This is my life

Today, a friend of mine sent me a text saying that her daughter came home from school and asked why a picture of Mila was posted in her elementary school. My friend asked if I knew about this. I didn’t. When I read the text, it confused me at first, almost made me smile to know that a photo of my sweet Mila bug was posted on a wall for everyone to see. It brought me back to a similar moment when Mila was just one. We were heading to our baby tumbling class when I happened to spot a poster on the wall with a photo of Mila smiling up at the camera. At the time, it made me laugh and feel proud that someone choose my smiley little girl to use on their poster. I grabbed a copy and stuffed it away in my “Mila” folder back at home.

When I read my friend’s text, my heart went to that same place of pride. But then it dropped and I cried. I imagined students Mila’s age racing down the hallways past Mila’s photo with their backpacks on, maybe heading to their classroom or to recess or the cafeteria. All things that Mila may never know in her life. Things even I as her mom know nothing about. What do six-year-olds do at school these days? Do they write sentences in those black and white notebooks? Do they read stories? Do they learn about other countries? I hate going to that place, thinking about the kids she used to call friends. The ones that used to swarm around her, who would want to run around the house with her, to jump off the bed with her, to dress up like fairies and princesses with her. The memory is painful. It doesn’t make me feel anger. The feeling just forms into a giant wave of pain, of a sadness that’s hard to describe, which covers me, suffocates me. A sadness for Mila, for us as a family, for the life I always assumed we would have. Why wouldn’t we?

Since receiving Mila’s diagnosis of Batten Disease just two months ago, I have avoided looking back at photos, of opening up our Mila folder in our old wooden filing cabinet. But today I decided to look. I found the poster of Mila from the tumbling class. It made me instantly smile. She really was so cute, so radiant. I found a stack of colored construction paper with squiggly marker lines across them, feathers, glitter, cotton balls, preschool teacher’s handwriting “To mommy”. And then I found a slightly browned cover of Boulder’s newspaper, the Daily Camera, from November 2012. There was Mila, just two-years-old, decked out in her brightly colored paint-splashed snow suit with furry lined hood standing in the snow and smiling up at the camera once again. I remembered all of the cute photos included online with the article – photos of a girl full of life kicking piles of snow and climbing up onto the planters on Pearl St.  I stuffed the papers back in, and added to the top a copy of the Daily Camera from just last month. The title stared up at me “Boulder County Girl Diagnosed with Batten Disease”. I felt my breath push out of my chest. I closed the folder and stuck it down into the filing cabinet.

Sometimes I feel like I’m on the outside looking in. That I’m watching someone else’s little girl on the news, reading about her in articles, walking past her photo in a hallway and feeling tears well in my eyes at the thought of that terrible thing happening to my family. And then trying to convince myself that I can’t take on the world’s burdens, something I’ve always struggled with. I can’t make the sadness of what this family is going through my story or my life. I just need to feel sad and move on. But then I wake up, as if I’ve been slapped in the face, and look at myself in the mirror. This is my life. This is my daughter who is dying. This is my son whose future dangles in limbo. I breathe deeply, warm tears pour down my cheeks. I lift my chin as I hear giggles coming from the other room. I smile at what I have today. And hope for what tomorrow may bring. 

- Julia, Mila's mommy