(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
My last weeks in Cambridge as a personal care assistant and Harvard Coop employee ended with easy goodbyes. I loaded the car—twice—with Beth’s backup wheelchair, single futon, lift chair, floor lamp, refrigerator and microwave unit, and more. I labeled everything and pushed my limits by moving the items by myself to the basement storage room at the upperclass house (dorm) where she would live in the fall. Everything hurt after. I scribed for the student with cerebral palsy for the last time as Beth finished her final exams and swam her last practice at Blodgett until September. We watched colorful dragon boats race on the Charles River before I packed the car for the long drive to Ohio. I couldn’t wait to be back home for the summer and planned to appreciate every minute. The upcoming school year, John and I would have an empty nest in Tiffin with Beth at Harvard, Ben in Columbus, and Maria graduating early in December to work in Boston near her sister. I wanted my kids to find their own way in life, but at the same time, I wished they could live with me forever. Feeling sorry for myself sparked a radical idea: moving to the Boston area if John retired in two years, after 30 years of teaching in Ohio. Maybe. Summer vacation officially started with an additional five-hour drive to Chicago for the wedding of Rakhi’s brother. The short drive seemed easy after the trek from Boston. I loved our road trips in Beth’s blue car with CDs and sing alongs. At one of the wedding events, I wore a long blue dress with a tunic top to a beautiful ceremony. At the evening garba, Beth danced in a short sequined top that bared her midriff above a matching ankle-length skirt, a gift made in India from Rakhi’s parents. We found out at the garba that a woman with a bare midriff meant she was looking for love. I never tired of adding to Beth’s contagious laughter. Back in Tiffin, Beth reunited with her best friends, Ellen and Lizzy, not knowing it would be one of their last summers together. Maria gave Beth a special gift, a beautiful sunflower quilted wall hanging that she sewed for a college class on women’s traditions. Last spring, John attended presentations at Heidelberg when the students spoke about their quilts. I wished I could have heard Maria talk about her sister’s favorite flower and the passion for life they shared. When I lived in Cambridge, I also missed hearing my oldest daughter sing at Heidelberg choir concerts. I wouldn’t miss any more of her solos. Seneca Aquatic Klub practices filled Beth’s calendar for her fourth swimming summer. Peggy showed us an underwater video from the previous summer with sloppy strokes. A recent one with smoother movements reinforced Beth’s belief that mastering the forward freestyle stroke was doable. Two teammates lifted her in and out of the pool as they had for high school practices. One morning, they carried her out to the diving board—under protest. Her attempt to enter the water gracefully ended in a belly flop, but she didn’t lose any sleep over her lack of diving skills. Next: Norway!
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(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
A surprising event highlighted our spring. On college teams, athletes with any kind of disability were very rare. After her freshman year, Beth hoped to continue as manager of the swim team with the privilege of practicing with members twice a week. Instead, Coach Morawski asked her to be an official member on the roster of the Harvard Women’s Swimming and Diving team. The invitation was a gift she hadn’t expected, serendipity in its purest form. All the more treasured because she would be the first member of the team with a visible disability. The first quadriplegic. The first wheelchair user. “As a swimmer with a disability going into a Division 1 school,” Beth said, “I didn't know how I would be welcomed because I am not going to be able to score points.” “We were not sure how it was going to work.” Coach Morawski told a reporter from the NCAA Champions magazine. “Everyone is absolutely impressed by her.” Elated, Beth added, “I had no idea Harvard would accept someone with a fairly severe physical disability on the team.” Only Beth could refer to quadriplegia as fairly severe! As tulips bloomed randomly in Harvard Yard, I talked to Beth on the phone about every other day and we met each week for lunch. We’d split a turkey sandwich and two small chocolate desserts at our favorite spot, Finale. After, we stopped at the Brattle Square Florist where I bought a few sunflowers, her favorite flower. She kept them in a vase on her desk. Rakhi surprised Beth with a small birthday party at Finale with a beautiful chocolate cake. Soon after, Beth’s best friends from high school visited with one of their moms. Ellen and Lizzy camped out in Beth’s dorm room while the mom stayed with me in my apartment. We all watched Beth practice at Blodgett before exploring Boston. We walked the Freedom Trail to the Holocaust Memorial and headed to the Prudential Center. We rode the elevator past the expensive Skywalk viewing level and stopped at the Top of the Hub restaurant on the fifty-second floor, to admire the sunset. Glass walls offered a beautiful panoramic view. On a budget, we sat at a table in the bar instead of ordering pricey food at the restaurant. Underage, the three girls drank sodas and we shared a plate of cookies. Lizzy amazed us by pointing out landmarks and neighborhoods in every direction, even though it was her first time in Boston. Next: Swim Trips to Michigan and England! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
