(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
After Beth’s high school graduation, a nonstop summer swept us away. Swim training fit in-between time with friends. She wore new contact lenses, pleased when she practiced and figured out how to put them in and out on her own with uncooperative hands. In Columbus, Beth helped Coach Peggy with an adapted demonstration for Ohio Swimming coaches. From there, we drove across town to her second Youth Leadership Forum (YLF) for students with a disability. As a staff assistant instead of a delegate, Beth made it her first completely independent trip of five consecutive days. No small feat with a C6-7 spinal cord injury, even with an accessible hotel room. The day after YLF ended, she had one night at home before her flight from Cleveland to Washington, DC, for her first National Youth Leadership Network conference for youth with a disability. “It was my first independent flight,” Beth said. “I’m not sure why, probably just something new and being nervous, but I got teary when Mom left me at security.” On the jetbridge, Beth instructed staff on how to lift her to the narrow aisle chair. They waited while she broke her leg spasms on her own. She helped with the seatbelts and held her arms tucked in as they pushed her down the aisle of the plane to her seat. They stowed her wheelchair underneath with the luggage, minus the cushion and sideguards. When the plane landed, she waited until the rest of the passengers left, reclaimed her wheelchair, and met her contact in baggage claim. A van with a lift waited to take her to the conference. I breathed easier after her phone call from a nice hotel. I had stressed needlessly. Her experience in DC made the stress of the solo flight worthwhile. “When I represented Ohio at the national conference,” Beth said. “I came to understand that the Americans with Disabilities Act and the work of the early pioneers in disability rights was far from over.” “My generation has grown up since the ADA so it’s easy to take it for granted, because we didn’t have to fight for it. Learning from the people who did have to fight and listening to their stories was empowering.” Next: An unexpected new role on a college team!
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(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth added the song Jump by Van Halen to her music mix at Peggy’s suggestion. At local USA Swimming summer meets, many swimmers wore ear buds and held iPods as they waited to compete. Beth was the only one in a wheelchair—with the perk of a lap to carry the iPod on top of her towel and goggles—but not the only teenager with a disability. In my support role as the Adapted Chairperson of the Ohio Swimming Board of Directors, I talked to other swimmers with visual challenges and limb differences. The teenagers with a disability at those USA Swimming meets had no competition, with no one else in their classification in attendance. They swam in full heats with able-bodied peers who always touched the ending wall before them. Each of them, my daughter included, raced the clock. At a meet in Canton, Ohio, I cheered as Beth reset three American Records and added a brand-new one in the 200 Individual Medley. During a SAK practice at the outdoor pool, dark clouds brewed. I waited at the pool, knowing that the approaching storm would trigger Beth’s tornado anxiety. At the first distant rumblings, she asked to get out of the water. She couldn’t get out and into her wheelchair by herself. Peggy stuck to her club policy and kept the practice running until the siren blared, indicating lightning in the vicinity. That was the only time Beth was not happy with her coach. A time she remembered and teased Peggy about later. Beth wheeled through rain to the car as lightning streaked the sky. We couldn’t get home fast enough. Her trauma abated after she immediately checked the computer to confirm the absence of tornadoes in Tiffin. An Ohio girl, tornadoes didn’t trigger anxiety for me, but other things bothered me. I worried about my job, about the residents at the group home I managed and what might happen next. At home, Beth’s transition to college dominated my thoughts. And living in a strange city by myself in the fall. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth’s third swimming summer began with a task she could put off no longer. She called and talked to the GTAC coach about her decision to change teams. Stressful, despite our gratitude for Beth's first club team and the practicality of swimming with a hometown coach. Peggy coached her individually during one-on-one sessions in addition to regular Seneca Aquatic Klub practices. Beth swam with familiar faces from the high school team and formed new friendships with Peggy’s daughters, both college swimmers who helped with the club team. The close-knit, small-town swim team celebrated with a thrilled Beth after she swam her first mile in one practice: 1,760 yards, over 70 lengths of the 25-yard pool. I watched her finish the feat, marveling at what she accomplished with no leg function. In intensive care after the accident, none of us—not even Beth—imagined her in a pool by herself. Or floating. Or swimming actual strokes. Or competing. Or achieving her first mile in one practice, the first of many. On a beautiful day in mid-June, family and friends gathered at our home. John and I hosted a party for Ben and Beth, both graduating with honors. Ben earned two degrees, in English and physics, from Ohio State. I set out Beth’s summer scrapbook and other memorabilia. A plain binder held many awards and scholarship letters, including one for $5,000 from the ChairScholars Foundation, renewable for four years. A reference letter from a high school staff favorite, Mrs. Roberts, summed up the four years since Beth's spinal cord injury. “The mild-mannered, quiet, bright little girl we met as an incoming freshman has grown into an assertive yet humble young woman. Beth is in a wheelchair but is by no means wheelchair bound." (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
