I carried Ella down to the basement as I've done for the past three-and-a-half years. The trip down has gotten more precarious. Her size, weight, and lack of a center of gravity makes for a dangerous trip each time it's taken. If there's a toy or anything on a stair it could lead to disaster.
As we reached the bottom and found her little wheelchair she said to me, "I wish I could walk. Then you wouldn't have to carry me."
"I know you do. And maybe someday you will." I replied. "They're working very hard to get rid of your SMA."
"Ok." was all she ever really says when we have these brief conversations about her walking.
A few days later we were out and Ella saw a little girl who was just about her age. The little girl was crawling on the floor pretending to be a baby. Ella watched. Her expression was stoic. I can only imagine the thoughts that may have been going through her head. The little girl stood up and raced away. Ella's head cocked to the left a bit and her brow furrowed slightly. Her lips quivered just slightly, hardly noticeable except to her parent. She kept an eye on the little girl; I kept an eye on mine.
I walked closer to her, knelt down to be eye level with her as she sat in her wheelchair. Brushing a few locks of hair behind her ear and bringing my fingers down her soft cheek I looked deep into her eyes and hers met mine.
"I love you. You are absolutely perfect the way you are." is what I spoke to her.
Her smile began to return and her world become the moment we shared. She tilted her head toward mine and they met. I kissed her. She returned the gesture. She held my finger and we sat for a moment not caring about the world around us.
As Ella gets older we must face new territories of how best to handle SMA. It's such an invasive disease physically and mentally; for the afflicted and those closest to them. It produces fear and doubt, wonderment and courage. It elicits strength and calm while presenting challenges and defeats.
There are times when I feel, as a parent, a person, a human being that I am at my wits end. Of course, I feel this way often...I turn to God, my wife, my family, and my friends.
Seems like I'm turning to one or the other constantly.
2014 holds much hope for the beginnings of effective treatments and a cure for SMA. Clinical trials that have already begun will continue; new trials will be underway. Hope springs eternal, as they say. In the meantime we will listen to our child, hold her, comfort her, and care for her...keeping her alive until they find a cure...just as we vowed to do two and a half years ago upon her diagnosis.
