Shifting Quicksand & Standing in the Sun
August 2, 2021
After two plus weeks in the hospital in Milwaukee, Joseph came home just ahead of the weekend. It was not a moment too soon. He would hit mile markers just for a random issue to pop up and prevent his release. This back and forth was difficult on morale for all of us. He was so desperately looking forward to being reunited with the kids that it became too hard to allow himself to believe he would ever leave the hospital.
On an especially trying day I accompanied Joseph on a walk through the hospital halls. He worked on building strength and maneuvering a walker and an IV pole. We both worked on staying in the moment and abandoning our instinct to look any further ahead than our very next step.
I led him to the back corner of a waiting room. A small slice of hospital heaven I’d discovered while searching for cell phone reception. I took to retreating to this corner to make calls, put in a few work hours and cry.
I wanted to share with Joseph the place my heart had come to know as home while we were away from home. The late afternoon sun would shine through the window in that corner no matter what had happened that day. With closed eyes and a determined heart, I could almost forget I was in a hospital. For a moment each afternoon I was just a woman in a private corner, standing in the sun. And so, I took him to my corner. I asked him to close his eyes and I watched his face turn upward while he stood in the sun.
When we finally drove out of the hospital and headed north for home it was such a thrill for me to watch him roll his window down and breathe in the fresh summer air.
Joseph and I were both a bit apprehensive about the new normal we would find at home. Coordinating medical care, medical equipment and a new (and ever-shifting) normal has been scary.
We have a home nurse coming a few days a week. Day one at home brought a quick trip to the doctor due to an infection in a surgery site. Friday brought another attempt at chemo and a discussion with the medical team on the difficult reality that Joseph did not do well on the first round of chemo. Being able to handle chemo is essential, so this is a defining week.
We’ve promised our children we will not hide anything from them. The older ones asked some challenging questions over the weekend which were met with heartbreaking answers and conversations that went very late into the night.
The unknown is the common enemy of contentment. A demon both Joseph and I have wrestled with in our lives individually and as a couple. “What if?” has been the soundtrack to my thoughts as I’ve drifted off to sleep each night since I was about five. When the worst of your “what ifs?” happen, you run out of “what ifs?”.
In the past few weeks, we have come to compare the current stage of our life to shifting quicksand. Fighting and flailing over things that cannot be controlled is the thief of life, robbing us of our most precious resources: hope, peace and time. We have embraced a complete abandonment to what is and what will be. Not because we are spiritually evolved but because we do not have a choice. Still, there is a real calmness in that. One that we are truly thankful for. This is an opportunity we didn’t ask for and never would choose for ourselves, but it is still an opportunity. Opportunities aren’t to be wasted.
Abandonment doesn’t mean there aren’t hard moments and days. Right now, the days are all hard. Joseph and I have been praying for the opportunity to attend Mass together as a family. This weekend we were able to do so! While it was beautiful and bonding, it wasn’t perfect. James wore a Batman t-shirt because he dressed himself and I did not check him for a collared shirt and the kids fought all the way to Church. Most of us cried through most of the Mass. The kids bickered while we chatted with families after Mass. A fight at the prayer candles led to the need for me to grab a flaming stick from battling children because if you’ve got kids you know it REALLY matters to God WHO lights which prayer candle. 😊
I rounded out the outing by losing my temper on the way home and gifting everyone with a good old-fashioned Catholic mama guilt trip. I was disappointed in how our Sunday went for about a minute. I then realized it was the exact Sunday for which we had prayed. It was messy, loud and full of family life. It was the most normal day we’ve shared in a while.
Joseph is feeling fairly well, considering. The pressure to make the very most of each and every moment along with the continued demands of daily life is a tightrope we haven’t figured out how to walk. I had to send my brother to drop off the water bill payment this afternoon because I got the “your bill is so late we are going to shut your water off” letter last week and then I promptly forgot about it. I recalled it this afternoon in a moment of panic and fished it out of my purse.
Today we were determined to do something “fun” after appointments and work. While Joseph was feeling the pressure to select something both doable and fun, I hit a wall both physically and emotionally. I found the kids on the front porch crying and comforting one another. Then James told me he was so sad that we are all so sad at the same time. He then asked if he could put his head on my chest because he wanted “his ear to hear my heart.” This brought my tears. I could tell watching us all fall apart was a blow to Joseph, who just kept apologizing for something he did not chose. He is handling this with the grace and beauty of a true witness of suffering. I ended up falling asleep and Joseph played a board game with the kids.
I awoke with my guilt, which is still keeping me company at this late hour. Abandonment is beautiful, but painful. I feel like we’re being torn apart and while I trust we will eventually be put back together, the tearing hurts. I’m also still me, so I cannot help myself from wanting to be BETTER at having my entire life upended and I’m still criticizing myself for the ways in which I am falling short. I appreciate and need all the love and messages I have received and yet I cannot respond to them. I don’t currently have it in me, but please know I want to find it so badly.
I can’t share polished versions of a story I am not the author of. I’m an all or nothing kind of sharer. It is the curse of a writer. Joseph is adamant his suffering is a calling he must embraces fully. To honor that I want to share my heart fully. These updates are the best way I know how to do that so thank you for your understanding and your support and prayers. We truly LOVE hearing from you all.
It’s a big week, medically. The goal of the week is Joseph’s comfort, his body’s ability to handle the chemo and for it to slow down the production of fluid in his abdominal cavity. Today we returned to the cancer center to check lab work. For today, his numbers were stable, so we will check again on Wednesday and again on Friday morning. If he passes both those tests he will receive round three of chemo.
Please, please know of our gratitude and forgive me for my delayed communication. I’m not good at “peopling,” especially when things are hard. I retreat inward and upward really well. Reaching outward isn’t my strength. I tell myself every day that tomorrow is the day I get back to everyone 😊.
Please send all of your love to Joseph’s kidneys!