UP

This is my first attempt at writing in a couple of months so please forgive the rusty prose. I’m trying to find my muse and it’s harder these days. She’s still around but not at my beck and call as she once was.

I have no doubt the last-ditch effort with immunotherapy sped her decline. It was expected — or rather we were warned. Nothing could have prepared us for the rapid fall from her already weakened state.

Routines changed. She could no longer navigate the stairs comfortably on her own and for the last two months I helped her, nearly carrying her down the stairs in the morning to her office/weaving studio (for the past year, her tv/day/visit room), and every evening I helped her back up the stairs to our bed. In the last six weeks, she would pause halfway to catch her breath.

There were embarrassing moments for her, like when she was first sick, before we knew it was cancer, before she began treatments. So independent and never wanting to be a burden, she struggled to manage her “private” business as she always had until she finally, with tears in her eyes said “I’m sorry. I need help.”

It always broke my heart when she worried about being a burden. There was no burden she could create that I wasn’t willing to carry. But she had a lot to prove to herself and she fought every day.

In the last month she one morning asked if I could bring breakfast to her in bed. “I can’t face those stairs this morning,” she said. “I’ll feel better tomorrow.”

I smiled. “Absolutely no problem, sweet baby. Back in a flash.” Then after turning to go downstairs I started to cry again. As long as she was fighting, she didn’t need to see my tears.

Getting up to use the bathroom was abandoned in the last three weeks. She got weaker, ate less and less until her meals consisted of a bite or two of several options I’d bring her. And worse, no matter how much she drank, none was passing. But her abdomen and legs continued to swell even as we discontinued immunotherapy.

She found it increasingly difficult to sit up and shifted constantly, sitting, lying, this side, the other side, up on the edge of the bed… and in the last three weeks she couldn’t do it on her own. I taught her a neat trick; I’d lean over her and say, “Give me a hug.” She’d smile and put her arms around me, grasping with one hand the wrist of the other. I could then easily move her up, slide her back, or forward.

That became her game over the next several days. “Hug” was code for up. And as the morphine flipped her sleep schedule, the majority of her restlessness and fidgeting came at night. A 3am “Up” or “Hug” broke me out of the few hours I managed to get between her medication doses every 4 hours.

I’m ashamed to admit it became frustrating a few times. I never got short with her but I tried to explain that sitting up made it harder for her to breathe, and waking me from the three or four short naps I got a day only made me weaker. I collapsed into tears when she said “I’m sorry.”

I immediately got up, filled with remorse, to help her rise. She smiled and said “Hug”, clasping her hands together before I’d even bent over. I put her arms around me and lifted. Her discomfort was immediate–her backbone aching and her chest compressed from the growing inflammation in her abdomen. She wanted down instantly.

I realize that my complaint about broken sleep led to her sitting up on her own the next night. It led to a cleanliness problem and required a linen change at 2 am. “I’m so sorry,” she kept saying.

“It’s okay, sweet baby. It’s not your fault. I’ve got it,” I said as I rolled her to the side and changed the sheets of our queen-sized bed the second time that day. Her moans of discomfort as I rolled her broke my heart and I failed to keep the tears at bay. Seeing me cry only made her proclaim more insistently “I’m sorry, carebear.”

Wednesday night she woke me at 3am again, almost in a panic. “Carebear, I’m not letting go. Don’t worry.”

With doubtful tears I smiled at her. “I don’t want you to. You’re my strong girl. You’re the best person I’ve ever known. Stay as long as you want and can. I’ve got you… all the time… every day.”

She smiled and settled back down to sleep.

Thursday was the last time she spoke to me. I rubbed her short hair. The hair she was so proud of that had come back so quickly after the chemo had ended. I filmed it, hoping for a response. “I love you,” I whispered as she faded in and out of watching The Marvelous Mrs. Maisel which she had watched on loop three times over the past few weeks. She turned to me with remarkable clarity and said “I love you too.”

Shortly after that she slept, and slept through the night. She didn’t even wake when I gave her four hour medication to her. She slept all day Friday, through the visits of her best friends, and slept through the night without movement a second night in a row. Our children, who had been coming over with increasing frequency, gathered and sat in the bedroom, only leaving when dad had to clean something up or change the sheets.

Saturday came and her breathing became ragged… that rattle. I couldn’t stop crying. At the end of the day I medicated her at 9 pm, switched from Mrs. Maisel to the 9 Hour thunderstorm program, and turned out the lights.

At 11:09 pm she stirred. It was the first time she had stirred in two days. I rolled over and kissed her cheek, grasped her hand, and then closed my eyes again for the two hours before her next dose at 1:00 am.

“Up”, she said.

I went around to her side of the bed to find her already clasping one wrist with her other hand. I looped her arms around my neck and lifted.

“Bathroom.”

“Are you sure, baby?”

A firm nod was all I needed. I’d spent years witnessing this amazing woman’s resolve. I’d never seen her not do a thing she had put her best effort into.

With unsteady steps and me walking behind, holding her arms, she wobbled from one foot then to the other, slow step after slow step, to the bathroom. I helped ease her down and she placed her elbows on her knees as she sat. “Privacy,” she said with a grin.

After a few moments the bathroom door opened and she walked slowly but steadily back to the bed. This time I held only one elbow to steady her.

She collapsed into bed and breathed out in a whoosh. “Around the corner.” she said optimistically after a moment. Then closed her eyes.

I tucked her in and returned to where I had been prior to her miracle walk, by her side, her hand in mine.

At 1:00 am the medication alarm went off and I opened my eyes. In the dull light of the 9 hour thunderstorm program I saw her chest no longer rose and fell, no longer did her rattle vibrate in her throat and chest… just as it had been at 11:09 when she’d stirred.

I’d known it before I fell back to sleep. I’d known laying my cheek on hers, still warm. She had never said “up”. She had never gotten out of bed, or gone to the bathroom, or said “around the corner”… nowhere but in my dream. She had passed at 11:09. I believe with all my heart and soul that she brought that last hour and fifty minutes of rest, that sweet dream, that moment of normalcy as a gift before it all came crashing down on me. It had been so vivid that it had produced real peace in my chest… Until I woke.

I cried as I cleaned her up, trying to stifle my sobs so as not to wake the kids until she wore clean pajamas, in a clean bed, with clean skin that smelled of watermelon soap. I know it’s what she would have wanted.

I laid next to her for another hour after that before calling the oldest daughter in DC, then the youngest daughter in the next room, and finally our son, who was already up having figured out what the activity in the house meant.

I stayed by her until “they” came to take her away at 7 am. It would be the last time I saw her.

For almost twenty years she would ask, like a little girl who needed to be reassured, “Do you love me?”

And for almost twenty years my response, with ever-increasing sincerity and passion would be “I love you more than my own life.” I’ve forgotten how to have another reason to live. I’ve forgotten what it was like not to be needed 24 hours a day. I’ve forgotten, sometimes, how to breathe without my sweet girl in my life.

Be careful looking for love that means more than your own life. It leaves you without purpose if it departs before you. The only bright side to this arrangement, for me, is that for her to go first means she doesn’t have to suffer that loss. My last gift to her… bearing the grief until we meet again at the lighthouse on Ocracoke.

Good night sweet baby. Thank you for being my girl.

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