Monday, March 31, 2014

Media Monday: Camryn Berry

I love this Media Monday post from the Franklin Sun Journal. Not only is Camryn Berry an amazing individual and inspiration, but her method for presenting to a classroom will inspire and empower you to do the same! If you do decide to make a Wonder presentation, let us know and get more information here. 

You'll love this terrific article from Barry Matulaitis. Below I've included some of my favorite parts and bolded great ideas for classroom presentations.

LIVERMORE  –  If the choice is being kind or being right, which one would you choose?

That was the question posed by Spruce Mountain High School freshman Camryn Berry to Janet Ventrella's fifth grade class at Livermore Elementary School on Feb. 27. Berry, who suffers from fibrous dysplasia, gave a presentation to the students about her struggle with the disease and how it has affected her and her family.

Friday, Feb. 28 was Rare Disease Day. Berry explained that rare diseases are those affecting less than 200,000 Americans, such as fibrous dysplasia. The disease is an abnormal bone growth where normal bone is replaced with fibrous bone tissue.

Berry told the class about all of her hospital trips, scans, surgical procedures, transfusions, and medications. Her journey began on July 30, 2005, when her mother, Tammy discovered a hard lump on the roof of her mouth. A CT scan was done, and x-­rays as well, to determine what was wrong with Camryn.

“Have you guys had x-­rays?” she asked the class.

In one of the slides that Camryn showed, she was in a hospital bed with a teddy bear. One of the students asked if the bear had to have surgery as well. “We had to put an ice pack on the bear, too,” said Tammy.

The class learned that fibrous dysplasia isn't a form of cancer, but it is very rare and has no cure. Camryn's tumor was the size of a baseball, and she handed the students a baseball to give them some perspective of the size.

Before the presentation, the fifth graders had read “Wonder,” by R.J. Palacio. In the book, the main character, Auggie, who has a craniofacial abnormality, receives a standing ovation after winning a medal for strength and courage at the end of the school year.

Camryn remembered the time an adult asked her “What's the deal with your face?”

“It  hasn't been that much of an issue with bullying,” she added. “I just think that some people aren't aware.”

In spite of all the hardships Camryn has had to deal with, there have been many positive moments as well. She recalled how much she enjoyed the art and music therapies at one of the hospitals she was at. Camryn has gone to Children's Craniofacial Association retreats, for children with facial conditions, and made new friends. While she was there, she went to an aquarium and saw a magician, among other activities.

On June 28, 2013, she and her family attended one of the retreats and all of the children got together to make a standing ovation video for R.J. Palacio. At the retreat, Camryn met Spencer Kane, an actor/singer for an anti-­bullying campaign inspired by Wonder. Later, he interviewed her as part of the campaign. His motto: “Be one of the Kind.

She said that she loved going to Hole in the Wall Camp, for children with medical problems, and made many friends there as well.

Last year, a group of girls from Canton, Georgia that have a book club called The Princess Generation contacted the Children's Craniofacial Association after they read the book. They learned about Camryn and what her favorites were. One Direction is her favorite band and the girls in the book club gave her a standing ovation in the video with the One Direction song “What Makes You Beautiful” playing in the background. At the Dempsey Center in Lewiston, Camryn did a photoshoot with a mask she created not to cover up the tumor, but to celebrate it.

“After all, it is part of what makes me me” she said. “It's taught me how generous and supportive people can be.”

“But hey...I'm not complaining,” she said. “You can't exactly blend in when you were born to stand out.”

Camryn attended Livermore Elementary School, and Ventrella remembered her in class. “When I had Camryn in fifth grade, she was so positive,” she said. “Look at everything she's experienced in her life. She's so positive today. Making that connection with Auggie today was really important.

