(This blog tells my family's story. To see the earlier bits, click "blog" at the top of this webpage.)
I convinced Beth to take a day off of school to go to the Shriners Hospital.
Two volunteer drivers met us in Toledo early in the morning. We left our car there and boarded their van for the four-hour drive to Chicago. The friendly drivers lived in our hometown, Tiffin, and one was the grandfather of a friend.
The Shriners Hospital made a colorful first impression, effectively designed to be welcoming for families. Beth and I met individually with each member of a large team at the spinal cord injury clinic, including a urologist, orthopedic surgeon, social worker, occupational therapist, psychologist, and physical therapist.
A bubbly nurse took us on a tour of the hospital, pointing out a display for the Make-A-Wish Foundation for children with life-threatening medical conditions. She casually offered to make a referral for Beth, and introduced us to another quad and her mom who recently returned from a cruise in Alaska through Make-A-Wish. My family had rarely traveled.
However, the offer bothered Beth. Between appointments, we talked. Make-A-Wish clashed with her wholehearted belief that her “condition” would get better, not worse, based on the one scale that mattered to her—decreasing dependence. She knew that cut spinal cords did not get better, and the medical miracle of re-growing cut cords might not happen in her lifetime. The frightening severity of her recent pneumonia and other risks of quadriplegia did not factor into her decision. Beth turned down the nurse’s offer, certain that others needed Make-A-Wish more than she did.
I trusted my daughter’s judgment over my own.
The entire team at the Shriners clinic convened with us at the end of the day to make recommendations. We learned that Beth’s damaged back muscles changed the spinal column and worsened curvatures. She acquired two new diagnoses. I had never heard of kyphosis, an outward bowing of the back, but I understood scoliosis, a curvature sometimes resembling the letter S.
When I was a teenager, way back when, I had worn the Milwaukee back brace, an antiquated treatment for scoliosis. The brace covered my pelvis, with a metal bar that curved out in the front and connected to a chinrest, making three years of junior high and high school more awkward for me than usual. If the curving and bowing of Beth’s back continued to worsen, her organs could be damaged and major surgery would be needed to straighten the spine with a metal rod.
I added back surgery to my ocean of anxiety. I worried for Beth, for the rest of our family, for friends, and for the whole world. The relentless ache in my head dug in deeper, filling the space behind my eyes. I talked to my psychologist every week about pain, guilt, and depression. She told me that guilt could resemble grief and offered rare advice: find things to look forward to. In other words, stop waiting for the next tragedy or health crisis.
Easier said than done.
A mom with a story