Tuesday, July 29, 2014

One-Eyed Boy

This is the hardest post I have ever had to write.  I have attempted it several times only to break down in tears before I type even the first word.  I have prayed for strength, wisdom, and courage not only to raise my son as God wants but also to share Noah's story, in hopes of helping others, along the way. 

Last Sunday, I was in the bathroom getting ready for church and Noah was hanging out with me.  It is such a special time to chat about all sorts of things, nothing of great importance, usually Super Heroes, what we're going to do during the day, family and friends, etc.  Well today, as we were talking about going to church and Noah going to Kids Connection {what our church calls the kids Sunday school}and my little man broke down in tears.  Big, splashy tears just streamed down his face as he told me he didn't like having one eye.  He wanted to have two eyes, just like his sister Ava. 

Oh. My. Goodness.  My heart just broke for my Bubs.  I scooped him in my arms and repeated the words we have told him since he was little.  I explained, as tears streamed down his face, that God created him and that he was very special.  That he was perfect just the way he was.  That Mama and Daddy and Ava loved him.

"But I don't like it when kids look at my missing eye," Noah explained to me.

Every single time we go out, Noah deals with strangers staring at him.  Kids stare at him while walking past him at the grocery store.  They occasionally stop right in front of him and stare with a horrified look on their face.

 "Mommy, Mommy," they yell, "that boy doesn't have an eye".

 "Of course he does," some parents explain, "it must be hidden by a patch". {Oh how I wish that were true}.  Other parents quickly grab their child by the arm and mutter under their voice that "it is not nice to say things like that" all the while looking at me with pity in their eyes.  The worst ones stare at Noah along side their child with that same look of horror and revulsion.  Where ever we go, all Noah sees are people looking at him in disgust. 

We have taught him that whenever kids ask about his eye, and they do...all the time...usually with a pointing finger and scrunched up face, that he is to respond, "That's the way I was born".  Some kids accept Noah's explanation, say "Oh", and move on.  Others, however, demand more.  They want to know if he can see, why he was born like that, does it hurt, why is it {his face} bumpy, will he grow an eye later, etc. We have spent lots of time answering kids questions, having them cover up one eye with their hand and showing them what Noah sees {and that he can see}, trying to help them understand that Noah is just a normal kid {who LOVES Super Heroes and Legos and Star Wars}.  I know that kids are curious and I am not faulting them for wanting to know more about Noah.  The ones, however, who after all the explanation reply, "That's weird", are the ones that break my heart.  There are times that I want to grab the child by the shoulders and  scream at the top of my lungs, "MY CHILD IS PERFECT", and other times I want to hide under a rock until the pain goes away. 

Back to this past Sunday, I asked Noah if something happened last Sunday at church...if kids were being mean to him.  Noah couldn't tell me but he kept repeating that he didn't want the kids to stare at him.

My fierce Mama heart kicked into action and we brainstormed what we could do to keep kids from staring at him.  Noah suggested an eye patch and while I didn't think an eye patch plus a BAHA plus glasses would be possible, we came up with the idea of masking the lens in his glasses.

I present to you my Little Man with his new and improved glasses.
Once we put the duct tape on this lens, Noah ran into the bathroom to look in the mirror.  He came back with a huge smile on his face and declared that he loved his new glasses.  While I was so relieved that Noah was happy, my heart broke that we had to cover up his eye, like we were hiding in shame. 

I know that this is only the first of many heartbreaking experiences that Noah will have.  I pray that Noah learns to believe about himself what God knows about him...that he is perfectly made, just the way he is.  I pray that I continue to have words of peace and encouragement for my Little Man.  I pray that as he enters kindergarten this fall, he is surrounded by caring students who are able to look past his physical differences and see him as the funny, kind, smart, silly, sweet friend that he truly is.


  1. You are a wonderful writer and a very blessed Mama. Thank you for sharing your thoughts, heart and amazing son, Noah!

  2. Rebecca I pray for strength for your family. As a fellow parent of a child with Fraser Syndrome, I know first hand how frustrating it can be to repeatedly explain and how rude people can be. When life gets me down, I like to find comfort in reading something positive and/or inspiring.
    Here is a short poem that I like, maybe you'll like it too.

    Special Children

    God gave this child to you to guide,
    to love, to walk through life beside.
    A little child, so full of charms,
    to fill a pair of loving arms.
    God picked you out because He knew
    how safe His child would be with you.

    - Author Unknown

  3. I know that God has made this boy perfect. My heart breaks for him every time he hurts. I also know that God has great plans for this child.

  4. My mama bear heart rises up with you and hurts for your perfect little boy. If everyone knew your story they would understand what a miracle he is. Praying for you as you guide and teach that Noah would understand at a very early age who he is in Christ. Love you guys!

  5. You had tears as you wrote this, I had tears when I read it, and more tears flowed as I think of what I can possibly write to say...I love you. Where are my tissues when I need them? Go TEAM NOAH, go TEAM JACKSON! XOXO Robyn

  6. Rebecca I will keep Noah and your family in my prayers. I remember when Harli started school and started asking the same questions. I still get choked up, but I have also told her to tell the other kids that is the way god made her. My sweet girl starts Jr High this year. We have been very blessed god has put people in her life that are very protective of her as she goes thru school. I want say it gets easier, but I know god will bring us all thru it. If there is ever anything I we can do to help please don't hesitate to ask.

  7. Noah is loved, lucky, wise, blessed, and perfect. I only wish all children could be lucky enough to go through life with parents like you who are building a massive foundation of love to surround him. He will grow up going through the trials of life with such great tools handle them as they come up. He has already had to deal with more scrut iny than most people face in a lifetime, and he has taken it in stride with your loving support. What a wonderful family to grow up in. Love the new specs!

  8. Bless your heart Becky! It is hard to tell you I understand but I do. You and KC are such a dear to this precious boy. Your love and devotion to Noah and his well-being is awe-inspiring. God is with you both and you WILL find the right words for him as he grows up. As you say, there will be hurting and hard times but with God, you WILL make it through. Blessings to the 4 of you! Thanks for sharing your heartache with us who have been with you since the beginning. Love you and warm hugs to you dear parents of a VERY SPECIAL BOY named Noah!

  9. Words can not describe how my heart goes out to Noah!
    You are a great Mom Rebecca!
    You are All Amazing :D

  10. My daughter is lucky to have an eye issue that is reversible for the most part, however she has told me similar things about patching. She wants to know why god did this to her, and she says people stare and they do. There is nothing I can do to stop this. It is especially hard for her when it comes from older people we know that don't have enough tact to stop talking.

  11. Thank you for sharing this story! My son who has also recently been diagnosed with Fraser's Syndrome had surgery on one of his eyes at 7 weeks old because part of the eyelid didn't grow and another part fused to his eyeball. And I often wonder what he will go through as he gets older. My daughter also has the syndrome and it affected her nose. Grown ups always make a comment when we are out and about asking what happened. I totally understand how you feel. Even though my babies have facial abnormalities they are PERFECT!!! And I plan on stressing that God made them exactly the way they are everyday to yhem. May God continue to bless you and your family!!


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