Life always has a way of throwing the unexpected at you, and Lauren Onishi of Guilford, Connecticut, certainly was not expecting her now-9-year-old son, Adriano, to be born with a cleft. But Lauren stayed strong and made sure her son got the care he needed. Now, mother and son want to educate others about what it’s like to live with a cleft.
Lauren describes how she first found out Adriano was cleft-affected and what she did in the immediate aftermath of that revelation. Her words have been edited for clarity and conciseness.
I found out at three months. At that time, I had absolutely no clue what a cleft was. All I knew was what I saw on Smile Train commercials … and my doctors told me, “Don’t Google anything Lauren, don’t Google anything.” Of course, the first thing I did when I got back to my office was to Google clefts. It was the dumbest thing I could have done.
We went to NYU Langone Hospital for a sort of meet-and-greet orientation to their cleft team. It was great. We left feeling like, alright this is going to be good, we’re going to be okay. You know, it stinks, knowing your first child is going to need surgery at three months. We knew it was going to be tough, but we had no choice. Everything felt a lot better after that meeting, that’s for sure.
However, the unexpected happened again.
Surgery is not a time when you look for the unexpected.. After his operation, we saw that scar tissue was forming to the point where his nostril was pretty much closed; he could barely breathe through it. So we had to do it all again.
We left NYU and went to Yale New Haven Hospital closer to home, and we were so lucky because it was amazing there.
So that was surgery number two, and from then until now, all his surgeries have been nose revisions to help him breathe.
How can people think that having a cleft is only a cosmetic issue? But you get that all the time, and anyone in the cleft community will tell you, they hear that literally all the time. Our kids don’t care about their profiles at age 8 or 7. They literally have breathing problems, speech problems, and it’s so tough, and it just doesn’t stop at one surgery. It keeps going and going, and Adriano is going to keep going until he hits a certain age, when he’s allowed to get another surgery to help him breathe.
Not only is it important to remember cleft surgeries aren’t just cosmetic, it’s also important to remember cleft care isn’t just one-and-done.
It’s a process. A lot of things come up that you just don’t expect, that you’re not prepared for. After the first surgery, you get the specialized bottles, you get everything they tell you to get, but then after that, it just keeps going and going. I know people who have had infections, who go through such hard things, it’s just not a surgery and you walk away; it’s a surgery and you’re waiting to see what’s next and hope for the best.
I was a mess; I probably drove his father crazy. I remember before his first surgery at three months, I was literally up all night,and Adriano was just up at 3 or 4 o’clock in the morning … I cried through everything.
I remember thinking “This is awful,” because it was a six-hour surgery, and we were up all night with him at the hospital. Afterwards, he had these arm braces and they were so tight and uncomfortable. I couldn’t watch him like that, so I stood up all night holding his arms down so he wouldn’t rip out his IV. It’s so hard cause they’re so little, they’re so helpless…
Lauren says she is proud of the incredible boy all this hardship has molded Adriano into.
I remember him crying when he was little because he saw a picture that broke his heart. It was of a kid who didn’t have his surgery, and he was crying because he was that kid at one time. He was too young to understand. I told him, “You’re perfect, you’re going to be fine,” but I think it hurt him more that that kid was going through that, rather than him. It totally shaped him in an awesome way.
And then there’s that part of the world that is cruel, and that’s never going to change. That’s the biggest life lesson. I want him to be proud of his scars, to be like, “That’s awesome, you’re going to get ladies with your scars!” He takes a lot of pride in them now, and I’m happy he looks at them that way, rather than feeling like he has to hide them.
I don’t think that he’d be the kid that he is today if he didn’t go through all that stuff because now he watches out for other kids; he doesn’t want to see them be bullied because of something they can’t control. You just have to teach them, but he sees the world differently because of it, and honestly, I am grateful for it. Obviously, I didn’t want him to go through all that, but it made him an awesome, awesome kid.
Thanks to her and Adriano’s own cleft journey, Lauren is doubly impressed with the work of the world’s largest cleft-focused organization, Smile Train.
It’s just so incredible what they do. The world really doesn’t understand the gift that Smile Train is giving their patients. It really is a second chance at life. Knowing that some of their patients have to wait until later in life to get surgeries, and thinking about what they must be going through, it’s horrendous. What Smile Train does is just so incredible. Clearly, they love what they’re doing and it’s beautiful. Smile Train is going to be a part of Adriano’s life, because his cleft is a part of him, and just knowing that there’s an organization out there that is taking care of someone like him, it’s amazing.
Lauren also offers sage advice to parents discovering that their child is cleft-affected for the first time.
Stay off of Google, like my doctor said!
You’re always going to have a little fear at first because it’s your kid and you don’t wanna see them hurt. But you’re just going to do it, because you love your kid, no matter what.You’re going to stay up all night at the hospital because that is your kid you’re going to come back to. You’re going to be happy.
And you are going to have a special kid. I feel like kids who are a little different, kids who go through a lot of things, it’s a blessing for them. Just know that everything is going to turn out welland you’re going to go into mom and dad mode and do whatever you have to do. It’s only going to be tough if you sit and think about it. But stay off the internet!
Lauren’s story is the perfect picture of just how much a mother will do for her child, and together, Lauren and Adriano inspire and educate everyone they can about what it means to live with a cleft.
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