(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!
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(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! (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.) Beth’s second swimming summer began with a twelve hour drive from NW Ohio to Minneapolis for her second USA Swimming Disability Championships. Swimming remained complex and challenging, but she drove through Chicago on congested highways with ease. Our flight to Seattle a year earlier was the only time we had been west of Chicago. Our hotel sat across from the parking lot from the expansive pool complex at the University of Minnesota. The first morning of the meet, we met her coach and teammate at the pool. Beth, sixteen, asked me to stay nearby, since I understood her developing routine with goggles, swim caps, towels, bathroom breaks, positioning, and showering. For me, that meant hovering at a distance on the bleachers until she wanted my help. I didn’t mind. I supported her quest for independence, though none of us knew if more progress on that front was even possible. Waiting to swim, new records set in fast races intimidated her. Expectations soared along with nerves. As Beth predicted one year earlier, she qualified for finals. Her previous national meet remained the only one where she had not. Despite the achievement of finals cuts, her morning races were sluggish, followed by discouraging finals times. After another dawdling race on the second morning, Beth’s frustration grew. The only S3 woman at the meet, she would win each race, a fact she did not appreciate. She wanted to achieve swim times close to her best ones—or faster. Immediately after the second morning’s races, time trials allowed swimmers to clock official times in events of his or her choosing. I made a rare request to her coach. I asked him to sign her up for a time trial in the 200 back. Three years after her injury, Beth earned her first official Paralympic American Record in the S3 classification for the 200-meter backstroke. We both knew it was the easiest record to beat, but I reminded her that just a year earlier, she wasn’t strong enough to swim nonstop for 200 meters. As I anticipated, the success tempered her disappointment with other races. We tumbled into the predictable schedule of a three day meet for swimmers who qualified for finals: wake up, warm up, race, cool down, eat, recover, rest, and repeat. And phone calls to John, Ben, Maria, and Peggy. The last day of the meet, after prelims, we strayed from the routine to visit the Mall of America. Beth let me push her wheelchair, a rare occurrence, to preserve her strength for finals. That evening, we laughed with her coach after she swam her fastest race of the meet after shopping. Even so, her resolve to work harder magnified. “Once I realized I was good in the water,” she said, “I trained really hard and put a lot of focus and effort into it, because it was this new avenue for me. I hadn’t thought I could be an athlete anymore.” After Minneapolis, Beth set ambitious new goals. In addition to mastering the forward freestyle, far from being attained, she aimed higher for the ultimate American Record in the 50 meter freestyle, by far the most difficult S3 record to beat. The second destination of a non-stop summer: Maryland! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth led us to unexpected places after her spinal cord injury. “I always knew I was just going to get stronger and get back to my life as soon as possible,” she said. On May 10th, Beth drove us in her little blue car to the Michigan Wheelchair Games. Three years had passed since her injury and one year since her first swim meet in the same 25-yard pool. She competed using the forward freestyle stroke for the first time. Not a smooth endeavor and quite a bit slower than her backstroke. She dropped 30 seconds off of her 50 back race compared to her time one year before. I drove home from Michigan so Beth could rest. But first, she sang and danced in the passenger seat to her favorite John Mayer song. “I am invincible, as long as I’m alive!” Déjà vu. I loved our road trips. One week later, we attended the Ohio Wheelchair Games. Two weeks after that, Beth competed in Bowling Green at her first outdoor meet. She accepted my help to wheel over the grass to GTAC’s team camp. Her friend on the team was not in sight, so she picked a spot out of the way. She liked being outside and rarely complained about the heat. Hot weather raised her body temperature and I monitored it with a forehead gauge. She claimed to sweat a little, but I never saw it. Beth alternated her arms for the 100-meter backstroke instead of the double-arm technique, while the other swimmers in her heat swam a 200-meter event so she wouldn’t have to finish the race alone. Her swim times varied more from meet to meet than they did for her able-bodied teammates. She unexpectedly swam her fastest times by far in the 50-meter traditional forward freestyle race. She touched the wall at one minute and 28 seconds, still 15 long seconds away from the most difficult American Record in her S3 classification. I suspected that the swim parents with stopwatches fudged (improved) her time a little. Maria graduated from high school with honors in late May. We hosted a big graduation party on our backyard deck with John’s flowers and walkways providing a colorful backdrop. Maria chose to attend Tiffin’s Heidelberg College to major in education and take advantage of their acclaimed music program. She had intended to be a teacher ever since she toddled into her dad’s classroom. Since her sister’s injury, she decided to teach young children with a disability. She would be a passionate advocate for her future students. Always on the go, Maria babysat often, worked at a video store, took voice lessons, and performed in community theater. I loved her energy and enthusiasm. We all lived in the same house, but some evenings I didn’t see her. We met at Taco Bell sometimes to catch up over burritos and fountain drinks. Meanwhile, Beth made big plans for a summer to remember. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth’s first swimming summer ended with her first Sectional meet in August of 2002. When we drove through Indianapolis to Indiana University, we noticed the unusual billboard again, the same one we saw in Seattle. Quadriplegia at Harvard: A+. Sectionals was another packed to the hilt USA Swimming meet. “A swimmer who uses a wheelchair," Beth said, "is still an unusual sight at most swim meets." Able-bodied swimmers stood on the raised blocks to begin races for all the strokes except one: the back, which always started in the water. Most used their feet and legs to surge off the wall. Beth tried to gain a bit of momentum with her hands pushing off the wall. With rare exceptions, backstroke swimmers alternated their arms simply because it was faster. For Beth, the double-arm backstroke resulted in a better time, despite her head dipping under. She improved slightly on her swim times, but aimed higher. When her junior year of high school started, Beth scheduled a GTAC practice late afternoon every Friday. With the Toledo pool filled to capacity, she learned how to share a lane while a coach supervised her backstroke laps. At the end of every practice, she tried to get out of the pool by herself. Beth pressed her back into a corner of the pool and put her hands up on the ledge behind her, to try to lift herself up and out of the water. She rose just a few inches before falling forward, but she kept trying, regardless. Every practice. In addition to swimming on Fridays in Toledo, Beth asked to go to our Tiffin YMCA with me once or twice a week. I helped her into the water. Her practices without a coach focused on forward motion, the first step in her plans to master all of the swim strokes. I watched her closely from the deck bleachers, since she spent more time under water than above it. She somehow could get herself almost to the halfway point of the 25 yard length with a few short bursts to the surface for rapid breaths. Then she had to give her arms a break and roll onto her back to breathe more deeply. Even if by some miracle she could progress continuously on her stomach for the whole length of the pool, a bigger hurdle loomed: learning the mechanics of the butterfly, breaststroke, and freestyle, with legal modifications for legs that dragged behind and hands that could not cup the water. I worried. And worried. Would failing to achieve this goal tip Beth over the edge to depression? And without her buoyant optimism, how would I be able to move forward? Guilt and anxiety plagued my days and nights. What if overused antibiotics lost their effectiveness? That was how the quad in Green Springs had died of pneumonia in the hospital room next to Beth’s. Or would a blood clot travel to her heart or brain? I was sadly stuck in worst-case scenarios. Thankfully, Beth was not. “My next goal is to make the U.S. National Team that will attend the 2004 Paralympics in Athens, Greece.” (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) When I drove to the Seattle pool for the second day, we loved how Mount Rainier seemed to float in a pillow of clouds on the eastern horizon. At the meet, a friendly official introduced herself and two others from her Toledo club team. They extended a warm invitation to join their team. We also heard about the next Paralympics in Greece, held shortly after the summer Olympics in the same venues. “I was hooked," Beth said. "I knew it wasn’t going to be my last national meet." I borrowed a page from Laraine’s book and took on the role of a foil, reflecting and questioning, not encouraging or discouraging. Should we pause and contact a Tiffin swim coach instead of driving an hour each way to swim in Toledo? Were swim coaches like medical specialists in the sense that they tended to be better in big cities compared to small towns? We had no clue. I worried about Beth taking on too much, especially learning new strokes, which seemed like an exercise in futility. Wouldn’t life be easier (better?) if she settled for a leisurely backstroke? Waiting for a race, Beth adjusted her ear buds and turned up her music. One 50-meter length with no turn felt less intimidating, but her time did not qualify for finals, again. That afternoon, we saw Seattle in a different way from a boat in the harbor. We