mamma. We’ll get through the night together.”

They embraced, and we all celebrated in that moment, so proud that Caemon had been able to work through this moment, that he could trust his Mamma, and that despite the circumstances, it was going to be okay. He still had a little stress about whose night it was, but his trust in Jodi had come such a long way.

When Caemon relapsed, there was no question that we would all need to be together, even if that meant sleeping in shifts. Neither Jodi nor I wanted to have to leave or spend another night away from him. Thanks to the creativity and work of some extraordinary people, we all got through the rest of his nights together.

The embedded video is a recording of Jack Johnson’s “All at Once” from his Sleep Through the Static album–the song that Caemon craved when he needed help getting through the night.