(This blog tells my family's story. To see more, click "blog" at the top of this webpage.) My schedule aligned with Beth's since she couldn’t drive places independently with her wheelchair. After she achieved what I thought was impossible and swam forward in the pool, I worried less about disappointments she might face. Her confidence grew, along with her ability to push herself. Before Beth's junior year of high school ended, I drove three seventeen- year- old girls to physics day at Cedar Point in Sandusky, Ohio. The sprawling amusement park filled with teenagers on a weekday. Beth and her friends decided to try a few roller coasters. They skipped the long lines for the rides to take their places at the front, joking about the perks of disability. They worked on their physics assignment and bypassed the rides that didn’t have enough physical support for a teenager with quadriplegia. We watched the Iron Dragon coaster and deemed it safe. Legs would dangle, but with a relatively smooth ride. Metal bars held the body in place securely. However, the Iron Dragon had no elevator and several flights up. I dragged the wheelchair up, rolling it on the steps for stability, with Beth facing down. She wrapped her arms around the back to stay in place. Two friends each grabbed a metal rod by her legs for back-up. When we arrived at the top, lifting Beth into the tight seat of the ride was much harder than we expected, even with extra help. I suggested we stop and go back to the wheelchair, but she wanted to continue. The fast pace of the assembly line stopped and people stared. Disheartened, I stepped back out of the way as the girls zoomed off. I wondered if our risk assessment was accurate. In no time at all, the girls flew back to the starting point and stayed put in the cars for another round. Beth gave me the thumbs up so I didn’t worry as much the second time. I should have stressed more about the narrow steps going down that were packed with people. Down the flights was not easier since the stairs were narrow and crowded with people. At one point, we made the mistake of lifting the chair wheels high off the concrete to try to get around other people, making it more precarious with a tilted chair (and a tilted Beth). Crazy. We were lucky she didn't fall. After that, we unanimously agreed to avoid stairs altogether for the rest of the day. When the heat of the day kept rising, my daughter looked pale and didn’t refuse Tylenol to bring her fever down. The girls found cold drinks and air conditioning in a restaurant, followed by an arcade. Beth never allowed hot weather to stop her plans and adventures. Just ahead: a nonstop summer!
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(This blog tells my family's story. To see more, click "blog" at the top of this webpage.) After every swim practice, Beth leaned into a corner, put her hands up on the ledge, and raised her body up as far as she could — before being lifted out of the pool. A familiar dynamic: complete assistance very (very) slowly becoming partial assistance, with her clear expectation that it would be no assistance in the future. As a junior in high school, Beth managed to keep up with a full school day, swim practices, volunteering, and extensive homework. She typed lab reports and essays on a standard computer keyboard. The early version of DragonSpeak, voice recognition software, never was used. She didn’t use the typing aid I bought that strapped on her hand or the supports to rest her forearms on. Beth used three fingers to type. She always relied the most on her left index, the only finger she could move a few inches, to press down on the keyboard. The useful left index also worked her laptop’s built-in mouse, set to respond to a soft touch. The same finger also hit letter keys on the left side and center. The index and pointer on her right hand contracted in an arc and focused on the right side of the keyboard. To type with those two fingers, she had to move her right hand to place a fingertip on a specific key, since she couldn’t move those fingers. When a finger or hand spasmed, she used another and kept going. Her accuracy was amazing, but in high school, her typing (and handwriting) was significantly slower than her peers. Against my advice, she took the American College Test (ACT) with no accommodations. Beth stubbornly refused extra time for assignments and tests. Her application for a lift chair to use at the pool was approved. We met with senior students at the University of Toledo who took Beth’s measurements and discussed the design. The chair would have a standard seat with back support and a toggle switch powered by a motor with a rechargeable battery. Sitting on the seat, she would push or pull a toggle switch to lower or raise the seat. The finished project impressively accomplished the task. At the YMCA, Beth stayed in her manual chair while I pulled the lift chair to a spot on the deck close to the water. She adjusted the seat bottom of the lift to a position slightly lower than the seat of her manual chair before moving onto the lift by herself. She used the toggle switch to move the seat down to almost floor level. From there, she used her arms to scoot to the deck and into the water without assistance. Unfortunately, we could not store the chair at either pool. I could barely lift the heavy device to put it in and out of the car, so it found a home in our living room. Beth used the lift chair to get on and off the floor independently, sometimes stretching out to do her homework while a familiar movie played in the background. Austin Powers movies were comedy favorites. John made the girls laugh with lines from silly movies. Beth found humor in her disability that her friends and family shared. At school, a friend scolded her for not standing up during the Pledge of Allegiance. When Beth’s friends gathered at our house, I loved to listen to their easy laughter.
