(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Beth felt ready to race with her high school team at the Sectional Championships. She swam the 50 freestyle in a fast 1:13.40, a short-course American Record in her S3 classification. Or, it would have been, except the officials messed up and the meet was not sanctioned, despite Coach Peggy’s advance request. The fastest swimmers at Sectionals advanced to the District Championships the following weekend. Someone with a physical disability like Beth had no chance of qualifying for the District meet. She planned to go to cheer on her teammates, but Peggy told her to bring her swimsuit and goggles. Since the District meet definitely would be sanctioned, the rest of Beth’s high school team unanimously voted to give her one of their relay slots so she could set her first two short-course American Records. The girls on the relay team gave up their chance to win because of the substitution. In the locker room, I helped Beth into her swimsuit while she stressed about their sacrifice. She also thought her high school season had ended the week before. It didn’t help when the meet announcer told everyone in the packed natatorium about her potential records before her relay started. Beth entered the pool from the side and swam to her lane. Meanwhile, Peggy moved into position, stomach down on the deck with her head over the water. Peggy reached low to grab Beth’s feet and hold them to the starting wall, a legal start for a swimmer with limited hand function. Repeated trials had determined the intricate details of Beth’s optimum position to start each stroke. An arm straight or bent, trunk angled or supine, and the mechanics of floating motionless until the starting buzzer. In the first leg of the 400 relay, Beth achieved her first two official short-course Paralympic S3 American Records, drawing enthusiastic applause from the large crowd. However, with the added stress, her time in the 50 free clocked in nine seconds slower than the week before, and the 100 free at seventeen seconds slower. Beth never asked for recognition, but hearing her new American Records announced at school on Monday morning was a nice surprise. Next: A Sudden Emergency!
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(This blog tells my family's story. To see more, click "blog" at the top of this webpage.) My job as group home manager started with a bang. My new boss handed me keys and suggested I meet the residents over the weekend. If the woman on duty asked if she would be my assistant, I should tell her no. Driving to the home, I passed the pay phone I didn’t use the night of the accident, as well as the field where my car flipped three times. I knocked on the front door and entered a dark, depressing living room. Four residents watched TV while a woman crocheted in a separate room in front of another TV. Most jobs didn’t allow time for staff hobbies, including ones at group homes. I kept quiet and observed. She asked about the assistant position and when I responded, she argued. Leaving shortly after with the residents for an outing, she hit my parked car with the company van. Presumably by accident. I worked three 24-hour shifts a week including weekdays while the residents usually attended a workshop. I drove them to numerous doctor visits. I also volunteered additional time when Beth was in school. A mess of paperwork needed to be cleaned up in short order for a state inspection and the house had been neglected to the point of being unhealthy. I bleached the mold on and in the refrigerator and cleared legions of powdery bugs from overhead lights. I scoured decades of yellow wax off the kitchen floor, cleaned mice droppings out of cupboards, and threw away infested food. My mom helped me replace the wallpaper to brighten the living room. My hectic paid hours focused on the residents and improving their quality of life. I gave a pep talk at a staff meeting to enlist help to raise the bar. Thankfully, the crocheting woman transferred to another home. I aimed for a level of care I would want for someone I loved. With few staff and fewer resources, I fell short. Though I took a small measure of pride in trying. I recognized the seriousness of my responsibilities, aware of my impact on the day-to-day mental and physical health of the residents. Group home managers doubled as underpaid psychologists, nurses, and nutritionists. I expected the job to be taxing, like my earlier Tiffin Center job, where most of the residents had grown up in an institution without a loving family. The difference at the group home? Working alone most of the time. I dispensed a complicated litany of pills, my least favorite part of the job—especially when a volatile resident refused to take his psychotropic medicine. Despite behavior plans I followed, I filled out scores of incident reports. I also slept poorly three nights a week on an uncomfortable day bed. But it wasn’t all bad. Three of the residents played on a basketball team and I cheered for them at games with the fourth. Other outings could be fun, too. Sometimes. In the middle of the night, a deaf resident occasionally switched on his TV and cranked up the sound. He giggled when a sleepy worker stumbled in and out to turn off the volume. I waited to smile until after I turned to walk out of his room. Next: Beth and Homecoming! (This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
