Simon says exclusion is a form of bullying

Exclusion is a form of bullying and needs to be talked about. To not be included, to not be chosen, to not be invited, to be left alone. Exclusion comes in all forms.

Yes, words hurt. Being made fun of is the worst. But for me, being excluded is far worse. Growing up, I dreaded gym class. There were always ‘Captains’ and they had to choose who was to be on their team. One by one, they would pick their choice. I was always the last one to be picked. Grade school dances-absolutely dreadful. Back in the day, we had ‘dance cards’. Girls would sit on one side and the boys would sit on the other side. The boys would walk up and down the girls side and pick someone to dance with. The boys had to sign the dance card. For me, I would sit there and watch others dance and my ‘dance card’ never had a name written on it. Recess-time to go out for an hour and play. I would always choose the swing. I would swing up and down and watch the cluster of kids playing catch or tether ball. When I would get off the swing, I’d head to the monkey bars and try and play with the kids. Suddenly, they all ran away and started playing at another part of the playground. Now, I don’t know if I was excluded because I had a cleft lip, my nose was crooked, my ears stuck out from my hair or I talked a little funny. But, I’m pretty sure that is why I was left alone. I was different.

I had a secret Santa in 3^rd Grade. But, while all the other kids found presents on their desks, my desk had nothing on it. I remember looking down and praying that I could become invisible. Maybe the person was sick that day or maybe they forgot it was the day we were exchanging gifts. But, for me, it felt personal and it made me sad.

Exclusion just didn’t happen in grade school. It happened in high school and in college. And, it continued to happen in my professional career. Unfortunately, it still happens today. However, I am older and I hope wiser. It still hurts but not nearly as much. After being on this earth for over 55 years, I learned to cope. To deal with it. I surround myself with people who lift me up. People who like me for who I am. It’s a mutual respect and love for each other. Few people are in my inner circle and that is exactly how I like it. I know I can count on them and they can count on me-in times of struggle and disappointments but also in times of celebration and success. We embrace our differences. We accept one another.

I was never a popular kid in school. I was always chosen last. I was the one who never got invited to parties. I was the one who never had a boyfriend. In high school, I would attend ‘sock hops’ and would just stand at the side watching people get invited to dance or to pulled in to join a group dancing. In college, I went to ‘Catholic Alumni’ dances because, well, that’s what you did. My parents gently encouraged me to go. And, so, I went. But, again, I faced exclusion. I could not even get a guy to talk to me, let alone ask me to dance.

I’d come home and my parents would anxiously see if I had a good time and I would just meekly say I did. But, in all honesty, it was dreadful.

Now I look back at high school and laugh. I laugh because, I had a silver front tooth where my cleft was. I guess, back then, that was the only thing solid enough to pull my braces. I would smile and this silver tooth would blind you when you looked at me. My God, of course, I didn’t get asked to dance or have a boyfriend. I looked freakish. Picture this, I was tall for my age so I stood above the rest. And, I had this misshapen nose, scar down my nose to my lip, braces and was not pretty compared to my classmates.

I had a great sense of humor and loved to make people laugh. I used my sense of humor to pull people in. I may not have been the most beautiful person on the outside. And, that was ok. My parents and brothers and sisters made me feel loved and safe. They lifted me up. They tried to protect me so I would not get hurt. But, they also pushed me out the front door and wanted me to experience life with all of its ups and downs. They helped define the person I am today. They always included me and because of that I always felt supported. Our house was a safe place. A place that you could shed your tears and vulnerabilities. A place where there was unconditional love. It was also a place where I always had friends. My brothers and sisters were my first friends. They taught me about life.

I was also very fortunate in that I had become friends with a girl in grade school-Karen Walsh. She never made me feel different. She included me when she was going to a party or to go bike riding. Simple things. But they meant the world to me. Through Karen, I met and became friends with her friends. Thankfully, they also accepted me and included me whenever they would go roller skating, ride their bikes or go to the mall.

In high school, I had to meet new friends because Karen and my other friends went to a different high school. I remember the day when I met Pauline Rahr. We were in German class freezing because Sister Marie Barbara had the window wide open in the middle of winter. I was goofing around and our eyes met. She was laughing as well. And, well, an instant friendship developed. Pauline got me. She got my sense of humor and always made me feel good about myself.

I went to an all-girls Catholic High School. Beautiful, over achieving, popular girls all trying to be the class President. There were ‘klicks’ and that was to be expected. I just wanted to survive and get through four years of being surrounded by drama queens, cattiness, and bullies. Yes, bullies. I was made fun of. I was also excluded. But, I was able to form some wonderful friendships with girls who were genuinely nice. They liked me and I liked them. We formed a solid bond. A bond of accepting each other for who we were-our flaws and our differences. But, also, our inner beauty. Donna Wilk, Shannon Sullivan and Pauline Rahr-thank you for the gift of your friendship.

