Over the weekend, I rearranged my bedroom so that my bed was in the corner between the two windows, and my desk/workspace was on the opposite wall. Basically, this was a flip-flop of how things were set up before, a remnant of how things were positioned in the room last June when my wife and a friend of mine moved our furniture out of the master bedroom on the first floor into what had for the longest time been the boys’ bedroom. Everything in our sons’ bedroom had been moved downstairs or, as one say, flip-flopped.
This was in anticipation of our oldest son’s return home from rehabilitation at the end of June. He was diagnosed with brain cancer in March 2019, underwent surgery four days later during which it was successfully removed, and then entered rehabilitation at the Mary Free Bed from late March until the end of June.
From the fall of 2015 when we moved into the house until that March, a portion of our bedroom had been set up as office space. I sat there on the days when I worked from, and when I worked on different projects. Up until that point, Josh shared the upstairs bedroom with his younger brother, Elijah. But it was last spring when, out of sheer frustration with Josh’s situation,I decided to act on the crazy idea of replacing my worn out wooden desk with folding tables from the garage and re-arrange the room somewhat. Perhaps this was made easier because my wife was in Grand Rapids, but mostly it was motivated by a need to take control over something, because by that point I was so worried about Josh, and I just needed proof that things had not spiraled completely out of control.
I was so committed to continuing my work back then that whenever I swapped places with my wife in Grand Rapids, I would bring both of my work computers, and a portable computer stand which I could work from. That first week, I attempted to work from inside Josh’s room in Mary Free Bed, but there were so many interruptions from doctors with questions, cleaning crews, and nurses, that it was difficult to stay focussed.
The Hope Lodge was just a couple of blocks away from the Mary Free Bed, and Josh’s cancer diagnosis qualified us to stay there for free. It only took that first week staying with Josh before I realized that I needed a space where I could focus on my work and decompress a little. So, I made the arrangements and the next time I took my turn in Grand Rapids I came prepared to set up a makeshift desk inside my room. I would sleep over night in Josh’s room, help him get ready for his day, see him off to his first therapy session, then grab my stuff and walk down to the Hope Lodge where I would work inside my room during the morning, then head back to the Mary Free Bed for Josh’s lunch. I could do my laundry at Hope Lodge while I was there, and I would sometimes hang out in the kitchen at night after Josh had fallen asleep.
At first, it didn’t seem practical to try to sleep overnight at the Hope Lodge. When Josh first arrived, he was bedridden and unable to talk, so he required a lot of support. As he gained back his voice, he still had trouble communicating his needs. As a parent, I served as much as an interpreter between him and the nurses and other times as an assistant. It wasn’t until May when I first began to feel comfortable enough leaving him for night. But, when I did, I found that the change in scenery, the full-sized bed, and the access to a full kitchen really helped me to recharge.
Josh began a six month round of chemotherapy in July, requiring me to temporarily relocate my workspace down to the living room so that I would be nearby in case he needed something. I think that the biggest disadvantage to working and sleeping upstairs has been that I’m taken out of so much of the “action” happening on the first floor of the house. This includes when the kids need something, or if somebody is at the door. On the other hand, it is somewhat more peaceful in this bedroom and during the winter it was the warmest room in the house.
It is funny to think about how much we have done to adjust to our new set of circumstances. The previous owners of the house did seem to set up their master bedroom upstairs, and in this same room, but I was content being on the first floor. But, it has always been important to do things the way that they work best, and right now this is what works.
Josh will probably occupy the first floor bedroom for the remainder of his stay in the house, but I could see Elijah moving into his sister’s room on the second floor once she moves out. There might even be a time when the master bedroom opens up again, and when it does I might move back down there. It all depends on how things are and what’s going on at the time.