Chapter 4: The heart of the matter

Collage from the Eye Patch Quilt.

The question mom poses throughout Chapter 4 to advocate for those with facial difference is: what's it like having a one-eyed mom?  What do people without facial differences not understand about how differences on the outside translate when behind closed doors?  Read on in her words:

Having been an only child myself, I was happy that Andy and Sarah would now have each other as they experienced the uniqueness that was ours.  I often would run around the house in the early mornings or late evenings without the patch on because the elastic caused pressure on my head.  I can generally wear them 3 to 4 times before the sewing the elastic tighter again so that they don't fall down on my nose.  The warmth of my head and hair oils must do the loosening over spans of hours.  Seldom does one fit just right without being too tight or too loose.  There is very little tolerance there for exact fit.

I have learned that it is not unusual for a physically challenged person to take off a prosthesis or health-aid when they are safely at home.  It creates a dichotomy of what is appropriate for the outside world and what is only okay when no neighbors or friends are over.  The kids got to see me running for the upstairs closet that housed the patches when an early doorbell range or a dog had to be walked in a hurry.  They didn't find my appearance scary, but I knew their friends who might be spending the night would, so I had a double set of dress codes for myself.

Being a teacher, counselor, therapist type, I sometimes would ask them if it bothered them when everyone stared at us as I came to one of their school concerts, friends' birthday parties, or athletic events.  Usually they said "No," but did acknowledge that their school mates kept asking them what was wrong with their Mom and why she wore that funny thing.  I think it really helped to be open and give everyone an opportunity to talk about it.

Is this family photo from the 70s or what?

Don't worry- she tasked me with writing my own chapter on this years ago...