(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Many community festivals in Harvard Square attracted overflowing crowds that spilled into and closed the streets. The HONK! Parade during Oktoberfest was unlike anything I had seen. Think Dr. Seuss with brass horns, stilts, unicycles, and bikes! The event attracted costumed brass bands from around the country and the world. Not long after, I worked at the Coop during the Head of the Charles Regatta, the world’s largest two-day rowing event. With too many bodies in Harvard Square on a normal day, the regatta tipped the crowd to a crazy level and swamped the stores. At the end of my work shift, exhausted, I gladly left the colossal mess of clothes behind. It required several days to restock and put the displays back in order. On October 27th, Boston’s Red Sox won the World Series for the first time in eighty-six years. Harvard students replaced the pumpkin on the head of the John Harvard statue with a Red Sox stocking cap and scarf. In Harvard Square, students and locals joined together for a party. Beth braved the crowd for a short while, as people danced on the roof of the Harvard T stop. She returned to her dorm to study while the loud celebration continued. John teased and called Beth a lucky charm, since she moved to the area right before the big win. Maria and Ben traveled to Boston for the first time with John to join Beth and me for Thanksgiving weekend and the holiday dinner at Legal Seafood. I bought tickets for The Lion King, on tour from Broadway. A work of genius in every way, from the set to the costumes. And, of course, we also had to see the fourth Harry Potter movie The Goblet of Fire, before we hugged goodbye too soon. Beth’s ventures continued to impact family and friends in unexpected ways. Soon after her Boston trip, Maria shared her big life-changing decision with us. A college sophomore, she planned to graduate with a double major from Heidelberg in Ohio—and when she did, she would move near Beth to teach. I supported her decision, though it made me sad to think of both of my girls in Massachusetts in the future, more than 700 miles away from John and me in our Tiffin hometown. I understood the draw of the Cambridge area. I had never been in another city as vibrant. A place that charmed with old-world history and diverse humanity, all the while assaulting the senses with too many emergency vehicles, taxis, cars, and bikes. A place that also isolated and challenged me every day for the nine months I lived there. Next: A Third Job!
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(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.)
In July, Maria prepared for the lead role in Kiss Me Kate! at Tiffin's Ritz Theatre. Opening weekend, we hosted a cookout in our jungle of a backyard. The dramatic transformation from grass to garden featured fast growing poplars, butterfly bushes, a small pond, and colorful blooms of flowers I couldn’t begin to identify. The beautiful variety of hostas had been gifts from my grandma’s farm and my brother’s garden. John called the garden his therapy. I acquired poison ivy easily, a fact that provided me with a convenient excuse to avoid weeding. Even without an excuse, the group home demanded my time as I trained a new manager and prepared to leave everything in good order. The same day as our cookout, we filled up the front row of the theater with our extended family to see Kiss Me Kate! When the play ended we jumped up, the first to our feet for the standing ovation. My talented Maria had another weekend of performances and an additional new job as an admission tour guide for Heidelberg College. She stayed home while John drove with Beth and me from Ohio to Massachusetts for his first Harvard visit. At Peggy’s suggestion, we met with the head coach of the Harvard Women’s Swimming and Diving team. We had heard about Caroline Miller, a deaf swimmer on the Harvard team who graduated in 1996, but we understood a quad had no hope of finishing a college race in the top three at any meet. “I needed a pool to swim,” Beth said. Coach Morawski congratulated her on National Team status and mentioned limited lane space during team practices and how their workouts could overtax the upper body of a paralyzed swimmer. All valid concerns. At that point, we thought the meeting was over. An unexpected invitation followed when the coach offered the position of team manager to Beth. As manager, she could practice once a week with the team and swim a second time each week with the team's assistant coach. More than anticipated, Beth happily agreed and planned to swim additional days each week on her own. Our next stop: the disability services office, Beth and I interviewed prospects for an assistant. A friendly graduate student named Rakhi would share Beth’s dorm room in September. In Harvard Square, talented street performers entertained us. We listened to an older gentleman play an unusual string instrument. I added coins to the Kleenex box he set out for tips. We bought a few books at the Harvard Coop and ended the trip with our first meal at Legal Seafood in Kendall Square. We shared a Boston cream pie for dessert and posed for pictures by the fish sculpture near the entrance. On the way back to our hotel, Beth showed John how to start the unique chimes in the Kendall Square T station. We left metal tubes singing between the trains. Next: NYC! (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! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
