'I am proud enough to take Brody out in public, but my sense of control is absent'

Sara Heller gave birth to her son Brody William on October 7th, 2016. He was born with cleft lip/palate and a rare chromosome deletion. Sara decided to share Brody's story on Cleft Connection in a bid to raise awareness and because she is his biggest advocate, and number one fan. Here she shares a post on the reality of life with Brody.

I am a proud mother. 

I have shared photos of Brody daily, sometimes I get a little crazy and post 2+ photos a day. 

Before and after his surgery, I’ve never hesitated to post his infectious smile. I don’t get anxiety after I post thinking that somebody might comment or say something negative.


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I think it is because I feel like I have control over who sees Brody.

Previously people wouldn’t go searching for my profile to look at Brody; pictures of Brody were solely for my friends and family.

I am proud enough to take Brody out in public, but my sense of control is absent.

Countless times I have found myself explaining to strangers, “He has a bilateral cleft lip and palate” before giving them the chance to see for themselves.


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Kind of like, “Yes, you can see him, but brace yourself because he has a facial deformity and I want you to know so that your facial expression doesn’t upset me when you look concerned.”

How messed up is that? 

I should be able to turn the car seat in the direction of a stranger and be able to only (and proudly) say, “This my son, Brody.” 

The anxiety I get when showing somebody Brody before and now comes from not knowing how they are going to act or if they are going to say something that makes me uneasy.

I can think of a time when we were out to eat and a family would not stop staring at us. I felt extremely uncomfortable and I really wanted to get my mama claws out. I couldn’t believe how ignorant and inappropriate I felt their staring was.


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After we finished our meal we were walking with Brody passed their table and the mother stopped me.

“Ma’am, this is my daughter, she is 5 years old. She was born with a bilateral cleft lip and palate too and we were so excited to finally run into somebody in public who has not had their repair yet. Do you mind if my daughter gets a better look at him so she can understand more of what she went through as a baby?”

He was going to have his surgery the very next week and I was so happy to give the little girl a piece of her past that she knew little about.

I wanted her to stare forever. She was so amazed. She laughed and said “Mom, I can’t believe I don’t remember this or the surgery!"


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And that is something I needed to hear.  Brody was not going to remember this. He wasn’t going to remember the pain and he certainly wasn’t going to remember the stares. 

After this encounter, I truly started believing that maybe people are staring because they are reliving something from their past. Maybe their daughter, son, brother, cousin, or friend went through this at a young age.

I know when I see pictures online of an unrepaired cleft lip, I flash back to the days where that was the only smile of Brody’s I knew.

I don’t stare because I am concerned or sad for that family. I stare because I never want to forget Brody’s first smile.

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