Avner, passed out on the sofa

Visitation Rights, KLS Haiku #3

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.

Avner and Jonathan in their garage

Facing Painful Choices, the Sacrifice of Isaac Raising Disabled Children

It occured to me, that maybe we have been reading this story of the binding of Isaac all wrong. It’s not a test of Abraham’s will, or devotion or even his ultimate morality. It’s not a test at all. Through Abraham’s eyes it’s a journey of the father who faces an impossible task regarding a child he loves. Abraham has no choice in the matter. His only option is to move forward through the horror ahead.

Jonathan and his friend Leonard planking.

Seeing Some of the Worst Symptoms of KLS

Avner would become mute and disconnected from everything else around him. On one occasion, he left the Scout House to sit on a bench outside. When our Scoutmaster, Crill and I tried to speak to him, he refused to acknowledge us. I tried to get him into my car at the end of the meeting. Instead, he got up and started walking towards home, only a mile away. I called Barbara from the Scout House to let her know that Avner was walking home. He walked past her which worried us both, but eventually turned around and came inside.

running shoes with orthotic insert

Stepping Through the Crisis

His leg just hung from his body, showing no signs of life, except a pulse. We visited a spinal specialist for an expert opinion. He performed a physical exam and a basic pinprick assessment which also indicated a problem. An orthotic insert was ordered that fit in Avner’s shoe to manage the drop foot. The doctor also ordered an MRI.