Monday, March 24, 2014

Rick's Raffle

Support Rick's Raffle
Ann and Doug Burgin established Rick's Raffle, an annual raffle to benefit the families of Children's Craniofacial Association in memory of their beloved grandson, Rick Dornier.  Rick passed away due to Meningitis on Christmas Eve 2009, before his 4th birthday.  The family honors Rick's memory while helping other CCA Kids and their families.
Since 'Thomas the Tank Engine' trains were Rick's favorites, the Burgins always select a Thomas-themed raffle prize for the contested. The prize is drawn on Rick's birthday, April 25.
Because they themselves have "been there" and remember the stress involved, it is the Burgin's and Rick's parents choice that funds raised from his memorial raffle be donated to CCA's Patient Financial Assistance fund, which helps families cover expenses when seeking quality medical care for the treatment of their child's craniofacial conditions.

This year, these Thomas toys will be raffled:

Grow with Me Play Table

  • Thomas and Friends visit the enthralling Island of Sodor!
  • Play board is double-sided for many adventures with Thomas and Friends
  • Double-sided play board features: pre-grooved track for early engineers and traditional surface for your creative and more expert engineer
  • Creativity never ends as your child can build and construct various railways
  • Includes graphics of your favorite characters

Wooden Railway "Happy Birthday"

  • Thomas is decorated for fun Birthday festivities
  • Cargo car carries a Birthday cake and plays the Thomas and Friends theme song
  • Works great with any Thomas and Friends Wooden Railway set
  • Connect to other engines with easy-to-use magnet connectors
  • Expand your world of Thomas and Friends and create your very own Thomas adventures

Sunday, March 23, 2014

Grateful Sunday: Daylight Savings Time

I'm grateful for the return of Daylight Savings Time! Some people hate losing an hour, but I am doing happy yoga poses in my driveway because I think it's so great! While it sounds silly, time outdoors helps keep me balanced and focused, and the return of DST means I still have an hour of sun when I get home from work. Yippee!

Ancient but true, a daily "constitutional" is good for everyone! Happy Sunday!


Friday, March 21, 2014

Friday Remix: "The Girl in the Mirror..."

Today's post is a Remix from Vasavi Kumar, shared with me by Robin Williamson, devoted CCA member. (By the way, if you love CCA's amazing website, we have Robin to thank for the gorgeous work!) 

I've included only a small excerpt from the post, but you should absolutely read the full post here

From a young age I was made aware that I was different. That I didn't belong and didn't quite fit in.

My peers taught me so much:

I don’t matter.
I was socially “uncool” yet worthy of rejection and teasing.
I’m a loser, weak, and deserve to be alone because I look different.
The most I can expect in my relationships, is to be alone.
I am a fundamentally flawed human being.

And, I hated myself and who I was because of that. I’m also aware that these are the stories I created as a result of what happened. I attached meaning to everything so as to make sense out of why I was being treated this way.

The result: Extremely low self-esteem. And it looked something like this:

I would beat myself up for everything, even when everyone told me I did a good job. Because of course, I could always do better right?

I would say sorry when I wasn't actually sorry, or at the weirdest times, like if someone else would bump into me or I wanted to express a different point of view.

Oh and making mistakes? No matter how big or small, it was the sin of all sins. All my mistakes would be catastrophized and I would want nothing more than to hide under a rock from the guilt and shame I was experiencing for not having been perfect.

Saying no to others was torture, and all I ever wanted was to be alone because then at least I knew I would avoid feeling less than (guess again, because wherever you go there you are).

So is this blog post about white people?
No. Not in the way that you may think.

As my fierce and feminine friend Nisha Moodley says, "Treating racism with racism doesn't work." (click to tweet tweet)

You see, it’s easy to pass blame on “other people.” But this isn't about “us” versus “them,” whoever “them” may be for you or me.

This is about low self-esteem and self-rejection and what happens when you allow your distorted sense of Self to run your life. (thanks to my fabulous friends Jen Kem and Nisha Moodley for shedding major light on this for me.)

Honestly, it could have been anyone who taunted and teased me growing up, and the impact would have been the same.

A sense of Self rooted in rejection, unworthiness, and inferiority.


Self-rejection is poison, and I far too long have drank this poison.

This poison is so strong that I myself forget that I am a Divine Being and question my own feelings, wants, and desires.

