(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
A busy summer stretched out before us. Beth signed up to volunteer at St. Vincent again. She accepted a part-time job in an office and bought tickets for a John Mayer concert. She registered for Ohio’s Youth Leadership Forum, a five-day event for teenagers with a disability. I scheduled college visits around her first and only National Junior Disability Championships in Connecticut. Plus swim practices a few times a week and competing at her second USA Swimming Disability Championships.
One thing we didn’t anticipate: a mid-summer invitation that would require an eight hour flight one way.
Before summer school started for John, he drove Beth and I to the Chicago Shriners Hospital instead of traveling in the Shriners van. (We had a side trip planned after.) The occupational therapist gave Beth adapted tools to try, including a rocker knife with a knob handle to cut food. The progression of her kyphosis and scoliosis had significantly slowed.
A doctor told us that swimming strengthened back muscles, and if the trend continued, she would not need surgery.
No fusing the spine with a metal rod that would limit her flexibility and movement even more, in addition to risking more spinal cord damage. One of the teenagers we met at Green Springs could walk before fusion surgery left him with paraplegia.
A hand surgeon recommended muscle transfer surgery to give Beth working thumbs. She politely told the doctor that she could use them without surgery, thank you very much. Even though her tenodesis grip was a feeble skill compared to controlling each thumb individually. She refused to consider muscle transfers since the procedure required several weeks of complete dependence afterwards. She wouldn’t give up any of her hard won independence.
The Shriner’s social worker asked about college. Before the accident, we assumed Beth’s college would be in Ohio. She decided to major in biology and made a short list of possible colleges with top biology programs. All out of state.
“The travel I did with swimming opened up the world to me,” Beth said.
After more doctor appointments, we drove across town for a brief look at the University of Chicago. The next day, at the University of Illinois, we met with wheelchair sports staff. The University of Michigan impressed us. She also had toured other colleges with her brother and sister in the past, including Case Western in Cleveland. Beth considered Duke in North Carolina and Johns Hopkins in Maryland, but there wasn’t enough open time to visit both before her senior year of high school started.
The first destination of a non-stop summer: Minneapolis!
I'm a mom on a mission to share the power of hope and connection! For signed copies of my new memoir, click BOOK. ❤ Cindy
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