I have exciting news to share: I signed a publishing contract for my memoir, Struggling with Serendipity, with a traditional publisher (not self-publishing)! I wanted my awesome blog followers to be among the first to know, before I post the news on Facebook and Twitter. Thanks so much for your support! The next segment in my story follows.
During John’s spring break, we drove twelve hours from Tiffin, Ohio to Cambridge, Massachusetts, taking Route 90 most of the way. It was worth it to spend a few days with Beth. A decade earlier, the one-hour drive from Tiffin to Vermilion seemed long, but no more. I bought tickets for our first Red Sox game at Fenway Park with John and Beth. The huge crowd at the stadium an hour before the game surprised me. We lined up by the field to meet some of the players. Many lingered to talk to the smiling college student in a wheelchair with the navy blue Red Sox cap. The stadium had old-fashioned charm. The homerun fence was painted bright green: the green monster. With every seat in the stadium taken, many others paid to stand to watch the game. The enthusiastic, rowdy crowd reacted to every play, something I’d never seen before. My first experience with intense Boston sports fans, but not my last. Bostonians are known for taking their professional sports teams seriously, a fact supported by many winning teams. We weren’t prepared for the cool weather, so I signed up for a credit card to get a free Red Sox blanket. I wrapped it around my daughter’s shoulders (and later cancelled the card). It was parent’s week at Harvard, so John and I visited Beth’s class on Ethics, Biotechnology, and the Future of Human Nature. Dr. James Watson, the former head of the Human Genome Project who discovered the structure of DNA with Dr. Francis Crick, was the guest speaker that day. His controversial affinity for eugenics created a lively discussion with the class. eugenics |yo͞oˈjeniks| the science of improving a human population by controlled breeding to increase the occurrence of desirable heritable characteristics. Developed largely by Francis Galton as a method of improving the human race, it fell into disfavor only after the perversion of its doctrines by the Nazis. Dr. Watson encouraged the Harvard students to have many children. Beth joined the class debate on the potential of stem cells and the controversy over discarded embryos for research. Though never focused on a cure for her disability, she supported medical research. An upcoming vote in Congress in the summer of 2006 heated up the debate across the country over federal funding for stem cell research. We didn't know that Beth would be in the middle of it. Next: A Life-Changing Experience!
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As a new year began, I said goodbye to everyone at the group home and gratefully turned in my keys. I gave myself the gift of time to live in the moment, connect with loved ones, and take better care of myself. I aimed for the lower headache level I had before the manager job.
A few weeks later, I was invited to a birthday party at the group home. It was good to see the residents again, but it also was nice to leave, with no responsibility for their lives. Not long after, the resident at the group home with the feeding tube passed away and I attended his funeral. I cried during his sister’s eulogy as she described his joyful greeting when she visited him, something I had the privilege to witness. From our home in Ohio, I kept in touch with Beth while she finished her first official season with the Harvard Women’s Swimming and Diving (HWSD) team. Harvard was famous for extraordinary professional connections. Beth found that to be true, but she appreciated other associations as well. For her twentieth birthday in April, the college’s shuttle bus drivers pitched in to surprise her with a bouquet of flowers. Even at 6 a.m. on the way to the pool, Beth conversed pleasantly with the drivers and always thanked them. She became friends with the bus dispatcher, Bonnie, who also used a wheelchair. At the dispatcher’s request, Beth spoke at two Boston schools. Bonnie attended HWSD home meets with her young daughters, and the girls asked Beth to autograph their meet programs. In the spring, she missed college classes for a week to fly to Antwerp, Belgium with the U.S. Paralympics National Team. She earned four first-place finishes. Her hometown coach traveled with the team as a new U.S. Paralympics coach. “Coach Peggy has helped me get better with almost every meet,” Beth said. ”She’s been with me every step of the way.” When a riot broke out in Antwerp, the coaches rushed to gather up the sightseeing swimmers. Everyone was fine. Some even found inexpensive treasures in the diamond capital of the world. My daughter’s only purchase was a gift for her sister Maria, a ring with a small diamond, similar to the HOPE ring. Beth had worn hers every day since her injury. Engraved with the word HOPE, Beth’s ring looked exactly like the ones her best friends owned. The rings were made after the car accident six years before, and continued to be a meaningful reminder of the love of good friends. Next: First Time at Fenway! I loved being home in Ohio, but the thought of Beth in Massachusetts made me sad, even though I knew she could handle living independently with her disability. I missed her.
