In mid-December, my oldest daughter packed a suitcase for her flight to Boston after her last day of student teaching in Tiffin, Ohio. Maria had applied for teaching jobs and followed up with direct phone calls to ask for an interview. Her assertiveness, a skill I struggled with, landed her an interview in Cambridge.
Maria flew by herself for the first time into Logan airport. She slept on a futon chair in Beth’s dorm room and rode the subway by herself to the interview. Maria tapped into her passion for teaching children with disabilities. After, the sisters met for dinner at Bertucci’s in Harvard Square before they flew home together. A few days later, Maria accepted the job as a lead teacher in the Cambridge Public Schools’ Special Start program for preschoolers with a disability. The position would begin in a few weeks, in early January. I was proud of her and excited for her, though I also would miss her. Maria had decided to be a teacher when she was a preschooler. At her first library story hour with no parents, the librarian told me how Maria found her way onto the storyteller’s lap. At home, her little sister Beth was her student. In grade school, Maria loved to help in her dad’s classroom during summer school. Maria declared that we would live together forever in our Tiffin home, happily-ever-after. A decade later, she planned her move to Boston while John and I prepared to sell the only home our kids had known. Our last Christmas living in Ohio embraced nostalgia. We watched The Princess Bride, again, and made popcorn. We played N’Sync Christmas music while we wrapped presents. Ben visited, and we laughed at old videos the girls called “baby tapes.” One of our favorites showed Ben, 5, pulling his little sisters on a blanket around the dining room table. A giggle fest. The video captured a perfect silly afternoon. At the Vermilion farmhouse for Christmas, we connected with extended family and met new babies. Beth rang in the New Year with her best friends, Lizzy and Ellen, for the last time. It was a recap of fondue and favorite movies, including Elf and the Grinch. They still laughed so easily. I admired the young women they’d become. Next: A New Beginning!
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Back home in Tiffin, Ohio, I accepted an activities job at the upscale Elmwood nursing home. Almost 30 years earlier, 19 and newly married, I worked as the first manager of Elmwood’s first group home in the nearby town of Clyde.
I worked five days a week on the Alzheimer’s unit, learning more than I wanted to know about the disease. On the best days, we sang songs, told stories, made crafts, played games, walked together, and laughed. On the worst days, a sweet woman died in her bed or alarms blared when residents unable to walk thought they could. Or someone fell. Or a medical emergency required an ambulance. Sirens always reminded me of the night of my car accident. One November morning, Beth stopped at the dining hall for coffee on the way to a Harvard Women’s Swimming and Diving home meet. The cup slipped and scalding liquid spilled on her left thigh. She felt discomfort, but when she removed her leggings at Blodgett, she didn’t expect to see the small red hole in her thigh. Her coaches discussed the emergency room and asked a dermatologist friend in the stands to look at it. The doctor, a former college swimmer, cleaned and covered the third-degree burn, emphasizing the need to prevent infection. Wide scarring when it healed would be unavoidable. It surprised me that the dermatologist gave her permission for Beth to compete at the meet. I heard about the burn the same day, but not the severity. She neglected to disclose all the details. She left out the part about the burn exposing the bone. I assumed it wasn’t serious since the doctor and coaches allowed her to swim. She didn’t want me to worry. Nevertheless, I was alarmed when I saw the burn a few weeks later. Skin problems healed slowly for quads, and infections? Dangerous. We re-visited the issue of drink holders for her wheelchair, rejected in the past. Thankfully, Beth gave in this time. Next: Elbow Woes! 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! My first day as manager of a Tiffin, Ohio group home, I trained to administer meals to a resident with a feeding tube, followed by me training other staff. I liked the four men who lived at the home, and knew two of them from when I worked at the local institution. I worked 24-hour shifts, 3pm to 3pm, often three in a row. It simplified staffing the overnight hours, but challenged me, mentally and physically. Sleeping well at the group home rarely happened. I scrambled to get up to speed on preferences, goals, routines, behavior plans, staff scheduling, meal planning, grocery shopping, outings, medications, paperwork, and new state requirements. On my days off, I was on call.
