Updated January 16, 2017
If you’ve been a long time follower and reader, or if you’ve met Kennedy, you know that she has a coloboma of the iris. A coloboma is a cleft in the iris of the eye that makes the pupil appear keyhole shaped. The cleft can run all the way back through the eye and cause serious visual impairments, or it can be just on the surface and more of a cosmetic issue. Kennedy’s coloboma is on the surface of her eye, and her vision is perfect. She has light sensitivity, because it’s like having a dilated pupil 100% of the time.
I wrote a few blog posts about this when Kennedy was a baby. You can check out the first post I wrote here and the second here. I felt so alone when I wrote that first post. Colobomas happen in 1 in 10,000 people. The chances were that I would never see another coloboma in my lifetime.
I was wrong.
A few months ago, we were grocery shopping as a family. While in the produce section, a woman came up and asked, “does your daughter have a coloboma?” Wait, someone knows what that is?! I exclaimed, “yes!” She then called her teenage daughter over and there it was – another unilateral coloboma in the right eye.
It looked exactly the same.
We began talking about how rare this was. I asked the teenage girl how her vision is (it’s fine), how her light sensitivity is (it’s gotten worse), and then I asked the tough question. “Do people ask you a lot about it? Are they rude?”
She told me that she never really got made fun of for it. People would ask her about it but then it wasn’t a big deal. She never felt ashamed about it.
I can’t even explain to you how this all happened so quickly, but we had a moment there next to the green bell peppers. I said to the mom and daughter, “I feel like this is a once in a lifetime thing. When will we ever meet another person with a coloboma?” We then pulled out our phones and friended each other on facebook. It just had to happen.
What are the chances we would meet someone with a coloboma basically in our neighborhood? 1 in 10,000, I suppose.
Last week, when we were checking our bags before our flight to LA, the inconspicuous business man waiting behind us asked me, “does your daughter have a coloboma?”
Wait, another person? “Yes!” I exclaimed.
He then began to tell me that his wife has one and he has never seen anyone else with one. He told me that Kennedy is beautiful and how he thought it was awesome to see another person with one. The conversation lasted all of thirty seconds, but it left me with such an impression.
Since I wrote those two blog posts I linked above, I’ve received a handful of emails from moms of newborns with colobomas who feel alone and helpless. They stumbled across my blog during their extensive late-night google sessions, grasping to connect with anyone else who knows anything about what they’re going through.
Three and a half years ago, I was that new mom. No matter how much I googled, I never found anything that led me to peace and understanding. I worried my child would have health issues. I worried because of the lack of research. I worried because I didn’t want my child to feel alone. I felt alone.
The fact is, these encounters proved to me that I am not.
These encounters got me thinking.
Kennedy is a three-year-old girl who is completely clueless about her eye, yet somehow she’s reached far more than the 1 in 10,000 statistic suggests. Feeling alone in my personal struggles cannot be an excuse anymore. No matter how small and isolated you feel, your story is important. I can only hope that one day I will be able to help my daughter understand that if she begins to feel insecure.
Friends, we’re in this together. Our struggles, our insecurities. Sometimes it feels like nobody ever fully understands. The truth is we’re never as alone as we think. You never know – you could be shopping for produce and a complete stranger will change your perspective.