 (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth's young African Gray parrot screeched and squawked in an impressive range of piercing, demanding sounds. I tried to give Timber attention when he wasn’t yelling at me, but he didn’t like my attempt at a behavior plan. The parrot woke up early every day, an impatient alarm clock. On weekends, John and I took turns babysitting so the girls could sleep in. During my turn, Timber sat on my shoulder while I folded clothes or cleaned or cooked or rewrote my to-do list. I couldn’t sit still. Through Beth’s freshman year of high school, weekends focused on recovery. Maybe a movie with friends or an excursion to the YMCA pool. Our packed weekdays were overwhelming and exhausting between school, physical therapy, occupational therapy, extensive homework, and frequent medical appointments. Every small action of life was a challenge. The approaching holiday season lost its appeal for me. Timber shrieked when I pushed his cage in a corner to make room for our artificial green tree. With everyone busy, I decorated most of the tree, topping it with a red glass cardinal. The sweet ornaments my kids made when they were little did not evoke the usual nostalgia. I fought more tears, thinking about my babies growing up and the end of childhood. I avoided people and neglected friendships. I dreaded the social interactions required at holiday choir concerts and other events; “How are you?” echoed from well-intentioned acquaintances. How should I respond? I would not share my regret in the high school lobby. I refused to be a lightning rod for pity. When I was asked about Beth, deadly health risks of quadriplegia came to mind. Instead, I said something about her amazing attitude and found an excuse to retreat. My counseling sessions slammed me every week with sharp dichotomies. I had no disability and fought with pain every day. I appeared calm and anticipated crisis. I loved my family and my heart ached. My guilt spilled over in waves. How could I contain it? My psychologist didn't know. She reminded me about all the things out of my control—which might have been helpful for someone in a better frame of mind.
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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.)
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.)
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. |
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