The End of Her Days
I’m sharing this part of my life because I don’t want to forget it. And I know that Mom would have shared it too.
Over Christmas, Mom had been taking a new drug that was keeping her numbers stable and allowed her to have more energy. We had a wonderful time as a family that Christmas. I wish I had known it was going to be our last. I think we all thought it might. But we had such hope and she was feeling so well.
At the end of the holidays the drug stopped working. She began taking a new medication that seemed to have more severe side effects. We hoped it would slow the onslaught of white blood cells until she could be allowed into a drug trial. The trial ended up falling through at the last minute. In that dark moment, another trial arose, this one in New York, that seemed like it would be an even better fit for Mom. Mom and Dad made arrangements to fly to NYC to get her evaluated and see if she could be admitted. By this time, Mom began to be in significant amounts of pain.
The pain was nothing like we’d seen before. At first it was in her arm. No biggie. Maybe just a side effect of the drug. Or maybe one of growths that appeared on her body throughout her disease. The arm pain went away and then settled in her legs. She had a hard time flying to NYC because of the pain she was in. But she made it. When they got home on Thursday night I went over. Mom was moaning and yelling constantly. The pain medications didn’t seem to be working. February 7, 2020, Friday morning, Dad took her to Huntsman, and they admitted her. This was Clementine’s 3rd birthday.
Saturday was the day of the party. Mom and I had planned it together. Mom loved birthday parties. It was a jungle party with a scavenger hunt that we had brainstormed together. She bought jungle hats and party favors that arrived in the mail the week before. I realized it was extremely unlikely that Mom would be back from the hospital to attend the party. I decorated their house alone with both Mom and Dad gone. Dad came back in time for the party and the other guests arrived. Everything went very well. I remember looking around the room and wondering if I was looking into my future. Having parties and events without my mom there. Mom sent Clementine a video message singing her “Happy Birthday.” It’s the last video I have of her.
Dad had told me that Mom was feeling a little better and seemed in good spirits and that I should call her while she was at Huntsman. I didn’t get around to calling her until Sunday, late at night, around 9pm. I don’t remember what we talked about. But John told me later that he remembered that it seemed like a particularly good conversation. One that was full of expressed love. I’ll have to take his word for it because I don’t remember saying “I love you” to her.
I think she came home on Tuesday because I remember going up to visit her before they left for NYC and they left Wednesday morning. She was not howling in pain, but she clearly was not comfortable. She could hardly leave her chair because of the pain in her legs, but before we left her that night, she made the effort to get out of the chair and watch the girls do the birthday scavenger hunt again. She loved them so much. I could see how happy she was watching their happiness. But the physical exertion was exhausting for her. Her oxygen levels had been low, so she was on oxygen at this point. I didn’t hug her or even say goodbye when I left because she had already fallen asleep in the recliner. I remember telling dad that I was worried. That she didn’t look “right.” And we had seen her through some awful times of illness. But some reason, she looked different to me. It was the last time I would see her conscience and it was the last time my children would see her.
Her NYC trip was supposed to last Wednesday to Friday. Arrive on Wednesday, take the drug and be monitored Thursday, fly back Friday. Amanda was coming to visit on Friday (February 14th). Mom managed to get through the plane flight to NYC. On Thursday, with her WBC on the rise and Mom’s extreme pain, the hospital in NYC decided to admit her instead of sending her home. According to Dad she was very loopy, not acting normally, and looked bad. She had been so upset that she had explosive diarrhea in her pants. Dad told me this story over speaker phone. Mom was listening as he related this to me. I said, “Mom, how could you poop your pants!?” She said, “It was easy! I just went plllbbbttt.” Still making jokes. And it was the last thing we said to each other.
On Friday Mom did not improve and Saturday she looked worse. Her WBC was increasing dramatically, and she was less lucid. I think it was this day that, while I was on the phone with Dad, I asked if I could speak to Mom. Dad leaned over and asked Mom if she wanted to speak to me but she said “no” and continued to howl in pain. I wish I had insisted. By Sunday she was delirious and was barely recognizing Dad. On Monday, they decided to do a procedure to see if they could lower her WBC. It didn’t help. Her kidneys seemed to be failing and it was on Monday they put her under sedation and on a ventilator. Dad and I talked, and we decided that I should fly out to NYC, either to keep Dad company, or to keep Mom company, so Dad could go home and get some new clothes. I drove up to their house on Monday to get one of their suitcases and pick up some more clothes for Dad and a few things for Mom. I remember walking into their empty home and feeling the wave crash all over me. I walked straight into Mom’s study and fell on the floor and screamed. I screamed so loud. I yelled and stomped and pounded the floor. I sat at her computer desk and looked at my reflection in her monitor screen and thought about how I would never see her face reflected there ever again.