We loved the familiar Minneapolis pool complex, a short walk/wheel across the hotel parking lot in brisk April weather. We arrived early on the first competition day for Beth’s first U.S. Paralympic Trials meet. Through warm-ups in a packed pool, driving beats of loud music accented the nervous tension. Beth, wired and ready for her first race, entered the pool from a side corner and dunked under the plastic dividers to get to her lane. Peggy lay flat on her stomach next to the starting block with her shoulders and her head over the pool, reaching down to grab slippery, wet legs. Wearing a Toledo swim cap, Beth floated parallel to the lane lines, her feet touching the wall. Patient practice had resulted in her ability to be still for many long seconds before the official start of the race. the timing crucial. Peggy could only release her ankles—no pushing or helping. About 5’8” tall, Beth erased about a second off each lap of the backstroke, freestyle, and breaststroke with the assisted foot start. Vital seconds. I held my breath as Beth reset her previous American Records in the backstroke for the 100 and 200 free. A great swim! Unfortunately, new records were not sure tickets onto the Paralympics team for an S3 swimmer. The 50 free long course, the hardest S3 record to beat, remained far out of reach as her forward freestyle improved incrementally. Team USA would be in Greece for almost all of September. Peggy requested a meeting to find out if the Athens Paralympics might be possible for Beth. We learned she could be in Greece for the first part of September and return to the U.S. as college classes started. Though missing freshman orientation at Harvard would be necessary. If she made the team. The only S3 female at the meet, again, Beth collected 5 national medals. Our flights east would leave before the team announcement ceremony Sunday morning. After finals on Saturday, the manager called Beth to invite us to her hotel room. I hurried to keep up as she wheeled down a long hall and knocked on a door hesitantly. The smile that greeted us confirmed good news. Beth earned a spot on the team! She could compete in 3 races in Greece, her first trip overseas, before leaving mid-September to start classes at Harvard. Back in the hallway, Beth called her swim coaches while I shared the news with John. Peggy suggested ice cream to celebrate. She officially initiated the longstanding tradition we observed in cities near and far after every swim meet. Over swirls of chocolate, Beth’s enthusiasm flowed with the promise of adventure as an official Paralympian. Next: Flight to Boston! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth decided to switch club teams from Toledo’s GTAC to the Seneca Aquatic Klub (SAK). Her friends from the high school team also swam for SAK. They practiced down the street from our home in Tiffin, compared to an hour drive to Toledo. The tough part would be telling Beth’s first swim coaches at GTAC. They supported her initial attempts to learn new strokes when it looked impossible to me. She planned to tell them about switching teams at her next practice. When we left intensive care, the doctor placed no restrictions on swimming. Still recovering, Beth insisted on driving to Toledo with me a week later for a swim practice. After a few laps, she felt nauseous, but only asked to get out of the pool to use the restroom. She did not elaborate, complain, or make an excuse. The coach teased and called her a wimp. He honestly didn’t know it was possibly the worst thing to say to a teenage quad, especially one like Beth who was sensitive to appearing weak. In the locker room, I handed her tissues to wipe her eyes. She asked me not to mention the insult or her nausea. I urged her to leave with me for home, but she returned to the workout and actually did wimp out on breaking the news about changing teams. At home, I encouraged Beth to make the phone call to GTAC. A talented procrastinator, she decided to put off telling them until after the Paralympic Trials meet in April. To give them the credit on the chance she made the Athens Paralympic team. Even if she earned a spot, not a sure thing, September in Greece would interfere with Harvard. Should I hope Beth would qualify for the '04 Paralympics? Perhaps not. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth felt ready to race with her high school team at the Sectional Championships. She swam the 50 freestyle in a fast 1:13.40, a short-course American Record in her S3 classification. Or, it would have been, except the officials messed up and the meet was not sanctioned, despite Coach Peggy’s advance request. The fastest swimmers at Sectionals advanced to the District Championships the following weekend. Someone with a physical disability like Beth had no chance of qualifying for the District meet. She planned to go to cheer on her teammates, but Peggy told her to bring her swimsuit and goggles. Since the District meet definitely would be sanctioned, the rest of Beth’s high school team unanimously voted to give her one of their relay slots so she could set her first two short-course American Records. The girls on the relay team gave up their chance to win because of the substitution. In the locker room, I helped Beth into her swimsuit while she stressed about their sacrifice. She also thought her high school season had ended the week before. It didn’t help when the meet announcer told everyone in the packed natatorium about her potential records before her relay started. Beth entered the pool from the side and swam to her lane. Meanwhile, Peggy moved into position, stomach down on the deck with her head over the water. Peggy reached low to grab Beth’s feet and hold them to the starting wall, a legal start for a swimmer with limited hand function. Repeated trials had determined the intricate details of Beth’s optimum position to start each stroke. An arm straight or bent, trunk angled or supine, and the mechanics of floating motionless until the starting buzzer. In the first leg of the 400 relay, Beth achieved her first two official short-course Paralympic S3 American Records, drawing enthusiastic applause from the large crowd. However, with the added stress, her time in the 50 free clocked in nine seconds slower than the week before, and the 100 free at seventeen seconds slower. Beth never asked for recognition, but hearing her new American Records announced at school on Monday morning was a nice surprise. Next: A Sudden Emergency! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
