 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!
4 Comments
 On a free day, Beth asked to see the immense works of art at the Mohegan Sun casino. 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, wanted 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.
Every destination on our summer road trip, I took photographs 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!  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 post continues my family's story. To see the earlier bits, 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. The unusual billboard we saw in Seattle read, 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 post continues my family's story. To see the earlier bits, 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 post continues my family's story. To see the earlier bits, click "BLOG" at the top of this webpage.)
A busy summer stretched out before us. Beth signed up to volunteer at St. Vincent again. She accepted a part-time job in an office and bought tickets for a John Mayer concert. She registered for Ohio’s Youth Leadership Forum, a five-day event for teenagers with a disability. I scheduled college visits around her first and only National Junior Disability Championships in Connecticut. Plus swim practices a few times a week and competing at her second USA Swimming Disability Championships. One thing we didn’t anticipate: a mid-summer invitation that would require an eight hour flight one way. Before summer school started for John, he drove Beth and I to the Chicago Shriners Hospital instead of traveling in the Shriners van. (We had a side trip planned after.) The occupational therapist gave Beth adapted tools to try, including a rocker knife with a knob handle to cut food. The progression of her kyphosis and scoliosis had significantly slowed. A doctor told us that swimming strengthened back muscles, and if the trend continued, she would not need surgery. No fusing the spine with a metal rod that would limit her flexibility and movement even more, in addition to risking more spinal cord damage. One of the teenagers we met at Green Springs could walk before fusion surgery left him with paraplegia. A hand surgeon recommended muscle transfer surgery to give Beth working thumbs. She politely told the doctor that she could use them without surgery, thank you very much. Even though her tenodesis grip was a feeble skill compared to controlling each thumb individually. She refused to consider muscle transfers since the procedure required several weeks of complete dependence afterwards. She wouldn’t give up any of her hard won independence. The Shriner’s social worker asked about college. Before the accident, we assumed Beth’s college would be in Ohio. She decided to major in biology and made a short list of possible colleges with top biology programs. All out of state. “The travel I did with swimming opened up the world to me,” Beth said. After more doctor appointments, we drove across town for a brief look at the University of Chicago. The next day, at the University of Illinois, we met with wheelchair sports staff. The University of Michigan impressed us. She also had toured other colleges with her brother and sister in the past, including Case Western in Cleveland. Beth considered Duke in North Carolina and Johns Hopkins in Maryland, but there wasn’t enough open time to visit both before her senior year of high school started. The first destination of a non-stop summer: Minneapolis!  (This post continues my family's story. To see the earlier bits, 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!  (This post continues my family's story. To see the earlier bits, 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 post continues my family's story. To see the earlier bits, click "BLOG" at the top of this webpage.)
The sunshine of a new spring, along with my once-a-week counseling sessions, kept my well of worry from overflowing. Nearly three years post-injury, Beth showed me that her life with quadriplegia could be so much more than I had imagined at first. My anxiety dropped from a scary level to something more manageable. Chronic head pain remained a challenge. My obsession with worst-case scenarios improved from hourly to only some days. Most teenagers felt invulnerable and didn't worry about risks. That group included my youngest, despite her disability. We lived a few blocks from the high school and Beth liked the idea of wheeling there instead of driving with me. My first thought: NO! How could it be safe for her to cross alleys and streets in a wheelchair? Beth wanted to try. On a weekend, I walked next to her on a trek to the high school. The first obstacle involved wheeling over driveway stones to get to the sidewalk in front of our house. Next, the old neighborhood had broken sidewalks and no curb cuts. We tried a narrow alley instead that had bumps and stones and potholes. And almost zero visibility for cars with bushes blocking the view. When we crossed Tiffin’s Washington Street in between parked cars, drivers approached fast. On the high school grounds, there was no way to avoid either a long incline at the front entrance or a harder slope into the parking lot towards the automatic doors. I continued to drive her to and from school. The Quiz Bowl team finished a winning season, undefeated in the league. Against my advice, again, Beth joined the high school spring musical, Hello Dolly. She wore a headset to manage the stage crew while Maria shined in the lead role. After a show, I conversed with friends in the lobby without making a quick excuse to leave. The girls stayed out late at cast parties that followed the show's success. John and I dropped our strict curfew rule after the car accident. A spinal cord injury had changed our perspective, with a new awareness of what really mattered. And what didn't. Beth wasn’t happy with her ACT score for college, so she studied practice books before taking the test again. Not my idea. The second ACT improved on her first composite score by a surprising four points; she credited her English teacher, Mrs. Kizer, for her high English score. Beth set goals on her own and I supported her unconditionally, but not for bragging rights. More than anything else, I needed her to be okay, to be really okay, as she claimed the night of the accident. Was it too much to wish the same for myself, for everyone I loved, and for the rest of the world? Flowers burst into bloom in John's big garden with the ramped walkways. I loved the sunshine. Keeping up with Beth kept me busy and distracted most days, especially when my headache settled at a lower baseline. Lots of comings and goings. School, after-school activities, volunteering, swim practices, and time with friends. Sometimes I drove while Beth, often tired, dozed in the passenger seat. Overbooking her time shifted from a frequent inclination to an ingrained habit. She didn’t want to miss out on anything. Next week: Beth’s first swim competition with the forward freestyle! (This post continues my family's story. To see the earlier bits, click "BLOG" at the top of this webpage.) “I often swim with non-disabled swimmers at ‘regular’ swim meets,” Beth said. “Many people are surprised that I compete in swimming since I use a wheelchair, and it has been fun for me to show how people with disabilities can be competitive in sports just as much as others.” Coach Peggy had a passion for swimming that I had not seen before. She enthusiastically approached every practice with new ideas, willing to try until something clicked. She did not rely on standard drills and techniques for able-bodied swimmers. The shared excitement of small successes propelled Beth forward. “It was a new adventure for me,” Peggy explained. “I was in the water with anatomy books on the deck and I would ask her to move certain parts of her body, and then I’d try to trace where the nerve ending connected to the muscle. The light bulb went off then because I understood that she didn’t have the necessary nerves firing to do a particular movement. So we’d try a different movement to attempt the same goal. It took a lot of trial and error, but she was very willing.” So was her new coach. Peggy’s focus gradually changed, “from what she (Beth) didn't have to what she did have access to.” Beth registered for her second USA Swimming Disability Championships, to be held in early June in Minneapolis. Her times at recent meets qualified her to attend the meet as an S3, as she had predicted at the last one in Seattle. At the YMCA about twice a week through the spring, I walked the nearby track instead of staying poolside to read. I didn't need to watch for her head dipping too long underwater anymore. She had learned how to adjust and continue with muscle spasms. She stayed in the pool 30-40 minutes with breaks when she was on her own. Practices with coaches always ran longer. We drove to Toledo at least once a week. Beth combined a practice with a new favorite: volunteering at GTAC’s WaterWorks to teach safety skills and basic swimming to young children with a disability. One Saturday, she spoke to the kids about her spinal cord injury before getting in the water with them. The first thing Beth taught them was how to roll on their backs to breathe. Just like she had been taught at her first water therapy session after her injury. Beth loved WaterWorks Saturdays, the highlight of her spring.  |
Cindy KolbeA mom with a story Follow my
|
RSS Feed
