(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
John and I rearranged the first floor of our home at Beth’s request. We moved her hospital bed out of the living room and into the small first floor bedroom where I had been sleeping. The full size bed and nightstand filled the bedroom, but left enough space for the wheelchair. I added length to the pull cord on the ceiling light so Beth could reach it. We restored our living and dining rooms as they were before the accident.
With the new arrangement, I slept in the basement bedroom with John since Beth rarely needed me through the night. When she did, we both had cell phones within reach. She often stayed up later than I did to finish homework or to read, the lamp with the big switch within reach. She continued to check books off her list of the top 100 classics and highlighted ones to pick up at the library next.
At a follow-up visit to the Shriners Hospital, we met more patients and parents. One discussion touched on college, but Beth was only fifteen, so college still felt far off to us. She assumed she would attend, the result of deliberate indoctrination. Since her preschool years, “When you go to college...” started random conversations at our house.
Another teenager we talked to planned to attend Wright State University in Dayton, Ohio, a top choice for wheelchair users in the Midwest because of underground walkways that avoid winter weather. At Wright State, when pressure sores required a student to stay in bed, an able-bodied friend pushed his hospital bed down the street to class.
Was that a good thing?
Beth’s asthma symptoms had subsided since her bout with pneumonia, leading to less medicine and longer intervals between visits to the lung doctors. A Shriners doctor reviewed a new x-ray and explained that the angles of her scoliosis and kyphosis (bowing) progressed as expected, making the metal rod fusion surgery more likely in the future. We learned that the unyielding rod would hinder every possible kind of movement and add to her limitations.
Despite all the odds stacked against her, Beth’s general goal shifted from more independence to complete independence, an extremely rare feat for quads.
In a world where wishes came true, I wanted all of that and more for her, but the brass ring looked too high.
Laraine, her extraordinary physical therapist, said, “Beth made up her mind that she would be independent from a wheelchair so she could take care of herself in a college setting.”
I'm a mom on a mission to share hope for those in crisis. My new memoir launches on April 9, 2019!
Follow my once-