Motherhood

We’re Not Alone

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.

kennedy-coloboma01

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.

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32 Comments

  • Reply
    stephanie
    March 20, 2015 at 7:51 am

    Such a great post!! Such a rare eye condition, and it is so wonderful you met people who have family members who have it to connect with. Such a cutie!!!! 🙂

    • Reply
      Meg O.
      March 21, 2015 at 7:24 pm

      Thank you so much, Stephanie. This big world really isn’t as big as we think!

  • Reply
    Jessica
    March 20, 2015 at 7:57 am

    I love this post. This is exactly what it felt like with Jackie and I can relate so much. When Jackie was 9 and dx with Chiari’s it was so rare. We didn’t met anyone’s else with Chiari’s until she was 15. Still looking for answers we found out she had Noonan Syndrome also rare. We went to a NS conference 2 years ago and it was just so relieving to meet others. To know your not alone is so important. Great post Megan!

    • Reply
      Meg O.
      March 21, 2015 at 7:24 pm

      I can’t even imagine what it felt like with you when Jackie was little. But that’s so awesome yall were able to go to a conference and connect with others. Thanks for your sweet comment!

  • Reply
    Helene
    March 20, 2015 at 8:07 am

    I’m so glad you are writing about this. I had never heard about it before but can imagine it would feel scary to feel like you’re in it alone. I would have done the same- whipped out my phone to become friends with someone. I’m glad that there are people near you that you can talk about this with because feeling like you can’t is the worst. Great post.

    • Reply
      Meg O.
      March 21, 2015 at 7:22 pm

      Thank you, Helene! It really is comforting to know someone else completely understands!

  • Reply
    Elly
    March 20, 2015 at 8:25 am

    I love this. I wish more moms would know that we are meant to do this together. So many mommy wars, as its so sad! Kennedy is beautiful! Those big blue eyes and blonde hair!

    • Reply
      Meg O.
      March 21, 2015 at 7:21 pm

      Yes yes yes!! These mommy wars need to stop! And thank you!!

  • Reply
    Katie
    March 20, 2015 at 10:17 am

    Love that beautiful girl!

    • Reply
      Meg O.
      March 21, 2015 at 7:21 pm

      And she loves you!!!

  • Reply
    Leslie
    March 20, 2015 at 10:38 am

    Your daughter is a very pretty little girl. I love her blue eyes! I’ve never heard of this before, I think it is awesome that you’ve met people around you! It’s always good to talk to someone how has the same feeling. I hope you guys have a great weekend!

    • Reply
      Meg O.
      March 21, 2015 at 7:21 pm

      Thank you so much, Leslie! It is so awesome to come across others who understand something so rare.

  • Reply
    Vicki
    March 20, 2015 at 11:51 am

    Oh! This post brought tears to my eyes! How wondeful that you met and befriended that woman and her daughter – I bet it may something Kennedy will come to appreciate, knowing someone personally who also has a coloboma 🙂

    • Reply
      Meg O.
      March 21, 2015 at 7:20 pm

      Thank you, Vicki!! I’m hoping these encounters will help me explain it to her better when she gets older. She’s the kind of girl who will rock her special features!

  • Reply
    Tiffany @ A Touch of Grace
    March 20, 2015 at 12:35 pm

    Oh Meg! This brought tears to my eyes. How freaking awesome that you met 2 people so recently that were familiar with it! That is awesome! My friend’s daughter has Kabuki Syndrome, and it’s so rare. No one really knows about it as well, but she’s found a great online community! I’m so glad your blog has helped other moms out there!

  • Reply
    Katie
    March 20, 2015 at 2:25 pm

    How wonderful that God brought two people into your path so close together to reassure you. I don’t even see her coloboma when I see pictures of her– she’s just a beautiful, bubbly little girl! I imagine how stressful it was in the beginning when you didn’t know what was happening, but I’m so glad that she’s fine!

    • Reply
      Meg O.
      March 21, 2015 at 7:19 pm

      Thank you so much, Katie! We see the beautiful, funny, and smart girl, too.

  • Reply
    Lindsay @ Trial By Sapphire
    March 20, 2015 at 3:18 pm

    Isn’t life wonderful like that? I’m so happy that these encounters have left you feeling happier, lighter, and embraced.

    • Reply
      Meg O.
      March 21, 2015 at 7:18 pm

      xoxo thank you so much, friend!