treated ourselves to a fancy ice cream dessert with chocolate shavings and extra whipped cream, the first connection of ice cream to swim meets. The third morning, we tried to sort out a jumble of criteria on the papers posted on the walls of the pool. Unreasonably fast times to make the U.S. National Team. Ludicrous times for World Records—only slightly less ludicrous for American Records. All broken down into strokes, distances, classifications, and genders. For almost every American Record for S3 women, there were blank lines where a name should be, along with a fast, arbitrary time that no one had achieved before. The last evening of the meet, we watched the finals races. Beth also officially enlisted the help of the Toledo coach to find out what she could do in the water. She told him that one year ahead, at the next national championship, her swim times would be fast enough to qualify as an S3 and make the cut for finals. Not stopping there, she also planned to swim all the strokes. Beth had the gift of perpetually underestimating challenges. The World Rankings of the International Paralympic Committee (IPC) compared individual swimmers. Beth’s three very slow races in Seattle placed her on the list at 15th, 17th, and 21st in the world, confirming the rarity of S3 swimmers. I arrived back home in Ohio with a missing push handle on the wheelchair, Maria’s unbroken Snow White mirror, and a 16 year old intent on learning how to swim. Occasionally floating across the pool had been a pleasant pastime before Seattle. After the national meet, Beth raised the bar to the sky for her first swimming summer. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
The Seattle meet officially opened with the beeps and buzzes of back-to-back events. Most swimmers dove off the blocks from a standing or sitting position with no assistance. Those with impaired hands usually started races in the water. One coach reached over the edge to hold a swimmer’s feet to the wall. Another coach held an arm before the buzzer sounded. A man with no arms floated on his back, with his feet touching the wall and a cord in his teeth. The coach at the other end of the taut cord dropped it at the start. The only people we recognized had been at the Michigan Games: Shawn and his wife, as well as another teenager and her mom. There were a few more wheelchairs in use compared to the night before; a girl minus a prosthetic leg pushed a manual wheelchair with strong arms, instead of using crutches on the wet deck. We clapped for the first American Record of the meet, a neck and neck race. It quickly became evident that I had misunderstood Shawn from the start. Beth had no innate swimming talent. His invitation had been based on the fact that a tiny percentage of quads around the world could be alone in a pool without drowning. Even more rare: quads who could swim. Beth had the dubious honor of being the only S3 female from the United States at the meet, a distinction that would reoccur again and again. The fastest athletes during prelims would return to race in the early evening, if they beat the cut times for the finals races. The humidity of the chlorine air saturated my skin, but Beth couldn’t sweat if she wanted to because of her spinal cord injury. I rushed back and forth to the concession stand for cold drinks. For Beth’s first race at her first nationals, swimmers on both sides entered the water without a mother’s help and surged ahead at the start. My daughter merely sought to prevail over the seemingly endless distance of the 50-meter pool—twice. The only one weaving down the lane in the last stretch, she did not make the cut for finals, as expected. In the women’s locker room, swimmers showered and changed on their own. Beth chose an out of the way spot by the back lockers because she needed my help. Our hotel had no accessible rooms available, so instead of being lifted in and out of a bathtub, she decided to shower at the pool in her wheelchair for the first time. I took off the cushion ahead of time, adjusted the tight water handle, and picked up the soap when it slipped from her lap. I squeezed out the shampoo and her arms trembled slightly as she moved it around in her hair. The wheelchair left drips of water on the concrete on the way to the rental car. After a quick lunch and a nap at the hotel, it was time to explore. I had a stack of printed Google map directions that Beth read while I drove to the fisherman’s wharf and the Space Needle. After riding the elevator to see the panoramic vista, we found an unusual store. I bought Maria a small but elaborate Snow White mirror for her upcoming birthday, hoping I could get it home in one piece. My girls would always be Snow White and Cinderella, princesses who believed in happy endings. At five, Maria decreed that we would live together forever in our Tiffin home, in our tiny corner of a big world. “The trip was truly amazing,” Beth said. “Seattle was beautiful. My mom and I were able to tour the city in the afternoons and evenings after I swam.” We didn’t know that the Seattle swim meet would be the first and the only one where she would not qualify for finals. |
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