It's hard to do so something you've never done before but don't give up

I am trying my hand at writing a Children's book and it's been rather hard. My first draft was way too long and had too many positive messages, stories within stories and a lot of characters. Way too much for a children's book.

I know the story I want to tell. But, I'm having a hard time.

Here is the story- a cardinal was born with part of his beak missing. Simon is the name of the cardinal. He goes to a team of doctors that work together to get him the proper care that he needs. Throughout his life he meets other birds that help shape his life. The other cardinals see Simon as he is and love him for all his imperfections. They look past his scar and find his inner beauty. And, Simon finds their inner beauty. Susie, Pixie, Fallon, Pete and Mark, and Mrs. Klein all teach Simon important life lessons. There is a Bully, and he flies around being negative and picks on the weak birds.

The message of the book is to let every child know that no matter what hardships
you have in your life-you stand tall -be proud of who you are !! Overcoming trials is what shapes our identities and makes us stronger.

I found a wonderful woman through Etsy that made each of Simon's flock according to my specifications (glasses, jewelry, flip flops, butterflies, teacher with books and two male cardinals who are in love). As well as a angry, miserable bully cardinal. The name of her shop in Etsy is AHappyCarrot.

So I have the message and the characters. Now I just need to write it. My first draft was way too long. I've looked at so many children's books and they all are very succinct and basic. Powerful messages that seem so easy to understand.

I also looked at books that were written specifically to address cleft lip and palate kids. However, none of them really engaged me and left me thinking that I could do better. So, that's what I have set out to do. Who better to write a book about being born with a cleft lip and palate then myself. It's really a book about being born different. But, as you go through life you realize that everyone is different and it's actually a good thing and should be embraced. But, when you are a child, you just want to fit in and not stand out. You don't want people staring at you and making fun of you. You just want to blend in with the other kids.

I picked a Cardinal because they are beautiful, strong birds that represent faith, hope and joy. They have always appeared in my life and my family's life as a reminder that angels are among us. Whenever I see a cardinal it has provided me with comfort knowing that someone from heaven is stopping by to say hello and to leave a message as if to say you are loved and to stay positive and strong.

So, now it's time to try writing another draft of the book.

Everyone needs a little bling in their life!

I went Tuesday for my appointment to begin the process of getting my dental implants.

Dr. Reisberg had told me in advance that this was going to be the hardest part of the process. He put some cherry tasting like novacaine jelly on my gums. Then waited a bit before he gave me the injections. Front gums and roof of mouth. Several injections and they were painful. I wish I had taken something before the procedure to help alleviate my fear. Anytime any dentist or dental hygienist would work on the front part of my upper teeth I always broke out in a sweat and would stiffen up like a mummy. This was no exception. My cleft palate runs from my front left gum to my roof of my mouth. Like a passageway.

This appointment involved cutting into the gums to uncover the dental screws. Dr. Reisberg used a  'puncher' to expose the screws. But, before he did this, I had one or two stitches remaining in my lip from the lip revision I had in October 2015. He used tweezers and scissors to cut the imbedded knot. This whole process took about 10 minutes of pulling and tugging my upper lip. Finally he said he got 1 7/8 's out. Yikes, that hurt but I was glad that blue stitch finally came out because I could not only see it but also feel it.

Back to the procedure. Dr. Reisberg continued to unveil the screws. At the very end he put silver caps on the end of the screws. I'm not sure what happened at the very end but all I know is that I almost jumped off the table in pain. He was pushing on the left implant with a lot of force and the pain shot through my body as I screamed in pain. He apologized and said he was sorry that portion was painful.
I thought to myself, "oh dear God, I hope the bone did not crack." In fact, when I go back on March 4th I'm going t ask that he take an X-ray to make sure everything is okay.

The whole procedure lasted a little over an hour. After the procedure, he gave me a mirror so I could see the two silver screw ends. When I looked at myself and saw the silver all I could do was think back to high school. I had to have braces and in order for that to happen I had to have a "silver" left front tooth. I guess a needed a 'cap' that was strong enough for the braces. My God. Here I was in high school walking around with a silver front tooth. This was before Madonna or 50 cent who made 'grills' popular. I stuck out like a sore thumb. I mean come on. I'm in high school having a shining silver front tooth. I had that silver tooth for at least 3 years. No wonder I never dated in high school! I looked like a freak. So, when I looked at myself in the mirror with the two small screws I just smiled to myself. Almost 55 years of age and still got the bling!

