The third poem in a series from 2017 explores that feeling that KLS takes our own children from us and leaves us to care for someone who isn’t quite the child that was there before. Parents of children with Kleine Levin Syndrome express this sentiment in conversation and our online support group.
the second poem of a series of poems that I wrote in 2017 following my son’s diagnosis with Kleine Levin Syndrome. Imagine, that something as simple as a yawn could strike terror in your heart. Each yawn telegraphed to me that we would lose Avner to sleep again and we never knew if he would be back as himself or The Monster that occupied his body during episodes.
Among the other troubling behaviors Avner exhibited, he would sometimes drop off to sleep while on the way to school. He would fall asleep against Barbara in restaurtants or in the car after dinner. Sometimes it would be a struggle to wake him to go home or come inside our home.