We had been a team for four years. I hit a snag with an incompetent clerk and a new prescription for her medical supplies. With a fast-dwindling supply, I called the company again. I made the effort to be nice—at least the first several calls. Then, I asked to speak to the clerk’s supervisor and she refused. I lost my temper and started over with another supply company, finally arranging an overnight delivery to Beth at our expense at the last minute. My sadness amplified the normal day-to-day stress of my job. With elevated headache pain, I had trouble sleeping at the group home. I barreled through more weeks with unpaid overtime hours. Often on the verge of tears, I talked to John and let him convince me the stress of the manager job wasn't worth the money. Looking back, I could have ridden it out. Holidays were always the hardest time of the year to staff group homes. So instead of quitting my manager job in November, before Thanksgiving and Christmas, I decided to be considerate of the residents and other staff by leaving early in the New Year, almost three months away. I turned in my notice, relieved the end was in sight, and focused on setting things in order for the next manager. I talked to Beth on the phone after she finished a 2,400-yard workout in one practice: 96 lengths in the 25-yard pool, almost a mile and a half. Swimming that distance had not been possible a year before. As college competitions began, Beth would compete at all home meets at Blodgett pool as an official member of the Harvard Women’s Swimming and Diving (HWSD) team. Always too-busy, she appreciated the extra time she would gain by not traveling to away meets with the team. I wished I could have been there for the first home meet of the season in mid-November. Beth dropped fifteen seconds in the 100 free compared to her first Harvard meet ten months before! And reset two of her short course American Records. “She's probably one of the easiest people to coach in the sense that she always has a smile on her face, she's got a great positive attitude, and she's willing to try anything,” HWSD Coach Morawski said. “And she just kept getting faster and faster.” “For her to make that commitment to coach me and, this year I’m on the roster, is really important,” Beth said. “It’s been great. I love it!” Next: Together in Minneapolis! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
As Beth’s sophomore year at Harvard began, we lived far apart for the first time. I bridged the 725 miles between Cambridge, Massachusetts and Tiffin, Ohio with phone calls, emails, and care packages. I also tried to help from a distance, to free up at least a little of Beth’s time for more important things, even though we both knew she could do everything she needed to by herself. I made travel plans for upcoming Paralympic swim meets. I responded to requests for details for newspaper articles and updated her resume for a reporter. I started a Challenged Athletes travel grant application for her and she finished it, adding her personal goals and the essay. I ordered medical supplies and wheel bearings, When she needed a new bag for the back of the wheelchair, I researched options, emailed her the best ones, and bought the one she selected. Beth took over repairs for her wheelchair, scheduling a service to come to her dorm only after the intermittent catching of one wheel progressed to a consistent and frustrating obstacle. Her dirty laundry piled up until she couldn’t find clean clothes to wear. Her priorities filled her days: swim training, classes, homework, volunteering, mentoring—and sleep. Grateful to be home, I reconnected with the rest of my family. John and I visited Ben in Columbus. John taught 3rd graders while Maria attended Heidelberg College full-time, worked at a video store, and led college tours, in addition to babysitting. She sang in the college choir and show choir. Maria also solidified her plan to move to the Boston area after she graduated early, in December of the following year. She had a double major in elementary education and special ed. Always busy, she wasn’t home much except to sleep, but we found times to meet at Taco Bell to catch up over burritos and sodas. I loved my suddenly wide-open life, but I also felt the need to get a job to help with finances, even though John never pushed me to work outside the home. Without a college degree and with little opportunity in our small town, I had few options. Any minimum wage job would limit me to a very low income. I thought about working at the Tiffin Center again, a state job and my highest wage option. However, John might retire after the next school year, which meant we might relocate. It wasn’t fair to the residents to purposely work at the center for a short time. Plus, the thought of starting over again in direct care in the most difficult module was daunting. Working at a group home could be difficult, too, but seemed a bit easier and more flexible than the Tiffin Center. I decided to bite the bullet and manage another group home for the same agency I worked for earlier. Before accepting, I toured the Tiffin home, a modern duplex in good condition. The physical environment was a big improvement over the dilapidated house I had managed before. I said yes. I wish I had said no. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
