Why My Son Says He Always Wanted a Cleft

Smile Train supporter Jasmine Czarnecki shares the story of her son’s cleft treatment journey.

I got pregnant with Daniel when I was 23 years old, shortly after completing my Marine Corps service in Afghanistan in 2013. I’ll always remember the moment I learned my son would have a cleft — it was a regularly scheduled ultrasound. They looked at me and said your baby is going to have a cleft, but don’t Google it because you won’t like what you see. So, naturally, I Googled it on the way home and immediately felt myself drown in fear, worry, even doubt about my abilities as a mother. I became so fixated on how he was going to look and how my community would respond that I overlooked all the resources that were available.

And shame on me, because the second I laid eyes on Daniel, I saw that he was absolutely perfect. My purpose as his parent became clear to me then: To make sure that Daniel feels loved, confident, and happy. Scar or not, cleft or not, I always just want him to know that I am going to help him be the best Daniel he can possibly be.

We were in Columbus then, and we scheduled Daniel for his first surgery at The Ohio State University Medical Center when he turned three months old. Even though I knew he was receiving care from some of the world’s leading experts in cleft treatment, it’s still the scariest feeling in the world knowing that you’re giving your baby away in one condition and receiving him back in a completely different one. We ended up having an amazing experience, and I’m very grateful, but it’s still a lot. It’s definitely a lot.

I actually first learned about Smile Train in my first frantic Google searches after receiving Daniel’s diagnosis but I overlooked them.

A few years later while looking through a weekly newsletter I subscribe to of custom-curated volunteer activities, and one of them was for YLC, Smile Train’s Young Leadership Circle. I decided to look into it a little more, and it turned out to be the perfect fit. As a member of YLC, I learn to be the best cleft advocate and fundraiser I can possibly be along with an amazing cohort of other driven young professionals from across the country. Thanks to the generosity of my family and friends, who already knew how important this cause is to me, I was able to raise a good amount of money fairly quickly after joining. My new goal is to raise $4,000 so I can someday go on a Journey of Smiles to see Smile Train’s programs in the field.

The timing of my joining YLC was no less perfect because it meant that right when Daniel began preschool, we had a community of cleft advocates there at our backs. So when I had those kinds of everyday worries that this will be the day he comes home and gets picked on, or on those days when he is self-conscious and doesn’t want to smile for pictures because of his scars, I had friends I could talk to about what we were experiencing, people who I knew had been there and would get it.

But I don’t want to give the wrong impression. Mostly, times have been very good. Daniel is a breath of fresh air who steals all the attention in any room he enters, and I was amazed at how well he adjusted to school and being around other kids. He really didn’t have much trouble until the pandemic forced school to go remote while he was in kindergarten; that was very difficult for him. Now, as a seven-year-old who started first grade in quarantine, it’s been hard for him to distinguish what’s home and what’s school. But this is also what made Smile Train’s Cleft Con last November, the first-ever convention for uniting and empowering our community, such a big deal for both of us.

We live in New Jersey now, and as awesome and understanding as our neighbors and friends have been, we don’t know anyone else here who is personally cleft-affected. So seeing other people — especially adults — with clefts for the first time was huge for him. As we watched people speaking, he would just gaze at them in awe like, “Mom! He has a cleft, too! He can grow a mustache!” I think it really put into perspective for him that one day, he’ll be an adult, too, and he can accomplish whatever he wants. I’m grateful that he’ll have that forever.

Even now, months later, I can still see the impact Cleft Con had on him. We recently stayed at a little vacation place near our home, and when one of the staff there took his mask down briefly, I could see that he had a cleft scar. I pointed to Daniel and said, “Look! That guy has a cleft!” and he was like, “Can we go talk to him?”

Well, I didn’t want to interrupt this man during work, especially by calling attention to his cleft scars, so, I felt a little awkward, but I asked him politely, “Sir, if you don’t mind, I am a cleft parent and I noticed your scar. If you have a couple of minutes, would you mind introducing yourself to my son, who also has a cleft?”

He said it wasn’t a problem at all whatsoever, and Daniel immediately lit up. It was a really heartwarming situation, because the guy thanked me afterwards, and Daniel was just blown away that there were other people out there that are like him.

It allowed him to experience what I’ve been telling him his whole life: No one can judge who you are on the inside by the scar that you wear on the outside.

Getting that message out is also why I recently joined Smile Train’s Cleft Community Advisory Council, or CCAC. As a CCAC member, I meet with other cleft-affected individuals from across the country to advocate for the cleft community and help ensure Smile Train’s communications strategies always uphold the dignity of people with clefts. I love being a part of this group because it gives me the opportunity to do what I value most — use my skillset in service of a cause greater than myself. Anything that I can do to make a positive impact in the world, that’s what I plan on doing.

Daniel is a very opinionated boy, and I don’t like to speak on his behalf. So I asked him what he would want to say to anyone reading this article on Smile Train’s website, and he didn’t hesitate to answer: “I always wanted a cleft.”

Well, that’s quite the response, so I asked him what he meant, and he explained: “If I didn’t have a cleft, I wouldn’t have gotten to paint with the other people that have clefts, too” during the group painting activity we did at Cleft Con. Now, he’s always asking, “Mom, when’s the next cleft thing?” and that just blows me away. Thanks to Smile Train, Daniel knows that having a cleft is special and he knows that there’s a little special community of people just like him. And thanks to Smile Train, I’ve gone from worrying about what the community will say to building a better community for everyone.

I am extremely grateful to Smile Train for all of the opportunities they make possible. I look forward to continuing working with Smile Train, the CCAC, the YLC, and any other acronyms you can throw at me, I’m going to sign up for, because it seems only right that now I can try to make sure other families have the same opportunities as mine.