The KLS Project
Avner asleep

Please Don’t Yawn Right Now, KLS Haiku #2

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.

Avner asleep in the car

Looking for a Needle in a Stack of Needles

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.

Avner sleeping on the sofa early May 2017

Sleeping in Today, KLS Haiku #1

Between April 25, 2017 and December of that year, we finally had confirmation of Avner’s diagnosis but very little insight and no effective treatment. I wrote a series of haiku style poems which captured my mood at that time. Here is the first.

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.