Something happened to me in high school and it carried me through the rest of my life. I became secure in who I was becoming. I accepted who I was. I became confident. I liked who I was and became comfortable in my own skin. I owe this to my wonderful, supportive family and close friends.

In Nursing school, I met two wonderful people. Jean Klein and Mary Osterberger. We were in the same boat. We were paddling towards the same goal and that was to survive nursing school and become a Nurse. We had fun along the way. We laughed at our failures and supported each other when we didn’t pass a test. We were there for each other. And, boy did we celebrate when we passed the test and was able to move on to the next nursing class.

As a nurse, I also met and became friends with some terrific women. Karen Modica was someone who I clicked with. We worked 12 hour nights together and as we fed the babies, we would talk. Really talk-about life, hardships, hopes and dreams. As a Traveling Nurse, I met Sherry Tackett. A free spirit. A woman who opened my eyes to so many new and wonderful experiences. And who taught me it's ok to be different.

 I am in my mid fifties. I have decided to take off my seat belt. Time to take off my training wheels. I am ready to forge into unchartered waters. I’ve never written a book, or a blog, let along write lyrics to a song. But, I feel like I have a voice. A positive, powerful voice. It takes courage to do the right thing. It takes support from your family and friends to support you and your dreams. But, what have I got to lose? Nothing really. There is so much bullying going on today. So much exclusion. Who are we to think that we are better than someone else? Who gives us the right to be mean to someone? To make fun of them? To decide they should not be invited to sit with you at lunch or being asked to come to a party?  I am, by no means perfect. I am no angel.  I have made mistakes along the way. I have treated people unfairly. But, as I’ve gotten older, I look around and see how divisive we have become.

Thankfully, I did not grow up in the age of social media. There were no Iphones, blogs, Facebook postings, on line dating or Twitter accounts. Just the good old land line phone, TV with 7 stations, a doorbell, and you better be home for family dinner at 6. There was no caller ID. There were cameras that took film and you had to bring it with you if you thought you were going to take pictures-usually for a vacation. We had bikes and we walked everywhere. We knew our neighbors and the names of everyone on the block. We had pay phones. We wore the same clothes and there were no designer labels. There were no reality TV shows. Or, rolling ticker tapes that would play at the bottom of the news station to give nonstop information as to what was happening in the world. We had encyclopedias. There was no Google or Yahoo to look things up. You went to the library instead. You took a typewriting class in school and learned how to type on a typewriter with paper and make carbon copies. There was no Apple or Dell computers. You learned how to write in cursive. You used flash cards to help you learn how to count and multiply. Toys were simple-play dough, crayons, easy bake oven, and board games like Monopoly. There was one type of dog food for your dog-Alpo. There was usually one grocery store that you would go to. Folgers or Maxwell House was the only coffee to choose from. There were no Starbucks or fast food chains at every corner. There were no supersize drinks or food options. There were no fat free, sugar free, grain free foods.

Times do change. There are advances in technology. Both scientific and medical advances. Specialists to treat multi-faceted problems associated with facial differences as well as other medical conditions. We have so many choices in what we wear, shop, eat, vacation, work, or major in at College. So many choices. Maybe too many.

But, some things don’t change. Being a respectful, trustworthy, loving human being will never go out of fashion. Recognizing that one person can make a difference in someone’s life. A positive impact. A simple smile, an invitation to sit with you at lunch, opening the door for someone-common courtesy. Remembering to include someone instead of not inviting them because of your own selfish reasons. Saying kind words and standing up for yourself and others when you have been wronged. Having a voice and using it. These things make us great. They feed our soul and keep our heart happy. We were not placed on this earth to tear people down. We are here to make a difference. To connect rather than to disconnect. To hug and embrace someone instead of pushing them down by our words or actions. Or, by excluding them.

I can’t change anyone from acting badly. I can only be accountable for my own actions. I choose to surround myself with family and friends who share the same vision. I still stay close to the friends I made in grade school, high school and in nursing. They know me. We have a history together. I know their family and they know mine. We’ve had our ups and downs. But, we know we are there for each other-always.

I can share my message of being kind to one another and walk the walk. Bullying and exclusion is not the way to go. It makes for a very hurtful society. We are better than that. Let’s join forces and lead the days ahead with the theme of ‘doing the right thing’. If you do that, you won’t have any problems sleeping at night. You will be surrounded by good people and you will have a happy heart that smiles. So instead of exclusion, let's practice inclusion. Yes, we are all uniquely different. And, that is what makes life so wonderful. Let us set the right example, so children follow along in our footsteps. One person can indeed make a difference😊

Simon says we are all different and we wouldn't want it any other way!