As Beth’s second year of college began, I helped her move into Pforzheimer House in the Quad where she’d live for the next three years. The irony of a quad (quadriplegic) living in the Quad did not escape us. My trek to the basement storage room to uncover her belongings proved dangerous. A few months before, I could reach everything in the room. Since then, students packed the entire room to the ceiling. I climbed shaky heaps and shifted furniture. A student helped me grab the heavy lift chair off the floor and over more piles. I was lucky to recover Beth’s things undamaged. In her second floor dorm room, I hung Maria’s sunflower quilt on the wall from an old-fashioned picture rail molding. I stocked Beth’s mini fridge and bought boxes of Cheez-its. She shared a three bedroom, one bath suite with two quiet friends, both future doctors with pre-med majors. They studied most of the time, like she did. I slept on her futon for two nights until a sad drive transported me away from Beth. I should have been grateful that she no longer needed me close by, but the separation hurt. If I lived alone near Harvard for another school year and worked three jobs, sharing a dingy apartment would not be fun. Even so, I wished I could be in two places at once. With no assistant or mom down the street, Beth selected biology as her major, a concentration in Harvard-speak, and spent part of her days in the science labs with ongoing physical challenges with the equipment. She usually chose to wheel the mile to and from her labs and classes. She led conference calls for the National Youth Leadership Network, in addition to mentoring. Every Friday, she rode the subway into Boston. “I directed a volunteer program that mentored students in special education classrooms in Boston Public,” Beth said. She also expanded the program to a second school. “We visited classrooms every Friday and took the students on field trips.” Beth depended on the early morning shuttle to get to swim practice, with over two miles between her dorm and the pool. She operated the pool’s chair lift independently to get in and out of the water. It was her first year on the roster of the Harvard Women's Swimming and Diving team. She entered the locked varsity locker room by pressing numbers on a keypad. Easy, compared to handling the heavy doors of the building. She found signs and little gifts at her assigned locker from her secret sis. One morning, she had a new adhesive hook near her locker for her towel, since she couldn’t reach the high hooks. She no longer had to leave her towel at the bottom of her locker. Strong team bonds formed a community that depended on each other. “I made amazing friendships,” Beth said. She joined the rest of the team for scheduled workouts in a weight room. She knew what to do. Coach Peggy had created a personalized workout for her on laminated flip cards. Beth figured out how to hold traditional weights with uncooperative hands, and used stretch cords with loops for handles and heavy medicine balls. The team often swam after the weight room. Nothing if not persistent, Beth put on and positioned her swim cap, by herself. . . . After three years of trying and failing to achieve the task. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
My last weeks in Cambridge as a personal care assistant and Harvard Coop employee ended with easy goodbyes. I loaded the car—twice—with Beth’s backup wheelchair, single futon, lift chair, floor lamp, refrigerator and microwave unit, and more. I labeled everything and pushed my limits by moving the items by myself to the basement storage room at the upperclass house (dorm) where she would live in the fall. Everything hurt after. I scribed for the student with cerebral palsy for the last time as Beth finished her final exams and swam her last practice at Blodgett until September. We watched colorful dragon boats race on the Charles River before I packed the car for the long drive to Ohio. I couldn’t wait to be back home for the summer and planned to appreciate every minute. The upcoming school year, John and I would have an empty nest in Tiffin with Beth at Harvard, Ben in Columbus, and Maria graduating early in December to work in Boston near her sister. I wanted my kids to find their own way in life, but at the same time, I wished they could live with me forever. Feeling sorry for myself sparked a radical idea: moving to the Boston area if John retired in two years, after 30 years of teaching in Ohio. Maybe. Summer vacation officially started with an additional five-hour drive to Chicago for the wedding of Rakhi’s brother. The short drive seemed easy after the trek from Boston. I loved our road trips in Beth’s blue car with CDs and sing alongs. At one of the wedding events, I wore a long blue dress with a tunic top to a beautiful ceremony. At the evening garba, Beth danced in a short sequined top that bared her midriff above a matching ankle-length skirt, a gift made in India from Rakhi’s parents. We found out at the garba that a woman with a bare midriff meant she was looking for love. I never tired of adding to Beth’s contagious laughter. Back in Tiffin, Beth reunited with her best friends, Ellen and Lizzy, not knowing it would be one of their last summers together. Maria gave Beth a special gift, a beautiful sunflower quilted wall hanging that she sewed for a college class on women’s traditions. Last spring, John attended presentations at Heidelberg when the students spoke about their quilts. I wished I could have heard Maria talk about her sister’s favorite flower and the passion for life they shared. When I lived in Cambridge, I also missed hearing my oldest daughter sing at Heidelberg choir concerts. I wouldn’t miss any more of her solos. Seneca Aquatic Klub practices filled Beth’s calendar for her fourth swimming summer. Peggy showed us an underwater video from the previous summer with sloppy strokes. A recent one with smoother movements reinforced Beth’s belief that mastering the forward freestyle stroke was doable. Two teammates lifted her in and out of the pool as they had for high school practices. One morning, they carried her out to the diving board—under protest. Her attempt to enter the water gracefully ended in a belly flop, but she didn’t lose any sleep over her lack of diving skills. Next: Norway! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
