Findley and I were some of the first parents to arrive at Virginia’s kindergarten musical last fall. We wanted to get a good seat so that she would be able to see us from the stage. As we waited for the play to begin, I realized I was really nervous. I had a tremendous pit in my stomach. All the other parents around us seemed awash in excitement- cameras poised to capture their child’s big day. But not me. Honestly, I could think of a million places I would rather have been.
All the other children filed in from the left and Virginia’s aid pushed her in from the right. In the picture at the top, you can only see about one-fifth of the children. As I sat there and watched seventy five (seemingly) healthy children fill the bleachers, my heart hurt. Why had Virginia been singled out for so much pain? She was the only one who couldn’t sing, couldn’t dance, and couldn’t even wear the hat her peers wore because her headrest kept knocking it off.
Watching that performance was very difficult for me. Are people staring at her, I wondered? Do they realize how smart she is? That she is so much more than a smiling face in a wheelchair?
After the performance was over, the children remained on the stage so that overeager parents (my husband included) had plenty of opportunity to snap the perfect picture. One of the hardest things about Virginia’s dystonia is that the harder she tries, the harder it is for her body to do what she wants. So every time a mother said, “Virginia, look this way” or “Smile, Virginia” or “VIRGINIA, can you look over here?” I just wanted to crawl in a hole. Because when she is excited and trying to look a certain direction and smile, she can’t. Her body arches back and she is forced to look over her right shoulder.
In moments like that I want to explain to all the parents that she does hear them. She certainly understands that they need her to look straight ahead for the picture. But she is unable to. I want to say, Just take the picture and move on, ok? But I don’t say anything because it’s not the place. Big crowds of her peers are overwhelming to me because her disability leaps out from the crowd and people stare. People are curious. People make the wrong assumptions.
I learned something about my own heart that day. As we walked home after the performance, I was fighting back tears. “It’s just so hard, honey, ” I said to Findley. “I feel like we are taking a square peg and trying to force it into a round hole. It hurts so badly to see her up there.”
He paused a minute, as if to prepare me for the bullet he was about to fire my way. “Did you just see the same musical I did?” he asked me. “Did you see the smile on her face? Honey, she’s choosing joy. You better get on board.”
He was right. Virginia had a great time being a part of that show. She felt proud of her own contribution and proud of her classmates for their special roles. She smiled and laughed almost the whole time. I realized that on that day, in that moment, I was the one having a hard time. I was the one embarrassed by her disability. I was the one who wanted my child to look like everyone else’s.
I was looking at things with my worldly glasses, the ones in which I long to fit in, not stand out. To be comforted, not challenged. Yes, obviously anytime I have a new realization of what was taken from Virginia, it is painful. But sometimes I need to do a better job of shifting my perspective and looking at all that she has rather than all that is lost. I know I am a little biased, but Virginia contributed more to that performance with her joyful presence than she would have if she had sung the lead solo. And I was so caught up in how I want things to be, I almost missed the blessing of how they actually are.
“Now we see but a poor reflection as in a mirror; but then we shall see face to face.” 1 Corinthians 13:12