Ella's look often falls into a gaze as she watches her siblings and the neighbor kids run, jump, and climb. Her wheelchair sits silently in the grass waiting for her to push the joystick, bringing it to life.
Without missing a beat she grabs hold of her controls and charges forward over the rough terrain. Each bounce of the chair over the lawn gives her muscles practice at maintaining her posture and head position. She joins the other kids in the only way she know how and begins laughing, playing, and "running" around.
I often wonder what goes through her mind as she watches people.
We were at the playground just the other day. After her 10 minute swing fix, she wanted to cruise the ramps. There was a little girl slightly younger than Ella who was running up and down the ramp. For what seemed like an eternity to me Ella simply sat there and stared at the girl. Every time the girl turned her back to Ella and ran up the ramp I could see Ella's eyes track the little girl's legs, from waist to foot, her expression cold and stoic. She seemed to "snap" out of it and took charge of her chair, racing up the ramp, often circling the little girl.
Ella's awareness of what it means to have SMA continues to grow. She knows no other way of life. And despite being confined to a wheelchair, having limited mobility and strength in her arms and legs, she is a happy-go-lucky kid; enjoying what the world has to offer.
My awareness, of course, is reinforced every day of my life. Watching her as she grows, as she socializes, as she sleeps, as she laughs, and as she cries has provided tremendous insight into life itself. As I was pushing her on the adaptive swing in our yard I noticed that the ground underneath her swing is lush grass; vibrant and full of life. The playground equipment next to her, a hanging bar and a traditional swing, hover above a patch of dirt with weeds trying to grow. Each time Ava or Henry, or any neighborhood kid, scrape their feet along the ground to start or stop their swing, or use the ground as a landing pad of sorts, they wear down the life of that patch of dirt.
It's odd to see, I must admit; underneath a swing set, as plain as day...a patch of grass; a patch of dirt.
It does, however, represent what our life is like at times. While SMA can be riddled with heartache, frustration, confusion, despair, depression, and anxiety...it too, can hold beauty in its grasp. The beauty of those afflicted with this disease lies in their infectious personalities, obvious intelligence, and perseverance...
...they are truly a patch of grass amongst a patch of dirt. 