The day-to-day responsibility for the health and welfare of four men was daunting. The men attended the county workshop for adults with developmental disabilities on weekdays. Ideally, that time would be used for administrative planning and paperwork. Instead, since the residents had multiple health issues, weekdays often included taking one of them to a doctor’s appointment. I learned complicated medication regimens, as well as scheduling regular appointments, ordering refills, and making sure all staff documented every small thing, every day, in the correct way. I often drove to the group home on my days off for at least a few hours, just to keep up. My agency's new quality control supervisor visited one weekday morning after the men boarded the workshop bus; she had been the manager before me of the same home. She pointed out missing papers in the resident binders, which I was aware of. I regret not being more assertive. I wish I’d spoken up and showed her my long to-do list that included the missing items. Papers she neglected to obtain as the previous manager. Instead, I stewed. Next, my agency’s director made a counterproductive decision about a resident’s behavior plan by caving in to pressure from a resident’s family. I typed up evidence to support a better approach, to avoid dependence on a walker he didn’t need. I met with the director to plead his case, to no avail. Later that day, the same resident threw a tantrum near midnight. Following the new behavior plan, I had to encourage him to use the walker by his bed on the way to the bathroom. He didn’t need one. The ill-advised plan guaranteed more acting out, increased dependency, and needless frustration all around. When his loud yelling finally ended, I poked my head into the other bedrooms to reassure and quietly tell the other residents everything was okay. Good intentions, bad outcome. The youngest resident thought my intrusion meant it was time to get up, so he jumped out of bed and started his morning routine. My attempts to explain and redirect irritated him. Nonverbal, he insisted on changing clothes and sat at the kitchen table in the dark. I tried to reason with him, saying it wasn’t time for breakfast. Agitated, he tried to tip over the table and would have succeeded, except the home had an unusually huge and heavy one. When he calmed down a bit, I brought him a bowl of his favorite cereal with milk. He finished and sat in his rocking chair in the living room, still angry. I kept him company while I wrote out the required incident reports. Next: A Difficult Decision! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
January of 2005 started calm and cold. I bundled up to walk to my personal care assistant job six mornings a week along with second shift at the Harvard Coop bookstore five days a week, seven hours a day. During my evening shifts, I rode an ancient elevator to the cavernous basement storeroom when customers requested specific sizes not on display. Mice darted in and out of the shadows. It bothered me that the storeroom was always a mess — and it wasn’t my job to fix it. I obviously inherited my dad's precise organization. I sometimes had dreams of searching for something important among never-ending boxes in chaos. The day of Beth’s last final exam, a classmate pushed her through rising snow to and from the test. The snowfall shifted to a winter storm, burying sidewalks and cars. The worst of the blizzard hit on a Sunday. A snow emergency. Unearthing the car was not possible. Besides, there was nowhere to go. Ellsworth Avenue had endless drifts much too high to drive through. Everything closed, including the Coop, but I was scheduled to scribe for a final exam. The blizzard set records for New England, and not in a good way. When I couldn’t reach anyone by phone, I decided to walk to the Quad for the test, scheduled at the same dorm where the student with cerebral palsy lived. I also wanted to check on my snowbound daughter. I layered my clothes and added an extra pair of socks. The first person in my apartment building to try to leave, I worked for several minutes to free the frozen front door. Next, I fought with the icy snowdrift forming a barricade on the porch side. I could barely squeeze out. The porch floor, steps, and sidewalks disappeared in an ocean of white. Frigid blasts blew my breath away. I waded through thigh-high drifts on Ellsworth to Broadway. An attempt had been made to clear the bigger street, making my ankle boots briefly useful. I walked in the road around abandoned cars, even though I couldn’t begin to hear a vehicle approaching with the wind. The few cars on the ice-covered street drove slowly. I advanced half a block and turned back, ready to give up, when a lady in a van offered me a ride. She headed north on Mass Ave and told me she had never picked up anyone before. It was a first for me, too. Next: Blizzard, Part 2! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Through the disability services office, I accepted a third part-time job as a scribe for a Harvard senior with cerebral palsy. I typed while he spoke for a practice session, then the real thing for his essay tests and final exams. My typed words appeared on a large wall screen for the student to read. The young man impressed me and I learned about different subjects as I typed. Unfortunately, it was only a few hours each semester. The job paid more per hour than my other two combined and I liked it the best. The frigid months brought unwelcome lessons for Beth and me. In Ohio, I very rarely bothered with a scarf, hat, or mittens, but then I never walked long distances in winter. In Massachusetts, I bundled in layers for my early morning walks to the Quad. When new snow fell overnight, it transformed Cambridge to something clean and bright—at least for a little while. I appreciated the beauty of Cambridge even with dirty piles the plows left behind. The towers and steeples of timeworn buildings shimmered with dustings of snow. After her injury in Ohio, Beth had limited her wheeling in the winter from buildings to or from a nearby car, with little exposure to the weather. However, Harvard required extensive wheeling outdoors where even a light snow made pushing her chair difficult. No vehicles were allowed in Harvard Yard where Beth lived in the freshman dorm farthest away from the closest shuttle stop in Harvard Square. Health insurance usually paid for a motorized wheelchair for quads and I encouraged her to order one to use only in bad weather. Or special wheels with motors to fit her manual chair. She refused. Rakhi and I offered to push her to class or to the shuttle stop. Stubborn, Beth told us she’d ask only if the snow rose too high to wheel through. We learned the hard way how even a small amount of snow and ice could be dangerous for a quad in a manual chair. One bitter day in early December, Beth rode the shuttle from the pool to the bus drop-off in Harvard Square. From there, she wheeled across the Yard to her dorm. The six-minute walk doubled to twelve with light snow on the ground. Despite wearing wheelchair gloves, she ended up with white, numb, and hurting fingers. Whenever Beth had pain in her trunk, arms, or hands—all areas with less than normal sensation—it signaled a serious problem. I pushed her to the student medical center, where a doctor treated mild frostbite in her fingers and suggested better gloves. Not an easy solution for a quad. Beth preferred gloves with open individual digits to get a better grip on the chair’s big wheels. They exposed her fingers to the cold and required a considerable amount of time to put on. Regular snow gloves or mittens soaked up moisture from the wheel rims. Bulky gloves that kept her hands completely warm and dry, interfered with wheeling. I purchased new pairs of each kind anyway. Next: Christmas in the City! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Many community festivals in Harvard Square attracted overflowing crowds that spilled into and closed the streets. The HONK! Parade during Oktoberfest was unlike anything I had seen. Think Dr. Seuss with brass horns, stilts, unicycles, and bikes! The event attracted costumed brass bands from around the country and the world. Not long after, I worked at the Coop during the Head of the Charles Regatta, the world’s largest two-day rowing event. With too many bodies in Harvard Square on a normal day, the regatta tipped the crowd to a crazy level and swamped the stores. At the end of my work shift, exhausted, I gladly left the colossal mess of clothes behind. It required several days to restock and put the displays back in order. On October 27th, Boston’s Red Sox won the World Series for the first time in eighty-six years. Harvard students replaced the pumpkin on the head of the John Harvard statue with a Red Sox stocking cap and scarf. In Harvard Square, students and locals joined together for a party. Beth braved the crowd for a short while, as people danced on the roof of the Harvard T stop. She returned to her dorm to study while the loud celebration continued. John teased and called Beth a lucky charm, since she moved to the area right before the big win. Maria and Ben traveled to Boston for the first time with John to join Beth and me for Thanksgiving weekend and the holiday dinner at Legal Seafood. I bought tickets for The Lion King, on tour from Broadway. A work of genius in every way, from the set to the costumes. And, of course, we also had to see the fourth Harry Potter movie The Goblet of Fire, before we hugged goodbye too soon. Beth’s ventures continued to impact family and friends in unexpected ways. Soon after her Boston trip, Maria shared her big life-changing decision with us. A college sophomore, she planned to graduate with a double major from Heidelberg in Ohio—and when she did, she would move near Beth to teach. I supported her decision, though it made me sad to think of both of my girls in Massachusetts in the future, more than 700 miles away from John and me in our Tiffin hometown. I understood the draw of the Cambridge area. I had never been in another city as vibrant. A place that charmed with old-world history and diverse humanity, all the while assaulting the senses with too many emergency vehicles, taxis, cars, and bikes. A place that also isolated and challenged me every day for the nine months I lived there. Next: A Third Job! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Before freshman orientation ended, Beth wheeled over to Harvard’s Phillips Brooks House Volunteer Fair. She chose the Kids with Special Needs Achievement Program (KSNAP), to help students with disabilities at an inner city Boston school. She didn’t think twice about getting to the big city once a week. She volunteered in a special education classroom every Friday afternoon and took turns with other students to plan and purchase materials for activities. Beth soon discovered the unpredictability of old elevators on the MBTA subway, called the ‘T’ for short. Other KSNAP volunteers, including her friend Brittany, moved her (in her manual wheelchair) up and down steps and escalators. Thank goodness John and I weren’t there to watch! We were grateful our youngest didn’t let obstacles get in her way, but we also worried about her safety. As Beth started classes, a swimmer from Michigan asked her to mentor a girl with a new spinal cord injury. When I heard about the emails they exchanged, Beth said, “I love mentoring!” At the Coop, I stood at a cash register in textbooks as students lined up to the back wall. While veteran staff supervised, eight of us, all new employees, rang up large bills at eight cash registers. We commiserated about our sore backs after the long shift. One evening, I worked at a cash register while Beth and Rakhi stood in a long line. On my day off, I returned to textbooks with Beth and carried a heavy stack. Her books included several thick novels for a Charles Dickens freshman seminar, her favorite class. Beth and seven other students accompanied their professor, a Dickens expert, to the catacombs of the rare book library to look at signed first editions of Dickens' books. The depths of the Widener library had not been exaggerated. When the money had been donated to build the impressive library (with over 50 miles of shelves), there were conditions. None of the original bricks could be removed on the façade. The second stipulation: all Harvard students were required to pass a swim test. Harry Widener drowned on the Titanic and his mother thought he would have survived if he had known how to swim. Hence her condition with the donation for the memorial library. The irony of it all? The swimming requirement ended because of the Americans with Disabilities Act, passed in 1990. My daughter Beth, a Harvard student with a severe disability, could easily pass a swim test. My limbs worked fine, but I probably couldn’t. Next: First laps with HWSD! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
On my second day in Cambridge, I answered an ad from an upperclass student who needed a part-time personal care assistant (PCA). I decided my main job would have less responsibility than my earlier group home jobs, so I dropped off my resume at the Harvard Coop bookstore. Out of my comfort zone, I also didn’t have internet access, with no laptop or smart phone. I dropped by the Harvard Information Center in the Holyoke Center Arcade to check my email on one of their free computers. My third day, a young woman in a motorized scooter interviewed me briefly. First thing on the fourth day, I started the PCA job. I drove to a dorm at the Quadrangle (called the ‘Quad’) north of the main campus. Driving instead of walking turned out to be a terrible idea. Parking required circling streets around my destination for a long time to find an open spot. My new job involved a long, complicated morning routine. The fifth day in Cambridge, I left the car parked by my apartment. During inclement weather, the parking situation turned from stressful to impossible. For that reason, I walked almost everywhere regardless of the forecast, including the half hour each way to and from the Quad in the morning. I stopped back at the Coop employment office to remind the director about my application and management experience. The sixth day, the Harvard bookstore called for an interview, and on the seventh, I filled out employment papers. The bookstore was an historic co-op that paid rebates to students, which evolved into the official common name, The Coop. I worked full-time from 2 to 10 p.m. in textbooks. With the addition of my morning PCA job, I rarely saw my roommate and spent little time at the apartment during the day. When I did, I usually stayed in my bedroom with the door closed, reading books from the public library. I felt out of place in the dingy apartment. I saw Beth often during the first orientation week, shopping with her in the Square or dropping off things she needed. She met me at the main entrance of the dorm to let me in. From there, we took the elevator to her second floor suite. She thanked me for setting up her dorm room, but didn’t give me a dorm key. And I didn’t ask for one. (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! |
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