After the first weeks of practices, the head coach asked Beth to swim with the college team twice a week (up from once a week), plus two practices one-on-one with the assistant coach. With lane space an issue during team practices, Beth learned to stay to one side in the lane, shared with a teammate who passed her often. In Blodgett's public locker room, Beth removed her seat cushion and backpack before showering in her wheelchair (and soaking the wheel bearings) after every practice. I offered to buy a plastic shower chair for the locker room. Instead, she decided to ask the coach for one, but put it off. Always reluctant to ask for anything special. When the wheel bearings needed to be replaced, the wheels stopped moving freely, catching and sticking. I drove her wheelchair regularly to a repair shop in the next town to the west, Belmont, where they replaced the expensive bearings. The challenges for Beth of removing a wet swimsuit, showering, and dressing in her chair very slowly became slightly easier. At first, when she had class soon after practice, she wore sweatpants instead of her usual jeans. One weekday evening, Beth joined the Harvard team on an excursion to a Boston club to support two teammates in a burrito-eating contest. She heard a joke with an element of truth: The main reason to swim on a college team? To eat anything they wanted! ;-) The T stop closest to the club had no elevator, meaning Beth stayed on the subway and rode past it to the next stop, then backtracked several blocks. Two swimmers walked the extra distance with her. At the club, Harvard football players carried her up a flight of steps. The two girls in the contest ended up in second place at the end of a late evening. On the way back, Beth joined the group at the closest, inaccessible T stop and the football players carried her on the steps. Stretched thin, Beth joined the other swimmers only hours later for an early morning practice, commiserating over their exhaustion and sharing plans for naps. Next: My strange new Cambridge life . . . (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Before freshman orientation ended, Beth wheeled over to Harvard’s Phillips Brooks House Volunteer Fair. She chose the Kids with Special Needs Achievement Program (KSNAP), to help students with disabilities at an inner city Boston school. She didn’t think twice about getting to the big city once a week. She volunteered in a special education classroom every Friday afternoon and took turns with other students to plan and purchase materials for activities. Beth soon discovered the unpredictability of old elevators on the MBTA subway, called the ‘T’ for short. Other KSNAP volunteers, including her friend Brittany, moved her (in her manual wheelchair) up and down steps and escalators. Thank goodness John and I weren’t there to watch! We were grateful our youngest didn’t let obstacles get in her way, but we also worried about her safety. As Beth started classes, a swimmer from Michigan asked her to mentor a girl with a new spinal cord injury. When I heard about the emails they exchanged, Beth said, “I love mentoring!” At the Coop, I stood at a cash register in textbooks as students lined up to the back wall. While veteran staff supervised, eight of us, all new employees, rang up large bills at eight cash registers. We commiserated about our sore backs after the long shift. One evening, I worked at a cash register while Beth and Rakhi stood in a long line. On my day off, I returned to textbooks with Beth and carried a heavy stack. Her books included several thick novels for a Charles Dickens freshman seminar, her favorite class. Beth and seven other students accompanied their professor, a Dickens expert, to the catacombs of the rare book library to look at signed first editions of Dickens' books. The depths of the Widener library had not been exaggerated. When the money had been donated to build the impressive library (with over 50 miles of shelves), there were conditions. None of the original bricks could be removed on the façade. The second stipulation: all Harvard students were required to pass a swim test. Harry Widener drowned on the Titanic and his mother thought he would have survived if he had known how to swim. Hence her condition with the donation for the memorial library. The irony of it all? The swimming requirement ended because of the Americans with Disabilities Act, passed in 1990. My daughter Beth, a Harvard student with a severe disability, could easily pass a swim test. My limbs worked fine, but I probably couldn’t. Next: First laps with HWSD! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
It seemed like a good plan. While Beth started her freshman year at Harvard, I would live off-campus for transition support. The summer rushed by and I still needed to find a place to stay. Rundown studio apartments in Cambridge started at about $1,400 a month in 2004, so I decided to rent a room instead. I found a rare bargain several blocks from Harvard: one of two bedrooms in a tiny apartment for $600 a month. I’d share the space with a young woman, a church organist, from Ohio. Small world. Late in August, Beth and her close friends met for breakfast on the day Lizzy left for college. They each chose different schools in three states. Her friends wore rings engraved with the word HOPE, the same one they gave Beth after her injury. The same one she never took off. Ellen and Lizzy had the same week off for spring break and planned to fly to Boston for their first visit to Harvard. They hugged and said teary goodbyes in the Burger King parking lot. I’d miss her friends, too, and their gift of contagious laughter. Beth wasn’t the only one saying sad goodbyes to friends and family. We prepared the best we could for our separate adventures. I anticipated what she would need and made piles along the wall in our dining room. John doubted it would all fit in Beth’s car. He was right, but the items at the top of my list made the cut. I put an old backup wheelchair in the car topper and stuffed pliable bags of towels and sheets around it. I checked my list twice, three times. A reassuring task on the brink of a college experience out of my control. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
