When your child realizes they are different

November 20, 2015

I’m going to tell you a story about my sweet little 7 year old boy G.

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Oh that face. I could just eat him up!

He was born with something called Duane Syndrome. If you haven’t heard about it yet, you are not alone, most doctors haven’t either. You can read a little more about it here.

Anyways, this wasn’t totally unexpected to be honest. In between G and my first son I had another pregnancy. That pregnancy came to an abrupt halt at around 20 weeks when it was discovered that the baby had a severe neural tube defect that meant it would not survive outside the womb. Devasting. Heartbreaking. Every bad emotion possible. But we moved forward.

Once you have one pregnancy with neural tube complications you are more likely to have future pregnancies with the same. I was put on large doses of folic acid and hoped for the best….

When G was born everything was great! Things went much more smoothly than with my first and we rolled through the first few months of his life with no issues. Except that I noticed that one of his eyes always seemed red, irritated and slightly more inset than the other. Nothing major, but it didn’t seem to go away.

To make a long story short, after consulting with our doctor, then some specialists, he was quickly diagnosed with Duane’s, which is neural tube related in that he was born missing an optic nerve in his right eye. Missing optic nerve = eye muscles that get very confused easily = eye retraction = lack of eye control.

Over the years it hasn’t really been an issue at all. Every six months we see the Orthoptist (eye muscle specialist) and every 12 months we see a Pediatric Opthamologist. His vision itself has been great, perfect in fact, and you wouldn’t really know that anything was amiss until he tries to turn his eyes to look at something. Then, you can see it (the eye retracts slightly into the head and the eye can’t turn properly).

We have tried to down play things over the years by telling G that he has a “magic eye” that can do things that no other kid can do! He is special! He is unique! He is perfectly 100% wonderful and lovable and his magic eye makes him one in a million.

A few years ago, once G started school, kids started to notice his eye. Kids being kids they would ask “What is wrong with your eye?” and G would answer “Nothing. it’s my magic eye!” and all was well.

But recently something happened. Recently my sweet little G developed a crush on one of the little girls in his class.

He whispered to me the other night…

“Mom…I really like Sally” (names have been changed to protect identities).

And of course I laughed and asked him why he really liked Sally.

G told me “Well, she is pretty and smart and fun”.

All good qualities in a girl that’s for sure.

And then I asked G.

“Do you think she likes you too?”

And he answered…

“No, I don’t think she likes me because of my crooked eye”

AND MY HEART SHATTERED INTO A MILLION PIECES FOR HIM.

It was the way he said it. So matter of fact. He wasn’t upset per se. Just more accepting that this was the way it was. That of course Sally would never like him because his eye is “crooked”. That she might not appreciate that those same eyes are so full of kindness and light and are the most beautiful blue color. Or that he is a funny, sweet, kind, loyal and loving little dude.

And that is heartbreaking.

So, I scooped up my boy with kisses and hugs and told him that the right girl will like him EXACTLY the way he is. Magic eye and all.

 

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8 Comments

  • Reply Sarah @ Sarah on Purpose November 20, 2015 at 8:50 am

    Your boy is a cutie pie with a magic eye. I’m betting in a few years he will be the one breaking hearts.

    • Reply Christine November 20, 2015 at 11:12 am

      I think so too! He already melts mine! πŸ™‚

  • Reply Alison November 20, 2015 at 10:37 am

    Oh, sweet G. Auntie’s heart broke reading this. When the right girl comes along she will know your eye is magic, not crooked. ❀️❀️ Until then, just give them a wide berth. They’re full of cooties anyway!!

    • Reply Christine November 20, 2015 at 11:11 am

      Thanks Auntie! xo

  • Reply Jennifer February 27, 2016 at 10:31 am

    My son also has Duane’s Syndrome. I understand how you feel.

    • Reply Christine February 28, 2016 at 3:17 pm

      Thanks so much for sharing…its hard to watch him be so aware of it now and for other kids to be so aware of it too…. πŸ™

  • Reply ana September 22, 2016 at 4:00 pm

    I was born with duane syndrome too , I. Was bully all my best years. Kids can really hurt a person even grown up people too with their comments . It’s hard living like,this,and knowing theres not a cure for this.

    • Reply Christine September 23, 2016 at 11:17 am

      I’m so sorry to hear that πŸ™ I am hoping for the best with my son and teaching him that it makes him special and unique and that everyone has something different about them. Thanks for your comment.

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