Noah's Road

I try not to let the fact that Noah was shaken define me, but it’s tough. I blog about it. I write about it. I advocate against it and welcome other parents facing this same nightmare into my life. I carry the burden of knowledge that I put my son in harm’s way by trusting the wrong person. I’ve said all the what-could-have-beens and the what-should-have-beens.

And yet…

I sit on my floor. Noah, now two-years-old, brings me one of his favorites books and he sits on my lap. He looks at the pictures and turns the page when I tell him to. And then Avry, his one-year-old brother, walks up to us, wanting to be in on the action. He tries to turn a page. Noah pushes Avry’s hand away before standing up and fussing, usually tossing the book onto the floor in a fury. Avry stands in awe of what he’s done wrong – again. I play the moderator by trying to balance both boys on my lap while we look at another book. This never works, but I continue to try it anyway.

Today Noah climbed into the front-loading washing machine. He faced outward and balanced himself in the middle, his legs crossed in front of him. He moved his little hands along the bumpy, holey sides, and he smiled.

These are happy moments. And there are many.

Avry has learned to wipe his own nose. We hand him a tissue and say, “Wipe your nose.” He takes the white paper, and with perfectly fat fingers, he moves it back and forth under his nose. This is brilliant to me, that a one-year-old can comprehend a command. Who taught him this? We only began asking him to do this after we had witnessed him doing it himself. This is our first time raising a son who isn’t brain-damaged, who hasn’t had a year of his life taken away by seizures, and months taken away by the fog of medication. What he understands astounds me.

“When do you think Avry will say Mama?” I said to Mike one night recently. “I mean really mean it as Mama, not just babbling.”

“I don’t know,” Mike said. “I’m sure it will be a happy and terribly sad day.”

He says this, of course, because we have never heard Noah say Mama or Dada. I was quiet. I had hoped for a moment to focus on what was good and happy. But there it was again, the sadness that creeps in, sneaky, sneaky sadness. The sadness is there when Avry wipes his nose, when he tries to brush my teeth with his toothbrush, when he does anything that Noah can’t.

On Thursday nights I take a ballet class. I somehow manage to slither into my leotard, put on my canvas ballet flats, and with a group of women who know nothing about my hardships, I dance. I don’t think of my sleeping babies at home. I don’t think about the hours of cooking I’ve already done this week for Noah. I only suck in my belly, keep my butt tight and my head high, and I lose myself. Just to be safe, though, we close the classroom door – to keep that sneaky sadness out.

Wherever we go, whichever doctor or therapist we see, everyone knows that Noah was shaken. We are there because of this. I fight to get my way and argue over his care because it is where I seek to insert my control over a life created, ultimately, because someone lost her control.

Since then I am mom to an epileptic boy who eats a diet of 90% fat and who is skinny as a rail. I’m mom to a child who loves to hug me tight and then bite my bare skin because it feels good to him. I’m mom to a redhead who’s so sweet that he’ll rest his head on the cat’s soft fur for a snuggle before bolting up to chase after his much faster big brother. I’m a mom who reaches out to other moms who I know share my ups because they so intimately share my downs. And I’m a mom who has ostracized myself from most of the people who shared my life before Noah was shaken; it’s too hard to share in their normal, their life that could have been mine.

Clearly I struggle with who I was, who I am, and the image of a mother I’d like to be. Maybe it’s too soon to try and escape what might define me. Perhaps what defines me gives me the greatest power, to share our story, our happiness singed with sadness. Or maybe, I’m just a mom. And that’s what makes me special.

This entry was posted on Thursday, January 27th, 2011 at 5:16 pm and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can skip to the end and leave a response. Pinging is currently not allowed.