 (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!
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 (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.)
Hundreds of participants converged from all over the country for the Junior National Championships in Connecticut. Like Beth, many teenagers lived in places where they were the only ones with a visible disability in their class or school. At registration, we recognized a few teenagers from the Paralympic meet in Minneapolis two weeks before, and another from the Ohio Wheelchair Games. None of Beth’s friends from the Raptors had been able to join us. The first day, we found the large field house with many ping-pong tables set up and ready to go. Beth experimented and found a better way to use the tenodesis grip to angle the paddle by tilting her left wrist more. She decided to test how far she could lean to reach the ball without tumbling down, so at her request, I reluctantly removed the two armrests on her wheelchair. Beth surprised both of us by winning several games without falling to the floor. The armrests never went back on her chair. After the table tennis competition, caterers served a simple meal for the athletes and parents in attendance. Young servers stood behind the buffet table and wore clear plastic gloves to set out food. As we ate, a frustrated mom confronted the workers about the latex gloves they wore. Her son had a latex allergy, more common among kids with disabilities than the general population. (Thankfully, Beth never had a problem with latex.) I agreed with the mom about the need to use latex-free gloves at a disability event. Though I also felt sorry for the teenaged servers who were not personally responsible. At the swim competition, wheelchairs surrounded the pool. When Beth raced, I walked alongside on the deck. In her sights, I pretended to be a coach by waving my arms, the signal to kick harder. She set several new wheelchair sports records for her gender, classification, and age group. Not the coveted Paralympic American Records. Next destination of a non-stop summer: Mystic, Connecticut! |
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