 (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
During a brief respite from antibiotics, Beth set in motion a far-reaching odyssey, one that would lead to unexpected adventures in and out of the water. I watched as two therapists held her up in the rehab pool, one on each side and both on the lookout for autonomic dysreflexia, which thankfully did not occur. After a few exercises, Beth asked to float, a complicated endeavor with no command of the lower body. Fully supported on her back, she asked them to let go. They resisted at first, but eventually agreed, with a swift rescue a moment later. “I immediately loved the water and the freedom I had in it.” She talked them into more floating attempts while the therapists tactfully suggested moving on to more exercises. When she was a toddler, Beth had perfected the art of pleasantly talking her way in or out of most anything with a dimpled smile. John called her our little lawyer. The second time at the pool, the therapists bent to Beth’s persuasion again, positioning her body horizontally and letting go, over and over. They also taught her how to roll over from a face-down position, but she couldn’t do that or anything else in the water. At the third session, one therapist assisted in the pool instead of two. Experimenting, Beth discovered that moving her arms underwater allowed her to float on her own for a few seconds, with a bonus: backwards movement. “No one expected me to ever move in the water without someone holding me up.”
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 (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
The first weeks of school, I walked a tightrope, afraid of a long fall. Always a step behind, my goal was to function without crying in front of anyone. All the while, Beth set unnecessarily high standards for herself. Weak and exhausted, she didn't want anyone to push her wheelchair. She tried to get dressed and attempted zippers, buttons, and shoelaces with uncooperative hands. Her battles were physical. Mine were mental. Nothing was easy. Beth continued to surprise us, but not by wanting to go to her first football game in a wheelchair or her first high school dance. At the game, there was no way to access the student section, so she and her friends stayed on the track near the cheerleaders. She didn't ask to go to any more football games that season. For the Homecoming dance, John and I dropped Beth off at school with Maria and her friends already inside. Her shoes fell off during the transfer from the car to her chair. I put them back on and adjusted the sleeveless black dress several times, then again. An elastic strap under the dress held her knees together. She refused our help to wheel up the long sidewalk to the main entrance of the school, even though she couldn’t begin to open the heavy glass doors. From the car, John and I watched Beth’s slow, labored ascent up the long incline, another small action of life turned into a grueling challenge. John expressed amazement at her tenacity and how easily she took the leap of faith that someone would let her in. I worried more about social aspects than physical details. At home, waiting for her phone call, I braced for a negative outcome. How much vulnerability could she carry, as a new quad and as a new freshman at her first high school dance? Afterwards, my youngest wheeled to the car with barely-worn shoes on her lap and her three best friends alongside. Bursting with enthusiasm, the beaming girls talked over each other nonstop. They all wore the HOPE rings; Beth never took hers off. I drove her friends home, then I asked Beth if she had danced. Silly question. She loved the new experience of dancing in her wheelchair. I had stressed needlessly. With the crisis of the moment averted, I pushed my pessimism down the road. When Maria arrived home later that evening, she told me how her sister danced most of the night. Maria and I had shared tears over the shock of the accident, survivor’s guilt, and the cruel limits of a C6-7 injury. The night of the Homecoming dance, after Beth’s pure joy in life, we hugged and cried again.  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
School days blurred by. A few times I left my job early to take Beth home with a high fever. Loraine had introduced us to Dr. Julie Miller, a wonderful physical medicine and rehabilitation doctor. At our first appointment at her Toledo office, she handed Beth a gift: a prescription for physical therapy in the warm water rehab pool. We agreed to wait to schedule the sessions until another respiratory infection was resolved with another round of antibiotics. My new normal felt strange. Most school days, Beth and I shared our lunch breaks in her locker room. I transferred her out of the wheelchair and she melted into the cot—the one she thought she wouldn’t need. Both of us were stretched too thin. We shared peanut butter sandwiches and apples during the break. Then, after more classes, I met her at the car. On Tuesdays and Thursdays, she fell asleep at home by 2:30 pm. The other three weekdays we headed to outpatient rehab directly from school. Green Springs was named for one of the world’s largest natural sulphur springs that bubbled into a smelly greenish pond next to the rehab hospital. Once thought to possess healing powers, the warm water of the spring had a distinct smell, a little like spoiled eggs. Many had traveled there in times past to be cured. While Beth exercised in physical therapy, I often walked around the pond. I thought about the other moms who had taken this path before me, hoping for miracles. We left therapy for home after 5 pm. Essays, lab reports, and other assignments filled the time after a quick dinner. Initially, I typed while Beth dictated. After a few weeks, she insisted on typing herself, aiming for specific keys with her thumbs and the one finger she could move a little by itself, the left index. I bought forearm supports that attached to the computer table for her to use. She asked me to remove them. I interrupted homework for the time-consuming shower routine with the annoying metal chair and rails. I asked her again if we should consider a different house with better access. She insisted that we stay in the only home she had ever known. Beth was given extra time to complete schoolwork, but she refused to consider it. Each day had enough of a work load without adding more. Some nights I lay down after 10 pm with her working on homework in bed. She couldn’t turn off the lamp on her nightstand until I replaced the switch with a larger one. Beth fell asleep easily. I didn’t. I couldn’t stop worrying about tragedies that could happen anywhere, anytime, to anyone I loved.  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth’s first day of high school passed smoothly—with support systems in place. Her favorite plan allowed her to sit next to a friend in each class. They photocopied their class notes, handled her bookbag, and left class early with her. With heavy books still a challenge for Beth to manipulate, we kept a set of textbooks at home. She also had a small plain table to use as a desk in each classroom. Involuntary muscle spasms made her legs bounce straight out, rigid. Her good friends could safely bend her knee to “break” the spasm and put her foot back on the wheelchair footrest. “I had a small group of very close friends who helped me in many ways,” Beth said. The second day of school, I followed my daughters down the hall from a distance, purposely looking down on the way to my new job. Thankfully, no one talked to me. Perhaps they didn’t know what to say, or maybe they respected my obvious desire to be left alone. As instructed, I followed my supervisor’s lead with my job. I mainly tutored at-risk 10th graders in math. Grateful to not have more responsibility, I genuinely liked the students, curious about their stories. Under other circumstances, I would have tried to earn their trust. I would have been concerned about their choices and advocated for their future. Instead, I kept my distance; my well of worry already overflowed. I also had no way of knowing how long I could keep the job. After school and physical therapy, a crabby parrot greeted us when we returned. Timber didn’t like being left alone through the school day. The moody parrot baby had a tougher time adjusting to change than Beth. I did, too. |
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