My last day as manager of a local group home, I finished painting a small room and hugged the residents goodbye, with a promise to visit. What a relief to pass on the responsibility and to know I left everything in good order. As I packed for our girls’ trip to New York City, I couldn’t stop smiling. We crowded into Beth’s car for the eight-hour drive, singing along with popular songs on the radio. After a harrowing drive in Manhattan to the hotel, we left the car in a parking garage and explored on foot and by taxi. By our small town standards, every ride in a yellow taxi was wild, an accident waiting to happen. I secretly bought NYC taxi ornaments for the girls for Christmas gifts. In Central Park, Maria and Ellen lifted Beth into a covered carriage pulled by horses for a ride in the rain. I worried about leaving her wheelchair behind, but it was there when we returned. We enjoyed a ritzy restaurant afterward, the four of us sharing two meals to make it affordable. For dessert, we walked/wheeled to Serendipity, a cafe popularized by a movie of the same name. The steps at the entrance were surmountable, but sadly, we didn’t have enough time to wait for a table before our show. Our first Broadway play, Wicked, with the original cast, drew us in with exquisite detail in the songs, sets, costumes, and story. Unlike anything we had ever seen before. Wowed, we left the theatre with a ‘Popular’ shirt for Maria and one for Beth with her new motto, ‘Defying Gravity.’ On the drive home to Ohio, we sang Wicked songs along with a CD of Indina Menzel and Kristin Chenoweth, belting out my favorite lyric. “Everyone deserves a chance to fly!” (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.) 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! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Managing the group home escalated my headache with less sleep and a full dance card. The base level of pain had gradually increased over a dozen years. How bad would it get? Over-the-counter medications didn’t make a dent. When I tried an opiate after surgery, I felt worse, not better. A prescription anti-inflammatory muted the headache—and increased my stroke risk. I read a study about how the brain gets wired to frequent pain signals, making it difficult to break the cycle. Obviously. I made a concerted effort to stay positive and suppress my fears of higher pain. At home, I kept up with Beth and drove her to swim practices on my evenings off. She took on new roles, unafraid, including the top job of news editor of the school newspaper, The Tiffinian. A feature in the paper titled Senior Superlatives reported on a class election that voted her most likely to be President and most likely to be rich. “I didn't want both so I gave the rich title away,” Beth said, with a laugh. The votes of her classmates also put her on the Homecoming Court, surprising her. “I was shy in high school,” Beth said. “I had more fun than most, but I wasn't a cool kid.” The night of the Homecoming football game, the Court arrived at the stadium in convertibles before lining up on the track to be presented to the crowd. A problem we didn’t anticipate handed Beth a rare defeat. “I wheeled myself everywhere, but my escort wanted to push my chair across the field,” she said, while also admitting the bumpy turf was difficult. It was a standoff on the 50-yard line, her escort equally as stubborn as Beth. She reluctantly gave in. “But I kept my hands on the wheels and pushed myself at the same time!” When the pageantry ended, Beth sat with her best friends on the platform in the student section to watch the game. Ellen and Lizzy gave her a bouquet of flowers and an adorable present. They made a Build-A-Bear and dressed it up with a fancy dress, homecoming crown, magic wand, and queen banner. They had been sure Beth would win. She didn’t, and hadn’t expected to. But... The queen bear was a sweet reminder of friends always in your corner. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Summer vacation wound down. At the YMCA, Coach Peggy tackled the difficult details of the freestyle. She moved in the water with the grace of a seasoned swimmer and often joined Beth in the pool to help with technique. Learning how to swim mimicked the physical therapy process. Beth paid close attention to detailed instructions and understood the goal. Small gains and slow progress did not discourage her. She visualized the future goal and put the pieces together bit by bit. Peggy asked Beth to join the Columbian High School swim team for her senior year. I had reservations initially. I knew the team had a great coach. I wondered if Beth’s participation would be mutually beneficial or a token inclusion? A reluctant Athletic Director also needed to be convinced, especially since accessible school buses were rarely available. As a compromise, I agreed to drive with my daughter to away meets. Watching Peggy at more practices, I trusted her instincts on the merits of the high school team. “Coach Ewald was excited to work with me from the first time I met her,” Beth said, “and she’s helped me make all my strokes better.” Soon after the Alberta swim meet, Beth, 17, made the U.S. Paralympic National Swim Team, a milestone achieved much earlier than expected. We celebrated with Maria and John over frozen yogurt sundaes. Beth called Ben first with the news since he followed her progress and understood the complexities of her S3 classification. National Team status included team swimsuits and other gear, as well as stipends for training costs and specific meets. And a big stack of paperwork. Beth’s lung doctors signed a long form to allow her only asthma medication, a maintenance drug. She needed to submit training logs year round. Each practice became an official workout with a coach’s plan written in a swimming shorthand I never learned. Team status also required reports of her daily whereabouts to facilitate random drug testing through USADA, the same agency that tested Olympic athletes. In August, I dropped off Beth and her friend at a John Mayer concert in Columbus. I easily imagined them singing loudly to the invincible lyrics of No Such Thing. The girls wore hipster hats bought for the occasion. Beth donned the same canvas hat with gray stripes during the 'Fishing Without Boundaries' weekend. John and I held hands and watched our talented daughters belt out a song in harmony on the karaoke stage at the hotel. On the boat the next day, Beth caught more Lake Erie perch than her dad for the second year in a row. NEXT! Wrapping up a non-stop summer: Fifteen Notable Firsts! |
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