the life not the lack

October 24, 2014, Michaela Evanow, 0 Comments

“I wonder how many people I’ve looked at all my life and never seen.” John Steinbeck

I had the privilege of meeting a special little girl in our neighbourhood a few months ago. Summer was just rolling to a slow, lazy halt, and I had a tiny newborn, sticky against my chest. My husband and I were walking with our children, both in strollers, down a busy, eclectic street in the city. We pulled off to the side and found a grassy nook under a tree. I threw a light cover over my shoulder and began to breastfeed my son.

My daughter sat beside me in her pediatric wheelchair stroller, staring to the side with a crooked grin on her face. We played games with our eyes, raising eyebrows, squinting, blinking fast and slow.

This is her favourite thing to do, and besides her gentle voice, this is the best way for her to express herself. Every other motion is trapped in the cage that is her body. Her muscles have been slowly atrophying since birth.

As my family patiently waited for my son to finish nursing, another family started towards us. I saw a little girl, and knew she would beeline for my daughter. She looked at her, looked at me, and back at Florence. Please don’t ask what’s wrong, please be kind. I looked at my daughter’s face as she registered the presence of another child.

The girl twisted her toe into the grass. I waited, watched her lips as they formed the first question, addressing me, not her. “What’s her name?”

I shared it with her, nearly bursting with relief.

“How old is she?”

I told her, a sloppy, too-big smile on my face.

“Is she a big girl?”

Yes, she is a big girl.

The girl smiled and skipped over to me.

“And you are feeding your baby,” she peered over my shoulder and right into the cover. “My mama does that too!”

My happiness bubbled up right then, slow and warm. So simple, so ordinary were her words and actions. I didn’t even mind the sting when she told me she was a few months older than my daughter. 

Her parents may not have been aware of how well they were teaching her to interact with the world around her. But I noticed.

She saw life, not lack.

Children often stare at Florence. They stare with mouths agape and eyes wide. They walk out of their way to look at her. They don’t see her curly hair, her big hazel eyes, the tiny, fresh picked flower in her hand. They see what’s different. They ask hurtful questions, but more importantly, their parents stand by and disengage with me and my daughter. They are afraid of offending, but it’s their silence that wounds. Maybe they are embarrassed. Often they are just as curious as their children. When they grab their kids’ hands and pull them away, acknowledging the awkwardness, but not the flesh and blood hearts, they make us feel awfully isolated.

They might do a double take over their shoulder, and so, I have learned to turn my head and return their stares.  I see you. I see you in your ordinary and I want you to know, I’m a mama too, and this is my girl. And that look? It is rubbing the bruised patch in my heart right now. I’ll be honest, sometimes there is fire in my eyes. Sometimes I am less than genteel.

In a perfect world, these parents would respond to their children’s questions, instead of having me do it. There’s nothing wrong with her, honey. Why don’t you ask her what her name is?

Of course, there is something “wrong” with my daughter’s muscles, but she is still a child, with a name and feelings and eyes that see. When we peruse the “wrongness” in her body, we tell her what’s most important. Satiating curiosity. Knowing. The lack. The brokenness. We all know these are not the most important things. She is important. Her tender, little heart. Her happiness. Her wellbeing.

The girl I met this summer has stuck out in my memory, more than all the other encounters. She carried an inherited grace from her parents, and a lot more understanding than the average child. She saw something else; she saw how we were similar. You may think she didn’t know better, for she is just a child, but children do know, and they aren’t afraid to tell you so.

She honoured the life in my daughter. And the lack of muscle tone? It made no difference. It failed to capture her attention.

She took ahold of the thread that bound us together as human beings. Her kindness wove its way around us and right through this mama’s grateful heart.

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