Updated January 16, 2017
“What’s wrong with her eye?”
“What happened to her eye?”
“Is she blind?”
“Does she have a lazy eye?”
“What’s wrong with her?”
“Can she see me?”
“Is it going to fix itself?”
Those are just a few examples of some more of the things I have heard regarding Kennedy’s coloboma. Need to read up on what it is? Check out this post.
I realize those questions come because Kennedy’s condition is so incredibly rare, and she will most likely be the only person in their lifetime that they will meet like this. Regardless, hearing this hurts. I go through days of not even noticing her eye or thinking about it, and then I hear one of these questions, or someone acts pretty ignorant about the situation, and I’m truly saddened and worried for my little girl.
I love Kennedy so much. I love every single part of her, including her coloboma. I think it makes her incredibly special. It literally is a physical manifestation of how our lives and souls are never finished; how we are a continual work in progress. I just worry for how others are going to start treating her once she starts going to school where children become judgmental. Let’s face it, it is different and kind of weird. You can try and compare whatever birth mark you have to her eye, but the fact is that it is not the same. Every time I look at pictures of eyes or every time someone draws eyes, the pupils are always round. But what about Kennedy’s keyhole shaped pupil? How do I explain this to her when she later has questions after she learns that eyes are two circles with two little dots inside the circles?
I just worry about the future. I worry that kids will be mean. I worry that she will rebel and try and hide her face, retreat from others, and become socially awkward. I wonder if she will ask me for a contact lens to hide her coloboma (I discovered this website that deals with cases like hers, and it’s pretty neat), and I will gladly let her have one. I just hope she doesn’t become ashamed of herself. Ashamed of what God made her, because God doesn’t make any mistakes.
Why am I writing this post? Why hash this out again when I’ve already posted about it before? I just think there is a lot to learn, especially with how we look and treat other people. Specifically when it comes to teenagers.
Throughout the school year, when Kennedy would come to rehearsal with me, some of my students would push her around in the stroller. She loves walks. Some of the other random kids that would be around after school would approach her and ask really ridiculous questions, just like the ones up at the top of this post. High schoolers are the absolute worst, aren’t they? My students were really offended and, of course, they felt hurt and came and told me. We had a thoughtful discussion about Kennedy and about how others pass judgment in high school. They shared experiences on how others have judged them before, even on things that weren’t as noticable as Kennedy’s eye. This discussion had a few of us in tears, and it felt amazing to just talk about this to them. Kennedy doesn’t even realize that she is already helping others open up and talk about these issues! What a blessing she is!
It makes me so happy to know that my students care about her so much. Kennedy really is a normal, beautiful girl. She has perfect vision. She truly brings everyone joy. The kinds of students that I have that care about her so much give me hope. Also clicking on the #coloboma hashtag on Instagram has made me feel so inspired (go look it up now!). I hope Instagram or something like it exists when Kennedy is a teenager so she can find her community. I’ve already found one little boy whose eyes are exactly like hers. It’s so crazy. So insane to think out of all the people in this world, I could find one little boy on instagram only months younger than her with eyes that are almost identical.
Like I said before, we are all unfinished. We are all a work in progress. We all have something that we feel we are different because of it. Kennedy’s is in the window to her soul. Perhaps that may seem bad, but I find it incredibly humbling.
Anna says
I know this is an older entry, but I thought I’d comment in case it would help at all. My eyes are very similar to Kennedy’s and I’m in college now. Elementary school is the hardest, because kids ask some really insensitive questions, but if you always show Kennedy that her eye is a positive thing, she’ll learn to think so too. My mom used to tell me that I had an “Angel Eye” and it helped a lot with counteracting the meaner kids that I ran into. Overall, I was never really bullied for my eye, though. I realized after a while that kids were just curious about it since it is pretty unusual, and the only way they really knew to show that was by asking questions that often came off as rude. I started to really love my eyes in middle school, and I’ve loved them ever since. I actually fix my hair sometimes to try and draw attention to my eyes. Hope that helps a bit and I wish you and Kennedy the best of luck! 🙂
Tonia Ferguson says
hi, I know this post is years old, but it was the first thing on the internet that I found that gave me some peace about my own 11 day old daughter. She slept so well, that the nurses couldn’t get her to open her eyes when they did the routine checks in hospital, so it wasn’t until we had been home a few days that I noticed one eye is not like the other. I too had a c-section, but there were complications and they had to use a vacuum assist leaving a hematoma on her head. I had no idea what was wrong with her eye (birth defect, caused by the suction, something else?) until I ran into your blog. We have an appointment with a pediatric ophthalmologist for a few days from now to find out how far back it goes. I have been worried and a little stressed, but knowing that Kennedy can see and seeing how adorable she is, will help me to wait patiently and trust God with her well being. Thank you for sharing!!