Wonder: An Opportunity to Raise Awareness

Wonder, by RJ Palacio. If you haven't read it yet you should. No matter how old you are. This fiction book is about a little boy with a craniofacial syndrome; it gives a good picture into this little boy's life and the challenges that he faces, including bullying.

Kennedy's 7th grade is currently reading this book. Her very sweet language arts teacher asked if Kennedy would like to share anything with the class about her experiences, even if she just wanted to write something and have her teacher read it. She immediately said no. But after thinking about it for awhile, she agreed that it was a good opportunity to raise awareness of craniofacial syndromes. So we sat down and wrote this together.

"Like Auggie, I was born with a craniofacial syndrome. Mine is called Goldenhar Syndrome and it is a complicated syndrome. As part of this syndrome, I was born with only one kidney, I have scoliosis (curving) of the spine, I have thoracic insufficiency syndrome (where my rib cage doesn’t grow right and squeezes my lung and heart), I can only hear with a hearing aid, I am blind in my right eye, my right jaw is short, I have paralysis on the right side of my face and in my mouth, and I was born without an ear. So far, I have had 19 surgeries – to stretch my rib cage to give my lung and heart room to grow, to fix my spine, to put a hearing aid into my skull, to try and reconstruct my ear and when that didn’t work, to put a bar in my skull so I can wear my prosthetic ear. My 20^th surgery will be to fix my facial paralysis and help my smile be more equal. Surgeries are never easy and usually mean infections and allergic reactions and hospital stays. But I’m lucky to have great doctors who try to help me be who I want to be and try to help me have the best life I can have.  

What I want everyone to know is that what’s on the outside isn’t what matters. We are all different, we are all unique in some way. You shouldn’t stare at, point at, or make fun of someone who looks different. Or talks different. Or hears different. Or is different in some other way. You should never judge anyone because of their differences. And if you see others do this, help teach them the right thing to do. Syndromes like this do not define Auggie or myself. But they do make us stronger!"

Today, Kennedy's teacher read her story as part of a non-fiction connection lesson (connecting non-fiction text with the fiction text in the book). I received this sweet note from her this afternoon: Students were enthralled with Kennedy's paper.  Friend 1 and Friend 2 (each in separate classes) each guessed it was Kennedy but quickly caught my eye and kept it quiet. The kids were in awe of how much this person had been through, how positive they were and how strong.  They were all in shock when they found out it was Kennedy.  Some didn't realize Kennedy had "problems".  Some never heard her complain so they assumed she was never in pain or had concerns.  They all felt that they were helping her by not giving her medical issues any attention, but now they want to be more supportive.  Please do let me know if Kennedy has further surgery or is hospitalized or could use our support in any way.   I hope Kennedy knows she has a huge support system here and she needs to use it. Please thank her for me....thank her for being so candid and for being her.  

My point in sharing is to raise more awareness. I know many schools are incorporating this book into their curriculum. If your child or child's teacher would like to learn more about Kennedy and incorporate her real story into the lesson, we'd be happy to be included. If you are a teacher, we encourage you to read this with your students. And if you're parent, whether your child is reading this in school or not, we encourage you to read it with your child and discuss it in real terms. Don't hesitate if we can help in any way to make this real! To Kennedy, this story is real..,she lives it. Awareness and acceptance...pass it on!