“We are not excusing anything,” my wife said. “The faces are completely beyond my daughter’s control”

Reb Yisrael’s Story

The Background

Last  year before Selichos, a man spoke in our shul — I will call him Reb Yisrael — about tefillah and connecting to Hashem. He is a choshuve talmid chacham, mechanech, and all-around special individual. He shared a personal story that I found to be quite possibly one of the greatest Elul messages I have heard.

O

ne of my children was born with a chronic muscle problem that, although not life-threatening, was becoming a complicated burden to have to deal with.

From her infancy, there was something wrong with the muscles in her face. Every time she was agitated and started to cry, she took on a very strange, contorted expression.

After conferring with medical staff and Rabbi Benny Fisher, we were advised to leave it alone for the time being. After all, she was not in danger, and there wasn’t really anything to do about it in any case. We listened to the experts and tried our best to ignore our child’s condition.

It wasn’t easy. Though her face appeared normal when she wasn’t expressing emotions, the moment she laughed, cried, or became upset, her face would twist into all sorts of weird-looking grimaces. Since she was still young and didn’t understand how disturbing she looked, we squelched our personal feelings and did our best to ignore the expressions that crossed her face so frequently. But we knew that though we could ignore it for the moment, when she grew older, it would have to be dealt with. But how? We had no clue.

When my daughter was about six or seven, it became clear we couldn’t keep kicking the can down the road. Until then, the children in her class had not made a big deal about her challenges. Maybe they were used to her facial expressions, since they had grown up with her. But as they grew older, some of the children began making fun of her.

Then there was the issue with the teacher. She was new at the school and meeting my daughter for the first time. When my daughter started making those faces in reaction to things she heard or felt, the teacher imagined that she was being made fun of. She thought my daughter was making the faces on purpose.

Outraged by what she considered a lack of respect, she called us to complain. When she finished her litany of complaints, my wife explained that my daughter had no control over her facial gestures and the faces occurred whether she wanted them to or not.

The teacher did not believe her. “Your excusing her is just making things worse.”

“We are not excusing anything,” my wife said. “The faces are completely beyond my daughter’s control.”

As you can imagine, that conversation was very distressing for us — as was the fact that our daughter was coming home complaining of being made fun of by her friends. It was clear the time had come to return to the doctors and see if there was anything to be done for our child.