  • Reply
    Tawnya Faust
    March 21, 2015 at 11:12 pm

    She’s such a beautiful little girl, I’ve never even noticed it before in photos! I’ve never heard of it before either, so thank you so much for sharing!! This big world really isn’t as big as we think. When I was diagnosed with Idiopathic Subglottic Stenosis (super rare) I searched high and low for someone who could relate to what I was going through, I found a support group and through there I found a girl from the same town as myself, turns out she was a student nurse before on the floor I work on. I share my story because I know how good it feels to find other’s going through the same thing 🙂

  • Reply
    Kristy
    March 27, 2015 at 11:22 pm

    This is so awesome, Meg. It gave me chills. God is so awesome, and nothing is coincidence. We’re not alone, girlfriend. Not alone at all. 😉

    • Reply
      Meg O.
      March 27, 2015 at 11:34 pm

      Thank you so much, friend! God is so good to put these people in my life. I know it’s something not to get too worried about, but when it’s so rare, you do feel so alone.

  • Reply
    Kristen
    March 31, 2015 at 5:46 pm

    Awww that’s so awesome to meet other people witht the same thing! I can’t imagine how hard it was for you, a first time mom with a daughter that has something you know nothing about! It’s so scary the first time around (being a mom), I’m sorry you felt all alone. I for one think it’s one of those characteristics that’s stunningly beautiful. It makes her special in such a unique way. I’ve always felt drawn in to the beauty of her eyes in your pictures. I never noticed it right away in pictures, but her eyes have always stood out to me- she is a gorgeous girl!

  • Reply
    Milly
    April 9, 2015 at 11:05 am

    I actually find it stunning! I’m a photographer and look at people differently I guess. I’m sorry to hear there’s a downside to this, but it’s even surprising to me that anyone would bully or be rude because of this. This is gorgeous! Your daughter’s super pretty and she’s special too 🙂 !

  • Reply
    Caitlin Cavallaro
    April 18, 2015 at 5:07 am

    I LOVE this post! We are currently going through some tough things with Colton and I have been so stressed out with all thats going on and constantly asking myself how things will turn out once he gets older. It’s been making this momma a blubbering mess. But, this post just reminded me that despite what’s going on, I’m not alone. And even though our littles have two totally different things going on, it still brings me hope! Thanks <3

  • Reply
    Katelyn
    August 17, 2015 at 10:08 pm

    Hi! I commented on your first post about Kennedy’s eye in March 2014. My little girl, who will be 2 on Halloween, also has a Coloboma. Hers is in her left eye and it goes completely thru her eye. We are very blessed parents because it missed all of her nerves in her eye and will never cause her to have vision problems. However, she is very farsighted and has had glasses since she was 14 months old. It is so refreshing to see someone else who has been thru the same thing and knows what it is like. It crushes my soul every time someone says “What’s wrong with her eye, why does it look like that?” Your little girl is beautiful and her eye makes her even make unique and special!

    • Reply
      Meg O.
      August 18, 2015 at 7:40 pm

      Thank you so much for coming back to comment again!! Great that your daughter’s coloboma won’t cause vision problems… that is a relief! Kennedy’s is entirely on the surface and cosmetic, although it is very noticeable because she has light blue eyes. I totally understand how you feel as a mom… it’s hard when you feel like you’ve failed your baby. Now that Kennedy is older I have a much different opinion on it… she is beautiful and her coloboma is a physical reminder that we are all unique and special. Thank you so much for your sweet comment and God bless you and your little girl!!

  • Reply
    cliffordsgal
    December 5, 2015 at 2:58 am

    My 11 month old has Coloboma of the iris. It is undiagnosed. I did my own research. She is the happiest little girl. It is a blessing that she has Coloboma and is so happy. The brighter side of life for her because of her life sensitivity makes her daddy’s colorblindness seem mute. We don’t have to feel alone. Imagine how the children feel in the dark after experiencing things very bright throughout the day. My daughter scares easily and jumps a lot when she isn’t prepared for someone coming up behind her… but it’s all just a part of the birthmark. You have nothing to be scared of.

  • Reply
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    December 9, 2015 at 7:00 am

    […] it looked a little flat to me. I increased the contrast, vibrance, brightened her eyes (remember, she has a coloboma in her right eye so I promise I didn’t warp her pupil), took out that smudge above her lip (too many […]

  • Reply
    Sara
    April 30, 2016 at 12:02 pm

    I had no idea she had this Megan. Its great you have met others with this to have a support system. K is so precious and beautiful!

    • Reply
      Meg O.
      May 2, 2016 at 2:20 pm

      Thank you so much!!!!

  • Reply
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