And so, another year is coming to an end. It's amazing to look back and see how quickly the year went by.

No one knows what the future will hold. However, I think it's important to have gratitude fill your heart. We have so many blessings. So many things to be grateful for.  Sure, we all suffer disappointments and setbacks. That is part of life. But it is so very important to surround yourself with positive, nurturing people that will lift you up.

I'm a member of many Facebook support groups for people born with facial differences. There is a common thread in each of the groups-fear, uncertainty, and lack of knowledge of organizations out there that can offer financial and medical assistance for people born with facial differences.

There is also a bond amongst the groups. Support, hope, and love for people looking for anyone who has walked in their shoes. Through social media we are able to connect instantly to one another. How cool is that!

When I was growing up we used to have "pen pals". But now, we have Facebook, so instant, magical connections can be made. All it takes is one positive post to lift someone up. One special emoji chosen in response to a vulnerable post.

So, in 2017, I'm going to make more of an effort to "connect" with people. Complete strangers who just want their voice to be heard. Someone to fully understand what they are going through. Fears, anxiety, dreams, sharing special milestones-all through writing it down for anyone in the group to read. Knowing that it is a safe place. A place where complete strangers will lift you up, cheer you on, and pray for your well being.

Sure we were born different. But, you realize we are all different. Yet, we all just want to be loved and accepted for who we are. Let kindness be our guiding light. Reach your hand out and see how much you get back in return. It will make your heart smile and a huge smile will come upon your face.

Come smile with Simon and see the difference it makes in you and others. Let's continue to lift people up instead of knocking them down. Let's continue to support one another. And, let's start each day and end each day with gratitude. Each of us can make a difference. A positive difference in this world!
Happy and healthy 2017 to all of you. Can't wait to see what this year brings. I know it will be a great year to be alive😊

Simon says don't give up hope. Persevere and move forward

Simon says don't give up hope. Persevere and move forward

I sent out numerous emails to publishing companies to see if they would read the draft of my children's book and possibly be interested in publishing it.

Of all the emails I sent out, I only received a hand full back saying that the publishing company does not accept outside manuscripts. They only look at manuscripts from literary agents.

I was in the kitchen and said to Colleen, "I give up. No one is even interested in my book." Colleen looked at me in surprise and said, "boy, you give up easily."

She went on to say that actors and actresses go on auditions several times a day and get rejected all the time. She also said that I need to look at all the people out there looking for a job. They get rejected all the time.
I listened carefully and told her she was so right.


So, I dusted myself off, and reached out to an illustrator saying I was going to move forward with my book. I signed the contract and sent her a check to get the sketches started. 

And so, while I was in New York, I stopped in at Simon & Schuster. I talked to the guard, showed my drivers license and asked if I could possibly meet with someone at Simon & Schuster regarding my children's book. He took me aside and told me to go to the library and look up literary agents. He told me the only way to get someone to look at my work is to have my literary agent submit it. I told him, "I am my literary agent." He nicely showed me the door.
Well, I just had to try! You just never know...

So, I am going to keep on knocking on people's doors. I am going to continue  to share my story with others. I am going to keep the faith. If all else fails, I will self publish it myself. I believe in my book. I believe in the positive message for those that read it.

If at first you don't succeed, try, try, again!

There are wonderful people in this world

Simon says there are some wonderful people in the world. I asked for help and I received it. And, I received more than I expected.

It was fate that I met Mary Murphy -concierge at Omni Hotel in New York. I asked if the hotel could donate toiletries to the Smile Train. This was after Deb Silver, Manager of Donor Relations at Smile Train said she was starting to put a program together so that children would have little kits filled with toothpaste, toothbrush, soap, and shampoo. These kits are to be handed out to the kids after they have their cleft lip  and/or surgery.

I talked with Mary about the need and she said she would see if Omni would donate on a monthly basis some toiletries to the Smile Train. Mary was also going to spread the word at area NY hotels to see if they also would donate toiletries to be given out to the children after they have their surgery.

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Wow. I was speechless. I talked with Mary about the need and she went over and above to see if these items could be donated by Omni and other NY hotels.

Deb Silver,  also told me she was looking for a NY hotel to donate a hotels stay for a new group starting at the Smile Train for Young Professionals. Deb told me she was having a hard time finding a NY hotel to step up. Again, Mary to the rescue. I told the need to Mary and she worked her magic. The Omni will be donating a hotel stay to the Smile Train.


