In 1991, Mark literally slept in a coma through Mother’s Day, Memorial Day and Father’s Day. Not to mention my birthday and our twelve year wedding anniversary. Although he was awake for Independence Day, Labor Day, Halloween, his birthday and Thanksgiving, all those holidays were spent in the hospital for rehabilitation. We were overjoyed Mark would finally be home for Christmas. Last year I wrote what it took to get Mark home for the holidays. It’s one of my hardest, yet happiest Christmas memories so I wanted to share it again with a new twist.
Christmas can be a magical time, when wishes are granted and this definitely was the case for us twenty-three years ago. After eight lengthy months of hospitalization, I was finally able to bring Mark home — just in time for Christmas. He was far from better and still needed extensive therapy and care, so I worked on establishing a “day- patient” schedule where he’d be there all day for therapy and I’d be able to care for him every night at home. 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 therapist, requested that we 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. We passed the test and Mark was discharged from the hospital.
Once we realized Mark was going to be wheelchair dependent, we knew some home modifications would be necessary. In October 1991, we started building a large room which would become our bedroom with a wheelchair accessible bathroom off the back of the house. Fortunately, my dad and brothers work in construction and they were willing to do the job. My oldest brother, Mick, designed the addition with a ramp for the new back entrance. If you’re blessed to have a father who is an excavating contractor, “you can’t add a room without a basement.”
Top: Left – Don breaking ground. Right – Steve, Mick, Dad preparing for footings.
Middle: Left – Dad trying to escape. Right – Steve and Mick pouring footings.
Bottom: Left – Steve and Dad. Right – Mick, Steve and Dad laying cement floor.
Because they were building this addition on their own time after work, it was not completed in December. Despite the unfinished construction we wanted Mark home for Christmas. Mark’s care was physically difficult until the new bedroom and bathroom were finished, but well-worth all the effort to have him finally home. 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 my 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 nightly jokes. I often said as I unplugged the bed, “You are now out of control.” He teasingly replied, “But, I’ve got the top.”
Our living quarters were cramped and hard with the construction going on, but it was so worthwhile. My heart is filled with gratitude for my dad and brothers who made our home a place where Mark could live. Our trials were lightened by their skills and hard work. They opened up possibilities for our new circumstances.
Top: Left and Right – Don knocking out the brick wall into the new addition.
Bottom: Left – Chris, Katie, Dad and Mick nailing the top floor down. Bottom: Right – Chris and Katie painting our the new room.
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 home with construction going on for five months until the addition was completed. But, after eight months of living in a hospital — it truly was the merriest of Christmas’s to have Mark finally home.
In 1991 our world was turned upside down, but I learned “a magical adventure awaits those who venture forth.” The magic comes from the love of God, family and friends with a lot of hard work sprinkled in.
Finished room in March 1992. Christopher, Mark and Katie. Mark in our new queen-size adjustable bed.
Uniting Caregivers 