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(This blog tells my family's story. To see more, click "blog" at the top of this webpage.) My initial expectations about Beth’s spinal cord injury proved wrong, in spite of my work experience with disabilities. At a Toledo Raptors fundraiser at the zoo, I spoke with a lovely friend with multiple sclerosis. As we chatted, I remembered our first meeting a few months after the car accident. Then, I judged everyone by their disability, certain that quadriplegia won the ‘worst disability’ contest. I thought that nothing could be as awful as a complete, or nearly complete, spinal cord injury in the neck. I stubbornly clung to that misconception, weighing one disability against another. Through the first years, my view gradually shifted until I compared my earlier notion to a blind person judging a swimsuit contest. Everyone’s lives shared the essence of an iceberg, not just quads. What we couldn’t see under the surface always mattered. One person’s heaven could be another’s hell—with or without a disability. Beth volunteered for WaterWorks in Toledo for the second year in a row, helping children with a disability learn how to swim. At one session, she talked to a group of preschool children before getting in the water with them, not surprised by blunt questions. A little boy asked, “How do you sleep in your wheelchair?” He didn’t look convinced by her answer. In early April, Beth blew out eighteen candles on a chocolate cake. Around our kitchen table, Ellen and Lizzy sang happy birthday with John, Maria, and me. I wondered what Beth wished for. Always skeptical of quad-friendly gadgets, she unwrapped a small present from me, a curved plastic tool, and rolled her eyes as only a teenager could. When I explained what it was, she agreed that opening a soda can with the curved tool would be better than using her teeth. Even so, she chose a different solution. Practice more—and more—until her hands could do the trick. Next: Spring Cleaning on Steroids (at the group home) and Senioritis! 
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(This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth decided to switch club teams from Toledo’s GTAC to the Seneca Aquatic Klub (SAK). Her friends from the high school team also swam for SAK. They practiced down the street from our home in Tiffin, compared to an hour drive to Toledo. The tough part would be telling Beth’s first swim coaches at GTAC. They supported her initial attempts to learn new strokes when it looked impossible to me. She planned to tell them about switching teams at her next practice. When we left intensive care, the doctor placed no restrictions on swimming. Still recovering, Beth insisted on driving to Toledo with me a week later for a swim practice. After a few laps, she felt nauseous, but only asked to get out of the pool to use the restroom. She did not elaborate, complain, or make an excuse. The coach teased and called her a wimp. He honestly didn’t know it was possibly the worst thing to say to a teenage quad, especially one like Beth who was sensitive to appearing weak. In the locker room, I handed her tissues to wipe her eyes. She asked me not to mention the insult or her nausea. I urged her to leave with me for home, but she returned to the workout and actually did wimp out on breaking the news about changing teams. At home, I encouraged Beth to make the phone call to GTAC. A talented procrastinator, she decided to put off telling them until after the Paralympic Trials meet in April. To give them the credit on the chance she made the Athens Paralympic team. Even if she earned a spot, not a sure thing, September in Greece would interfere with Harvard. Should I hope Beth would qualify for the '04 Paralympics? Perhaps not.  (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) The next health emergency gave us no warning. Thankfully, I wasn’t working at the group home on an early March morning when Beth woke up very ill. I drove her directly to the emergency room at St. Vincent in Toledo. I cut time off the hour drive, despite the morning rush hour. A doctor quickly admitted her to intensive care. After numerous tests, Beth acquired the diagnosis of peritonitis, a dangerous infection. The urologist who performed her bladder surgery told us they found extra fluid in the abdomen. The small bladder tear along a surgery seam would heal on its own if they kept the bladder empty. The nurses also monitored her closely for sepsis—an even more frightening and potentially fatal condition. With it, the immune system went awry, spreading inflammation that could lead to organ damage, septic shock, and death. I learned later that sepsis is one of the leading causes of death for quadriplegics. I stayed glued to Beth’s side in intensive care. I shared her alarm with the persistent high fever and strong abdominal pain, especially since she had limited sensation in her trunk. She never asked to look at her homework in the hospital and I never suggested it. I was polite but very involved with the medical staff. And I could be a little demanding at the nurse’s station when Beth needed something. With my sick daughter, I put on a brave face to reassure and comfort. Even though we both were frightened through the first days in intensive care with no improvement. To keep things running at the group home, I made quick phone calls in the hallway where I met a dad soothing a baby with a failing heart, a mom entertaining her toddler with a brain tumor, and a grandma weeping about a terminal diagnosis. I didn’t share the details of those encounters with Beth. She very gradually felt better and her vitals improved. When I drove her home after a scary week in the hospital, she didn’t feel invincible, so John Mayer sang her favorite song by himself from the CD player. We arrived in Tiffin bone-tired with strong antibiotics. And a new perspective. No longer a question, Beth and I wholeheartedly agreed that the seven hundred miles between Tiffin, Ohio and Harvard was definitely much too far for us to be separated in the fall. She made the decision to live in a dorm her freshman year while I stayed off-campus. We’d be in the same city, but I wouldn’t be her personal care assistant. I’d help set up her dorm room and be there for transition support. That was fine with me. There was no way I could drop her off at a dorm in Massachusetts and return to Ohio.  (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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