The annual New Year’s Eve bash with Ellen and Lizzy involved more fondue and more treats. How easily the seventeen-year-olds laughed while watching the Grinch movie. Listening to them, there was no way of knowing that one of them had a severe physical disability. John and I toasted the New Year with gratitude and discussed how Beth’s injury had never been a tragedy—for her. We believed she had a better than average chance to contribute and be happy. My disability-related worries looped through the days. They could be condensed down to health risks and one big question: What kind of welcome would a young quad receive from a superficial world? I bought Beth a Harvard sweatshirt online for a Christmas gift. When she wore it to school in January, her classmates and teachers found out about her college choice, if they asked. Beth asked to attend Harvard’s admitted students weekend, even though she had already accepted. I agreed and scheduled meetings at the Harvard disability services office to figure out exactly how it would work. I had already booked flights to Minneapolis for the US Paralympic Trials in April, so I changed our flights home from Trials to take us directly to Boston for the Harvard weekend. Beth’s senior spring filled up our calendar with exciting trips and important events. As the end of the high school swim season approached, Peggy adjusted the specifics of training over weeks to promote fast times at the final meets. (‘Tapering’ workouts.) The girls stopped shaving their legs. Some practices added ankle weights. One evening at the YMCA, Beth wore street clothes and shoes in the water along with the rest of the team. Then, the night before the Sectional Championship Meet, the girls shaved their legs. The boys on the team chose to shave their heads in solidarity. All of this was new to us, as well as the excitement to follow. Next: District Championships! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
In early December, a long-awaited email changed our course. Beth’s unexpected acceptance to Harvard College launched another shift in the horizon for my family. After reading the email, she lowered herself to the living room floor in her lift chair. Lying on her back, she spread out her arms, closed her eyes, and smiled. Incredulous, I watched my jubilant daughter. What would happen next? She had planned to send out more college applications. A few days later, Beth told me she didn’t want to apply anywhere else. She said that if she didn’t attend Harvard, she would always wonder what might have been. John and I decided to make it happen. Tuition would be $27,448 for the 2004-2005 school year. Add room and board plus fees for a total of $39,880. Plus travel costs and my living expenses off-campus. John and I intended to borrow money on our home, though four years of Harvard would cost more than it was worth. Beth applied for more college scholarships. She chose not to broadcast the acceptance beyond her family and best friends. For the first swim meet of the high school season, the girls on the Tiffin team painted their nails in school colors, blue and gold. I drove with Beth to the away meet since an accessible bus wasn’t available for the swim team. A flight of steps led down to the pool and parents watched from a higher level. Beth shared the safest way to move her manual wheelchair on stairs with two teammates. We learned that high school competitions ran like USA Swimming meets, but on a much smaller and less formal scale. Everyone seemed to stare at the girl in the wheelchair, but Beth didn’t let it bother her. In the 100-yard butterfly, she finished third—one of three swimmers in the race. “I was able to score quite a few points in high school. My coach put me in the harder events that nobody wanted to do, like the butterfly. Since the top three swimmers scored, as long as I finished I would score points.” After the meet, Beth hurried and left the locker room just after the rest of the team. She found herself alone by the pool, so I bumped her up the steps. Peggy and the team apologized a few minutes later in the lobby, but I completely understood. My youngest made it easy to forget she used a wheelchair. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