I still need to remind myself every day. That I am not my past. I am not the words that have been spoken to me. I am not my distorted sense of Self created by me when I was a child.

That I simply…am.

And what I choose to insert after that is entirely up to me.


I’d absolutely love to hear your answer to this question down below in discussion section: What do you need to do to love and accept yourself?

Spend time with yourself. Become your best friend. Do whatever it takes to feel good about yourself. (click to tweet tweet)

Treat yourself with respect and kindness. Fight the urge to reject yourself.

This post was so good... remember, check it out the full version here

Tuesday, March 18, 2014

Douglas J Aveda Institute's "Glamour Day"

Today's post is a big THREE CHEERS FOR VOLUNTEERS!

The Craniofacial Anomalies Program at C.S. Mott Children's Hospital and the Douglas J Aveda Institute of Ann Arbor held a "Glamour Day" at the Douglas J Aveda Institute. Teenage girls with cleft lip and cleft palates had their hair styled, makeup done, and received manicure and pedicures.

Check out the full story and fun photo gallery at mLIVE, Michigan's online newspaper.

Photos: Courtney Sacco | The Ann Arbor News
Article: Kelly McLaughlin | The Ann Arbor News

Monday, March 17, 2014

Media Monday: More WONDERful Visits

Today's Media Monday post is another great example of CCA families bringing Wonder to local schools across the US. Way to go, Peter!
On Feb. 11, Peter Dankelson, a middle school student from Highland, visited Dolsen and Hardy elementary students.

Dankelson made the presentation called “Beyond the Face is a Heart” to Dolsen fourth- and fifth-graders and Hardy fifth-graders to spread the message: “Don’t be afraid to be friends with someone who is different.”

Dolsen’s school rules are “We take care of ourselves. We take care of each other. We take care of our school. We are ready to learn.” This year, the Helping Hands Club is sponsoring a “Taking Care of Others” initiative to spread the idea of the importance of the “choosing kind” concept that originated out of the book Wonder.

Dolsen and Hardy students learned the importance of being kind to others no matter what. The Dolsen Helping Hands Club is working to raise money for Peter and other children born with similar issues.

See the full story here:

Thursday, March 13, 2014

The Best Advice


            As a new mother four years ago, I felt lost in a world full of competent and happy parents who appeared to have this “parenting thing” figured out; of course, I accepted their unsolicited advice, which I soon discovered was anything but empathetic or compassionate.  Until becoming a mom was a personal experience, I truly was clueless that people are so extremely opinionated and often judgmental or abrasive when it comes to (what I call) different “camps” of parenting extremes. 
            On the one hand, I had veteran moms telling me that breastfeeding is the only way to go, and they were such purists that their worldview included the belief that feeding your baby formula was almost a sacrilege, because it was so unnatural.  Personally, I struggled with nursing due to postpartum issues and a general lack of knowledge or will to exclusively do so; there is an independent and often fiery spirit in my nature that beckons for me to rediscover my identity apart from the title of “mom” or “wife.”  At times, I simply felt smothered and suffocated if glued to my newborn baby 24/7.  These purists were also the ones who suggested we try co-sleeping and skin-to-skin contact in between co-sleeping sessions.
            The thought of this made me nauseated, mostly because these were practices that had not occurred to me prior to our oldest daughter’s birth.  Ben and I had a nursery all set up, complete with new crib, and we fully intended to use the crib immediately upon taking our daughter home from the hospital.  But I also felt sick due to guilt, because I truly felt these women were those “supermoms” you read about who can honestly do anything and do it with incredible fervor and gusto.  Alas, I fell short of this title, and so I thought myself a total failure.
            Then there were the parents who cautioned me about discipline once our daughter approached her first birthday.  “Spanking is so passé,” they would explain with nonchalance mixed with self-righteousness.  “Corporal punishment simply doesn’t work and isn’t rooted in any scientific evidence.”  There I went again with that internal dialogue as I listened to these soliloquies from different moms – some close friends, others acquaintances and still others who were strangers.  In my mind, I assumed that a quick swat on the rear now and again wasn’t going to permanently damage my child; of course, I concluded this would be a last resort for discipline and not my go-to response every time a behavior needed to be corrected.  Yet I still felt inferior in some way and as if my parenting style was “wrong” or “bad.”
            Then along came a wise sage of a woman – my own mother.  “You do what is best for your family,” she assured me one day as I sobbed to her of my interminable faults and failings as a mom.  “No one has all the answers to parenting, even with all of the books out there on the subject.  You have to follow your own conscience and be at peace with the decisions you know are best for your child and your situation.”