Next week: more swimming serendipity... (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth, 16, passed her driving test on a cold autumn day. Comfortable behind the wheel of her little blue car, she held a knob on the easy-turn steering wheel with her right hand. Her left hand pushed or pulled a bar to accelerate or brake. Driving was fun, but not getting in and out of the car by herself. She didn’t want to use a sliding board. She scooted to the far right edge of the chair cushion and put one hand on the driver’s seat and the other on the chair cushion. The goal was to lift her trunk high enough with her arms to bridge the gap. A far-off goal, but Beth still kept trying. Every time. I stood right behind her and intervened with a boost so she wouldn’t fall. I quickly learned that the belt loops of her jeans ripped easily, so I grabbed the side of her jeans instead to lift her over the gap. When Beth was with others, some still helped by grabbing the belt loops. At first, I sewed up rips and the holes they left. But when they just ripped again, I gave up. At that time, her shirts covered the holes. Just like the bottom of her jeans always hid her socks. Important things for my usually easy-going 16 year old. ;-) Another driving problem: the empty wheelchair after she was in the drivers seat. Beth liked the idea of taking off the wheels of the chair and lifting the pieces across her body to the passenger seat. Unfortunately, it wasn’t practical between the high back of her chair and her strength. The mechanized topper on her car had seemed like the solution. However, the wheelchair needed to be folded and positioned properly on the hook. Plus, the topper was temperamental. When Beth pushed the toggle switch on the remote control to raise the wheelchair, it did not always fall in place at the top properly. Which meant that the car would not start. She resigned herself to the fact that driving would not be a completely independent activity. Even so, she had no regrets about her decision to drive a car instead of a van with a lift. Beth always made time for friends. On the November opening day of the second Harry Potter movie, The Chamber of Secrets, she talked me into letting her drive with no one else in the car while she picked up her best friends. I put her wheelchair in the hatchback without taking it apart. The chair was out of her reach, but I made sure that her cell phone was charged and close by. I was on call but not needed until after the movie when she pulled in the driveway by herself. About five months after our Seattle trip, Beth surprised me by achieving the impossible... (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) A week after the Michigan games, Beth, John, and I met the Toledo Raptors in Columbus for the Ohio Wheelchair Games, a much larger event. Our team stayed two nights in a hotel close to the OSU campus. In the lobby, one of the teenage boys showed off with extreme wheelies. When his manual chair tipped backwards to the floor, the front desk staff rushed over while Beth and her friends laughed to tears. (When his chair toppled back, the boy tipped his head safely forward, chin to chest.) Karaoke in the hotel lounge turned a bit wild. Returning to the Jesse Owens stadium as a participant, Beth sat with her friends near the track while they waited for their turns. I watched the races from the stands with other family members. She also tried outdoor field events and threw a discus for the first time. She laughed when it plopped near her wheelchair. For the weightlifting competition in a gym, I helped Beth recline face up on a narrow elevated bench with a barbell suspended over her chest. For quads, the officials started with no weight added to the barbell. Beth’s arms were not strong enough to budge it from the rack. At all. Despite nearly two years of intense physical therapy and pushing herself in a manual wheelchair. It was a reality check, a reminder of the severity of her disability. Beth quickly moved on to her favorite sport with her slow backstroke. Ben joined us to watch the meet at an OSU pool. Swimmers with a wide range of abilities and ages gathered for their races, with most of them not aiming for a specific time. With no announcer, there was no easy way of evaluating the races, but it didn’t matter. Encouragement reigned. Before the table tennis competition, Beth practiced at an open table with me for the first time since her spinal cord injury. She held the paddle with the tenodesis grip, using her wrist to move her left hand up, perpendicular to her forearm. Other quads strapped the paddle to their hand. She depended on the armrests of her wheelchair as she reached from side to side. Her balance as she sat in her wheelchair was not solid; if she leaned over to pick something up off the floor, she would fall down—unless she first hooked the opposite elbow on a push handle. During the competition, she dropped the paddle twice, and picked it up herself. Some watched closely, perhaps to try the same thing later on their own. Another Raptors mom enthusiastically congratulated Beth for winning several ping-pong games. All three of my kids learned ping-pong from my mom, the first woman in Lorain County, Ohio to teach physical education back in the early 1950’s. My mom also played field hockey and basketball at OSU where she met my dad. My dad liked to point out Beth’s double dimples and blue eyes, both of which she shared with him—along with a stubborn streak. A banquet in a large ballroom ended the Ohio Wheelchair Games. I joined in the applause when Beth was surprised with the Rookie of the Year award. Our Seattle trip was approaching fast. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth had another sleepover on New Year’s Eve with her best friends and a fondue feast at our house. Soon after, Dr. Miller asked Beth if she would exchange emails with a new quad, and I talked to an overwhelmed mom on the phone. I listened but shared little, only how everything had changed in comparison to the initial month and how I hoped for more progress. I was sure that I wasn't a good role model for other parents. The New Year and the time beyond seemed impossibly uncertain. My concerns encompassed the global and the trivial. I was an equal opportunity worrier. Since 9/11, terrorism and nuclear weapons found their way into my nightmares. Any number of potential health problems threatened Beth—and everyone I loved. When she ventured out into the world as an adult, what kind of welcome would she find as a quad? As a toddler, she was Cinderella to Maria's Snow White. Would they find their happily ever afters? At a meeting in Toledo, Beth registered for the wheelchair games in May with the Raptors. She thought that she wasn’t good enough to sign up for the pool events, but others convinced her to try. Some of her friends also shared their earlier trips to another sports event, the National Junior Disability Championships, held every summer for kids from across the country. In February, Beth elected to have an eight-hour bladder surgery, paving the way for independence. As a result, I would no longer need to be with her every few hours. A week after she left the hospital, against my advice, she agreed to help Laraine with a new class of physical therapy students. Beth wore loose clothes to cover the temporary tubes from the surgery that protruded from her abdomen along with a small rubber bulb. Laraine teased about going easy on her during the mat exercises. When Beth sat with her hands in her lap, she wobbled less than she had at the last demonstration. Careful with the tubes, Laraine refrained from pushing hard to test her balance. Beth also shared her ponytail progress with the students, but she still couldn't complete an additional loop of the elastic to keep it in place. Not yet. At the followup appointment with the urologist, he removed all the tubes and the bulb for good, leaving bare skin and a long surgery scar below her belly button. We celebrated with a shopping trip. She had fun picking out cute underwear and a bikini swimsuit. Beth was disappointed with the doctor’s ban on swimming for six more weeks as she healed from the major surgery, not negotiable. And her first swim meet ever was just ahead. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth’s second year of high school would hold different challenges than the first. When she started her sophomore year, sixteen months after her injury, I could get through the days without crying in front of anyone, a victory of sorts. “My small group of really close friends in high school helped me in many ways,” Beth said, “including breaking my leg spasms and carrying my book bag. By the second year I had those things under control, but a friend continued to sit by me in class only because it was more fun that way.” I took a short cut through the school cafeteria on September 11th at lunchtime and paused by a strange crowd of silent students in front of the television screen. It took only a moment to get my first glimpse of unthinkable tragedy. I rushed to the locker room, relieved to find Beth and Maria waiting for me. Hugged close and safe, for the moment. I grieved with the nation, overwhelmed by the scale of the losses and the faces of children who would never grow up. My worst-case scenarios amplified after 9/11. Terrorism took on a life of its own in my mind, growing and mutating into an on-going and imminent threat. I tried to tap down the fear by storing bottled water in the basement and packing an emergency duffle bag. I wrote phone numbers and a meeting place on a small rectangle of paper, copied and laminated for each member of my immediate family to carry in their wallet. An article that I read caused me more worry, about the terrible knowledge that nuclear weapons had already been used in the past, and might be used again. My heightened fears grouped nuclear weapons with terrorism and a deadly virus. Toxic chemical spills were a high risk in Ohio with the heavy truck traffic. And a personal, selfish anxiety about any number of alarming events that could restrict prescription drugs; I was acutely aware of my addictions with antidepressants and pain medicine (not opiods, thankfully). Who would I be without the prescriptions? How would I help Beth? The very worst part of my anxiety was feeling helpless—powerless, useless—to protect my family. My counseling sessions after 9/11 were more emotional. My psychologist patiently explained to me that widespread catastrophe would be highly unlikely, as though that would comfort me. The tragedy of 9/11 had been unlikely. Our car accident and Beth's injury had been unlikely, too. I really (really) wanted to be optimistic, and picked up books at the library with positive messages. I wished that getting rid of anxiety could be as simple as just choosing not to worry. Just choosing to have hope. When Beth asked to go to the YMCA a few times a month, I read books on the pool deck while she moved on her back with her arms waving slowly underwater. I no longer needed to watch continually for her head dipping too long under the water. When I drove to Green Springs after school for physical therapy, Laraine encouraged her to keep swimming. Though technically, she was floating. I joined Beth in the water one Sunday at her request. She wanted to try the backstroke. The effort to rotate her arms out of the water caused her to sink. I splashed my face to hide my tears as I lifted her up. We had no way of knowing that the backstroke would be her fastest swim stroke. