Today we’d like to introduce you to Patricia Ann Simon.
Patricia says she was fortunate to have loving parents, siblings and friends who never made her think twice about the fact she was born with a cleft lip and palate.
“They encouraged me to just be me,” the Chicago-area nurse says.
It wasn’t until a few years ago when Simon went to the dentist for a routine cleaning that the cleft palate became more of a focal point. The dentist discovered she had an abscess in her mouth, and an oral surgeon also found there was an infection, but because of the combination of a cleft palate, abscess/infection, that surgeon was uncomfortable treating Simon. However, he convinced her that he could do the surgery. She sought recommendations from her friends, but because of the need to take care of the infection as quickly as possible, she chose this surgeon who was inexperienced with the combination, underwent surgery and left with a mouthful of stitches and missing her two front teeth. “I didn’t know what else to do. I searched for an oral surgeon who had successfully treated adults born with facial differences and could not find anyone. I needed to get the surgery done as quickly as possible.”
“I had the stitches taken out, I got home and took a drink of water,” she remembers. “The water went right out of my nose. It also made a sucking noise as I tried to swallow. So I called the doctor, and he said, ‘I think I created a small hole in your sinus.’” Simon says she should have listened to her gut. “You have to be your own patient advocate. I learned the hard way. Just because a doctor says he can treat you doesn’t mean they are the most qualified.”
Her efforts to get that issue remedied led her to different ear, nose and throat specialists and a plastic surgeon. “There are surgeons and dentists who are specifically trained in treating patients with facial differences.” Her advice to health care professionals- “when in doubt refer the patient out.” As an adult, she had a hard time finding a surgeon and dentist that treated adults born with a cleft lip and palate. Simon says, “By the grace of God, I found the University of Illinois-Chicago Craniofacial Center. It was life changing. I finally found a group of doctors that had experience and could successfully treat me. The UIC Craniofacial Center provided a team approach looking at the patient as a whole.” While Simon ultimately underwent two surgeries in two years – one to build her palate from bone taken from her hip another to create an airway to allow her to breathe through her nose. It was her first experience in the waiting room area that triggered something.
“I walk in and there are all these babies and adolescents who had cleft lips,” she recalls. “I sat there and thought, ‘Oh my God.’ I never thought twice about how many children are actually born with cleft lips, and I wondered if there were any children books for them?”
Simon searched her local library and the Internet and found that while there were a couple of kids’ books about having a cleft lip, they were nearly 20 years old. On the drive home from that first appointment, a story came to her about a cardinal named Simon born with a gap in his beak, who meets Patty, a young girl with a cleft lip. The story is now in print as “Smile with Simon,” a children’s book to help kids born with a cleft lip and/or palate understand that they are not different or strange. Simon wrote another book, “Simon and the Buddy Branch,” which she says was inspired by meeting with old friends and hearing stories about how kids who had facial differences or were born different found themselves uninvited to friends’ birthday parties or with no friends to come to their own.
“No child should have to go through that,” Simon says. “This is a chance to raise awareness not only for children, but for parents as well.”
In addition to the books, Simon has her own website, smilewithsimon.com, where the books are available for purchase and the website provides educational and treatment resources for children born with facial differences. All proceeds from the sale of the books go to organizations including the American Cleft Palate-Craniofacial Association, Face the Future Foundation, Children’s Craniofacial Association and Facing Forward.
The message, Simon says, is simple. Although everyone has something that makes them different, it’s important not only to stand up for yourself but to be kind to others.
In July, Patricia Simon will be the Keynote Speaker at the Inaugural Cleft Lip and Palate Team Day at the New York Presbyterian Children’s Hospital.
“Smiling helps you get through life,” she says. “You have a choice, so smile and be happy. We all have a story to tell. Make yours a good one. Smile with Simon and be kind!”
What counts in life is not the mere fact that we have lived. It is what difference we have made in the lives of others that will determine the significance of the life we lead -Nelson Mandela
Has it been a smooth road?
I would not change a thing. I am the person I am today because I was born with a cleft lip and palate. I have undergone struggles along the way, however, I kept going. Everyone faces stumbling blocks and fears. However, it is how you handle those obstacles that sets you apart. I never thought I would write a childrens book, let alone two. I never thought I would create my own website to help others. I never thought I would co-write a song or create a video for children. But, I did. Why? Because I thought if I could help one child or one parent who had a child born with a facial difference understand and believe that we are all different and that’s ok.
You will be bullied. Yes. Everyone is bullied. You will have struggles. Everyone has struggles. There are people and resources out there for you to help you along the way. There is a team of health care professionals that treat the whole patient-plastic surgery, dental, hearing, speech, social, etc. You are not alone.
After her books were published, she went back to her local library and hand delivered the books to the librarian in the children’s section so children would have access to the books. However, after going back to the library and checking to make sure they were added to the catalogued library she found out they were not listed. The head librarian said they never received the books. So, Simon went back again to the library and brought the books. Simon received a call back from the library saying they would not carry the children’s books because it would take too much time to catalogue them and they were not sure the books would hold up over time. Not taking no for an answer, Simon pushed on and explained the importance of the books. Finally, after much convincing, the library agreed to carry the books. Simon said the whole point of writing these books were because there were no books out there for children. And, then to be told that the library would not carry the books that she had just published was unbelievable. Simon says, don’t take no for an answer. Push on. If you believe in something and face obstacles you have to keep fighting for what you believe in.
So, as you know, we’re impressed with Smile with Simon – tell our readers more, for example what you’re most proud of as a company and what sets you apart from others.
I was born with a cleft lip and palate. I am also a Registered Nurse. So, I have been both a patient and caregiver.
I am the author of Smile with Simon and Simon and the Buddy Branch. These books were written to show that we are all different and it’s ok. Be nice and accepting of others. Extend your hand to others in need. It’s actually pretty simple. Smile with Simon and be kind.
I also have a website, Smilewithsimon.com that provides resources for those children born with craniofacial differences.
I am an independent author. I am not in show business or have any connections on TV. So, promoting my books has not been easy. I hand deliver my books to libraries and send my books out to families in need. All in hopes in spreading the news that we need to accept each other’s differences and be kind to one another.
Let’s touch on your thoughts about our city – what do you like the most and least?
I love that there is Spring, Summer, Fall and Winter. Chicago is a beautiful city with so much to see and do. I love the Chicago Cubs-I have been a lifelong fan. When the Chicago Cubs won the World Series, well, that just proved that miracles do happen!
I am not too keen to being here in February when the temperatures are well below freezing. Other than that, I love that I was born and raised in Chicago and that I am proud to call Chicago my home.
Contact Info:
- Website: www.smilewithsimon.com
- Facebook: Smile with Simon
Getting in touch: VoyageChicago is built on recommendations from the community; it’s how we uncover hidden gems, so if you know someone who deserves recognition please let us know here.