And, then I met Arlaine. She was my room attendant during my stay. Her smile lit up the New York skyline. I told Arlaine that I was going to the Smile Train Headquarters and she gave me the best hug ever! I took the extra soaps, shampoo, mouthwash, etc that I did not use and brought it to the Smile Train Headquarters. Each morning, Arlaine would greet me with a huge smile.

I made friends with both these women. They shared in my desire to help others and they were so happy to do so. I will be keeping in touch with both these women. They were angels. So willing and happy to help.

And, the Smile Train was so very appreciative.

Sometimes, when you least expect it, people pleasantly surprise you. Mary and Arlaine are my heroes. Their generosity helped others. Their smiles made others smile. And, it also made my heart smile.

Each and every one of us can make a positive impact on others. Even though I live in Chicago and Mary and Arlaine live in New York, we will be forever friends.

Deb gave me two Smile Train bags filled with a notebook and pen to give to them as a thank you for their generosity. I'm sure when they open the bag, they will smile and remember how a smile can change the world. And, one person can make a difference!

Don't take no for an answer. There has to be a reason why and a cure for children born with cleft lip and/or palate

I was just sent a DVD by The Smile Train to review their videos and provide feedback. They wanted my opinion on what documentaries I liked, etc. So, today I watched about 8 videos/documentaries on children born with cleft lip and/or palates.

After watching these videos, I asked myself, why is there no cure? 

The Smile Train completed surgery on over 1 million people. 1 million people since 1998!

One of the videos said that India has 35,000 patients each year that are born with a cleft lip and/or palate. 35,000 babies born in India each year with a cleft lip and/or palate.

The Smile Train, Operation Smile, Mercy Ships, etc have done a wonderful job providing surgery for these children and young adults. 

However, everything that I have read, there is no definitive cause as to why someone is born with a cleft lip and/or palate. It may be due to maternal diet, genetics, or environmental conditions. 

Seriously, in today's age of technology and medical advancements, no one has found the root cause? No one?

No pregnancy registry has been created that connects the dots? 

 The lip forms between the fourth and seventh weeks of pregnancy. Could it be as simple as giving women folic acid supplements during the first 3 months of pregnancy when the lips are formed during this time?

Sometimes you need someone from the outside to ask the simple question of why these children continue to be born with a cleft lip. Has anyone taken the time to document the data and review it in hopes of coming up with a cure?  Have we forgotten about this huge global problem?

Maybe I'm naive, but it can't be this hard to find the exact reason why children are born with cleft lip and/or palate. I'm 55 years old and was born with a cleft lip and palate. If, one Foundation treated 1 million patients since 1998, then there must be millions of people globally that have been been born with cleft lip and/or palate.

I'm watching the news about the Zika virus and the first case of microencephaly was reported. Zika can be spread from a pregnant woman to her fetus. This can result in microencephaly, severe brain malformations, and other birth defects. The Zika virus is on every news channel and newspaper. People are thinking of boycotting the Olympics in fear of getting the virus.

In January 2016, the United States CDC issued travel guidance on affected countries, including the use of enhanced precautions, and guidelines for pregnant women including considering postponing travel. Other governments and health agencies also issued similar travel warnings advising women to postpone getting pregnant until more is known about the risks of the Zika virus.

Conversely, this is what is on the US Centers for Disease Control and Prevention website regarding cleft lip and/or palate.

CDC continues to study birth defects, such as cleft lip and cleft palate, and how to prevent them. If you are pregnant or thinking about becoming pregnant, talk with your doctor about ways to increase your chances of having a healthy baby.

If someone is out there that wants to find a definitive reason why children continue to be born with cleft lip and/or palate, please reach out to me. I am willing and able to help. 

Won't you please join me in trying to find a solution to this huge problem that continues to affect thousands of children each year. 

Simon says stare at yourself

Stare at yourself in the mirror, in pictures, at all angles, look at yourself in the way that makes you most uncomfortable until it doesn’t anymore. If you have scars, learn to love them. 

As you get older, you get more wrinkles. So what! It's part of getting older. Learn to see yourself as you are and learn to love what you see. 

Thanks to the amazing work of surgeons over many years, and being lucky enough to grow up in a country with wonderful healthcare, I feel extremely lucky. I wear the small scar on my lip as a symbol of pride, the representation of the hard work of many and constant support of my family and friends.

It seems we are so fixated on beauty and staying forever young. But, inner beauty is really what makes someone beautiful. This needs to be the message.

 You smile with your eyes and if you have inner beauty, people will be drawn to you. So, please stare at yourself in the mirror. Your beauty should be staring right back at you and that should make you smile!

Simon Says: You can make a difference

Simon Says: You can make a difference: Cleft Palate Foundation 1504 East Franklin Street, Suite 102 Chapel Hill, NC 27514-2820 USA (800) 242-5338 (919) 933-9044 When I was...