On Tuesday, the day my flight was leaving, it was clear that Mom was doing very poorly. After we all talked Amanda and Crystal also got last minute flights to NYC. I had planned on Marti taking me to the airport but at the last minute decided I really wanted John to drop me off. We talked about Mom the whole way. Everything we admired about her and what we could do to honor her. It was a wonderful conversation. I had a long time to wait at the airport, but it was oddly comforting to be around regular people and see their normal lives. Talk of COVID19 was around and a handful of people were wearing masks at the airport. In front of other people, I had to keep it together, but I cried a lot on the plane flight and worried about what those sitting next to me must be thinking. Crystal arrived in NYC before I did. I was able to get Facebook messenger on the plane. At one-point Mom’s BP dropped so low that they almost lost her. I was terrified she would die before I could get there. Bishop Shippen surprised us all by flying to NYC. I got to NYC late and Amanda and I met at the airport. We took an Uber and met up with Crystal at the hotel. Mom had survived the day.
After about 4 hours of sleep we woke up and met in the lobby for breakfast. I think we had McDonalds that morning. We had to move to an AirBnB to accommodate us all. They were not ready for us to check in, so we had to leave our luggage in the lobby of a NYC apartment building and trust in the goodwill of the other tenants. Dad and I had originally booked this place thinking it would be for just him, or him and me, or him and Mandy. When we finally did get inside, we could see it was quite snug. A Manhattan ward had generously found an air mattress we were able to borrow. Dad had the double bed and in the same room Crystal slept on the floor with the air mattress in a pile of fitted sheets and towels. Amanda and I shared the pull-out bed inside the couch that was in the kitchen. It was a joke that this place “would have been perfect for 2 people.” That was all it was intended to accommodate. It was just supposed to be Dad and me there. I was only supposed to be in New York to support him for a few days while Mom got better and could go home.
We got to the hospital at about 9:30 am on Wednesday February 19th. She looked so unlike herself. Her body was bloated because of all the excess fluid being pumped into her and it had nowhere to go. But because she was ventilated her chest moved up and down with the pumping of the machine. It almost made you feel like she was just sleeping. We finally were able to sit down with the doctors. They told us that there was nothing they could do and there was no hope of recovery. Her body was irreparably damaged. It was up to us what to do next. We went back to Mom. We were finally allowed to be in her room without gowns, gloves, and masks. I was so happy to touch her skin to skin. We took turns giving her scalp massages. I brought a ukulele with me and Amanda brought some music. The hospital staff also brought a guitar, small piano, and lap harp. We played and sang all afternoon to our mother. The person who had brought music into our lives. It was the hardest music I’ve ever had to perform. We sang choir numbers, we sang hymns, but most of all we sang folk music. The music that Mom had brought into our lives. On video call with John, we sang “Wagon Wheel” to her. We had hoped to perform it last summer before she got sick. We sang “I’ll Fly Away” and “Will the Circle Be Unbroken.”
When evening came, we decided we’d return in the morning to say our last goodbyes and then take her off the life support in the afternoon. But she had had a few close calls during our afternoon together. So, just in case, we all took some time alone with her to say goodbye. I remember not taking very long. I told her I loved her. And that I would miss her so much. And I held her hand and kissed her and said I’d see her in the morning.
The Bishop suggested we go get a treat. We all decided to get ice cream in honor of mom. She loved a good ice cream float. We ate our frozen yogurts and talked about her. It was late, but Amanda and I went to the grocery store to get some food while Dad and Crystal stayed in the AirBnB. I remember feeling so weird that night. Walking in NYC at 9pm in a grocery store with my younger sister. We wandered up and down the aisles. I remember at one point a song came on over the store stereo and we started dancing in the aisles and laughed together. Trying to remove ourselves from this nightmare. When we got back Dad and Crystal were already asleep. I envied them. We woke them up and stuffed our faces on some of Mom’s favorite snack foods. I don’t think I was able to fall asleep until 2 am.