You have to have a sense of humor or you will not survive in this world. You have to walk around with a skin tone bullet proof vest because you are gonna need it. Just when you think things can't get worse-they do. So, you just pick yourself up, dust yourself off and move forward.

I can certainly walk around with these little silver screws for the next two months. Geez, that is nothing. I have 4 more appointments set up every 2 weeks so I should have my new teeth by then. I guess they have to make dental impressions and make the screws longer during the next several appointments.

I will go back and try and find pictures of me wearing my silver bling in high school. I know my yearbook picture has me flashing my bling-I smiled with my mouth closed but you can still see some of the silver shining through.

Here is a picture of me after my procedure. Those little screws are not gonna stop me from smiling!

Smile Even Though You Might Be Missing Some Teeth

I've learned a few things since I had to have my two front teeth removed two years ago.
First, nothing can stop you from smiling!

Second, you don't realize how important your teeth are until they have to be removed.

Third, people look at you -stare-when they see that you are missing your front teeth. It's a great way to tell a tall tale or have a little fun explaining why you are missing your teeth.

Scenario, I'm in the cafeteria at work waiting in line when I run into someone I haven't seen in years. I have a huge smile on my face and say "hi!!". This girl looks at me with shock in her face. I don't even wait for her to ask me about my teeth. I start by saying, "I'm sure you are wondering what happened to my teeth? Well, I was at a Chicago Blackhawks game and the puck flew over the boards and hit me in the mouth. It was in the news. Didn't you see it?". Her expression on her face was priceless. She was in shock and said, "oh my God, how horrible!". She went on to say that she was meeting up with the old gang from our previous job that night. I told her to tell them I say hello. This girl was a huge busy body and loved to gossip. So, I walked away and just had the best laugh. I would love to have been at that dinner to hear her tell the story.

Another time I was at work and was walking down the hall when the Director was walking towards me. I flashed a huge smile. Huge smile. The look on his face was one of shear horror. He looked at me and his face said it all. "Oh my God, what happened to you? Wait, doesn't the company offer dental insurance??"  Again, as I passed him, I just giggled.

You have to have a sense of humor. When things happen to you unexpectedly you have a choice to make. Either make the best out of it or walk around with a frown on your face. I chose to keep smiling and laughing over these past two years.

Tomorrow I start the process of getting my two front dental implants. They had to take bone from my hip to build my palate and I've had to wait to make sure I have enough bone for the implants. Two years waiting for the bone to grow. That's a long time to walk around and not have your two front teeth.

When I was in New York over the Holidays, I sat on Santa's lap. I smiled at him and said, "Santa, all I want is my two front teeth". He had a sweet smile on his face and said, "Well, I can't promise that. That's a pretty big wish". I said , I know Santa and he winked at me and smiled as he handed me a candy cane.

I am nervous about tomorrow. I guess tomorrow is the worst of the 5 upcoming appointments. They have to cut into my gum and expose the two dental screws. Just thinking about the injections makes my palms sweat. But, I will get through it. And, hopefully by the end of May I will have my two new front teeth. I'm sure I will be smiling from ear to ear.

I have to give a wonderful shout out to the University of Illinois in Chicago. Specifically, Dr. Cohen and Dr. Reisberg. Dr. Reisberg is a wonderful Dentist who knows what he is doing! He is kind and is an artist when it comes to restoring your smile. He has a very caring soul. Dr. Cohen, is also an artist and every patient is his masterpiece! As my Mom would say, God bless the day these two doctors were born. My heart is filled with gratitude for these two wonderful doctors and the entire team at the University of Illinois in Chicago Craniofacial Clinic. You make sure each person can smile!

Don't hold back. Smile and let everyone be touched by your beauty!

We all have a story to tell so make it a good one!

I've started this blog so that you can learn about me and my experiences. I was born with a cleft lip and palate. However, that scar does not define who I am. I am more than a scar. I believe that I've turned out to be a good person who just wants to pass on words of wisdom and share experiences that I've had in my life that changed me for the better.

