Friday, December 30, 2016

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😊

Sunday, July 31, 2016

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.

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!

Monday, June 6, 2016

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. 

Thursday, April 21, 2016

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!

Friday, March 25, 2016

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...

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 searching the internet for a Craniofacial specialist I came across the website for The Cleft Palate Foundation. It was on this website that I was able to find the University of Illinois Craniofacial Clinic. While looking at all the resources on the Cleftline website I saw that you could purchase a cleft line bear. The teddy bear had stitches on his lip. For $10.00 you could support the Foundation and also bring a smile to a child's face.

When I was at the University of Illinois Craniofacial clinic I saw how many children were being treated for cleft lip/palate. I had no idea how many kids are born with cleft lip/palate.

When I was born, I had surgery at about 6 months of age and then again as a teenager. I went on with my life and never really gave it much thought. I would go for dental care during my adult years and never had a problem. Until I developed an abscess. Then it changed everything. It changed my life and opened my eyes.

 After doing further research, I came to learn how many children are born throughout the world with cleft lip/palate. I realized things just don't stop once you have the initial surgical repair. Some countries, there are still thousands of children waiting to have the initial surgery. The children are looked upon as outcasts and abandoned.  My family has always contributed to the Smile Train over the years. But, I needed to do more. I felt compelled to give back. But how??

While at one of my appointments at the UIC clinic I sat and watched the steady stream of children and parents coming in for their appointments. Every seat was taken in the waiting room. It then hit me. Why don't I buy as many of these cleftline teddy bears and give them to the children at the Clinic. And, that's exactly what I did. I would buy 20 bears at a time because that is how many would fit in a box to be shipped to the clinic.

I would buy the bears throughout the year. I also got people at work to purchase a bear. I also would give bears out at work to people that had little kids. My thinking was every child would love a teddy bear and it teaches children at an early age that we are all different. Even teddy bears are not all exactly alike.

In the last two years I've been able to purchase a large number of teddy bears. It supports the Cleftline Foundation and it brings a smile to a child's face. Plus as an added bonus, it makes me feel good.

When I came to the clinic for one of my appointments, Alma, one of the terrific nurses there told me that she gave a bear to a girl that was going off to college. The girl had been a patient of the clinic for years and she was so happy to receive the teddy bear. Alma told me the young lady was going off to college and she was going to bring it with her for her Dorm room.  That brought a smile on my face!

And yesterday, when I went to the Clinic for another appointment, Alma greeted me and told me how much the patients like the bears. A smile appeared on her face and mine. She made my day.

So you see, sometimes when you least expect it, a simple gesture can make a difference. We get so caught up with our life that we forget the small things. Those small positive gestures can turn into something wonderful and powerful. And, it creates a snowball effect. You want to do more. You want to make a difference. You want to leave a legacy of doing the right thing and doing something positive for someone. And so, more good things are coming out of being treated as an adult cleft lip/palate patient.

The cleft line bear has stitches over its lip. It's really adorable. And, on its ear is a tag of the 1-800 number saying that Hope and Help are on the line. Just hugging the bear makes you want to smile.

For $10.00 you can purchase a bear. You are never too old to have a teddy bear!