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) After two lost weeks, one in intensive care and one at home, I carried a nebulizer to the high school at lunchtime for Beth’s breathing treatment. Pneumonia had set back her stamina by months. A shortened day of school wiped her out, again. On edge and anticipating the next crisis, I felt an initial flash of fear when the phone rang, and relief when it wasn’t an emergency. For the first time in my life, I understood the compulsion to try to feel better through food. That didn’t work, but not for lack of trying. I joined the ranks of emotional eaters and had to buy bigger clothes. The completed elevator at school led to second floor classes for Beth, which created the need to carry her down the stairs during fire drills. I wrote a detailed procedure and helped a therapist from Green Springs lead the staff training. Several teachers volunteered to attend. The principal had bought a heavy vinyl sheet with four handles, two on each long side, like firemen used. Four teachers carried her on the sheet while a fifth moved her empty wheelchair. Concerned about hitting her head on a step, they lifted the sheet higher with extreme caution. “It took awhile for them to realize I don’t break,” Beth said. She also had a new favorite saying: “I’m not broken and I don’t need to be fixed.” During one drill, her Spanish teacher wore a football helmet to make her laugh. She put up with the drills, but disliked being carried outside on the vinyl sheet into a crowd of students. As more time passed, during a pre-planned drill, Beth talked them into breaking the rules with an unplanned stop inside the building at the bottom of the stairs, to lift her into the wheelchair. From there, she pushed herself outside. Riding the elevator every school day with a friend turned into entertainment. Sometimes they added their own elevator music. They flirted with boys on crutches, injured athletes who also used the elevator. When she accidentally bumped the alarm button and nothing happened, hitting the alarm on purpose became a joke. Beth loved to laugh and found humor in her situation that her close friends and family shared. Being a quad (quadriplegic) meant that you could not flip someone off with a middle finger, so raising a fist instead became a inside joke—though I knew that when she could do it the usual way, she wouldn't. At school, a friend scolded her for not standing up during the Pledge of Allegiance. They made summer plans to go to Cedar Point, famous for its roller coasters, to be first in line because of her wheelchair. At friends' houses or at ours, Beth liked to sit on the couch; when she was asked to get something in another room, she quipped about being tired from too much walking. “Everyone I know with an injury who is doing well has a sense of humor about it,” Beth said. “You need that.” (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Seven weary months had passed since Beth’s injury. My favorite time of year, Christmas, was a blur. Ben came home from college and together our family of five visited grandparents, aunts, uncles, sisters, brothers, and cousins on the Lake Erie shore. When my Grandma Henning passed away, my parents moved from Lorain to the family homestead in Vermilion. Built by my great-grandfather, the old farmhouse never failed to invoke broad chords of memory along with tinges of sadness for my grandma’s absence. As a child, I was there every Sunday with my brother and sister and cousins, and parents and aunts and uncles. It was the place where I watched Grandma make sweet kuchen and grape jam (with the skins) and every kind of deliciousness. The place where I blew out birthday candles and found a four leaf clover that I pressed in my diary. The farmhouse also was a place that was inaccessible in every possible way, with the stone driveway, entry steps, and tiny bathroom that didn’t fit a small wheelchair. Beth didn’t mind. Ben and Maria handled the steps with the wheelchair. At the house in Lorain where my in-laws lived, also inaccessible, John’s oldest sister Jean greeted us at the door. She liked Beth’s wheelchair and wanted one of her own. Jean, born with Down syndrome, counted down the days to every family birthday and holiday. She knew that her January birthday was before John’s in February, so every Christmas, he teased her that his birthday was next. When we arrived back in Tiffin, Timber welcomed us home. I had photographs printed at a local store from the holidays. My smile in some of the photos contradicted my feelings, but not my goal. I focused on not giving the people I loved more to worry about, especially after I accomplished that spectacularly well with the accident. One of Beth’s presents was a molded piece of plastic that sat on the table in front of her and held playing cards in a vertical position. John and I played bridge with Ben and Beth using new bigger cards and the plastic piece. By the end of the evening, she put the plastic to the side and experimented. When she held the cards in her right hand with the tenodesis grip, she raised up a specific card with her lips. Then, she used her one moving finger to set the card on the table or adjust her grip. As Beth’s best friends arrived for New Year’s Eve at our house, we made a mess in the kitchen with my grandma’s brownie recipe. Beth christened her new fondue set with chocolate and an elaborate spread that included brownies, marshmallows, pretzels, and fresh fruit. The girls camped out in sleeping bags and watched the new Grinch movie, played with Timber, and dipped treats in chocolate. I listened to their easy, carefree laughter. For me, the New Year loomed with brewing threats, with emergencies and tragedies a heartbeat away. