• Choose a category
• All
• Classic-Fiction

By Root 404 0

There were the children returned to abusive homes through error and faulty oversight. On the upside, I think my siblings would mostly agree that our full house seasoned us to accept the unusual as usual. We were often perplexed by people who were uncomfortable or even fearful in the presence of an obviously mentally disabled individual, since we had learned to assume that if someone was barking at their macaroni, they always barked at their macaroni. Then again I also learned hard lessons about my own character, angrily sticking up for my one of my sisters when a kid in the library teased her about her disfigured eye one day, then mocking and tripping her cruelly the next. In the ever-changing cast of tykes carrying damage—congenital, traumatic, physical, emotional—we came to see that even in the midst of our own warm childhood, all was not well everywhere.

There is every reason for me to emulate my parents, but I am hesitant because after watching them for my lifetime I know exactly what the workload entails, and I’m not sure I’m up to it even on a small scale. I am keenly aware of what it cost to provide us that rich life. My sister Rya arrived on a day when we were making lumber. I remember walking in for lunch with the rest of the sawmill crew, standing on the porch steps sweeping sawdust off my jeans, then walking into the kitchen to find a tiny blue-tinged baby asleep in a bassinet beside the table. Rya had Down syndrome, and the blue tinge was caused by a congenital heart defect common in Down syndrome children. In Rya’s case, the cardiac issues were further complicated by a lung disorder.

For the next five years, as Rya underwent a series of surgeries and hospitalizations, our house took on the trappings of a pediatrics ward. Green oxygen bottles lined the porch. A lazy Susan on the counter was covered with medication bottles and there was digitalis in the refrigerator. Mom was forever coming from and going to doctor appointments and blood draws. Some of Rya’s more serious surgeries were done in the University of Wisconsin teaching hospital in Madison. I accompanied Mom on many of these trips while Dad stayed back to milk the cows and care for the rest of the crew. Once when Rya took a precipitous turn for the worse I remember holding oxygen on her as Mom drove through a blizzard to the emergency room. In addition to changing Rya’s diapers, we kids learned how to change her dressings and inspect the sutures for signs of infection. When my sister Kathleen was a toddler in footie pajamas she would tip Rya across her lap, cup her hands, and clap up and down Rya’s upper back to loosen the congestion, just as she had seen Mom and Dad do.

Rya learned to speak only a modest few words, and even those were difficult for anyone outside the family to understand, but Mom expanded her ability to communicate by teaching her some sign language. She loved to clown—after going to a high school track meet, she would stand by the kitchen sink, raise one finger to the sky, go “bang,” and then do a high-speed toddle across the kitchen floor, laughing all the way. She entertained us as much as her heart and lungs would allow.

In the end, it was her lungs that failed her. She needed more and more oxygen. When she could no longer get enough air to sleep lying down, Dad built her an inclined bench from boards he had sawn himself and she took to sleeping sitting up, resting her head on her thin arms, her favorite doll by her side with its own oxygen mask. In the background the oxygen humidifier bubbled with a sound that suggested a brook in a meadow. The doctors said there was nothing more to be done, and finally they were right. Soon she required round-the-clock care. Dad sold the cows—the family’s only source of regular income—so he could split shifts with Mom. The night before she died, we were all in the living room around the couch that had become her bed. She was smiling widely and enjoying our company. At one point I went to the kitchen, and when I looked back in the living room I saw that she had removed her oxygen mask and clambered