Wednesday, May 22, 2013

Being Noah

I've been thinking a lot about Noah and his diagnosis. We see evidence of it every day, at every activity from eating to dressing himself to playing soccer in the backyard. MD (Myoclonus-dystonia disorder for the uninitiated) is part of our daily existence and many times I forget. I forget that he has a condition that will never get better. I forget to not yell when he trembles and spills his milk (often) or his spoon suddenly flies out of his hand onto the floor. I forget to not scold him when he's stumbling on the soccer field, attempting to cover his missteps by acting goofy. At almost five years old, he's a master at redirection.

"Mommy, what do you think runs through the pipes underground or through the walls? Is it only water and gas or is there electricity? Does it have a color? Or a taste?"

"Focus on your scissors, Noah. Open, close, open, close. Hold the paper with your free hand. Like this."

"Mommy, when an astronaut goes to outerspace, how long does his air supply tank last? Can he REALLY do backflips in the air?"

"Noah. Pay attention to your task."

"I'm done with cutting now."

His handwriting is atrocious, he can't cut a straight line for the life of him, he despises "art" at school, he will NEVER choose crafts over...anything else.

But he's perfect. He looks like me but is his father's child. He may have inherited Tim's rare genetic mutation but he also inherited his wicked sense of humor, his curiosity and inquisitiveness and his talent for making friends. Noah reminds me that you never know what you're going to get and, sometimes, what you get is exactly what you always wanted.


Michelle said...

So lovely, Sara. Both of you. All of you.

clueless but hopeful mama said...


Reading this, I thought about my oldest, who has sensory and attention issues. I struggle to not get frustrated with her, and am constantly reminding myself that many of her difficult behaviors are things she really can't help. Thanks for a taste of perspective. I needed it!

Nilsa @ SoMi Speaks said...

What a touching tribute, Sara.

k said...

He does look like you. And his heart is kind and strong like yours is, too.

Anne said...

He is so great. So, so great.

Miranda said...

I love him.

bessie.viola said...

Beautiful. And so totally true - what you never knew you always wanted.

He is adorable.