The morning after Beth’s exciting Greece news, we arrived at the Minneapolis airport early. John couldn’t miss more school, so he flew home to Ohio. Beth and I landed in Boston for Harvard’s weekend for admitted students. We found our way to information sessions, welcoming with every detail. Enclosed within a tall wrought iron fence, Harvard Yard housed freshmen dorms, classroom buildings, libraries, grand offices, and the John Harvard statue, all brimming with historical significance. Under a canopy of ancient trees, tourists speaking many languages flocked to the statue, rubbing a buckled shoe for luck. Over in Harvard Square, to the south and east of the Yard, street musicians performed amid shops and restaurants. People had gathered there since 1630. We bought chocolate treats at Finale. We browsed at Mint Julep, a boutique destined to become Beth's favorite dress shop. The Square embodied interesting contrasts: a tattooed teenager with many piercings, a veiled tourist with only her eyes showing, an elderly Asian gentleman playing a simple string instrument, a man dressed for a yacht ride, a homeless woman with long dreadlocks, and a rich woman in diamonds and furs. Beth and I were a world away from our small Ohio town. We met with Harvard‘s director of disability services. She offered Beth accessible housing in a freshman dorm with a two-bedroom unit, the second one for a personal care assistant. Beth agreed to the plan for her first year and would return to Cambridge in the summer to interview prospects for the assistant position. Ohio Rehabilitation Services wouldn’t help with Beth’s tuition for an out-of-state college. However, Harvard unveiled a new financial aid initiative to cover all college costs for students from low-income families. John and I both worked full-time and he had additional income from summer school, all reported on our tax forms, so the fact that we qualified surprised us. Our combined salaries met their criteria for low-income families. As a result, our money worries about Beth’s college expenses ended unexpectedly. We felt incredibly thankful and fortunate—despite being poor by Harvard’s standards. Next: Overseas Travel Plans! (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.) At the Edmonton, Alberta swim meet, Beth met the other S3 women from Germany, Norway, Denmark, and Mexico. The women from Mexico and Germany held the top spots in the World Rankings; to race, they left their wheelchairs behind to stand and walk a step or two to the starting blocks. Their coaches helped them climb on and prepare to dive in. My daughter started the race in the water with an ineffectual push off the wall. With the tough competition, Beth didn’t expect to earn a medal for a top three finish. Also unexpected: the swimmer in the next lane stayed in her field of vision, sparking momentum. For the very first time in her life, she experienced how it felt to see and to race a true competitor, to beat her to the finish by less than a second, and to earn a third place international medal. Beth surprised us next with second place in the 100-meter freestyle race. Right after, officials tagged her for her first drug testing. They worked for the United States Anti-Doping Agency (USADA), the same agency that tested Olympic athletes. Officials stayed close by as a Team USA coach supervised her cool down laps in a separate small pool. From there, Beth participated in her first ceremony for an international medal. Next, the coach explained the test procedure and walked with her while USADA officials led the way off the deck. In the 100- and 200-meter events, Beth finished ahead of the S3 women from Germany and Mexico. She started to think of herself as a distance swimmer. The five S3 women in Alberta, Beth included, swam slower than their previous best times. Small health issues like spasms, skin scrapes, minor infections, and low-grade fevers had a bigger effect on those with severe disabilities compared to others who did not. Temperature changes impacted quads in a negative way, as well as not drinking enough water. The physical stress of traveling and time changes also factored in, one of the reasons that teams going to the Paralympics every four years arrived in the area weeks ahead of the actual event. Beth rested in between the sessions of the three-day meet. No sight-seeing in Edmonton, except for the hilly view from the airport. From the stands, I watched Beth on the deck. In between races, she laughed at the antics of the teenage boys on the team. They “borrowed” the Australian team's frog mascot and noisemakers, stoking a friendly rivalry. During her medal presentations, I used my deck pass to take pictures. Beth earned her first international medals, two silver and two bronze. Medals that mattered. We landed in Detroit to discover the airline had lost a sideguard, one of two small curved plastic shields to protect clothes from wheelchair wheels. A new shield cost $100. I bought one and started the long process to be reimbursed from the airline. After Alberta, she took the sideguards off before she boarded a plane. Next destination of a non-stop summer: John Mayer in Columbus! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) An unexpected invitation led to an eight-hour flight. U.S. Paralympics Swimming invited Beth to attend the Canadian Open SWAD (Swimmers With A Disability) meet in August with the National Team. My daughter accepted before we looked up the location of Edmonton, Alberta. From Tiffin, the trip would cross almost 2,000 miles. We invited Peggy to join us. We packed Beth’s brand-new passport and her iPod, with a new playlist for meets. For her second flight since the accident, we kept her wheelchair until she boarded the plane. I helped her transfer to an aisle chair on the jet bridge, then grabbed her chair cushion and left the chair, tagged and gate-checked with strollers, to lower the probability of damage, at least a bit. I imagined the wheelchair on top of the luggage pile instead of under it. We traveled in style when an airline clerk upgraded our economy tickets to first class, our initiation to warm hand towels and extra soda. A welcome distraction for a long flight, with full meals instead of the snacks offered in the cheap seats. I helped Beth shift and raise her legs periodically through the eight hours in the air. When we landed in Alberta, Beth’s wheelchair had a bent wheel that made it harder to push. Traveling necessitated frequent repairs, especially replacing worn out wheel bearings. They wore out quickly after getting drenched often during locker room showers. The many countries at the meet created a festive atmosphere. Each team wore national colors and a country’s flag hung near the deck bleachers claimed