Last Friday started out like any other. We got up around 6 a.m., got dressed and I drove the boys to school. I left Everett in his classroom and started carrying Holden to his. We walked by a room of 4 year-olds.
I looked over when I heard one little girl say, “There’s the funny baby.”
“No, that’s the scary baby,” a little boy chimed in. “He has big eyes.”
Imagine someone grabbing your heart and ripping it out through your toes. That doesn’t begin to describe the searing pain I felt in that moment.
“He does have big eyes,” I managed to say. “But that doesn’t mean he’s scary.”
I sucked up every ounce of strength I had in me and kept walking. Behind me I heard, “He is scary. He has 12 monsters on his back.”
After I got back in my car to head to work, I felt sick to my stomach. I had heard about kids with Pfeiffer syndrome being called “creepy” and “scary,” so what transgressed wasn’t a complete shock to me. Of course, I had hoped it wouldn’t happen to Holden.
It was still a blow nonetheless. See, when I look at my son, he is beautiful to me. I am so used to his eyes being different that they no longer seem unusual to me. I don’t see what the world sees. I just see my sweet, smiling boy.
As I learn to cope with the stares and rude remarks, I am grateful that Holden is unaware of them for now. My hope is that over the next few years, I can figure out how to deal with these things better so I can teach him through example.
As much as the looks and comments hurt me, I cannot fathom how they will make Holden feel one day. He will never get to walk down the street without the fear that someone will stare at him too long or make a comment about him. It makes me so angry to think that his talents and strengths could be subdued because the world is going to be hard on him due to his facial difference.
I wish I could tell you that the “scary” remark was a fluke. Unfortunately, the two days after that remark was made, two other children outside of the school setting made hurtful comments about Holden’s appearance.
Rationally, I know that kids of a certain age are probably just confused by Holden’s eyes and don’t have a filter. I will be honest and tell you that I am starting to have anxiety around kids ages 4-10. When I start to panic, I tell myself that this will never be as hard for me as it will be for him. I also have to remind myself that, as much as I want to, I can’t protect him every minute of every day.
It may never get easier to hear comments about Holden’s appearance. I do know that it has now happened and that we survived. And we will continue to survive and learn how to make each situation better as we continue along this difficult social aspect of our family’s journey.