"mY sTORY"

Everyone has a story to tell and this is my story

"Life is a journey, the possibilities are endless."

I never really thought I would be writing a Children’s book, let alone two. Or, that I would have in my mind how I would like each of the dolls to look so that they appropriately represented important people in my life. Nor did I imagine that I would have a song in my head and knew exactly how I wanted it to sound. I wrote some lyrics and told my friend Cary Kanno, exactly what I wanted. And, after just one revision, the song, Smile with Simon, was made. I also had a vision for how I wanted a video to go with the song. And, I found someone that made it all come to life. I had no idea that the videographer that I was working with knew about cleft lip. It turns out her mother was born with a cleft lip. I guess when her Mom was born her parents did not have enough money for surgery so her father who owned a farm, sold one of their cows to help pay for surgery.
But, let me go back in time. It was just a few years ago when I found out I had an abscess in my mouth during a routine dental cleaning. The two oral surgeons that were recommended to me had no idea how to treat an adult cleft palate patient. And so, I found myself searching on the internet for a hospital that took care of adult cleft lip/palate patients. And, I hit the lottery. I struck gold. I got the golden ticket. I found the University of Illinois Chicago Craniofacial Clinic.
To be honest, I was not too impressed when I first walked into the UIC clinic. It was well, a clinic. A dirty aquarium greeted patients and there were not enough chairs for the patient’s to sit and wait. But, I quickly forgot all about that. I was met by a wonderful, cheerful front desk staff. And, then I met Dr. Cohen, his nurses Terri and Alma, Dr. Reisberg and the rest of the team. I knew I was in the right place. Over a series of appointments, I had my hearing checked, my breathing tested, my speech evaluated, my bone density in my mouth measured and so on.
I underwent two surgeries-I was in my 50’s. I thought I was done with surgery. I was wrong. But, thankfully they were performed by Dr. Cohen and Dr. Reisberg at UIC Medical Center.

I was filled with gratitude. Gratitude for finding this team of health care professionals at UIC. I was so happy that they knew what they were doing. They had experience, knowledge, and compassion. The care I received was excellent. And, the care that each patient received was excellent. If you lived on the North Side of Chicago or the South Side of Chicago-it did not matter. If you had health insurance or were a self pay, the care was the same-excellent.
By going to UIC craniofacial clinic I became inspired. At the time, I searched the internet to try and find cuddly stuffed animals to give out to the kids in the clinic. That is when I found out about Clefline bears. These bears were special-they had little stitches on the bears lip. So, I bought boxes of Cleftline bears and had them delivered to the clinic. Terri, the nurse at the clinic would hand out the bears to the kids. When I looked at the tag for the bear, it did not have a name for the bear. And, I thought to myself, every stuffed animal needs a name. And so that put a thought in my head. I continued to buy more bears through Cleftline to hand out at the clinic and at the yearly UIC craniofacial Holiday party. It made me feel so good. To give back.
I kept thinking about the bear with no name. And so while in the shower-where I do my best thinking, I started thinking about creating a website to spread the word that there were indeed places for adult cleft lip and/or palate patient’s to go for care. When I would go to the clinic I would sit there and look at all the people affected by cleft lip and/or palate and other facial differences. I was the oldest patient. But where were the other adult patient’s? I just had to get the word out. And, so, I decided to come up with a website to help others with facial differences find the right team for them. I also decided to blog about my life experiences. I came up with the name, Smile with Simon. Simon is my last name and I like to smile! And then I saw a cardinal. Cardinals are very special to my family. They are a sign of hope, belief and they remind me of my wonderful parents. Whenever I see a cardinal, I think of them. And, so, I decided that the cardinal would be the ‘mascot’. I then worked on designing a cardinal with stitches on it’s beak. The cardinals name would be Simon. And, so, I worked with a wonderful woman through Etsy-Kim C (A Happy Carrot) who saw my vision. I had her create Simon and then I had her create Simon’s friends. Susie-my sister who loves butterflies, Fallon-my wife who loves to wear flip flops, Pixie-me dearest friend who wears the most beautiful jewelry, Coco-my dear friend who is both a nurse and teacher and has taught me a lot about getting up after being knocked down, Pete and Mark-two of the most loving guys I know, and Jose-my brother Joe who is a gentle giant with a heart of gold. And then Buddy-we all have the name Buddy. We are here on this earth to lend a helping hand, to be kind to one another and to realize that we are all different. And, it’s ok. We are all beautiful. No one is better than the other.
So, an act of kindness has turned into something big. At the UIC Craniofacial Clinic they provided me with something more than excellent care, they provided me with inspiration. Inspiration to tell my story. To make a positive difference. To help others. To put a name with a face. To use your smile to soothe someone’s fear or to share a special moment in time.
And, so, I am on a journey. A journey I never thought I would be going on. I have been touched by so many people. I’ve seen children smile through the pain. I’ve found out that there is such a wonderful network out there for people that need to share their pain, frustrations, celebrations, and questions. There are so many support groups on Facebook, so many Hospitals, Clinics and Foundations just waiting for you to click open the icon or step through the door. Imagine what your life can become if you let people in. It truly is amazing the positive things you can accomplish.
A few weeks ago, I was invited to the reopening of the UIC craniofacial clinic. A wonderful person gifted the clinic with money to update the clinic with new paint, furniture and a beautiful fish tank. The clinic looks bright and cheerful. It’s sure to put a smile on anyone’s face as they walk through the door. Face the Future Foundation is part of the UIC craniofacial clinic and it’s a wonderful Foundation-raising money for families who have someone they love with a facial difference. At the ribbon cutting ceremony, Dr. Cohen called me up to the podium so that I could play the song, Smile with Simon. I was totally caught off guard but smiled from ear to ear, showing off my beautiful new front teeth and shared the song. On the wall at the clinic, it says, “Be Brave”. How fitting. Every person walking through that Clinic is brave. We all have a ‘badge of courage’. Please realize everyday that for some people just to step outside the door, they have to muster up enough courage because they look or feel different.
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Schaumburg IL 60173
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