Thursday, July 17, 2014

A road to happily ever after

Sam is tired. I am tired, too. It has been a long, stressful hour.  

We are both tired and weary warriors fighting separate yet related battles. We've fought this battle before. We know it well. Neither of us wants to be in this dark place. But here we are. I watch the troubled look in Sam’s eyes. I see him begin to lash out and quickly restrain himself. I see his pain. For the next twenty minutes, we repeat this sequence many times.

After an impressively long string of near perfect behavior, Sam has inexplicably changed, defaulting to unpredictable actions. The prevailing mood is tense. Where did this come from?

I step back and wait. It is quiet. As suddenly as the behavior began it is over. Within minutes, a seizure follows. Was that behind the unexpected behavior? The answer is perhaps locked in Sam’s mind. He cannot or will not tell me.

Sam looks up at me from the seizure, confused. Finally, he speaks: “Tongue hurts.” “I’m sorry.” I respond automatically as I help him. He has no memory of the seizure. He does remember the behavior. In acknowledgment, he offers up, “Sorry Mommy. Sorry, Josh. Sorry, Mr. Dog.” In the next hour, he will apologize to just about everyone he knows.  Perhaps even some he doesn’t.

A friend points out that 135 days of near perfect behavior is amazing for any person; she is right. I know this. Still I am sad. I want the impossible. I want happily ever after. I want the fairy tale.

I watch Sam settle. I say a silent prayer that this is a brief detour; a blip. I will it to be so. The chorus of “Sorry Mommy, sorry Josh” plays its final round. This is a positive sign I think. I hope.  Exhausted from the behavior, exhausted from the seizure, a moment later he is fast asleep.

We wake the following morning to find the sun is shining once more. The sun continues to shine on the days that follow. They bring continued calm, new hope. I remind myself we are a work in progress, there are no fairy tales. We will never travel a straight line, there will be bumps, twists, and turns. 

We will find our way.

Sunday, July 6, 2014

Close your eyes

I know his secrets. I know he was restless again last night. I can see fatigue in his eyes.

“Are you tired?” I ask.
“No,” he says as I watch him yawn.
“Shall I hold you?” I offer.
“Yes,” he says as he lifts his head for me to cradle him.

At nineteen he still looks at me imploringly, willing me to know his needs. With a look that says fix it. Make me feel right. And though he towers over me now, though his childhood years are behind him, I hold him as I always have. Today I know he needs sleep. I know like a young child, he resists leaving conscience thought. He can't find his way to slumber.

“Close your eyes,” I say.
“No close your eyes,” he replies.
“Just close them for a minute,” I suggest. "Just rest your eyes."

He accepts the compromise. Within a minute, his eyelids stop twitching. His body relaxes. I hold him until his breathing grows slow and steady. I carefully move my arm away. Then I inch away. In the soft light of the afternoon sun, I watch him. At peace. Aware I still have the power to make his world feel safe. 

And I wonder about tomorrow.

Follow us on Facebook at