A seismic shift. That’s the best description of the last twelve months I can come up with. It simultaneously contained the event I’d been most afraid of for my entire life and, on the opposite end of the spectrum, the moment I’d been fighting to arrive at for fifteen years. At the end of every year I look back and say that it was a “year of change.” Our lives are constant change, so saying that 2018 was a year of change would perhaps just be stating the obvious. This wasn’t a year like that, though. This wasn’t the mild tremors of normal life. This was the earthquake you have drills to prepare for – “Drop, Cover, And Hold On!” This was the year you talk about forever. The year it no longer was as it used to be.
January will be remembered in my mind as the last family adventure and the blessing that I’ll never be able to feel grateful enough for. Mom had been quite sick during the fall of 2017. We got the first inkling that we didn’t have a large amount of time left with her. When she recovered and was well enough to go on a last minute family vacation to Florida, I was aware that this would end up being a significant experience. We spent a week in Captiva, sitting on the beach watching the sun rise and set. In each moment I was as present as I could be, trying to take it all in. This would never happen again. Soon, though at the time I didn’t know just how soon, I wouldn’t get the chance to pick through shells in the sand with my mom. Soon I wouldn’t be able to see her or hear her voice.
I began working through my remaining coursework for Iowa State University, still trying to wrap up my bachelors degree that had begun to fade into the background when my husband’s grandmother, and then a former student, and then my father all passed away in quick succession. It was a slow process, but in a flash it was March and the to do list was looming large overhead. And then it happened. A phone call from my sister saying that Mom was in the hospital. I knew I needed to put everything on hold and head to Wisconsin — but how much to pack? There was no way of knowing how serious things were or how long I’d need to be gone. I felt somehow that I should prepare to be gone for a long while. I threw the majority of my wardrobe into my car and drove northeast towards my hometown. It was March 23rd. I would call Wisconsin my home again until May 8th.
******** If, for some reason, you wish to bypass the portion of this year that deals with the specifics of my mother’s death – if this is a trigger of some kind or you simply just do not wish to know, you can skip ahead to the section below the second divider.********
Mom was moved to hospice on March 25th. We officially knew that she would never, unlike the handful of other times, recover from this episode. The cancer had spread and there was nothing they could do but stabilize her and make her as comfortable as possible. She asked over and over again if she could go home and we desperately wanted to make it happen. We tried. We thought we were headed that direction on numerous occasions but she never got well enough for us to be able to handle caring for her without substantial outside assistance. My sister took a leave from work. My brother was there as much as he could be in the beginning and then took time away from work, too. Our family stepped up and filled in the tiny gaps so we could get some food or step out to breathe for a minute. There was someone at her side day and night. Five weeks of ups and downs. New medications, new complications. Meetings with hospice staff and, in my pragmatic mental state after reading “From Here to Eternity: Traveling the World to Find the Good Death” by Caitlin Doughty, with the funeral home to begin preparations for the end. My sister and I had Easter dinner together in the hospice cafeteria. I had a rare few minutes alone with Mom that night and that’s when it sunk in what was happening. I’ll never think about Easter the same way again.
I hesitantly drove back to Iowa twice during those seemingly endless weeks of waiting. I didn’t want to be away if something happened. I didn’t want to abandon my mom when she “needed” me the most. Her condition fluctuated but never worsened so much that it seemed the end was imminent. The hospice staff couldn’t believe how strong she was. She should have been in so much pain. She should have gotten so much weaker so much faster. Just like her mother, she wasn’t ready yet and it seemed as though there was nothing that could make her give in and let go. As we approached the one year anniversary of my dad’s death on April 19th, we wondered if she realized what day it was and what that meant. The day passed without a noticeable impact. I missed him and found myself thinking back to his funeral. It was my concern for Mom that made that day so difficult. Watching her go through one of the most difficult experiences of her life while simultaneously enduring chemotherapy treatments gave me an immense feeling of helplessness. All I could do was be there, loving her. That would return as my one and only job in her last weeks. How could I not fulfill my single responsibility?
I was only gone for about 55 hours the first time I headed back to Iowa. It was about 47 hours the second time. I returned that final time on April 29th and the next day there was a drastic change in Mom’s ability to breathe. It became shallower, shorter, louder. The worst sound. Part of me wanted to stay the night because it felt like she couldn’t possibly carry on like this for long. Part of me was emotionally exhausted from sitting next to her and hearing her strained breathing all day, wanting to get some sleep in a real bed. I took the risk and opted to rest back at the house for a while. I woke up to a phone call from my sister just after 3am. I think she didn’t want to say the actual words. I don’t know that she physically could have if she had wanted to. I remember hearing something about her breathing changing drastically and me needing to get to there quickly. I knew that Mom was already gone but those specific words never came through the phone. I don’t remember any more of the conversation, just the sound of my sister’s voice. The pain.