I had stayed through my daughter Beth’s first high school swim team practice, in case she needed my help. She didn't. So for all the others, John or I dropped her off at the entrance of the YMCA, left, and returned later in the evening to wait for her after practice. Changing in her wheelchair on her own was time-consuming at first, even loose sweatpants over a wet swimsuit. She usually wheeled out the YMCA door into a nearly empty parking lot. Officials with the U.S. Anti-Doping Agency interrupted a high school practice for one of Beth’s random drug tests, her first outside of a national meet. Her teammates were impressed. We sent in another quarterly report for USADA with her location at all times, as she would for the next five years as a member of the U.S. Paralympics Swimming National Team. Letters arrived periodically to verify she passed the tests. I submitted the extra paperwork and doctor signatures to allow for her one prescription, advair, to keep her asthma symptoms in check. Routine tests in Toledo showed small, but steady gains in lung capacity. “It pushes her to train with us, and it pushes the other kids because it’s taught them that all things are possible,” Coach Peggy said. Peggy met Beth for an additional practice at the YMCA most weeks, so we rarely made it to the Toledo pool. I arranged my work hours at the group home to be available for swim meets. The once-a-year USA Swimming Disability Championships evolved into Can-Am Paralympic meets twice a year, one in the U.S. and one in Canada. The United States also hosted a special Trials meet every four years before the Paralympics. At a Can-Am meet in Indianapolis in November, my daughter earned two American Records in the 100 and 200 freestyle. “Three years ago, the only way I could swim was with two physical therapists holding me in the water,” Beth said. “Since then, swimming has become a significant part of my life.” I made travel plans for the April Trials meet five months ahead, though we didn't know if Beth would qualify for the 2004 Paralympics. Or if September in Athens would be an option with whatever college she would attend. What we did know: women in the S3 classification would be cut to only three events in Greece, the 50 and 100 free, and the 50 back. The reason? The small number of S3 swimmers in the world. It made no sense to me to restrict exceptional athletes who dealt with enough limits from severe disabilities. Beth moved up the International Paralympic Committee World Rankings to tenth or better in several events, including the individual medley. Many S3 swimmers struggled with long races. She pushed herself farther at every swim practice. The greater the race distance, the higher her world ranking. However, the 100 free would be the longest event for S3 swimmers at the ultimate competition held every four years—the Paralympics. “My favorite event is the freestyle,” Beth said, “but fewer people who have (severe) disabilities can do the butterfly and breaststroke, so I’m grateful I can.” The strokes she was grateful for also would not be an option at the Paralympics for S3 swimmers. The unfair cuts frustrated me, while Beth resigned herself to more restrictions and carried on. Next: a monumental change of direction! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth’s wheelchair didn’t rule out anything she really wanted to do. At 17, she started a dozen college scholarship applications and competed on the quiz bowl team. She continually volunteered with different groups, including the Tiffin student athletes who visited elementary schools. A Paralympic coach asked Beth to mentor a teenager from Seattle with a new spinal cord injury. The girls exchanged emails about wheelchairs and prom dresses. At the first practice of the season for the high school swim team, I sat on the YMCA bleachers with a book in case Beth needed me. I usually put on her swim cap—after she tried to do it by herself first—and lowered her from the wheelchair to the deck. Coach Peggy competently took over the tasks. Each swimmer carried a net bag with workout gear. In Beth’s, the typical flat paddles had been cut to a smaller size to fit her hands, with the flexible tubes adjusted to hold the paddles in place. Floating aids strapped on with Velcro. She also utilized a tempo trainer, a battery-operated device the size of a watch face. It worked like a metronome from music class, clicking out the ideal pace. I couldn’t imagine a better coach than Peggy. She modified the team’s workout with creative variations to avoid too much stress on specific arm and shoulder muscles. She also supervised circle turns. Beth couldn’t flip at the wall and push off with her feet like her teammates could. To finish a lap, she approached the wall at the left side of the lane, pushed off with one hand, and completed the half circle to start another lap. “Walls are bad for me,” Beth said. The fewer walls in a race, the faster her times. High school competitions took place in short-course, 25-yard pools. A 100-yard race required three circle turns at the walls. At the end of the first high school team practice, Beth swam to a corner of the pool. With her back to the corner, she placed her hands on the low deck to lift herself out of the water to a sitting position. She tried a few times, almost making it, before being lifted out. She always needed help to get from the deck to her wheelchair and didn’t mind when the boys on the team volunteered. I caught up with her on the way to the locker room, expecting to assist. Beth decided to go it alone for the first time and declined politely. She joined the rest of the girls in the locker room. I waited impatiently in the lobby, wondering if she changed her mind. Sitting in her wheelchair, Beth lifted a knee with her wrist to raise a foot. The opposite hand guided one side of her sweatpants over the dangling foot, before shifting to do the same for the other side. With the goal of placing her feet back on the chair rest with the pants bunched up around both ankles. Eventually, she used her fists and the one finger she could control to slowly pull the sweats up and over her knees. When the pants reached her thighs, she rocked from side to side to continue the prolonged fight. Next, she scooted forward and leaned her shoulders on the back of the chair. Anchored, she lifted her bottom up a few inches to pull the sweats all the way up—inch by inch. In the meantime, the rest of her team showered, changed, and left the YMCA, I found her in the locker room with the sweatpants mostly on. Beth’s first after-swimming solution for independence? Put on baggy sweatpants over a wet suit and then leave to shower at home. Easier said than done. Next: Travel Plans! |
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