Christmas can be a magical time, when wishes become a reality. This was definitely the case for our family in 1991. Mark literally slept in a coma through Mother’s Day, Memorial Day and Father’s Day. He missed out on additional celebrations such as my birthday and our twelve year wedding anniversary. Although he was awake for Independence and Labor Day, Halloween and Thanksgiving, all those holidays were spent in the hospital. After eight months, our wish was for Mark to be home for Christmas.
The preparations started in October as we realized Mark was going to be wheelchair dependent. We knew some home modifications would be necessary. My oldest brother, Mick, designed an addition off the back of our home, complete with a ramp for the new back entrance. A large bedroom and bathroom was drawn up to accommodate Mark’s equipment and new needs for care. Fortunately for us, my dad and brothers who are experienced in construction were willing and capable to do the job. My dad, who is an excavating contractor said, “You can’t add a room without a basement.”
Mark was far from better and still needed extensive therapy and care, so I worked on establishing a “day- patient” schedule where he’d be at Western Rehab all day for therapy and I’d be able to take him home to care for him every night. At the time he wasn’t able to feed himself or take care of any personal needs. Mark’s doctor, Joseph Vickroy, and the rehab team of speech, occupational and physical therapists, suggested that I spend several nights in an apartment-like room located in the center unit where Mark had been for six months. They felt it was important for me to understand the responsibility of caring for Mark before they released him.
I thought the request was trivial since I had spent every day with him and fed him most meals anyway; however, I understood their concern and agreed to do it. I spent several nights there and took complete responsibility for him. Our two children also spent a few nights there to understand what life would be like to have Dad at home.
Because my dad and brothers were building this addition after the hours of their normal work day, it was not completed in December as we’d hoped. Despite the unfinished construction, we wanted Mark home for Christmas. His care was physically difficult without the assessable bathroom, but well-worth all the effort to have him finally home. Since the new bedroom wasn’t finished and our regular bedroom wasn’t big enough for all the equipment now needed for Mark, our queen-sized bed had to be replaced with a single-sized hospital bed. At night, after I transferred him into bed, I would raise it as high as it could go and place an air mattress on the floor in the only space available — which meant my legs were tucked under the bed. Worried that Mark might forget I was there and use the controls to lower it, I would unplug the bed every night. This sleeping arrangement made for many jokes. I often said as I unplugged the bed, “You are now out of control.” With a smug look on his face, he teasingly exclaimed, “But, I’ve got the top.”
Our living quarters were especially cramped and difficult with the construction going on. The sounds of saws and hammers could be heard until late hours into the night, but with the excitement of having Mark home we hardly noticed. I am filled with gratitude for my dad and brothers who worked tirelessly to make our home fit our needs for our new circumstances.
Chris Chipping, a friend and former employer of Mark’s, did the electrical wiring for our new addition while another friend, Walt Fisher, did the plumbing. It was a crazy, busy and noisy home with construction going on for five months until the addition was completed. However, the acts of service and love from family and friends made the Christmas of 1991 unforgettable. Our world was turned upside down that year and after eight months of living in a hospital — it truly was the merriest of Christmases to have Mark finally home.
Our trials were lightened and my caregiving responsibilities were made easier once the new bedroom and bathroom were completed. We were blessed by many skilled hands and a lot of hard work who were definitely making our Christmas wish come true.