Wouldn’t it be nice if we had a crystal ball and could see into the future? It would make decisions and choices so much easier if we knew ahead of time what the outcome would be. The feeding tube was an answer to prayers for Mark’s improved health. If I would have known the difference it would make, I wouldn’t have given the feeding tube a second thought. With better means of nutrients came more frequent and longer episodes of consciousness and alertness. I continued to play Mark’s favorite music along with cassette tapes with voice messages from his mother and sisters from out of state. I read and talked to him, assuming he understood everything I said. He continued to have speech, occupational and physical therapy every day. While Mark was becoming more aware of his surroundings, I was learning how to talk and encourage him. We were growing together in new and unfamiliar territory.
Christopher and Katie were developing in this different world also. They went with me nearly every evening to visit their dad and reassured him of their love through hugs and kisses. Mark was unable to hug and kiss them back, but that didn’t seem to discourage them. One evening after we left, Mark told the nurse he needed to work hard because he had two kids that needed him. They inspired him to exertion.
Three weeks after the feeding tube was placed, Mark passed his swallow test. He was able to eat yogurt, Jell-O and pudding, which made eating dinner with him more interesting. The kids cheered him on as he learned to chew and swallow as I fed him the food. After our meal, we’d push Mark in the wheelchair to go outside to enjoy the nice summer evening air and we watched the kids play on the green lawn. Often I would question Mark about the colors around us in the sky, ground or of the ball the kids were playing with. Usually he got the color right. One night near the end of July I started singing with the kids some of our traditional campfire songs only without the campfire. To our pleasant surprise Mark joined in. He didn’t sing every word, but I knew he was following along in his head because every few words he’d say with us.
On the wall near the clock was a paper with the month and year on it. Another paper told the date. To help keep him oriented, the nurses and therapists asked him often about the date, time and year. If he couldn’t recall, he soon learned where to look to find out and hallelujah, he remembered how to read! Also on the wall was a lined piece of paper for the visitors to write their names and the date of their visit. Some would write a brief note of encouragement or an improvement they noticed. The therapists and I would use the information to remind Mark of what went on during that day or the night before. Every day his alertness grew and we were encouraged.
Since we were so close to home, Mark received visitors nearly every day. Family and friends were a great source of support and comfort. Mark’s mother and sister, Jerrie, flew in from Washington State for a few days. Jerrie brought her wedding photo album from eight months before. Mark could name family and friends in the photo album. What a relief to see he remember every person who came for a visit. Sometimes he’d get confused, but usually it was just his short-term memory he struggled with. His responses were delayed, with only a few short words, but we were thrilled to be able to converse with him.
On Sunday’s I’d take the kids to church and after Sacrament Meeting, while the kids were in Primary, I’d drive to Western Rehab to take Mark to the Sacrament Meeting there, then drive back to church to pick up the kids from Primary. On Sunday, August 4, 1991, I wrote in my journal, “Pay day – Mark said, ‘I appreciate you and all you do for me and the kids.’” He not only comprehended, but was grateful for my efforts.
A few days later when my brother Steve was visiting, Mark said, “I want to talk about your sister.”
Steve asked, “Which one?”
“The one I take care of, Barbara.”
“What about her?”
“She works hard and is always busy.”
This was particularly meaningful because Steve was also one of my employers. It appeared not only did Mark recognize family and friends, but remembered their connections. He was aware of my busyness. Every simple realization and improvement was a step in the right direction.
There was a large sitting room at Western Rehab where family and friends could gather to visit. In the corner of this room was a piano. My oldest brother, Mick, along with his family, would often come to visit on Sunday evenings and he would play the piano. Other patients gathered there with us to enjoy his playing and the encouragement his music brought. Once his talent was known, patients or staff would asked him to play whenever he came to visit. The entertainment was always a welcomed distraction from the pain and hard work of rehabilitation and the loneliness of not being home.
My sister, Rosanne, and her family put together a few musical programs to perform for us and any other patients who wanted to come to the sitting room. Usually a good crowd was there to be lifted up by the sounds of my brother-in-law, Klint, at the piano, Rosanne on the cello or flute and their five children, age’s five to fourteen, all on violins. Everyone in attendance enjoyed the entertainment and the healing power of music.
I am grateful for our family and friends who turned what could have been the dark days of rehabilitation into sunshine. However, there is no place like home and as the summer was coming to an end, I longed to bring Mark home.