            Somehow in hearing that simple wisdom, my interior storm ceased raging and was replaced by the serene waters of truth.  From that day onward, I have come back to this beautiful and timeless piece of advice, and it has centered me, calmed me and otherwise helped me stay focused on taking each day at a time to do what is best for our daughters – knowing they are unique and cannot be stuffed into a universal box.  


Monday, March 10, 2014

Media Monday: Two Great Stories

Today we have two inspiring stories for Media Monday!
Check them out and thank you to everyone for spreading the message of acceptance!

Queen Creek High School Football Team Befriends and Supports Classmate, Chy Johnson
DAVE KNOER/K-KAMERA.COMSophomore Chy Johnson with Carson Jones (left) and the rest of her "boys," the Queen Creek, Ariz., high school football team.

Read more about Hoops for Humanity here: The Alternative Press

Sunday, March 9, 2014

Grateful Sunday: Lisa

Living in a fast paced, technology thriving society these days can certainly distract us from being thankful for the things that we are all guilty of taking for granted.  We are surrounded by iPhones, iPads, iMac and "i-stuff," when often the "little things" in life are forgotten.  Don't get me wrong, technology is a wonderful tool, and I use it everyday.  I am finding that I have to force myself to slow down, and soak in all that God has given me:  the ability to walk and talk, read and write, having a place to call home, a car to drive, air in my lungs, food to eat.....Of course there are so many more, but you get the idea.  For these things, I have a grateful heart.


Thursday, March 6, 2014

Brown Family Blogging

Today we have a post from one of our family bloggers, Lisa Brown. Welcome to the blog, Browns!

Hello from Texas.....we are the Brown family.  My name is Lisa and my husband is Steve, and our two boys from left to right are Landon (8), and Logan 12. 

Logan was born with Apert Syndrome on January 18, 2002 at Harris Methodist Hospital in Fort Worth, Texas, and also has a diagnosis of ADHD.  We are very fortunate to be close to our craniofacial team here in Dallas, as it is only about a 2 hour drive for us.  We live in Weatherford, Texas, which is just outside the metroplex of Fort Worth, and enjoy living in the "country."  I have been a special education teacher for 12 years, and my husband was a former teacher/coach, but now works for the railroad at BNSF as a dispatcher.

Logan has had a total of 11 surgeries - 5 of them were cranial vaults, 2 syndactyly releases, LeFort III (mid-face advancement - attach and removal), arterial tear coil clamp, and a palletal fistula repair. Our next adventure will most likely be orthodontia.  Oral appliances, braces, we come!!

Logan loves to create and build things from Legos, without directions I might add, and he comes up with some pretty cool designs!   He also likes to play video games and drive his new go cart.  As a family, we enjoy being outdoors riding go carts, swimming, camping trips, going to the ballpark to watch the Texas Rangers baseball games, and watching movies together.

We are a very blessed family, and thank God everyday for the blessings He has given us, through the good times and the very tough times.

Logan has inspired us and taught us more things than I can even mention through his strength, courageousness, and perseverance.
I have recently entered into the world of "blogging," and find that it is a wonderful tool. It has helped, not only to share our story, but to connect with others and hope that families with children who have craniofacial differences can relate in some way, and feel that they are not alone.  It has taken me 12 years to get to this point, to reach out, and am so thankful that I have.  If you ever want to visit my blog, go to:, or it is also posted on the CCAKids Family Blogs under the Apert Syndrome link.
I am still an amateur at blogging, but would welcome feedback from experienced bloggers.