We woke Thursday February 20th and ate breakfast and got dressed mostly silently. As we were getting dressed, I told Dad that I didn’t think we should wait until the afternoon to remove Mom from life support. We should just do it as soon as we got there. He agreed. We all knew what was going to happen. As soon as we were all ready to go, we all knelt in prayer together. Dad said the prayer and told Mom that we were ready to say goodbye and that she could leave us now. We walked out of the apartment on the busy streets of New York. We were close enough to the hospital that we didn’t need a ride. I remember the day was sunny outside and the weather seemed warm for February though we still all wore heavy coats. As we were walking, Dad got a call on his phone. It was the hospital. Mom had died. We wept on the street corner in a family hug. I texted John (I knew he’d likely still be asleep). Dad asked what time she died. She had died at 9:30am, the exact time we had knelt in prayer. We saw this as a tender mercy during a horrible time. Even though we knew there was no hope of recovery, removing our mother from life support felt like we were causing her death. We felt like she passed on her own and she didn’t leave Dad with the burden of feeling like he’d given up on her.
We rushed to the hospital to see her body. They had quickly removed all the machines that she had been attached to yesterday, but you could still see the marks on her face from the ventilator and her body was still very swollen. I grabbed her hand and it was still warm. But she was gone, and we felt it. We cried and cried and cried. We made phone calls and texts to family. Someone from the Eldersburg Ward in Maryland called me randomly to ask about Mom only moments after we got there. The bishop was very helpful at this point because he was the one who started getting all the practical things together. What kind of documentation we’d need to get her body home, death certificates, etc. He did all the phone calls while we just sat there. I can’t remember how long we stayed but it didn’t feel very long. Before we left the three of us gathered around her body and sang “Go to Sleep Little Baby.” And then we left. We had to take her suitcase with us. It had all her clothes that she had packed. Her purse. Her phone. Her tablet. Her stuffed animal Judy Hopps. The hospital staff had put her wedding ring inside.
I can’t remember what we did next exactly. But I we somehow ended up back at the apartment. The Bishop was asking us all about Mom and getting us to talk about her. It was very thoughtful and so appropriate. We wanted to talk about her. He asked what Mom would like us to be doing now and it came up that if Mom were there, she’d be taking this chance to see New York a bit more. It was Thursday and we didn’t have flights home until Saturday morning. So, we got tickets to Hamilton that night and made reservations at a restaurant near Times Square. It felt so weird. Walking around the city doing tourist things on the day your Mom died. But for me it was better than the alternative which was staying inside. I can’t tell if it was disrespectful or respectful to her memory. We felt so mixed. We stopped at stores at Times Square and occasionally lingered. Just looking at people. I felt jealous of their normal lives. At the Disney Store, in memory of Mom, Dad bought stuffed animals for his grandchildren. It was something she would have done.
I remember thinking how if Mom were with us, we wouldn’t be able to do this kind of touring. She had been extremely sick and not able to walk far without getting exhausted. In fact, it had been over a year since she’d had that kind of strength. But the Mom I grew up with had no loss of energy. She wouldn’t have stopped. I enjoyed Hamilton, but I don’t think Dad liked it very much. We agreed that Mom probably wouldn’t have liked it either, but she would have enjoyed seeing it just to talk about it with other people.
The next day, we decided to go on a walk through Central Park. It was still winter, but we found a spot that had all the trees labeled and we knew Mom would have loved looking at and identifying the trees. Afterwards, we went to the American Museum, mostly for me, but Mom loved a good museum visit. We spent a long time there. We even left and had lunch at a deli and then went back inside to look at more. At one point we stopped and sat on a bench for a long time. I think it was an exhibit about volcanoes or rocks. We cried on the bench and talked about Mom. About how much we missed her. About how much we wouldn’t miss the cancer. About how she wasn’t in pain anymore. About what went wrong when she got to New York. About our memories. I made everyone walk through the whole museum even though at the end it wasn’t even about looking at the exhibits. It was just about walking through the whole thing. Because we had nothing else to do. Nothing else we wanted to think about. Nothing.
The next morning Dad and Crystal had a flight home together and Mandy and I had flights that left at similar times from a different airport. It was oddly dreamlike being around so many people. The pain was intense but being alone and surrounded by others was tolerable for a time. Getting back to Utah was a crush of reality. Seeing John again, and my children. My children that would likely not remember this amazing woman who loved them so much. She was gone. And I hated this new life. Hated what it meant I would have to live with and without.
