Recently our family was invited to be guest speakers at a local 3rd grade class. They had just read the book, “Wonder” and watched the movie. The book is required reading for most 3rd and 4th grade classes across the USA.
“Wonder,” is the story of a boy named Auggie. He had been home schooled and now 5th grade is his first year going to public school. Auggie looks very different than the other kids, because he has as genetic condition, which effects the development of his facial bones. Auggie has the same syndrome as my husband, Duane and our 2 year old daughter, who have Treacher Collins Syndrome (TCS).
We had originally planned to have a midwife deliver our second baby. However our daughter’s diagnosis of TCS meant she needed to be born at a big hospital in the city 4 hours away. Now 2 1/2 years later, it was our midwife, who arranged for our family to speak at her daughter’s class.
Our 4 year old daughter also just watched the movie Wonder, so she was excited to see a real school just like in the movie. We got to see our midwife again, and meet her daughter and her daughter’s classmates and their teacher.
My husband mostly talked about not taking yourself too seriously (that is one of his precepts), along with having a sense of humor, and overcoming challenges. When a kid would say to him, “dude, your face looks weird.” He would respond, “I know! It’s crazy, isn’t it?” Which made it less fun for the kid who was trying to making fun of him. Duane shared about traveling to Asia, and how white Americans always get stared at, which for him was no big deal.
I shared about how I fell in love with Duane, but wasn’t sure about marrying him, because of his face. But then I realized that everything I loved about who he is – his sense of humor and confidence etc – is all because of what he went through in life.
My precept is, “who you are, matters more than how you look.”
My husband loves public speaking, so he talked for 30 minutes! (and I talked for 5) and then the kids asked lots of questions. Mostly things like:
– “was your 5th grade a lot like Auggie’s?”
– “did you get made fun of?”
– “how many surgeries did you have?”
– “how did your parents react when they first saw you?”
Our 4 year old raised her hand and asked, “when was I born?” since we skipped that part of our family story. Oops!
Our midwife and the teacher asked deeper questions like, “how should someone like me, respond when I see someone who is so different?” (Since we are taught not to stare). We know that Duane and our daughter look different, and we know people are staring, so please ask! It’s ok to ask, “what happened?” or “you look kind of different, why is that?” NOT “what’s wrong with your face?”
Now thanks to the Movie “Wonder,” if I see someone staring at our daughter, I can break the ice, by asking, “have you seen the movie Wonder?” Most kids have seen the movie, so when I explain that my daughter has the same syndrome as Aggie, kids usually respond, “no way! That’s so cool!”
I don’t think having TCS is cool, however it is cool that there is a movie about TCS.