I had the rare gift of time as Beth started her senior year of high school. She didn’t need me at school midday. Never bored, I protected my free hours by not turning the TV on during the day. I personalized three mother’s journals, one for each of my kids, with childhood memories and family history. I picked up needlework and writing projects, humming along to classic tunes playing in the background. I connected with Maria when she wasn’t at one of her jobs, college classes, or choir practices. Sometimes we met at Taco Bell to catch up over lunch. I called my parents on the phone and sent care packages to Ben at OSU. I walked for exercise. I met a friend for brunch most weeks at Bob Evans. When the waitress saw us approach from the parking lot, she had our iced teas ready. John never suggested I work outside the home in any way. We had enough, with his steady income and our frugal ways. But I convinced myself that I should return to a paid job for the school year until Beth started college. She gained more independence and encouraged me, assuming I wanted to work. Beth liked the idea of pushing the limits of her disability more often, and not relying on me when she was rushed or tired. I debated between a demanding job at better pay and a minimum wage job with less responsibility. With few choices in Tiffin, I decided to support adults with developmental disabilities. A job where I could make a small difference. A local agency offered me a group home manager position in a nearby town. A familiar job. Years earlier, a few weeks after my wedding and newly nineteen, I assumed the role of live-in manager at a different group home. John and I moved in before he started his first elementary teaching job. The year was 1977, during the first wave of the exodus from Ohio institutions. The best candidates for community living left first, including my four residents. Even so, the transition challenged everyone involved, every day. A few decades had passed since my first group home job, and some state institutions had closed. The exodus slowed to a trickle and included residents with multiple challenges. I accepted my new manager position on a Friday—without visiting the group home first. I hoped for the best. I could handle most anything for less than a year. Couldn’t I? Next: Overwhelming responsibilities! (This blog tells my family's story. To see more, 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 blog tells my family's story. To see more, click "blog" at the top of this webpage.) I convinced Beth to take a day off of school to go to the Shriners Hospital. Two volunteer drivers met us in Toledo early in the morning. We left our car there and boarded their van for the four-hour drive to Chicago. The friendly drivers lived in our hometown, Tiffin, and one was the grandfather of a friend. The Shriners Hospital made a colorful first impression, effectively designed to be welcoming for families. Beth and I met individually with each member of a large team at the spinal cord injury clinic, including a urologist, orthopedic surgeon, social worker, occupational therapist, psychologist, and physical therapist. A bubbly nurse took us on a tour of the hospital, pointing out a display for the Make-A-Wish Foundation for children with life-threatening medical conditions. She casually offered to make a referral for Beth, and introduced us to another quad and her mom who recently returned from a cruise in Alaska through Make-A-Wish. My family had rarely traveled. However, the offer bothered Beth. Between appointments, we talked. Make-A-Wish clashed with her wholehearted belief that her “condition” would get better, not worse, based on the one scale that mattered to her—decreasing dependence. She knew that cut spinal cords did not get better, and the medical miracle of re-growing cut cords might not happen in her lifetime. The frightening severity of her recent pneumonia and other risks of quadriplegia did not factor into her decision. Beth turned down the nurse’s offer, certain that others needed Make-A-Wish more than she did. I trusted my daughter’s judgment over my own. The entire team at the Shriners clinic convened with us at the end of the day to make recommendations. We learned that Beth’s damaged back muscles changed the spinal column and worsened curvatures. She acquired two new diagnoses. I had never heard of kyphosis, an outward bowing of the back, but I understood scoliosis, a curvature sometimes resembling the letter S. When I was a teenager, way back when, I had worn the Milwaukee back brace, an antiquated treatment for scoliosis. The brace covered my pelvis, with a metal bar that curved out in the front and connected to a chinrest, making three years of junior high and high school more awkward for me than usual. If the curving and bowing of Beth’s back continued to worsen, her organs could be damaged and major surgery would be needed to straighten the spine with a metal rod. I added back surgery to my ocean of anxiety. I worried for Beth, for the rest of our family, for friends, and for the whole world. The relentless ache in my head dug in deeper, filling the space behind my eyes. I talked to my psychologist every week about pain, guilt, and depression. She told me that guilt could resemble grief and offered rare advice: find things to look forward to. In other words, stop waiting for the next tragedy or health crisis. Easier said than done. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) “My friends have been very positive, full of encouragement, and have accepted my disability, and treated me just like everyone else,” Beth said. At the high school, her friend Jackie bumped her manual wheelchair down two wide steps in the music room. One day, a small wheel turned sideways. After the girls tumbled to the floor, they burst out laughing. Beth, 14 years old, described the scene soon after it happened. “My choir teacher pretty much freaked out at first and he got me back into my chair really fast. It was funny!” The concerned choir director offered to change where Beth sat to avoid the steps, but she declined. Like Ben and Maria, she had inherited perfect pitch, probably from their grandmothers who had sung for weddings in times gone by. During my recent trips to volleyball tournaments, long drives, I loved how my girls had belted out their favorite songs with the radio. After the accident, Beth’s lung capacity limited the strength of her voice, but not her love of music and singing. I drove Beth