As a Mom of a Child with a Craniofacial Syndrome, I'm Seeking Acceptance

November 21, 2017 7:00 AM

As the new movie Wonder encourages people of all ages to “choose kind,” one mother reflects on how Auggie’s story powerfully connected to her and her family.

When the book Wonder first came out, I had hesitations about reading it. In fact, it took me three tries to actually pick it up and begin.

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But once I started it, I felt more connected to it than any other book I’ve ever read. Wonder was published in February 2012, and my Brooklyn was born in September 2012. Brooklyn was born with Crouzon syndrome, which is a genetic disorder characterized by the premature fusion of certain skull bones, affecting the shape of the head and face, a similar disorder to Auggie, the main character in the book. So I felt like it was written just for us.

There were so many parts of the book that I can relate to and empathize with. As a mom of a child with a craniofacial syndrome, what I could relate to the most was the feeling of what Brooklyn is going to go through her entire life just because she looks a little “different,” and the fierce desire to protect her.

I struggle with how she is treated at school and the stares she gets when we are out in public. How she can walk up to a group of kids and they slowly all disperse until she is the only one standing there — alone.

For Brooklyn, she doesn’t notice the stares or that others look away or often avoid her. I do, though. And it breaks my heart each and every time, knowing that someday all too soon, she is going to begin to notice how others look at and treat her.

It is something I feel ill-equipped and unprepared for, even though I think about it constantly.

“One of my biggest fears”

There is a part in the book in which a parent of a bully wants to remove Auggie’s picture from the class picture because she claimed it gave her son nightmares. I can vividly remember tears streaming down my face, imagining someone wanting to do that with Brooklyn’s picture; almost like saying she doesn’t exist and isn’t every bit a member of the class as anyone else.

My hilarious, smart, beautiful girl who is without a doubt the bravest and most loving person I’ve ever met. She’s undergone over 15 surgeries in her young life with many more to come.

Just knowing there will be those out there who will try to break her, just like the kids in the book did to Auggie, is probably one of my biggest fears.

As I count my blessings each and every day, I am grateful for the love and support that has been shown to my family by countless individuals. I cannot begin to describe how so many people who have crossed our path love Brooklyn, accept her and take the time to educate themselves about craniofacial syndromes. To treat her as they would anyone else. “Team Brooklyn,” as it states on T-shirts that we had made, is truly the best team ever.

SEE ALSO: Helping Other Kids Understand Your Child’s Craniofacial Differences

Saying “thank you” doesn’t seem like enough because it doesn’t truly encompass my level of gratitude — just please know that I am grateful and so very thankful to each and every one of you.

Hope for the future

The widespread popularity of Wonder gives me hope for the future. I’ve made it my mission to spread awareness and acceptance, and I feel that this story is a perfect opportunity to help with that.

I feel that it’s more than a story about a boy who looks a little “different;” it’s a story about being accepted for who you are, and that is something that everyone can relate to on some level.

I hope that the message sticks with anyone who reads the book or watches the movie, and that all those people carry the message with them out into the world.