by a specific country. The stars and stripes hung from the front of the high spectator seats where I watched with other U.S. fans. I understood that Beth didn’t want to be the only one sitting with her mom and wearing a Team USA shirt. Peggy assisted her on deck. I had a deck pass so I could help in the locker room. An unanticipated perk of the pass allowed me to take pictures on deck during medal presentations. Still somewhat shy, Beth made more of an effort to meet other teammates while I talked to other parents. They shared news of grants from the Challenged Athletes Foundation to help with the costs of competing. Also, three teenagers on the U.S. team had recently learned they shared the same birthplace in Russia. They had limb differences and had been adopted by U.S. families who lived in different parts of the country. I listened to stories, from cerebral palsy at birth to a young girl’s sudden-onset neuromuscular disorder. She walked home from school one day and collapsed on the floor. Life can change in a moment. Everyone has a story... Next: First International Medals! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) The highlight of Beth’s summer: the Youth Leadership Forum of the Ohio Governor's Council on People with Disabilities. Students with a disability in their junior year of high school had applied to attend as delegates. Five days without parents would be a first for Beth and others, with personal care assistants available for those who needed help. I dropped Beth off at a fancy hotel in Columbus. I kept my phone charged and the gas tank filled, available at a moments notice. I could hardly wait to pick her up, even though she called every day and sounded happy on the phone. I kept busy, painting a bedroom with John. Maria and I went shopping and to Taco Bell in between her jobs. I met an old friend for breakfast. John and I spent a leisurely day in Findlay. We shopped, held hands at a movie, and ordered ginger chicken at our favorite restaurant. Still, I thought about Beth often. I worried that she would be reluctant to request help and get frustrated. I was right about asking for help, but wrong about her response. Driving home with me to Tiffin, Beth said, “It was the best week of my life!” I smiled, glad to hear it but hoping many others would be even better. The first night of the forum, she asked for help to get up on the higher hotel mattress. The other days, she figured out how to do it herself. She set her alarm early and worked to shower and dress completely on her own, allowing for extra minutes to zip zippers and button buttons. Proud that she could. After difficult but independent transfers, she even un-bunched her jeans by herself. Introduced to disability issues past and present, large and small, Beth learned about the fight for the Americans with Disabilities Act. The speakers discussed stereotypes and why many people with a disability did not have a job. Advocates talked about limiting Ohio’s handicapped parking permits to those who needed them the most. One session explored ramifications of denied access and how to work for change. Information mixed with social events. “The staff was great and there were a number of outstanding speakers,” Beth said. “The event had a big impact on my life my first year as a delegate.” The forum anchored Beth to others with a disability. She met delegates, staff, and speakers with epilepsy, cerebral palsy, paraplegia, quadriplegia, dwarfism, learning issues, mental illness, and brain injuries. Some were blind or deaf. She accepted an invitation to report on the Youth Leadership Forum at the annual meeting of the Ohio Governor’s Council on People with Disabilities. “The Ohio forum proved to me that the disability community is widely diverse and vitally important.” Next destination of a non-stop summer: Edmonton, Alberta! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth made a last-minute request to spend a day at Harvard in Cambridge before returning home. We drove through New Haven, Connecticut, on the way to Massachusetts. I pointed out a sign for another college. “Would you like to visit Yale?” I asked. Her answer? A definite, “No.” She had no interest in any Ivy League college, with one exception. Beth explained in a scholarship application: “Harvard first got my attention because of the national billboard campaign, which suggests an appreciation of the contributions that students with disabilities can make.” Harvard turned out to be more than we expected. A student guide led us through one of the ornate gates into Harvard Yard. The stately buildings, iconic statues, and courtyards with high canopies of ancient trees made a charming first impression. All around us, students and tourists spoke many different languages as the guide shared fascinating history. “I toured the Harvard campus,” Beth said, “and just fell in love with it.” We explored Harvard Square on our own after the tour and ate pizza at Bertucci’s for the first time. The brick sidewalks on some of the streets slowed Beth down, but she never complained. The essence of the Square assaulted the senses, a loud urban setting with too many people, bikes, cars, and taxis. Street performers held the attention of people from all over the world. The intense, diverse humanity of Harvard Square held a charm all its own. Back home in Ohio in early July, Beth worked part-time in the local Community Action Commission, photocopying, filing, and answering the phone. She invited Ellen, Jackie, and Lizzy to pose with her for senior pictures with a local photographer. She swam with GTAC about twice a week at an outdoor pool, even when it rained, and volunteered after practice on the neuroscience floor at St. Vincent. She restocked laundry, made beds, filled water pitchers, and brought snacks for patients. Beth fully utilized an undeniable perk of using a wheelchair: carrying items hands-free on her lap. She balanced heavier items on her lap by holding them in place with her chin as she wheeled forward. Next destination (and highlight!) of a non-stop summer: Columbus, Ohio! |
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