Avner, passed out on the sofa

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 experience of caring for our son has brought Barbara and I closer these last few years, but a bitter custody battle stood out as the only accessible metaphor I could connect with, regarding how KLS episodes affected our home and me in particular.

Visitation rights?
That bitch, KLS took them.
Visits are a gift.

But my visits are
Unscheduled and infrequent.
I never get long.

I miss him between
The episodes of sleep and
Foul moods, some violent threats.

Sometimes, he’s childish.
I just wish I had more time
Spent with my sweet boy.

The one who visits
And talks to me about life,
Doing stuff with me.

Can I keep him here?
My son belongs at my side
Before he grows up.

Before life wedges
Itself between our dreams and
Our family’s time

Maybe this time I
Can keep him just for myself.
I don’t want to share.

Maybe this time I
Can abscond with him in love.
Taking him with me.

She’s a metaphor
And this disease that takes him
Won’t give me visits.

I need to savor
These lucid moments now
Or they slip away.

I can rail at the
Heavens but they don’t answer
Or pay me mind.

No one knows a damn
Thing to get a real treatment.
All we do is hope.

What good is our hope?
It doesn’t give us a cure.
But we can’t give up.

We have our seats in
Limbo. Watching and waiting
For him to wake up.

Worried that he will
Slip back into his dreams and
Then it starts again.

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