(This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Mid-summer at the rehab hospital, Beth gradually felt small sensations in her trunk and legs. The therapists called it a “return” that sometimes occurred after the shock of the initial trauma abated. She could feel a firm touch on the skin, but not hot or cold or any degree of temperature. Beth’s spinal cord had been cut at C6-7, but the new sensations proved that a tiny strand remained connected, defining her injury as incomplete. When we sat outside between therapy sessions, she could not feel the warmth of the sun on her legs. “I have regained only partial feeling in my trunk and legs, but still no movement,” Beth said. “I can move one finger on my left hand and my handgrip is still weak.” Zero finger control in intensive care changed to one digit, the left index, which could move a little. Limited to a range of three inches, the finger could not straighten or touch her palm. Even so, it was a gift, one that would make her left hand the favored one for everything except her right-handed habit of writing. I hoped for more returns which never happened. Simple tasks remained complicated or unworkable. The inability to put her hair up in a ponytail bothered Beth. She couldn’t manipulate an elastic band, but there was a second big obstacle. If she raised her hands high as she sat in a chair, she tipped forward to the floor. Beth depended on the wheelchair armrests to balance. Laraine taught her how to push down with her palms on the locked big wheels to shift and move her bottom, little by little, to the front edge of the chair seat. Then, Beth leaned against the backrest for stability to prevent a tumble to the floor when she lifted her hands behind her head. Before she handed me the elastic band, she tried to put her hair up on her own, again and again, until her arms trembled. “Early on,” Beth said, “I decided that I was going to become completely independent no matter how long it took.”
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(This blog tells my family's story. To see more, click "blog" at the top of this webpage.) I was not a stranger to disability before my youngest daughter’s injury. I had managed group homes and worked at a state institution. I thought I understood challenges. I was wrong. Through my jobs, the clients I had worked with seemed to have quantifiable disabilities, ones with a range of realistic goals. At the rehab hospital, I could not see an array of potentials for quadriplegics. Love and support could not alter brutal physical realities. My guilt over causing the accident grew into a horribly unspeakable thing. Beth never forgave me because she never blamed me, though there were times when I wish she had. I didn’t deserve a free pass for such a devastating injury. Years would slip by before I could forgive myself. In physical therapy, she learned the steps to sit up by lying on her back, throwing one arm over the other to roll on one side, then pushing down on the mat with both hands to lift her body up. However, knowing the process and having the strength to do it were two different things. The first weeks in rehab, continuous exertion with no progress exposed the extent of her hope. Eventually, from a position on her stomach, she could lift her trunk a few inches off the mat with her arms. Even Beth seemed surprised by, and glad for, every little thing. “I had to relearn how to do everything,” she said. About six weeks after the accident, a small group of us watched Beth attempt to sit up by herself for the first time. Starting on her back, she concentrated on rolling over to one side, making it after several tries. Next, she slowly—slowly—rose to a shaky sitting position. After picking up a shoe, she swayed through several clumsy minutes of strenuous effort to put on each shoe with uncooperative hands. I applauded with John, Maria, Beth’s grandparents, and the therapists. John’s dad had to walk away so she wouldn’t see her strong grandpa cry, the long struggle eclipsing the small success. Since Beth felt comfortable with the night nurses and aides, I left the hospital at bedtime to drive home, happy to see Maria and Ben. I slept the best I could and returned to rehab early each morning. I depended on regular visits from John and my parents during the days. Together we stayed on the sidelines and cheered for Beth, roles we would repeat often in other environments. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Occupational therapy at the hospital focused on Beth's hands. We learned about the tenodesis reflex which some quadriplegics used to grip items, though it required persistent practice to use it well. I tested the reflex. I set an elbow on a table with my forearm straight up and my hand falling forward. Keeping my fingers loose, I pulled my hand backwards at the wrist. As my hand tilted back, the tenodesis reflex automatically closed the space between my fingers and palm. Sitting in a wheelchair at a table, my youngest was determined to manipulate objects with her hands. To grip a pen with a fat handle, she held it between her index and middle fingers by tilting her right wrist forward and up, her hand entirely closed. At first, she couldn’t press the pen down enough for the ink to show. Beth also observed and listened. We heard about the 1995 accident that left actor Christopher Reeve immobile and dependent on a breathing tube. His spinal cord injury occurred one inch higher in the neck than Beth’s and required nursing care around the clock. I tried to be grateful for my daughter’s ability to breathe independently and move her arms, but I wanted so much more for her. We met others with spinal cord injuries at rehab. One had a brain injury in addition to a bruised cord. A middle-aged man with an injury like Beth’s had lived his life in a nursing home. A newly-injured young man with paraplegia (paralysis in two limbs, the legs) refused physical therapy and moved to a nursing home. He had full use of his hands and arms. When another boy was paralyzed during fusion surgery to correct his scoliosis, his mom told me that he would not get out of bed for weeks. Then, he would not go back to school. “I learned how some people given the same situations react in opposite ways. I have seen how people take so much for granted,” Beth said as a 14 year old. “Some people had a tendency to stop. They wouldn’t try to be independent. That’s always been a goal of mine—to be independent.” Beth’s outlook stayed hopeful, but in a vague, trusting way. She had no idea where our future adventures would take us. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) When we arrived in Green Springs, Beth had a sunny hospital room to herself. We met the physical therapist who was an expert on spinal cord injury. With a big heart and bigger personality, Laraine would not disappoint. Laraine emphasized the strenuous work required over months and years for a C6-7 quadriplegic to be less dependent. Beth had zero strength—even in her arms and trunk where some of the muscles and nerves still connected to her spinal cord. I couldn’t imagine my youngest doing anything on her own, but she believed. The first time in physical therapy, Beth lay face down on her stomach, unable to lift her shoulders. At all. Sitting with her legs straight out in front, she could not keep her balance. Laraine supported her every step of the way, along with Jill or Amy. There was little progress in the first weeks. “At the rehab hospital,” Beth said, “the simplest tasks of putting my shoes on or sitting up by myself were the hardest challenges of the day. Transferring from place to place was impossible for me to do on my own. Wheeling myself any distance was difficult. My life consisted of two long physical therapy sessions a day where my therapists had no concept of being tired. They pushed me to exhaustion, but I knew how much they were helping and I appreciated it.” Beth looked forward to mail deliveries, surprised at all of the well wishes. We were overwhelmed by the generosity of our hometown of Tiffin, Ohio. My co-workers at the Tiffin Developmental Center donated weeks of sick leave time to me. The maintenance workers at the Center also built a long wheelchair ramp that connected our back door to the detached garage. John, Maria, and Ben brought more get-well notes and gift cards for gasoline and restaurants from friends and family. And news of an unusual gift. In elementary school, Beth had told her principal about the African Gray parrot she wanted to own someday. The principal collected donations from staff and students in the Tiffin City Schools to buy a young parrot and a large cage. Flowers arrived from the coaches of high school volleyball, the team she would have played on, and also from her club volleyball team, whose season ended weeks before. In the evenings, Beth and I took turns reading aloud from the brand-new Harry Potter book, Goblet of Fire, another gift from my co-workers. She could barely hold the book, even though it rested on a small table over the bed. At first, turning pages was impossible and we used clothespins to keep the pages open. We put a fat tube around a pencil to use the eraser end to turn a page. That worked until weeks later when she patiently figured out how to use her hands to accomplish the job. “Rehab was a great experience,” Beth said. “I was too busy to think about what had happened to me or to become depressed. Every new thing that I accomplished became a celebration. I was in another world. My family was always there. My best friends visited me often and even moved a birthday party to the rehab center so I could be there. The therapists became a second family to me.” Five baby African Gray parrots visited Beth in Green Springs. Propped up on the hospital bed, she cradled the noisy babies on her lap and picked the one that would be hers when she moved back home. The kindness of family, friends, and strangers would be repeated by many in other times and places. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Three days after her second neck surgery, Beth left intensive care on a stretcher in an ambulance. The rehab center in Toledo had a pediatric wing with six hospital beds in one room. Next to us, a little girl with a brain injury made unhappy sounds in a bed with high rails. We had moved from a private room in intensive care with constant checks by nurses to...waiting. Waiting for a water pitcher and a cup. Waiting for a box of tissues to wipe away my escaping tears. Waiting for everything, anything. The first day held an eternity of disappointing moments. How was this the magical place where Beth would regain at least a little strength? The second morning in rehab, a nurse and I transferred my daughter from the bed to a wheelchair with difficulty. I pushed her down the hall to the first physical therapy session. During another long wait, I tilted the chair back to alleviate her dizziness. She had major adjustments to make--including the transition to a sitting position. When it was our turn, the therapist said little and moved Beth to a mat table. The therapist solved the immediate, inevitable dizziness by returning her to the wheelchair and tilting the chair back. Done. We considered other rehab choices in northwest Ohio, not realizing that top-ranked centers farther away also were an option. Beth made the decision to transfer to the St. Francis Center to work with a physical therapist who was an expert on spinal cord injuries. When we traveled by ambulance again, our destination was the tiny town of Green Springs, a fifteen-minute drive from home. It was a decision we would not regret. |
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