When I arrived at hospice the tears were in my siblings eyes and I noticed the lack of sounds in the room. I walked over to the bed and Mom was silent. I don’t know if peaceful is the right word, but she finally looked like she wasn’t suffering anymore. I realized that I was standing there waiting for her next breath. Did someone say she was actually gone? Did I miss that part? Maybe she’s just quieter than before? I waited but nothing came. My mother was still in the room but she was no longer there with me. I sat next to my brother and sister and hugged them. This was it. In the movies it’s always a big moment. There are tearful bedside confessions of love, climactic scenes filled with family, dramatic exclamation points. In real life, I was asleep in my mom’s old bedroom at 3am and then I was on the phone with my sister at 3:05, and then I was driving at 3:20, and then I was sitting next to my mom’s body at 3:50 wondering what was supposed to happen next.
What happened next was more waiting. We allowed some time for some family to show up. As they processed their grief, we stood by in a haze trying to grapple with our own. Already, decisions had to be made and questions needed to be answered. Did we want to do the hospice processional? What song would we like to play? What time? Is everyone here who needs to be? How much time to we have before we need to transport to the funeral home? When do we clear our stuff out of the room? Why am I not crying? The processional started about 7am. It was real, for the first time. They shut the back of the hearse, separating me from my mother, and the lever holding back my sputtering tears flipped. The flood had arrived.
We packed everything up and left hospice for the very last time. I felt some of the most intense gratitude and appreciation that I’d ever felt in my life for everyone we had encountered on this journey. The doctors, nurses and staff that had been so kind and generous. We had been surrounded by some incredible human beings and I couldn’t have imagined going through any of what we’d experienced without their light. It was time to take a minute to breathe and to refuel. We got some breakfast. We distracted ourselves. The day before had been just another day at hospice. The next day would be the meeting with the funeral home to set up services and the first full day without her. The day of, the day Mom passed away, was the in-between. It was the furthest thing from normal but the rest of the world kept turning like nothing had happened. The only way to survive was to keep moving.
May 7th was visitation. May 8th was another visitation and the funeral services in the morning. After being “on hold” for 6 weeks, I needed to go back home. I drove back to Iowa that evening. I wondered what life would look like now. What would it be like without her? How would I adjust back into “real life” after being in the hospice bubble for so long? I bought a bunch of plants, especially brightly colored flowers, because if felt like I was keeping her near me. Once Mother’s Day passed, my calendar picked up and distractions were abundant. One of my closest friends got married. The summer marching band kicked into high gear for Memorial Day. Then it was time for all-day rehearsals and performances. My husband and I finally got to see “Hamilton” in Des Moines and then we went on the annual marching band trip to Traverse City, Michigan.
And then, downtown Sun Prairie exploded less than a mile from our rehearsal field because of a gas leak. The kids were distraught. We had to find a way to push on through the final days of our competitive season. It was probably the most challenging teaching situation I’ve ever been in. I had been in the intersection that blew up just hours prior. People I knew had been in some of the leveled buildings just minutes before and had, thankfully, been evacuated just in time. A band kid lost their home. It was one of those situations you never expect because they happen on television but not in “real life.” We’re very rarely prepared for all of the circumstances that come along with moments like this. It never feels as straightforward or as easy as it looks to be when it happens to someone or someplace else. Of course, as with nearly everything else that has happened since the spring, I wondered what Mom would have said and done. It’s impossible not to imagine the situation through what I patch together as her point of view. She would have heard about it and immediately called me. I would have not only processed that moment through my own lens, but through hers, too. That’s the thing about having someone in your life that you know well and love deeply. They are sewn into the fabric of every day. Their thoughts and actions are yours, your thoughts and actions are theirs. Separate beings connected on a sub-surface level. Not only does a loss mean the deceased person cannot physically be with you any longer, but it also means you are fundamentally changed. Part of your vision is gone. It was wide-angle and, suddenly, you’re looking through a fisheye lens.
Life goes on, though, no matter how good your vision. July evaporated and August brought both my parents’ anniversary and my mom’s birthday. We bought flowers and went to a farmer’s market to feel like we were closer to her that day. Then came band camp for the fall marching band I work with. I met with my professors and advisor to get back on track with my degree. We took a trip to DCI Finals in Indianapolis that wound back through Chicago for a few days, and finally up to Wisconsin for a friend’s wedding. We closed out the month with a weekend in the Twin Cities, attending our first NFL game as spectators (Seahawks/Vikings), and hanging out with a friend.
