The room fell silent. The tech who was joking and laughing with us moments before had suddenly stopped talking and started squinting at the ultrasound screen. My husband and I exchanged puzzled looks.
“Ok,” she said, getting up. “I’m going to go get the doctor now; she’ll be right in.” She smiled at us, though a little too deliberately for my liking. The heavy door closed behind her.
My heart started to pound. I knew what was about to happen, though with everything inside of me I wanted to get up and leave and not hear what the doctor had to say. And I really didn’t want Scott to hear what the doctor had to say. He looked at me and squeezed my hand.
We were in Maternal-Fetal Medicine that day having a 4-D ultrasound for two very specific reasons. One was to find out if we were having a boy or girl. The other was to check for deformities. A cleft lip or palate.
When the doctor finally came in and took a seat, there was no small talk or laughing. And we sat there in silence as she pushed on my belly with her equipment and clicked picture after picture of our baby’s face.
I remember squinting at the screen, wanting to see it first, before anyone pointed it out to me. Like if I made the discovery, it would somehow soften the blow.
Finally she spoke.
And I would love to tell you what she said but I can’t remember. For me, time stood still and the room closed in on me and the ugliest, most uncontrollable sobs started erupting from somewhere deep inside of me. Perhaps what she said was, “Your worst fear has come to fruition.”
It would’ve been true.
There was a cleft in her lip. In her lip. Which made it worse–she would never have the choice to wear a mustache to hide the scar.
All of a sudden all I could think about were the looks. The stares. The pointing, the laughing, the names. The questions. Kids are so darn curious, but they can also be so mean.
People can be so mean.
It scared me because I know. I remember the pointing and the stares. I remember the constant questions from well-meaning children who sincerely wanted to know what’s wrong with my lip and my nose…when all I wanted to do was pretend I was just normal. I just wanted to be normal.
That day in the ultrasound room, the silence was broken with phrases like you’ll need to choose a surgeon before she’s born so they can be there soon after she arrives to evaluate her and it doesn’t seem that her palate is affected but we can’t rule that out yet.
And I would’ve given my right arm in that moment for it to be a normal prenatal checkup.
My husband was so loving that day. (Once his head stopped spinning, I’m sure.) He needed to wrap his mind around the situation as well, and I was certainly no help. I had taken to my bed, going back and forth between bawling my eyes out and staring off into space, dreading the future.
He busied himself with making phone calls to friends and family members who were waiting to hear how things went. They all responded with things like, “So?” and “Oh geez, that’s no big deal!” This gave him confidence, at least, to deal with me.
He said something to me that day I’ll never forget. He said, “Listen. I know you can’t see past this right now. But I can. I see our daughter three, four years from now. You know what she’s doing? Running around. Playing. Tormenting her sister. Getting into trouble. Just like a normal kid. Because that’s what she is…a beautiful, healthy, normal kid. I’m just so thankful she’s healthy.”
And that helped. It did. But it didn’t really take away the guilt and shame I felt. She was going to be her daddy’s first child of his own, and I wanted to give him a perfect baby. I felt like I had caused this with my horribly stupid genes.
Sometimes, the guilt and shame was replaced with discomfort. Suddenly this part of me I had either tried to hide or ignore for so long was under a microscope. In the spotlight. I was that little girl again–and everyone was staring at me.
Then there was the fear. I didn’t talk about it–I didn’t dare say it out loud. It wasn’t something I wanted anyone to know I was feeling. But it kept me awake at night.
I was afraid to see her.
Afraid to lay eyes on my precious baby girl for the first time…because I didn’t want to think she was ugly. I was so afraid I would think she was ugly. That first precious moment is supposed to be magical…and yet I dreaded it with my entire being.
She was born on a Friday afternoon, after about 26 hours of induced labor. When the moment finally came to meet her I was once again overtaken by uncontrollable sobs just like during our ultrasound.
She was the most beautiful thing I had ever seen in my life. (Everyone agreed.) And I don’t know if it was such relief that I didn’t think she was a hideous monster or what, but I just couldn’t pull myself together. Or stop looking at her.
She was so. stinking. beautiful.
Fortunately her cleft was very small…it looked like she was sucking her little thumb on the day her lip was forming. Nothing like mine. And even more fortunately, her palate wasn’t affected. But I knew firsthand her journey was just beginning.
We began meeting with a surgeon. We dealt with issues with nursing. We watched her grow quickly and talked about what the future would hold for her.
Scott spoke boldly and proudly about her condition with anyone who asked–friends and strangers alike.
