(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.
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(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. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth and her closest friends wore their new HOPE rings every day. I wondered about the different meanings of hope. For her friends, perhaps the hope of her walking again? For Beth? Probably the generalized hope for a happy future. And for me? Small, specific hopes like fewer infections and fewer antibiotics. Anything more could be wishful thinking. The physical trauma of Beth's injury had weakened her immune system. Through the first several months, there was always a health issue that I worried about, either increased congestion or coughing or fever or infection or nausea or spasms or swelling. "I began high school as a different person than I was in junior high." A rare intense storm ushered in the first morning of school, complete with hard driving rain, lightning, thunder, and high winds. I parked near the new automatic doors, pulled the wheelchair from the trunk, unfolded the seat, plopped the cushion on, zoomed to Beth’s open door, scooped her legs over the doorway, grabbed the outside seam of her pants, and lifted her to the wheelchair. The umbrella Maria held over us broke, so when the girls entered the building, they left a trail of water down the hall. I had a meeting scheduled with my supervisor for my new job, but I rushed back home first to change out of soaked clothes, frazzled and sick to my stomach. After my meeting, I had a list of immediate things to do for the employment office to start work the next day. Back at the high school at lunchtime, I could breathe easier when I found a smiling Beth waiting for me. I was relieved to hear that she had a good morning. "Kids stared a lot at first. They wanted to get my attention, to talk to me, to see how I had changed," Beth said. "I was already used to being stared at. They thought they would offend me by confirming that I use a wheelchair, as if I didn't know." She looked more pale than usual, completely drained. Beth’s low back ached, a result of the strand of sensation that remained connected to her spinal cord. I suggested leaving early with me for home—a futile request. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth arrived home to the realities of an inaccessible world. She wasn’t strong enough to wheel herself up the low incline of our new ramp and expended colossal effort to open the refrigerator. Her livable space shrunk without the second floor and basement. I hated our small bathroom and our new shower chair. Nothing was easy. I desperately wanted to make things better and suggested moving to a more accessible home. She insisted that we stay put, and I resolved to try harder. Three days later, Beth’s African Gray baby arrived to stay. The parrot stood nearly a foot high with striking gray and white shading. She named him Timber since he could not perch well, sometimes falling from a hand to a lap (tim-berrrr!), and because she had a crush on Justin Timberlake from N’Sync. A typical fourteen year old in many ways, my youngest wanted to look her best for the start of school. A dentist put a cap on her chipped front tooth from the accident. Beth asked for a haircut and her first highlights. When we went shopping with Maria, a lady asked about her sister’s wheelchair. “Some people assume I’m not intelligent because I am in a wheelchair,” Beth said. “They talk loud and slow when they first see me. When I do normal things such as moving around or crossing a threshold, some people will tell me ‘good job!’ like it is the most amazing thing.” Beth's friend Elizabeth (and Elizabeth’s mom) surprised her with an extraordinary gift, an elegant silver and gold ring with a small diamond, engraved with the word HOPE. Her five closest friends wore identical rings. The friends planned to pay for the rings until the Osterman Jewelers in our small Ohio town, Tiffin, donated them instead. When I dropped off a paper to the high school principal that explained quadriplegia, he offered me a part-time position in a program for at risk students. There wasn’t any other job I could do and be available to Beth, so I accepted. I hurried away, suddenly winded with a tightening chest, thudding heart, throbbing head, and dizzying view. Why did I say yes? I had none of Beth’s courage. How much would she need me? How many school days would she miss? My responsibility had doubled, tripled, without the safety net of rehab nurses. Anything could happen and I worried about everything. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth’s decision to leave the rehab hospital early ramped up preparations for her return to home and school. At a July meeting with staff at the high school, she expressed no concerns about her first year in the sprawling building or her inability to do almost everything. I obsessed over every detail, trivial or not. I planned to meet Beth at school over her lunch break, so I requested a cot. A storage closet with an attached bathroom was converted into her private locker room. It included a small vinyl mat table. I also would be on call before and after lunch, so I signed our first contract for cell phones, ready with speed dials. We dropped physical education and band (trumpet) from Beth’s schedule and added two study halls, including one at the end of the day that she could skip to leave early. Three afternoons a week, we would drive straight from school to physical therapy in Green Springs with Laraine. Beth would not need to stay late at school for volleyball team practices and games, as we had planned before her injury. Her last weeks in the rehab hospital, John and I converted our living room into a first-floor bedroom. He removed the carpet and put down linoleum so the floor would be easy to wheel on. I bought a hospital bed and a cumbersome shower chair with rails for our one small bathroom. There wasn't enough time to build a bigger one. I tried to focus on anticipating what Beth would need, but my guilt over causing her disability would not be ignored. Averse to pity, I avoided everyone except my family. Even with my husband and children, the last thing I wanted was to cause them more worry. I made a heroic, but ultimately futile, attempt to bottle up my emotions. Planning for school turned out to be easier than going to school. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth decided to cut her stay short at the rehab hospital to start her first year of high school on time. The inpatient stay for those with new spinal cord injuries in the neck often exceeded three months. She would leave her hospital room after two months, giving her two weeks at home to adjust before school started. She refused to weigh the merits of the easier option: tutoring. No matter that she was pale, tired, weak, and susceptible to infection. No matter that she could wheel herself a short distance before her arms trembled and exhaustion set in. "Life is about making choices," Beth said. “At this point, some people may have taken a year off of school to rest and build their strength at home. I wanted to start at Tiffin Columbian High School with the rest of my freshman class.” I was faced with a choice as well. I officially quit my job at the institution for what I thought would be a long-term role as my daughter's personal care assistant. One afternoon in early July, John stayed with Beth while I turned in my keys and set up the literacy program for whoever would replace me. At the center, I ducked into a little-used hallway and closed myself in my office, avoiding the dozens of residents I had worked with. Most had looked forward to our sessions, usually a pleasant reprieve from monotonous days. I justified walking away, since my other option, talking individually with many residents in different locations, would be disruptive and frustrating all around. And with staff quitting regularly for easier jobs, residents lived with a revolving door of workers who cared about them. However, there was no comfort in the fact that I would not be the last to leave. As I left behind a good job where I could make a small difference, I wiped away more tears. Beth's shortened hospital stay added a sense of urgency to the rest of the summer. Extensive preparations had to be finished quickly at home–and at school. |
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