I've been reading some blogs from Moms that have cleft lip and/or palate children. You are at an advantage because you have the internet and support groups that can help you with your concerns.

When I was born in 1961 there was no social media-no IPhones, no Internet, no texting, no tweeting, no Facebook and no way to gather information other than the encyclopedia or going to the library to look up medical explanations. The Internet is a wonderful resource when used properly. However, you can fall into the social media vortex spending hours upon hours reading into things or trying to connect to people that may have the "answer" to your problems.

The only reason I am on Facebook and created a blog was because this was suggested to me as a way to connect with people. So, I will see how this goes. If I can help one person than it has been worth it.

I guess the most important thing I can say is that you will get through this. Life really is what you make it. You can choose to be a positive or negative person. You can think only about yourself or you can reach out to others. In life, you get what you give. Pretty simple to remember and implement. The rewards are not monetary but rather help shape the person you are becoming. Do the right thing, extend your hand and help the next person. You have a voice so use it. Never be afraid to question a health care professional and listen to your heart. If what they are recommending does not sound right to you, hit the pause button and see if you can reach out to others and get a second, third or sometimes fourth opinion.

Define what you think the word beautiful means. For me, beauty is what is in the inside and doesn't happen overnight. Your story in life will create the inner beauty and people who really love you will see that beauty when they look into your eyes. Smiling helps that inner beauty escape so it can touch others.

There are unfulfilled needs of adult patients who have had a cleft lip and/or palate

Adult patients continue to have a wide range of problems relating to their cleft.

For some patients who have had a cleft lip and/or palate, problems continue into adulthood or arise later in life. These problems are often multiple and treatment often requires the input of more than one specialist. Common problems such as nose and lip deformity and malocclusion, poorly fitting dental prostheses, oronasal fistulae, and speech problems are just to name a few. 

There needs to be a global awareness that there is a need for coordinated multidisciplinary cleft teams to provide continuing care for patients who have a history of cleft lip and/or palate. The team approach plays such an important role in optimizing surgical, dental, speech, and psychosocial outcomes for these patients.

Please help me raise the awareness. Where do adult patients turn to for help?

My Story

My Name is Patricia Simon and I was born with a cleft lip and palate.

My first surgery was at 6 months of age. I had speech therapy when I was a child. I had my second surgery when I was 13-14 years of age. 

I recently had two more surgeries as a result of getting a dental abscess in my two front teeth. Due to a dentist inexperienced with cleft lip and palate, I continued to have problems with my teeth and had to have bone taken from my hip to build my palate. 

For the last two years, I have been without my two front teeth as I wait for the bone to grow in my palate. The next step is to begin the process of getting dental implants for my two front teeth.

I am the youngest of five children and my brothers and sisters have always been very supportive and loving towards me. I have also been blessed with having wonderful friends. 

I am a Registered Nurse and have taken care of babies born with cleft lip and palate. I have also provided support to the families.

My family has supported Smile Train throughout the years. When my mother died she asked that in lieu of flowers that donations be sent to the Smile Train. I have raised thousands of dollars by asking my family, friends and co-workers to support the Smile Train. In December 2015, I went to the Smile Train headquarters in New York to see how I could help Smile Train make more smiles possible for children.

I know what the journey is like. No individual can provide any greater comfort or insight than someone who has had to face the same type of problem. I would like to make sure that every patient who has been through this experience comes through it with a positive and optimistic outlook toward life. There are others out their walking a similar journey and I hope to be an encouragement to others. I hope to offer support, information, and an opportunity to network with others affected by cleft lip and palate and other craniofacial deformities.  I hope others will benefit when I share my experiences and my knowledge; The highs and lows. I hope to help others help navigate through difficult social situations.

I am trying my hand at writing a children's book on cleft lip and palate. The story will be about Simon, a bird born with a separation in his beak. It will be a story of love, acceptance and kindness. It will speak to the importance that a smile has on others. Smiling is so important for the soul!

I am dedicated to help those affected by cleft lip and palate.  We now have a website: http://www.smilewithsimon.com/

I hope this will serve as a venue for camaraderie and a formula for hope and support. 

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