This is one of my favorite photos of her.
Bethany's disorder has never been diagnosed, even though the best neurologists in the world looked carefully at her tests. That included the Cleveland Clinic, Harvard, and doctors in Switzerland. Erin Joy, born six years later, had the same disorder, with slightly different symptoms. Both girls got progressively weaker but matured in many ways, laughing at all kinds of jokes and tricks.
I mentioned in the post about Erin that we never really know how many people have lost children. The wife of my favorite professor at Yale opened up her locket to show us the baby they lost. The tiny photo was always around her neck.
My neighborhood friend lost his son when the boy was 17. Now one couple, Icha-readers, are facing the life-threatening surgery of their son.
I list these facts because there are two responses to these crises. The most common is to run away, or change the subject, or to blame the illness on something the individual or family did wrong. I am quite sure Job's Comforters had a lot of children, because their descendants are still with us today. Many of them have become Lutheran pastors, from my experience.
The least common response is to relate to the situation in a realistic way, to listen, to provide real help, to express thoughtfulness in words and in action. Some might take a cue from my experience with a dead battery (twice) in this area. In both cases, when I asked for just a little help, to phone AAA, the strangers said, "No, I refuse to let you depend on them. I will get your car going again." And both did exactly that.
I pity the unbelievers who do not realize how much God blesses special children and those children who undergo special challenges. Those unfeeling people miss the greatest blessings of life, but even worse, their attitude makes them blind, spiteful, and juvenile in their words and actions.
I had a class where some students started joking about the "short buses." That was a new slang term for me, so I asked what they meant. They explained that the special education children normally were on the short buses, so that was a derogatory term. They had another term, they added to help me out. It was worse.
I tried to explain to them, gently, that they were making an enormous mistake, because they did not know who in that room had a friend, child, sibling, or grandchild being mocked in such an ignorant fashion. I pointed out that people would mark them as immature and they would shut down many enjoyable experiences.
When a class on diversity was forced on me, I spent time teaching about diversity in physical ability. One participant was the top assistant for the billionaire owner of the school. Her husband was in a wheelchair. Likewise, a hostess at the Red Lobster here in town is married to a man with Osteogenesis Imperfecta, Brenda Kiehler's disorder. The husband of the hostess is also in a wheelchair.
There are a lot of people in wheelchairs, breathing from tanks, and otherwise limited in some fashion. They are not lepers, but people who are glad to have some of the health most of us enjoy.
Bethany loved being hugged. I could not squeeze her long enough. She would make a huffing sound and grin. She liked to hear stories and joke with us in her own way. Her favorite nurse played games with her, making Bethany laugh. I swung her in circles, which cooled her off and gave her a little thrill.
a former missionary-nurse who lost her voice.
