Life is Perfectly Imperfect: 1 in 650

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Each year 1 in every 650 children are born with a cleft lip/palate in the United States, mine is one of them.

We plan everything. My husband and I are type A, overachievers, and control freaks (hey, at least I can admit it). We make lists, spreadsheets, pack weeks in advance for trips, plan, plan, and plan some more. So, at 40 weeks pregnant, we had gone over every single detail we thought we could possibly encounter during the delivery of our firstborn. And, as every mother does, I imagined what our baby was going to look like. I dreamt of her with dark brown hair, brown eyes, my pointy little nose and chin, she was going look just like me.

And when she was born with light hair and light eyes I was taken back. But nothing had prepared me for this, she was born with a unilateral incomplete cleft lip.

Our doctor immediately took her thumb and lined the roof of my daughter’s mouth, while I stared in shock. Everyone in the room froze. The doctor said, “She’s got her palate, she’s going to be ok. It’s just a cleft lip.” But nothing she said could make the numbness go away.

Even during those first moments, it was like a slap in the face. How dare I think that I had control, or even needed to be in control. God was in control and always had been. He had planned this for our daughter and she is going to do great things because of it. At that moment I remember feeling guilty. Why did I envision things going only one way? Why didn’t I trust in Him? And because of that, I missed out.

I never cried a single tear the entire delivery, nor the days after. My heart was broken for her because I didn’t know what else to feel. I didn’t want my baby to have a defect, this wasn’t fair for her. We had never seen a cleft lip nor knew much about cleft defects. All we knew was what our doctor reassured us about, our baby is healthy and going to be okay. She started talking about minor surgeries etc while I was still in the delivery position, while my husband never left our daughter’s side. She was healthy, chunky, and doing great! Not one single issue besides this minor defect, we were so lucky! But all I could think about was her lip and all the negative things that could possibly go with it.

dsc00029xxIt’s hard for me to clearly put how awful I felt and the guilt I still feel to this very day for allowing myself to feel that way. My husband and I cheated ourselves of that first moment of pure joy, love, and devotion you have when your child is born. We were cheated of that because I was so concerned about her lip and how she would eat, talk, look, and feel about herself, that we didn’t fully take in those first precious moments.

Now, after 2 surgeries, one at 5 months and the other at 4 years, JoJo is a very confident and proud cleft kid. She has “owned” her cleft lip and doesn’t mind other children asking about her scar. She likes to read our newsletters from cleft lip/palate charities we donate to like Smile Train. I think it makes her even more proud when she sees the cleft babies we help all over the world. We also are doing more with our Jacksonville cleft lip/palate community to spread awareness, so she can be with more cleft kids and to help her be a role model to other kids going through the same thing. I know she is going to have some hurdles, but we are going to be here for her and continue to raise her to be proud of her lip.

Although we still try to plan everything, we’ve learned an amazing lesson from our little girl. Life is perfectly imperfect. Twists, turns, and struggles are bound to come but appreciate those hurdles and use your experiences to help others. And that’s what we have learned to do all because of her. Our cleft lip kid has made us very proud parents and I know JoJo is destined to do more great things.

Sherri
A Jersey Girl at heart, business owner and graphic designer, Sherri is a mommy of two and active volunteer. A native to Jax Beach since 1992, thanks to her father’s service in the US Navy, Sherri’s roots are firmly set in Jacksonville. A Flagler College grad, she knew she wanted to be her own boss and a SAHM, so she created Sassy Ink Design Studio in 2009. She met her husband in the Florida State Football Locker Room (don’t let your mind wander, she was on a tour) and was engaged within 3 months! For a short time they lived in Destin, FL where they had their two children, but missed Jacksonville so much, they came back to raise their family in the best city in the south! Over the past 14 years, Sherri has competed in, coached and judged pageants across the state. Currently, she is Mrs. Jacksonville International, but don’t let that fool you. She kick boxes, loves football, camping and can change the oil and a tire on a car. Obsessed with Christmas, you can find Sherri designing in her home office with her snowman mug, bullet coffee and Nat King Cole playing in the background.

2 COMMENTS

  1. What a beautiful story! Sherri and Mark are amazing parents. We can’t wait to celebrate JoJo’s 6th birthday with Smiletrain!

  2. My daughter has spina bifida and had 18 surgeries by age eight. When she was two, having her 10th surgery, a surgery on her brain, I was a basket case. When I was in the waiting room, I looked at the monitor that showed her surgery had started. Suddenly an overwhelming sense of peace came over me and I heard God say, “She is not in your hands, she is not in the surgeon’s hands, she is in My Hands and she has always been.” After that I faced the next 8 surgeries with calmness from the grace I received that day.

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