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To the TV Show That Made Fun of Kids Like My Sons

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To the people behind the show “Survivor’s Remorse,”

My heart sank when I saw a video clip with characters on your show describing kids with clefts using horrific words. In the clip, the characters talked about money for charity going to “the f***** up mouth kids,” and used terms like “snaggle teeth” and “weird lips.” I was angry, and then I was shocked it had passed all your producers for approval.

I was even more shocked to see Lebron James is one of your producers. Yes, the basketball player who has a foundation for children. I posted a thought-out, angry message to Lebron’s Facebook page and demanded an apology. I wondered, “Am I being one of those overly offended people?” Then I imagined someone saying those things to my boys one day, and that thought quickly passed.

But I also thought about my boys and what I would want them to do.

I asked myself, “Why not choose kindness instead?” We could turn something negative into something positive. I wanted to understand your side of the story, but I also wanted you to see ours.

You see, there are really ignorant people out there who say the things the characters on the show said. I believe that’s why it hits a nerve with so many people in our cleft community. This is the kind of ignorance our kids are going to face. It’s not too far from the kind of stuff I heard in the grocery store before my boys had their lip repairs, or the messages moms in our support groups receive from strangers. I also feel like it takes away from everything our kids have been through.

So I wrote this on the “Survivor’s Remorse” Facebook page hoping to educate a little and get a response from them:

“These are my two sweet boys. Do you see those amazing beautiful smiles? Those are mine… all mine. They have no idea they are different. I hope it always stays that way, but in my heart, I know one day it will change. Especially after seeing that horrible clip from your show degrading kids like mine. They call our children’s hospital the “wagon place” and get excited when we go, which is every week for therapy and every three months (alternating each son) for clinic…

“Our oldest (Preston) will be 6 years old next month. He is going to be evaluated for a bone graft soon, which is where they take bone from their hips and place it in their pre-maxilla. Our clinic days start at 9 a.m. and might end at 3 p.m. after all the tests and sometimes procedures. For instance, there is a procedure they do in clinic called a nasal endoscopy. My oldest has had three of these.They place a tube with a camera into his nose and down into his throat while he is awake. No sedation. Then, they have him say words to monitor the closing/gap of the muscle he uses to speak.

“That’s the hardest test, I think. To hold the hand of your kids and watch little tears stream down their faces while they bravely try to say these words with a tube in their nose and throat. He wants to be Batman when he grows up. So far he’s had nine surgeries. My youngest is 3 years old and is full of life. He’s had four surgeries so far, and with his second surgery he had breathing complications. This sometimes still keeps me awake at night. He also is working through sensory integration. He loves to dance and roll down his window just to say hello to someone walking down the street.

But do you see their smiles? Do you see them? What I have written is only a small part of what we have gone through as a family. Their smiles are our everything.

Please don’t use those words to demean them, and please don’t continue to ignore our community.”

Sincerely,

A mom who loves her two boys

Editor’s Note: Kayla’s Facebook message has been edited for clarity and brevity.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Originally published: October 26, 2015
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