September was the beginning of the “color guard blur” that happens during the fall. The daily rehearsals, meetings, choreography writings sessions, drill re-writing, planning and fixing, and weekend performances seemed to have a monopoly on my attention. I tried, quite unsuccessfully, to double down on homework. A few of us in the band family honored our former student who took his life last year by participating in the “Out of the Darkness” walk in Ankeny. The band kept getting better. In October, the last few performances took place and my brother and sister made the trip down to watch and visit. It had been difficult getting through the first summer marching band season without my mom considering she was the reason I first fell in love with band as child, and that she was always there in the stands or on the sideline of the rehearsal field cheering me and, later, my students on. My biggest fan. If you were within earshot of my mother at a show you knew exactly who I was because she would make sure to point me out and tell you how proud she was. There were many moments when I found myself searching the faces in the crowd looking for hers throughout the summer. Having my brother and sister down in Iowa this fall felt different, though. Their presence in my little part of the universe without her made the absence that much larger, more real. We had, just one year prior, been in the giant elevator of the Des Moines Art Center taking a selfie during our break between the day and night performances. This time the quintet was only a quartet. We had a great time drinking apple cider and eating doughnuts, laughing and smiling about random silly things, but there were no selfies. No giant elevators. No teary-eyed mom rushing to give me a hug and say how wonderful my kids’ performance had been. Still, the choice to keep moving forward was the only one that really made any sense. So we went on.
I voted early for the midterm election, had some friends over for a Halloween get-together (which was a first), began rehearsals for winter guard, saw a musical (“Love Never Dies”) and went to a concert (Colony House with New Respects). November was filled with finishing and cleaning up the winter guard show, rehearsal for the Disney parade, another musical (“Aladdin”), another concert (Jon Mclaughlin & Matt Wertz with Scott Mulvahill), a trip back to Indianapolis for BOA, and then on the last day of the month, the ISDTA Championships for winter guard. We took a big risk and struggled to get the show to come together in the last couple of weeks but the kids pulled it off. They got their 4th-straight state championship and were given a special “Judges Choice” award which had been something I’d been striving for but never thought I would ever achieve. In such a dark year I am grateful for the people that made getting out of bed worthwhile. The kids in that group had such impressive attitudes and work ethics. They were a special bunch and I’ll never forget what we experienced together.
That brings us to December. It was the final push for finishing my degree and somehow I managed to get everything completed in time. While the transcripts don’t officially show it yet, I have now graduated with a degree in Apparel, Merchandising & Design. I had been in and out of classes, in two different community colleges and two different universities, for 15 years. This was the one big thing I needed to achieve. It was a bittersweet moment. Without participating in graduation, there was no fanfare. The punctuation mark at the end of this incredibly long sentence was more ellipsis than exclamation point. It felt like an empty achievement without my mom here. Up until the day that she could no longer speak, she was asking how school was going and why I wasn’t busy working on my homework. She would wake up and say hello and then check in on my progress before falling back to sleep. I didn’t have the heart to tell her that I tried working when I first arrived back in Wisconsin but I’d since mostly given up because it was impossible to focus on anything for a long enough period of time. Try forcing yourself to fight through a stubborn math assignment that you don’t understand while your mom is dying next to you. I needed to be in that room — not in my textbook. But, I did it. I finally finished what I had started all those years ago. She would have been over the moon. She would have told strangers at the grocery store about it. It would have been one of the greatest moments for both of us. I’ll have to settle for that version of things in my mind. I know that she was proud of me and I know that she loved me. I can imagine what it would have been like so, in a sense, it’s like she’s still with me.
It has been a year of framing things in relation to an illness and a death. I can imagine that people have long since tired of hearing me speak about how much I miss my mom and how different things are without her. I’ve tried reducing my social media posts, holding back much of what I would have shared because I wanted to avoid becoming obnoxious. We all follow people who can’t seem to understand the concept of moderation. We never want to be the guy who doesn’t know when to keep things to himself. What I realized, though, after reading Joan Didion’s “The Year of Magical Thinking,” is that what I’ve been going through isn’t abnormal. This insistent presence of loss and change is part of a lifelong healing process. I shouldn’t feel the need to hold in what I’m feeling. By speaking about her I not only keep her alive, in a way, but I also help myself come to terms with this new life I need to live. This life without. This life that is no longer as it used to be.
Snapshots of a Static Life 