to Green Springs three times a week after school. The physical therapists reminded my tired and pale daughter to take care of herself. She wasn’t getting enough sleep. By the time we arrived home on therapy days and ate a late dinner, the evenings barely allowed for the extra time needed for routine tasks like showering and too much homework. Marathon days for a newly injured teenager with quadriplegia. I struggled to keep up, too: bone-tired, hurting, and deeply sad. Laraine asked us to help with a teaching seminar for therapists, the first of many, on a Saturday. “I call on Beth to talk to newly-injured spinal cord patients,” Laraine said. “Her skills inspire them and her attitude is positive and motivating.” One of the therapists asked me what they could do to support parents. I responded that taking good care of our children was the best gift. I didn’t try to explain my tunnel vision, with no light at the end. At that point, I wanted to have hope, but I couldn’t see past my guilt. The therapists also had questions for Beth. “Most people dread hospitals and hate them. I don’t,” she said. “I have met many great people in hospitals. The St. Francis Rehab Hospital is my second home and my physical therapists are like family. Some may look back on my initial days at St. Vincents with depression and grief, but my experience was positive, except maybe the first day. To me, hospitals are not places of sadness.“ For the main part of the teaching seminar, Beth followed the initial steps of every workout and struggled to get on the mat table. Her favorite therapist assisted and described the muscle mechanics of the exercises. “Beth still faces many new challenges,” Laraine said. “I know she is up to the task.” (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) In early December, the annual Christmas party of the spinal cord injury group filled a big hall in Toledo. Beth made a frequent request: to not park in a handicapped space. We left the space for those who needed it more. Other parents offered me effortless conversation. We lived in the same world, one with the added dimension of disability. I heard stories of spina bifida, cerebral palsy, spinal cord injury, and multiple sclerosis, of wins and losses. Surrounded by significant disability, my emotional battle seemed pathetic. Despite the obvious perspective, my depression wouldn’t budge and generated senseless comparisons. A wide gulf separated two typical hands with ten functioning digits from two paralyzed hands like Beth’s, with one finger she could move a little bit. Another contrast: the ability to stand for at least a few moments made transfers and changing clothes a cinch—in comparison to her inability to bear any amount of weight. Our new friends at the party understood the complexity of movement. They also knew that Beth's dimpled smile did not negate the many challenges of quadriplegia. “No amount of smiling at a flight of stairs has ever made it turn into a ramp,” said Stella Young, a disability advocate. The saying on one of Beth’s t-shirts read, “Stairs, the Final Frontier.” I expected to hold my daughter's plate at the buffet line, but she put a plate on her lap and let me help only with items she couldn’t reach. Then, for the first time, she picked up an open cup full of punch that dripped over the top as her left hand compressed the plastic with the tenodesis grip. The bottom side of the same hand slightly pushed one of the big wheels, while the right hand moved the chair forward, since one-handed wheeling turned a chair in circles. Nervous, I tried to assist with a gentle push and she immediately said, “Don’t.” She willingly accepted the inevitability of small spills along the way and the bigger risk of dropping it. I followed her slow progress to a nearby table where she concentrated on releasing the cup with care. A minute later, Beth picked up the wet cup to take a drink. It slipped from her grasp, the liquid pooling on and off the table. I cleaned it up and set another full cup in front of her—without asking first. After the party, Beth’s new anxiety with night driving surfaced. I encouraged her to close her eyes and rest. She couldn’t relax. I didn't like driving in the dark, either, but I focused on getting home safely and started her new N’Sync Christmas CD. We sang along, quietly. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Six months had passed since the accident. Beth’s glass cuts healed and left small scars. She approached her new normal hour-by-hour and day-by-day. Beth had no expectations and no destinations. I had definite expectations for my first counseling session. When I fell asleep at the wheel, my identity as a mom had shattered along with the bones in Beth’s neck. I thought that my psychologist would bestow a smidgen of peace, with more mending on the horizon. In reality, my first hour of counseling simply tore off the scab on my guilt. After the session, I sat in the car in the parking lot and sobbed, haunted by Beth’s fragility and my own. Tears offered no redemption. Afraid of every aspect of the future, I waited for her outlook to cloud and crash. And selfish thoughts: when it did, could I function? I hoped for help at my next counseling session, or the one after that. We found a community of support in an unlikely place. I encouraged Beth to go with me to Toledo on a school night. When we entered MCO rehab, the look we shared spoke volumes; we were glad that she had moved to Green Springs for rehab instead of MCO. In the therapy room, we met the awesome members of the Northwest Ohio Chapter of the National Spinal Cord Injury Association (NWONSCIA) for the first time. Family centered, the large group included all ages and abilities, as well as several Laraine alumni. Deb O., our friendly favorite, extended a warm welcome and introduced Beth to the other teenagers. Most had spina bifida from birth, making them wheelchair masters from an early age. We listened with interest