In late April, Beth and I flew to Michigan for the Second Annual Disability Open. Her goal was to officially get back on the U.S. Paralympics Swimming National Team, since she had temporarily lost that status by declining her spot for the Greece Paralympics. “I heard stories from the other swimmers,” Beth said, “but I don’t have any regrets. I knew I’d have more chances.” She happily reunited with Coach Ewald and other friends on the pool deck. Her fan club watched. My parents, John, Ben, and his girlfriend traveled from Ohio to join me in the upper stands. (Maria had to work that weekend.) Everyone in our family showed an interest in Beth’s swimming, but Ben shared the understanding of intricate details of classification, competitors, rankings, and records with Beth and me. I fervently hoped Beth regained National Team status, but not to be pushy or to brag. I simply wanted what she wanted, whatever was important to her. Wearing a Harvard swim cap, Beth swam the 50 butterfly in record time, but was disqualified. International Paralympic rules required air space between the elbow and the water for the butterfly, which she could do, but not every stroke. After the 100 freestyle, she touched the wall just tenths of a second under the needed qualifying time for the National Team. And reset her American Record. Beth beamed when she saw the time on the scoreboard, then waved at us in the stands while we hooted and hollered. Despite the chilly spring day, the post-meet tradition of ice cream carried on at a Dairy Queen, ending with long goodbye hugs with Peggy and the rest of Beth’s fan club. I wished John could return to Massachusetts with me, but he had to teach until the end of the school year in our Ohio hometown. Back in Cambridge, Beth signed up for the housing lottery with two friends. No personal care assistant. All of the freshmen living in Harvard Yard moved the next school year to one of the upperclass houses. The lottery worked a little differently for Beth since the only accessible options were in the Quad, the housing farthest from the main part of the campus. She would live in a dorm with multiple elevators. Newer elevators. Her dorm suite would have an accessible bathroom. A dining hall in the dorm added another advantage. I would be no longer needed in Massachusetts when Beth started her second year of college. I was proud of her and I fully appreciated her rare accomplishment of independence as a quad—but not the 700-mile separation approaching in the fall. Next: Beth’s First Overseas Trip! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
A surprising event highlighted our spring. On college teams, athletes with any kind of disability were very rare. After her freshman year, Beth hoped to continue as manager of the swim team with the privilege of practicing with members twice a week. Instead, Coach Morawski asked her to be an official member on the roster of the Harvard Women’s Swimming and Diving team. The invitation was a gift she hadn’t expected, serendipity in its purest form. All the more treasured because she would be the first member of the team with a visible disability. The first quadriplegic. The first wheelchair user. “As a swimmer with a disability going into a Division 1 school,” Beth said, “I didn't know how I would be welcomed because I am not going to be able to score points.” “We were not sure how it was going to work.” Coach Morawski told a reporter from the NCAA Champions magazine. “Everyone is absolutely impressed by her.” Elated, Beth added, “I had no idea Harvard would accept someone with a fairly severe physical disability on the team.” Only Beth could refer to quadriplegia as fairly severe! As tulips bloomed randomly in Harvard Yard, I talked to Beth on the phone about every other day and we met each week for lunch. We’d split a turkey sandwich and two small chocolate desserts at our favorite spot, Finale. After, we stopped at the Brattle Square Florist where I bought a few sunflowers, her favorite flower. She kept them in a vase on her desk. Rakhi surprised Beth with a small birthday party at Finale with a beautiful chocolate cake. Soon after, Beth’s best friends from high school visited with one of their moms. Ellen and Lizzy camped out in Beth’s dorm room while the mom stayed with me in my apartment. We all watched Beth practice at Blodgett before exploring Boston. We walked the Freedom Trail to the Holocaust Memorial and headed to the Prudential Center. We rode the elevator past the expensive Skywalk viewing level and stopped at the Top of the Hub restaurant on the fifty-second floor, to admire the sunset. Glass walls offered a beautiful panoramic view. On a budget, we sat at a table in the bar instead of ordering pricey food at the restaurant. Underage, the three girls drank sodas and we shared a plate of cookies. Lizzy amazed us by pointing out landmarks and neighborhoods in every direction, even though it was her first time in Boston. Next: Swim Trips to Michigan and England! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth’s roommate returned to the dorm from India. Rakhi shared sad stories about her volunteer work with children who were orphaned in the late December earthquake and tsunami. The tragedy killed more than 230,000 people in fourteen countries. Living in Cambridge, a truly international city, I felt more connected to a big world than I had in Tiffin, Ohio. About three weeks after the blizzard, Beth’s car still sat encased in snow and ice up to the windows. Snowplows clearing the street piled up extra snow on one side. An announcement from the city of Cambridge incited panic. Officials would begin to ticket cars that had not been moved since the winter storm. The next morning, crowds of people attempted to free their cars all over town. I tried my best, but half an hour later with little progress, I paid two teenagers to help who had chipped ice away from the wheels of another car. Spring couldn’t arrive too soon. A new semester packed Beth’s days with classes, volunteering, swimming, ongoing assignments, and a heap of books. Her first semester grades, all B's and A's, calmed her fears of not belonging at Harvard. She didn’t stress about breaking her all-A streak from high school. College life challenged her with the daily basics, so she prioritized her time and avoided social activities. With early morning swim practices and late night studying, she took advantage of breaks between classes for power naps. Beth made an attempt to take care of herself through her toughest winter. The continuous scrapes on her legs and feet from the pool walls healed slowly. She put waterproof bandages on the worst ones. When a cold surfaced, she treated it seriously to avoid chest congestion and pneumonia. She followed her lung doctor’s advice with decongestants, extra water, and more sleep. Swimming maximized the impaired lung capacity caused by her injury, but when she caught a cold, she still had a small, weak cough. She discontinued the last of her asthma medicine, Advair, with no return of symptoms. Since her leg spasms lessened with frequent swimming, she stopped taking a muscle relaxant. Except for a round of antibiotics now and then, she appreciated being medication free. . . . A rare thing for someone with a spinal cord injury. The college swim team season ended in February with the Harvard Women’s Swimming team as the undefeated Ivy League Champions. When team practices stopped for the rest of the school year, Beth focused on her four-year swim plan and continued to practice religiously. She grounded herself at Blodgett pool. Next: An Astonishing Invitation! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Besides snow, Harvard presented other accessibility challenges. With massive historic buildings, wheelchair access often involved out-of-the-way back doors. Some required making prior arrangements for keys, key cards, or lifts. An unanticipated obstacle ruined a cold morning. While Beth’s roommate traveled, the only elevator in Thayer dorm broke down. She couldn’t find help to get down the steps in time for the shuttle to the pool. Frustrated, she called her coach for the first time about missing a team practice. When the elevator was fixed, it remained unreliable. Temporary fixes for the elevator varied in duration. Harvard’s maintenance director gave us his cell number and put a repair team on call. He explained that a new elevator required gutting the historical building—not an option. Unfortunately, replacement parts for the ancient elevator had to be specially made. Beth hated to ask for assistance. However, she loathed missing classes and practices more, so she placed the phone numbers for the maintenance director and floor proctor on speed dial. They usually responded quickly. Noah hadn’t gone to bed yet early one morning when he and the director carried Beth down two flights of dorm steps at 5:45 a.m. for swim practice. I helped with the stairs whenever I could. The day arrived when the elevator could no longer be fixed temporarily. The director offered to put Beth up in a nice hotel close to campus. She chose to stay put and arranged for help to get down and up the steps. The dorm elevator added ongoing stress. During that time, a relatively new elevator at the back of Annenberg came to a stop partway to the dining hall with only Beth inside. One of the servers heard her and stayed close by, talking to her for about 30 minutes until the elevator moved again. Over the weeklong semester break at the end of January, Beth and I boarded a crowded bus to visit New York City. A four-hour drive one way for a two-day visit. The Broadway musical Rent highlighted our trip. At the accessible entryway to the theatre, we waited to be seated near the actors' entrance. Recognizing one, Beth was star-struck when he greeted her with a smile and a hello. Drew Lachay, from the boy band 98 Degrees, played the role of Mark. The opening song introduced us to the beautiful concept of measuring our lives in love, through all 525,600 minutes in a year. We planned to taxi back to our hotel after the show. Beth wore unlined boots with no socks and a dress that bared her knees. Theater patrons quickly filled the taxis in the frigid night. Taxi drivers also tended to avoid people in wheelchairs, and Uber didn't exist yet. We ended up walking a mile to the hotel, stopping every few blocks at an open business to warm up. It was one of the rare times she let me push her wheelchair to protect her hands from the bitter cold. |
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