![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Beth's young African Gray parrot screeched and squawked in an impressive range of piercing, demanding sounds. I tried to give Timber attention when he wasn’t yelling at me, but he didn’t like my attempt at a behavior plan. The parrot woke up early every day, an impatient alarm clock. On weekends, John and I took turns babysitting so the girls could sleep in. During my turn, Timber sat on my shoulder while I folded clothes or cleaned or cooked or rewrote my to-do list. I couldn’t sit still. Through Beth’s freshman year of high school, weekends focused on recovery. Maybe a movie with friends or an excursion to the YMCA pool. Our packed weekdays were overwhelming and exhausting between school, physical therapy, occupational therapy, extensive homework, and frequent medical appointments. Every small action of life was a challenge. The approaching holiday season lost its appeal for me. Timber shrieked when I pushed his cage in a corner to make room for our artificial green tree. With everyone busy, I decorated most of the tree, topping it with a red glass cardinal. The sweet ornaments my kids made when they were little did not evoke the usual nostalgia. I fought more tears, thinking about my babies growing up and the end of childhood. I avoided people and neglected friendships. I dreaded the social interactions required at holiday choir concerts and other events; “How are you?” echoed from well-intentioned acquaintances. How should I respond? I would not share my regret in the high school lobby. I refused to be a lightning rod for pity. When I was asked about Beth, deadly health risks of quadriplegia came to mind. Instead, I said something about her amazing attitude and found an excuse to retreat. My counseling sessions slammed me every week with sharp dichotomies. I had no disability and fought with pain every day. I appeared calm and anticipated crisis. I loved my family and my heart ached. My guilt spilled over in waves. How could I contain it? My psychologist didn't know. She reminded me about all the things out of my control—which might have been helpful for someone in a better frame of mind.
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![]() (This blog tells my family's story. To see more, click "blog" at the top of this webpage.) Eager to get back in the water, Beth asked for a schedule of open swim times at the Green Springs rehab center. I never—ever—suggested going to a pool. Life was too overwhelming. However, I rarely questioned or discouraged her ideas. Plagued by guilt, I felt like the last person who should say no. In the warm water pool with me instead of a therapist, Beth moved to a floating position by herself after hanging on at the wall. After a few laps, she asked about something new. In the middle of the lane, after sinking, she tried to get on her back to float (and breathe), but without a wall to grab onto, she couldn't keep her head above water long enough to get on her back. Yet. Afterwards, the rehab locker room overflowed with elderly ladies getting ready for a class in various states of undress. On the way home, Beth asked to pick up a pool schedule at our local YMCA. I talked to Laraine to find out if a typical pool with a cooler temperature might trigger autonomic dysreflexia, and she said yes. I needed to be alert for flushing of the skin, a pounding headache, sudden changes in heart rate, and dizziness. And high blood pressure that could trigger a stroke. I put a blood pressure monitor in her swim bag. “I taught myself how to swim on my back independently,” Beth said. “I slowly progressed to swimming laps at the YMCA.” At Tiffin’s one indoor pool, I lowered her from her wheelchair to the deck and then again into the cool water. No scary symptoms surfaced. The pounding headache belonged to me. I stayed close in the water and followed her leisurely floating back and forth, arms waving under the surface. It appeared to be smooth sailing, but I knew better. Turning around at the wall alone required strenuous exertion. Ten minutes with frequent long breaks made her arms tremble. The lifeguard didn’t know how to operate the sling lift, so I squatted at the edge of the deck. With Beth in the water with her back to the wall, I reached under both of her arms and pulled up, thoroughly scraping her back in the process. I felt like an awful mom. I couldn’t lift her from the deck to the wheelchair by myself, so I asked the lifeguard to grab her knees while I lifted under her shoulders. Others stared as both of her legs extended in bouncing spasms. I bent her knees and put her feet back on the footrests as quickly as possible. I had more lessons to learn. The second time at the YMCA pool, Beth’s foot twisted in the metal of the wheelchair when I lowered her to the deck. My fault. I had focused on a smooth transfer, not on her feet. She felt no pain, but spasms intensified in her legs, her body’s indicator of a problem. She tried floating, but too many spasms made her uncomfortable. I managed to lift her out of the pool without scraping the slow-healing scabs on her back. The next day, Dr. Miller examined the swollen foot and an x-ray, too early for the stress fracture to show. She prescribed a muscle relaxant to tone down the spasms. The foot would heal on its own without any weight on it. I was grateful that Beth couldn't feel the pain of the injury, but it felt like an odd kind of gratitude. I couldn't refrain from wishing that she could stand and walk—and yes, feel pain in her legs and feet, too. ![]() (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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