about annual events, including a summer fishing trip and the wheelchair games. I also overheard a hushed conversation between two parents about a young man with quadriplegia who died on the way to the hospital from a stroke caused by autonomic dysreflexia. On our way home from Toledo in the dark, Beth watched the road nervously. A new anxiety surfaced with night driving, regardless of who was behind the wheel. Still, I felt the need to reassure. I told her that I must be the safest person to drive with; I knew what it felt like to be too tired and would never let that happen again. I offered again to find a psychologist for her to talk with, and she declined, again. Driving at night would continue to trigger anxiety. However, it would not prevent Beth from traveling where she wanted to go. (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) After I quit my job at the high school, our new normal changed for me from an onslaught to simply overwhelming. Beth attended school most days and I met her there over her lunch period. Life continued to be exhausting. Even so, Beth looked forward to physical therapy. I watched her complete the beginning steps of a therapy session in November, six months after her injury. Progress was obvious. She no longer needed complete assistance with hand-over-hand guidance, but she also could not move out of her chair independently. Laraine caught Beth when she tipped too far forward to pull a wheelchair brake, helped her scoot over on a sliding board, and steadied her as she sat up on the mat table. At a time when every movement on land required focused exertion, Beth found unexpected freedom in the water. Not a swimmer before the injury, she needed more trials with more sinking before she could stay afloat on her back for more than a few moments. Waving her arms underwater moved her backwards. When she lost her balance and tipped over, she couldn’t get back in a floating position or get to the edge of the pool by herself—or get her head up to breathe. At the pool wall, she held herself up with both hands, then tried and failed, over and over, to get on her back without help. Weeks later, Beth invited Laraine and Jill to her last therapy session in the rehab pool. In the water with another therapist, my youngest attempted to float on her own, unsuccessfully. Sinking, she worked her arms in a burst of effort, raised her head, reached up to the wall with both hands, and caught her breath. After another try, she positioned herself on her back and waved her arms underwater to stay afloat, to breathe, and to move very slowly across the small pool. Eventually reaching the opposite wall, she grabbed the ledge with effort, using both hands. In an impressive feat of balance, Beth achieved a floating position independently again and dragged along a sinking trunk and legs through another lap. “Once she entered the water, wow,” Jill said. “It was awesome!” Seven years later, after setting 14 Paralympic American Records, Beth told a Harvard reporter, “I discovered I had good water technique and was able to keep myself afloat pretty well. Not at the beginning—it obviously took me awhile to learn how to swim.” (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) The summer after the car accident, my doctor increased the dose on my anti-depressant and gave me two referrals, one to a psychologist for counseling and another to a surgeon for my dislocated thumb. Overwhelmed with our new normal, I put the referrals on hold, but I set aside my qualms about taking medication. I needed to stay afloat. Starting high school pushed both of us to our limits. For Beth, it was the physical demands, and for me, it was working as a tutor with too little sleep. She actually liked school, in spite of tiring so easily. “Most of my classmates only knew me as the shy volleyball player that I was before my car accident, but everyone was welcoming and supportive.” On a cold fall morning, Beth had a low fever with congestion. Her small shallow cough reminded me of the weakness of her lungs. When I asked her to stay home, we argued, even though I didn’t want to make the call about missing another day of work. She insisted on going to school. When I transferred Beth from the car to her chair, I hit an ice patch and we slipped to the pavement. Maria helped me lift her sister into the wheelchair, but my rocky composure had tipped over a sharp edge. Though I did my best to hide escaping tears, a few noticed. I said my head ached, no big deal. I didn’t lie. If pressed, I gave assurances that it would let up soon. After school, I moved a wheezing Beth into bed and rushed to give her medicine and water before she fell asleep. She made a request, a frequent one, to not let her sleep too long; a stack of homework waited. Beth needed the rest more, but that was a battle I never won. Alone in the quiet as she slept, I couldn’t fight the heavy sadness anymore. Then, it disturbed me that I couldn’t settle myself down for what felt like a long time—but I kept trying. When John arrived home from work, I shared the immediate problem: whether or not I could get through another school day without losing control. And worse, whether or not I could calm myself down when I did. More than anything else, I had to function day to day for Beth. She depended on me and I would not let anything get in the way. John knew about my chronic headache, but I had worked hard to minimize and mask the guilt and depression. I didn’t want to worry him. I love many things about my husband, including his ability to be a good listener. He hugged me and asked me to quit my job at the high school and start counseling. I agreed with relief. He suggested going out to a restaurant. No, thank you. He offered to schedule a massage for me. No, thanks. While I called to set up my first session with the psychologist, John made dinner. We thought that counseling would help. |
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