I've been thinking a LOT about New Year's Eve from last year (2018). It was a very difficult day. I haven't really shared this with people and it may be hard to read, but I feel like it's important to give people insight into what happened and what we were going through as a family. I feel like it's important to recall the events and talk about what was going on and how I'm feeling about it now. As I'm writing this I can feel my heart flutter in anxiousness. It's hard to allow myself to "go there". But here we go.
Joni's best friend, MaryEllen, had come back up to be with Joni and the family after Christmas. She was staying with Joni in the hospital so I could be with the kids. For New Year's Eve we decided to spend it with Joni. We had made the decision to move her to hospice care and I believed that she was going to make it to Ember's birthday once we got her home and stabilized, but she wouldn't be discharged until 1/2/2019. So I wanted the family to spend what was possibly her last New Year's Eve with her in the hospital.
We arrived before dinner time and it was already dark. We spent some time with Joni, but she was in and out of consciousness because of the medications she was on…and because her body was shutting down. I didn't know it at the time, but I've learned a lot more about the moments leading up to death and that's what was happening. Joni didn't get to open any of her Christmas presents so we brought her a couple special ones. She loved nativity sets so I commissioned an artist to start one based on one of the family's favorite Christmas specials, The Very First Noel. It's a great little CGI production narrated by Andy Griffith and it's super cute. The package had arrived late, but I wanted her to see it in case she wasn't in a state to appreciate it later. She loved it and gave me a hug and kiss.
We went to a local grocery store and bought snacks and sparkling cider and set up in the visitor's room (located conveniently next to her room). The kids brought art projects, phones, tablets, Nintendo DS's, and other things to occupy their time. Sometimes we would hang out in the room with Joni, sometimes just be in the visitor's area. I spent a lot of time talking to MaryEllen, crying with her, crying with Joni, praying for Joni's miraculous recovery, and begging her not to go.
At dinner time, MaryEllen let us go get something to eat since we were hungry and nothing was really happening in the room. We walked a fair distance (no way was I going to pay for parking twice) to get some pho, which the kids had never had, then headed back to the hospital. This year, 2019, Ember suggested that we go into Seattle again, but not near the hospital. I found it interesting that she wanted to visit the city at all, but she was the only one who did. None of the rest of us could stomach the idea of going.
During our visit, when Joni was awake, her sense of time was wonky. She would wonder why we were still there, if she had missed midnight, where the kids were (even though she had just seen them go to the visitor's room), and asked if her family was coming. We had to repeat things several times. It was incredibly hard to see. It felt like seeing someone with dementia or Alzheimer's. It was one of the hardest things I've had to witness in this journey - seeing someone who was so brilliant, so quick, and so witty struggle with simply remembering what day it was or even where she was. I felt small and powerless.
Close to midnight, I poured the cider and served everyone. We made sure Joni was awake to share the toast and the cider. We looked at the incredible view and all cheered and said "GTFO" to 2018 and hoped for a better 2019 while watching Seattle celebrate from Joni's hospital bedside. We gave hugs and kisses then left not too long after midnight. I knew I would be back in the morning to relieve MaryEllen for awhile, talk with the doctors, and make a plan. The palliative care team guessed that she would have about two weeks left, which I painfully shared with the kids. No one could have guessed what the next 72 hours would hold.
Tonight I expect to spend the evening with the family, eating good food, playing Overcooked 2 or Super Mario Party on the Switch, maybe watching something, and maybe recounting some of that night if people want to talk about it. I expect that there will be tears and hearts longing for our friend, wife, and mother. I expect that we won't be the only ones across the country and world wrestling with those feelings and the grief that comes with them. If I am honest, there have been bright spots with each first from 2019. Off the top of my head: no more pain, no more uncertainty of what will happen with Joni, and no more cancer.
In looking back to Joni's final days, I have no idea how we held it together. I marvel at how strong we were and how much support we had. We held onto hope and the miraculous even then. And for 2020, I have new hopes. I have hopes for a year without such dramatic bad news; a year filled with healing and continued growth; a year of new relationships; a year of promises fulfilled; a year of seeing some dreams come true; and a year of helping others heal and get through the hard spots of their lives.
As always, thanks for reading.