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) “My friends have been very positive, full of encouragement, and have accepted my disability, and treated me just like everyone else,” Beth said. At the high school, her friend Jackie bumped her manual wheelchair down two wide steps in the music room. One day, a small wheel turned sideways. After the girls tumbled to the floor, they burst out laughing. Beth, 14 years old, described the scene soon after it happened. “My choir teacher pretty much freaked out at first and he got me back into my chair really fast. It was funny!” The concerned choir director offered to change where Beth sat to avoid the steps, but she declined. Like Ben and Maria, she had inherited perfect pitch, probably from their grandmothers who had sung for weddings in times gone by. During my recent trips to volleyball tournaments, long drives, I loved how my girls had belted out their favorite songs with the radio. After the accident, Beth’s lung capacity limited the strength of her voice, but not her love of music and singing. I drove Beth to Green Springs three times a week after school. The physical therapists reminded my tired and pale daughter to take care of herself. She wasn’t getting enough sleep. By the time we arrived home on therapy days and ate a late dinner, the evenings barely allowed for the extra time needed for routine tasks like showering and too much homework. Marathon days for a newly injured teenager with quadriplegia. I struggled to keep up, too: bone-tired, hurting, and deeply sad. Laraine asked us to help with a teaching seminar for therapists, the first of many, on a Saturday. “I call on Beth to talk to newly-injured spinal cord patients,” Laraine said. “Her skills inspire them and her attitude is positive and motivating.” One of the therapists asked me what they could do to support parents. I responded that taking good care of our children was the best gift. I didn’t try to explain my tunnel vision, with no light at the end. At that point, I wanted to have hope, but I couldn’t see past my guilt. The therapists also had questions for Beth. “Most people dread hospitals and hate them. I don’t,” she said. “I have met many great people in hospitals. The St. Francis Rehab Hospital is my second home and my physical therapists are like family. Some may look back on my initial days at St. Vincents with depression and grief, but my experience was positive, except maybe the first day. To me, hospitals are not places of sadness.“ For the main part of the teaching seminar, Beth followed the initial steps of every workout and struggled to get on the mat table. Her favorite therapist assisted and described the muscle mechanics of the exercises. “Beth still faces many new challenges,” Laraine said. “I know she is up to the task.” (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) In early December, the annual Christmas party of the spinal cord injury group filled a big hall in Toledo. Beth made a frequent request: to not park in a handicapped space. We left the space for those who needed it more. Other parents offered me effortless conversation. We lived in the same world, one with the added dimension of disability. I heard stories of spina bifida, cerebral palsy, spinal cord injury, and multiple sclerosis, of wins and losses. Surrounded by significant disability, my emotional battle seemed pathetic. Despite the obvious perspective, my depression wouldn’t budge and generated senseless comparisons. A wide gulf separated two typical hands with ten functioning digits from two paralyzed hands like Beth’s, with one finger she could move a little bit. Another contrast: the ability to stand for at least a few moments made transfers and changing clothes a cinch—in comparison to her inability to bear any amount of weight. Our new friends at the party understood the complexity of movement. They also knew that Beth's dimpled smile did not negate the many challenges of quadriplegia. “No amount of smiling at a flight of stairs has ever made it turn into a ramp,” said Stella Young, a disability advocate. The saying on one of Beth’s t-shirts read, “Stairs, the Final Frontier.” I expected to hold my daughter's plate at the buffet line, but she put a plate on her lap and let me help only with items she couldn’t reach. Then, for the first time, she picked up an open cup full of punch that dripped over the top as her left hand compressed the plastic with the tenodesis grip. The bottom side of the same hand slightly pushed one of the big wheels, while the right hand moved the chair forward, since one-handed wheeling turned a chair in circles. Nervous, I tried to assist with a gentle push and she immediately said, “Don’t.” She willingly accepted the inevitability of small spills along the way and the bigger risk of dropping it. I followed her slow progress to a nearby table where she concentrated on releasing the cup with care. A minute later, Beth picked up the wet cup to take a drink. It slipped from her grasp, the liquid pooling on and off the table. I cleaned it up and set another full cup in front of her—without asking first. After the party, Beth’s new anxiety with night driving surfaced. I encouraged her to close her eyes and rest. She couldn’t relax. I didn't like driving in the dark, either, but I focused on getting home safely and started her new N’Sync Christmas CD. We sang along, quietly. |
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