(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
It seemed like a good plan. While Beth started her freshman year at Harvard, I would live off-campus for transition support. The summer rushed by and I still needed to find a place to stay. Rundown studio apartments in Cambridge started at about $1,400 a month in 2004, so I decided to rent a room instead. I found a rare bargain several blocks from Harvard: one of two bedrooms in a tiny apartment for $600 a month. I’d share the space with a young woman, a church organist, from Ohio. Small world. Late in August, Beth and her close friends met for breakfast on the day Lizzy left for college. They each chose different schools in three states. Her friends wore rings engraved with the word HOPE, the same one they gave Beth after her injury. The same one she never took off. Ellen and Lizzy had the same week off for spring break and planned to fly to Boston for their first visit to Harvard. They hugged and said teary goodbyes in the Burger King parking lot. I’d miss her friends, too, and their gift of contagious laughter. Beth wasn’t the only one saying sad goodbyes to friends and family. We prepared the best we could for our separate adventures. I anticipated what she would need and made piles along the wall in our dining room. John doubted it would all fit in Beth’s car. He was right, but the items at the top of my list made the cut. I put an old backup wheelchair in the car topper and stuffed pliable bags of towels and sheets around it. I checked my list twice, three times. A reassuring task on the brink of a college experience out of my control.
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(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.)
Later in June, the Greece buzz abruptly fizzled. A phone call from the head of U.S. Paralympics overruled the earlier plans at Trials. He told Beth all swimmers must stay the entire month of September in Athens. No exceptions. She handed me the phone at my request and I attempted to reason with him. When I hung up the phone, we hugged and cried. If only I could make things better, a wish I had made many times. The phone call triggered a decision Beth had made months before. She would not wait a full school year to start college at Harvard, so she immediately gave up her slot on the Athens team to someone else. The fun preparations ended, replaced with the chore of telling family, friends, and reporters the bad news. We tried to focus on the silver lining. Now, she could start at Harvard on time and attend freshman orientation. Discouraged, Beth followed Peggy’s advice and set goals for the next four years. The plan included staying on the U.S. National Team, attending at least three Paralympic meets a year, and swimming on her own at Harvard, following Peggy’s workouts. Beth didn’t expect to practice with the college’s swim team. In four years, she did expect to master the forward freestyle and achieve an out of reach American Record in the 50 free, the hardest in the S3 women’s classification. Beth’s detailed plan led up to an ultimate goal: the 2008 Paralympics in China as a member of Team USA. The Beijing Paralympics would take place in September, a few months after her graduation from Harvard. She would attend graduate school for medical research or law. “I’ve already decided to postpone grad school for a year,” Beth told a reporter in 2004. “Nothing’s going to stop me this time. I want to medal in China.” (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.)
In early December, a long-awaited email changed our course. Beth’s unexpected acceptance to Harvard College launched another shift in the horizon for my family. After reading the email, she lowered herself to the living room floor in her lift chair. Lying on her back, she spread out her arms, closed her eyes, and smiled. Incredulous, I watched my jubilant daughter. What would happen next? She had planned to send out more college applications. A few days later, Beth told me she didn’t want to apply anywhere else. She said that if she didn’t attend Harvard, she would always wonder what might have been. John and I decided to make it happen. Tuition would be $27,448 for the 2004-2005 school year. Add room and board plus fees for a total of $39,880. Plus travel costs and my living expenses off-campus. John and I intended to borrow money on our home, though four years of Harvard would cost more than it was worth. Beth applied for more college scholarships. She chose not to broadcast the acceptance beyond her family and best friends. For the first swim meet of the high school season, the girls on the Tiffin team painted their nails in school colors, blue and gold. I drove with Beth to the away meet since an accessible bus wasn’t available for the swim team. A flight of steps led down to the pool and parents watched from a higher level. Beth shared the safest way to move her manual wheelchair on stairs with two teammates. We learned that high school competitions ran like USA Swimming meets, but on a much smaller and less formal scale. Everyone seemed to stare at the girl in the wheelchair, but Beth didn’t let it bother her. In the 100-yard butterfly, she finished third—one of three swimmers in the race. “I was able to score quite a few points in high school. My coach put me in the harder events that nobody wanted to do, like the butterfly. Since the top three swimmers scored, as long as I finished I would score points.” After the meet, Beth hurried and left the locker room just after the rest of the team. She found herself alone by the pool, so I bumped her up the steps. Peggy and the team apologized a few minutes later in the lobby, but I completely understood. My youngest made it easy to forget she used a wheelchair. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) I stopped counseling since I was perfectly fine. After all, I finally made progress in the wake of three years of weekly sessions. Guilt and anxiety no longer dominated my days, which felt like a monumental gift. I scheduled dentist appointments to fix my second cracked molar, casualties of teeth clenching—despite the biteplate I wore each night. My doctor added a temporary muscle relaxant at bedtime to reduce the clenching. A high dose of Celebrex usually tempered the headache and kept me moving. I watched Beth hold a pen awkwardly in her right fist, not hesitating as she wrote her motto on a Challenged Athletes application. ANYTHING IS POSSIBLE. She wholeheartedly believed the motto was true. And it really was, though only for her and a small percentage of other people with her priceless perspective. Those with and without a disability. I filed away a note to myself that said, “Anything is possible, except when it’s not.” I intended to write about how she dismissed all she couldn’t do as irrelevant. “I think walking is over-rated,” Beth said, with a smile. Unable to stand and not focused on a far-off cure for quadriplegia, she continued to work hard to defy the usual limits of quad hands. Her spinal cord injury erased normal finger function. Even so, she wouldn’t write off any fine-motor tasks she really wanted to do. One example of many: putting her hair up in a ponytail after trying several times a day for two years. A tribute to unwavering belief and persistence. As Beth's last year of high school started, she quietly completed an early admission application to Harvard, convinced it was a long shot. “I didn’t tell anyone since I didn’t think I would get in,” she said. If someone asked about college plans, Beth mentioned the University of Michigan, one of the colleges she planned to apply to after she heard back from Harvard in December. NEXT: A new job! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) College applications covered our kitchen table before Beth’s senior year of high school began. She questioned the need for help at college her freshman year and wondered if I could live off-campus instead of in the dorm with her. Separate housing for me for any amount of time would add costs on top of her out-of-state tuition, room, and board. High college expenses seemed certain. John and I decided not to hold her back because of finances. We owned the Tiffin house and planned to borrow off it. My second counselor moved away and the third nudged me forward. After nearly three years of weekly sessions, I had few tears left. I had been spinning in a rut, perseverating on my choices the night of Beth’s injury. As if I had a replay option. The new psychologist told me the accident could not have happened any other way. She framed it as less of a colossal failure and more of a perfect storm of events. I woke up very early that morning to set up a refreshment stand for the choir contest. John stayed home to study for his National Board test. The night of the accident, the OSU concert ran longer than expected. The psychologist’s next point hit home: I could not make a good decision (i.e., calling John on the pay phone), because exhaustion impaired my judgment. That fact somehow flipped a switch for me and allowed a measure of forgiveness. However, no amount of reasoning would be enough, if Beth had been unhappy. I gradually reduced my zoloft to a lower dose. As always, my headache tightrope remained, a precarious and somewhat mysterious balancing act to keep the level manageable. At home, Beth gathered summer mementos and made colorful collages with a small paper cutter. She used markers to add descriptions and funny comments on each page, approximating the calligraphy style she learned before her injury. She created a tribute to the magical summer in her first scrapbook. The last page listed 15 notable summer firsts, including her first US Paralympics American Record, her first passport stamp, her first tuna fish and cucumber sandwich, her first concert without a parent, and her first swim practice in the rain. Beth’s very best ‘first’ of the summer: wheeling around Harvard in Cambridge, Massachusetts. (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.) 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.)
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! |
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