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An Introduction to Kleine Levin Syndrome

My son’s greatest challenge every day is waking up. Kleine Levin Syndrome (KLS) changed my family’s life. Kleine Levin Syndrome is a poorly understood disease that’s marked by recurring episodic symptoms of hypersomnia, derealization and mood changes that are not yet fully explained. What that really means for our family is that I’ve been speaking to doctors about the possibility of KLS, progressively moving towards a diagnosis for my son

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 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.