I’d be lying if I said I wasn’t more timid about it. I swore everyone was pointing and staring. Whispering. Part of me wanted to lash out and ask everyone what the big freaking deal was. Yet a part of me now understood what my mom and dad had always told me…that they were SO proud of me, even when others were staring or making fun. Some just didn’t really understand, and most…well, most just didn’t know what to say.
She was such a good baby. If she wasn’t smiling and laughing she was sleeping. And when she slept, she smiled and laughed.
When she was around four months old she had her first repair surgery. She was in a lot of pain, and it was heartbreaking to watch, but we knew it was for her own good. After she healed, she returned to her happy, normal self…though it was almost like she was just a little more wise, somehow.
The second repair surgery happened earlier this year. Turns out her gum ridge was affected by the cleft, and so in order for her permanent teeth to have something solid to grow into, they needed to take bone and tissue from her hip and graft it into the cleft in her gum.
The surgery was a great success. It was a little easier on Scott and I this time, though no one really ever prepares you for that moment when you have to watch them wheel your child into the surgery unit while they cry for you.
But she was such a strong, brave girl. Always is. So strong and brave, and just so beautiful inside and out.
I try to help her understand what it took me a couple decades to figure out. That God made her different just like He made Mommy different but He did it for a purpose. That being “normal” isn’t all it’s cracked up to be and anyway what even is normal? She listens and tells me she understands, but I don’t know that she buys it yet.
I can see it in her…the effects of this affliction. Sometimes it’s when I watch her practice her smile in the mirror so as to minimize the appearance of her scar. Or when she asks if she’s pretty. We’re sold a standard of beauty these days that drives us girls crazy, aren’t we? Doubly so when you’re a girl trying to stave off the well-meaning questions of those around you about why you look the way you do.
And we can wax philosophic all day about inner beauty and why it’s all that really matters. Yes, of course it matters. But I swear to you, after thirty-some years there’s still a little girl inside of me who just wants to feel normal on the outside. Pretty, even.
So I simply try not to do that to her. The inner beauty thing smooths feathers but it really doesn’t answer that heart cry.
I spent most summers growing up recovering from surgeries. I’ve answered questions ranging from the innocent Did you get bit by a dog on your lip? to How can someone be so ugly?! I spent countless hours comparing myself to other people, hiding from other people, and trying to fit in. I would lay awake at night, praying desperately that God would take this from me. I secretly hoped that I would wake up one day completely “healed” and “normal.”
(me at birth)
(my first repair surgery)
It wasn’t for lack of acceptance, love, or affirmation. My mom always told me I should pursue modeling because I’m so beautiful. Still does. (Ha! Thanks, Mom.) And it’s certainly not because I didn’t understand how important inner beauty was.
I don’t know, I guess I just had to walk through it and endure and be refined all along the way. And my girl does too.
So I tell Katie that she’s beautiful – when she asks and often when she doesn’t. I tell her how much I admire her beautiful heart, because she’s such a loving, compassionate person. I cry with her when her feelings get hurt by her peers. I teach her to look for purpose in all things – even these annoying, crappy things we wish weren’t even things. We spend most of our time thanking God for it all.
I’m thankful to have walked this path before her and can help her navigate.
But I do all of this knowing that, at the end of the day, this is her journey. I can’t shield her from it all. And I guess I wouldn’t want to, because I know that this is going to be that one thing that God will use to sanctify her more than anything else.
My beautiful, beautiful girl.
And to all who may be reading this, here’s the thing I need you to hear: Stories like mine and Katie’s? They’re the easy ones. The happy ones. Riddled with complications and insecurities, sure.
But there are heartbreaking tales of children and adults around this world who have never had a repair surgery due to having no access to a surgeon and/or money for the operation–and those are just people who have survived.
They’re often shunned or beaten. Told that they’re cursed and hated by God. Babies are left to die.
Complications go way beyond outward appearance. Eating and drinking can range from difficult to impossible, depending on the severity of the deformity. Speaking and breathing can be a major struggle. For them…being beautiful is the furthest thing from their minds.
So, what is the response supposed to be? Awareness is the beginning.
Check out the Mia Moo Fund website. Jase and Missy Robertson (of Duck Dynasty fame) do fantastic things to raise awareness and funds in order to help children affected by clefts. Their daughter, Mia, was born with a cleft. They say every child deserves to have a smile. I tend to agree.
Operation Smile does the same type of thing. It’s comprised of a large network of donors and volunteer surgeons and staff. They travel the world to provide safe surgeries, often to the poorest countries. The stories on their website are both beautiful and heartbreaking.
Smile Train is another phenomenal resource, much the same. They offer really cool opportunities to give, like running races or starting a fundraiser to celebrate a wedding or a birthday.
Give these a look. And thank you so much for reading.