Tell Them You Understand It’s Difficult

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What it is about my cousin Janet is this – she isn’t a chicken shit, in a nice way I mean.  She is free of the retarding hang-ups and fears that prevent me from saying things that desperately need saying, and from getting off my ass when it needs some air.  Who knows, maybe she’s got a Mr. Hyde side that I’ve failed to see for fear of spoiling the image I have of her.

I don’t remember how it came up but during a visit a few years ago she mentioned that she had recently seen a woman with a facial deformity at the grocery store.  The deformity was severe and the woman kept her head down to hide herself as much as she could.  Janet continued her shopping but made her way over to the woman and gently began a conversation. They spoke for a few moments, and then Janet told her she understood it must be difficult for her, and that she just wanted the woman to know this.  The woman paused for a moment, and then began to cry.  But through her tears she managed to say that Yes, it was very hard. And she thanked Janet for her words.

“I would never do that,” I thought.  It was too far into someone else’s business.  I was afraid even at hearing story though I had never bothered to define what I was afraid of.

A year or so later my daughter was born.  She was born with a cleft lip and palate, which in the first six months alone required two surgeries plus she had to wear a NAM device (below) to keep her nose from sinking down into her mouth.  Even a small change from “normal,” a line on the lip or mild tilt in the nose, makes the human face look so different.

For parents the time goes particularly fast and before I knew it she was three and in preschool.  Three, despite its tantrums, is an amazing age.  At this age kids speak their minds.  Her classmates would often walk up to me or my daughter an ask “what is that on her face?” sometimes pointing to her cleft scar.  When the child’s parent was present they were horrified.  They’d begin to apologize to which I’d say there was no need.  Their child was doing what they were supposed to do.  They saw what everyone else saw – a scar and a tilted nose.  And they wondered what others wondered – Why is that? What is that? So they asked a question.  Unfortunately, older kids and adults don’t ask questions or talk about, let alone to, people that look different because we’ve been taught that it is intrusive and inappropriate.

Last year I finally got up the nerve.

One of my daughter’s preschool classmates was developmentally delayed.  For most of the two years they were in class together I never took the time to ask this girl’s mom anything about her condition, let alone acknowledge that there was one.  So at a playground birthday party one weekend I saw the mom sitting on a wall at the edge of the park as her daughter played on a swing.  I took a deep breath and went over and sat down next to her.

I prefaced that I hoped what I was about to say would not offend her.  I told her I thought that parenting for her must be difficult, and noted how much progress I thought her daughter had made that last year in preschool. Truly, this girl was now talking and interacting with a personality that I didn’t see at the year’s beginning.

She nodded her head, and the corners of her lips began to quiver as she fought back tears.  I started to apologize just like other parents had done when their kids asked about my daughter’s cleft.  And much like I had done to those parents, this mom held up her hand to refuse my apology.  She told me that indeed it was difficult, and she thanked me for what I had said.  I saw her again the next week at daycare and she stopped me in the parking lot and told me again how grateful she was for what I had said.  That brief discard of my fearful sensibilities allowed a moment for a few simple words, and they were still ringing in her ears days later.