(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!
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(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! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) On a free day, Beth suggested the Mohegan Sun casino to see the immense works of art. Wheeling through massive spaces, she realized at one point that we had accidentally entered a restricted area for adults eighteen and over. With slot machines nearby, Beth, seventeen, asked to try the poker slots. I put quarters in the machine and let her tell me which cards to keep. She never touched the slots and helped me lose $30. I took photographs at every destination while Beth collected menus and flyers and other small things for a scrapbook she planned to make. She found one she liked at a shop in the historic bridge district in Mystic, Connecticut. Equally exciting, we found the fifth Harry Potter book, The Order of the Phoenix, to add to her collection, one of the five million copies bought in the first 24 hours. Beth’s happiness was contagious. We ate lunch at Mystic Pizza, famous for the 1988 movie with the same name. I helped her scoot out of her chair to a seat in a booth. Memorabilia decorated every nook and cranny at the restaurant and Beth rated it the best pizza, ever. I bought her “A Slice of Heaven” T-shirt. We sat on the waterfront of Mystic’s picturesque harbor on a flawless afternoon. An easy travel buddy, Beth appreciated everything under the sun. She tilted her face upward, closed her eyes, and smiled. I wrapped her in a big bear hug. She patted my back with her right hand, a habit from her toddler days. Knowing how suddenly bad things could happen, I would never take joy for granted. I embraced the singular moment while a new realization dawned. My guilt for causing her injury was self-imposed and no one, least of all Beth, blamed me. Junior Nationals ended with a dinner and dance in a large packed ballroom. When loud music started, hundreds of kids with every kind of physical disability danced standing up, sitting in a wheelchair, or break dancing on the floor. With no one different and no one the same, they all shined in that snapshot of time. Beth danced carefree in the middle of it all. Next destination of a non-stop summer: Cambridge, Massachusetts! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) At the end of her junior year of high school, Beth thought about where to apply to college. All teenagers should have that choice, with or without a disability. However, the thought of college with quadriplegia made me anxious and uncertain. I wondered what my role would be. What if she didn’t make the best choice? What was the best choice? On the open road again in a little blue car, Beth and I took turns driving from northwest Ohio to the East Coast. We turned up the volume on John Mayer or mix CD’s she made, and sang along. First stop: Johns Hopkins University in Baltimore. As I pushed Beth up and over a formidable hill on campus, I couldn’t stop myself from stating the obvious: she could not wheel it on her own. She responded that an alternative route, much longer, looked a little easier. We had agreed that I would help during her first year at college, but the logistics were hazy. Our tour guide rambled and I imagined her wheeling alone on the Johns Hopkins campus. She still refused to consider a power chair or power assist wheels. The odds of Beth letting me push her chair through rain and snow? Zero. After we saw the unusual billboard in Seattle (Quadriplegia at Harvard: A+), I looked online and found the young woman pictured on the billboard. Brooke Ellison wrote a book with her mom titled Miracles Happen: One Mother, One Daughter, One Journey. With an injury like Christopher Reeve, Brooke needed a trach to breathe and could not move her arms. She shared her college dorm room with her mom and they moved through all of life’s hours together. Three years after Beth’s injury, I thought I would stay in her college dorm the first year, but I knew our days as a team were numbered. My youngest daughter kept trying to master the time-consuming details of self-care as a C6-7 quad. She worked every day on her biggest goal, complete independence, even though the odds were not in her favor. Encouraged by small victories, Beth never gave up. The third destination of a non-stop summer: Connecticut! (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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