Monday, September 30, 2013

CAM was a Success!

Thank you for making Craniofacial Acceptance Month a huge success!

Remember, continue to send in all your media mentions to [email protected] ... 
and we'll keep posting positive media stories on Mondays. 



Also, through today, you can still get FREE PRIORITY SHIPPING on Beyond the Face tees!

Friday, September 27, 2013

Friday Remix: My Leap of Faith in Medicine

Today's Friday Remix comes from Slate.com. Original content posted online at Slate.com on September 22, 2013.
***
My Leap of Faith in Medicine
I have an M.D. and Ph.D., but when my son had a minor procedure, I was terrified.
By Danielle Ofri
When my son was 18 months old, his doctor recommended that he get tympanostomy tubes in his ears because of recurrent ear infections. He might not be hearing clearly during this critical stage of language development. Being a physician myself, I researched this thoroughly. It turns out the evidence supporting the procedure is slight—it may help with hearing and language, but all kids seem to catch up whether or not they had the tubes.
In the end, though, I made my decision more as a parent than as a doctor—I wanted my child to have the best opportunity for language development, and besides, it was a low-risk procedure.
Two weeks later I scooped my sleeping boy out of bed before dawn, buckled him into his car seat, and hailed a taxi on the darkened city streets. At the hospital, my son snuggled in my lap as I sat on a recliner that was wheeled into the OR. Everyone was cheerful and friendly. The nurses sang songs, and the surgeon pointed out the elephants on his hat. I was given a hose with anesthetic to wiggle in front of my squirming son, to sedate him enough for the staff to get him onto the table.
We played with the hose for 10 minutes. Just when I thought that this technique would never succeed, my son slackened slightly, lolling his head against my chest. At that moment, the OR staff clicked into action. The cheery demeanor dissolved and everyone was all-business. The patient was whisked from my arms and in less than three seconds he was strapped on the table with a mask over his face, preternaturally still, unhumanlystill.
At that moment, my faith in science plummeted from beneath me. My decades of medical training, my Ph.D. in biochemistry, my grounding in the scientific method, all evaporated in the blink of an eye. The sight of my son—stone-still on the OR table, deathly rigid—completely unhinged my confidence that “everything would be OK.” Suddenly, I was not sure that anything would be OK. My little baby—23 pounds including race-car pajamas and diaper—was minuscule and fragile under the ministrations of five lumbering adults and gargantuan, stainless steel equipment. And there was nothing I could do to help him.
An orderly began to lead me out of the OR, and suddenly I stopped and clenched onto his arm. “Please,” I beseeched him. “Please make sure my son is OK.” He nodded and reassured me, even though he had no role at all in the surgery. But he was wearing blue scrubs, so to me he was somehow part of the frightening medical complex that had swallowed up my son.
I paced the waiting room, the knot in my gut twisting painfully. What if something bad happened? Adverse outcomes were rare for this procedure—I knew that—but when a procedure is performed frequently enough, rare occurrences will eventually happen. I circled the waiting room stiffly, nursing my guilt.
When the surgeon appeared without my son in tow, my heart stuttered to a standstill. I steeled myself for the bad news. “It’s done,” he said with a shrug. “He might be a little cranky when he wakes up, but everything went fine.”
It took some time for the reality of his words to sink in. Even when a sleepy, tousled boy was placed in my arms, the panicky choke of fear still gripped me. I have always been a rational person, confident in the power of facts. Knowledge armed me against the existential fears of the universe. Yet here I was facing a minor surgical procedure, and all of my armor crumbled in a heartbeat. My heart ached for parents whose children are truly ill, for the frightening bargain of uncertainty they must make as they entrust their children to the medical system.
It is as though there is a precipitous drop in front of you, but a Plexiglas bridge extends across the void as in the classic behavioral psychology experiments. The medical system beckons, “It’s safe. We’ll guide your child across the glass bridge.” But your emotions, your life experience, your gut, and your eyes can only see the sheer drop. 
Cradling a restless boy in my arms, it suddenly dawned on me that we ask patients every day to step over this void, to trust in the system. In matters both small and large, we ask them to step onto a glass bridge, reinforced only by our assurances. Even if they are able to intellectually evaluate the risks and benefits, at some point they have to make an all-or-nothing decision whether to cross that bridge.
My son recovered rapidly—he was into trouble before lunchtime—but my emotional vulnerability lasted far longer. I’m still an empiricist, and still hold strong faith in the power of the scientific method, but now I appreciate now quickly and resolutely this armor of rational protection can dissolve.
When I sit with a patient now, deciding on a treatment, I still lay out the risks and benefits as systematically as I can. But then I take a moment to acknowledge the raw fear that cannot be assuaged by even the most convincing clinical data. This conversation can’t eliminate the necessary leap of faith. But at least there is some recognition of the stomach-plummeting sensation that occurs when the patient edges their toes out onto that clear glass bridge.

Tuesday, September 24, 2013

Guest Blog: Rachel & Shierry

My name is Rachel Lance. My daughter, Shierry, has two Tessier facial clefts, one for each side of her face.  One cleft has caused a huge hole in her left cheek, from her lip to lower eyelid, and the malformation of her left eye. The other cleft pulls up the right side of her upper lip to make it look as if she's perpetually, crookedly smiling at you and has resulted in a frankly fabulous small tear drop shaped cleft on her lower eyelid. Both clefts have wreaked absolute havoc on her palate. We knew about the left cleft before she was born; the right cleft was a surprise at birth.  We might have been freaked out if we had not had knowledge of the other cleft. But, when the unexpected cleft appeared, we were just like, “Oh, Shierry, Ok. Sure. Why not.”

Sweet Little Shierry
She is only three months old, so we have barely ventured out into the world, but, before Shierry was born, I was very worried about the world’s acceptance of her. I often barraged my husband with questions ranging from, “are you sure the labor and delivery nurses won’t recoil when they see her?” to “I know our friends and family members are nice people, but still, are you sure they’ll love her as much and be as happy to see her as they would a baby without a facial cleft?” to “oh god, what about middle school?!?!” Well, the nurses and doctors at the hospital loved her, she was so cuddly and quiet. Our friends and family did not even flinch when they saw her, and every one of them adores her more than a baby has possibly ever been adored in the history of the universe. We will have to see about middle school.

We are still working on accepting the future consequences of her clefts, the sure-to-be serious speech issues, the possible food issues, the physical and emotional toll of a million surgeries, and how Shierry will work out socializing with her peers. But here’s the thing about my husband’s and my feelings about her face: they are so far beyond acceptance. We absolutely love it. Because she is missing bone in her lower orbital rims in both eyes, we get to watch as her eyes, even the left one without eyelids, form triangles when she’s excited. The left cleft has resulted in a valley running through her cheek, and we are obsessed with how, when she smiles, the errant part of her lip on the outside of the cleft flits just that much more outward. 


As her first surgery approaches, I find myself struggling with one aspect with which I never anticipated a struggle: that her face will be different. When the surgeon replaces the missing orbital rim bone with skull bone, her eyes will no longer form triangles, and when he closes the soft tissue, her smile will no longer be the same. Though I am already missing that smile, I know that we will love every upcoming variation of her face. How could we not? It’s Shierry.

--Rachel

Monday, September 23, 2013

Media Monday: HuffPo

Good Monday Morning, CCA family!
You know that CAM's goal of spreading acceptance is working when cranio topics make appearances on big name websites like The Huffington Post!

Last week, HuffPo ran a blog by Natalie Merlo, an 18-year-old with Crouzon Syndrome. I've reposted it here for you to enjoy. Like what you see? Email [email protected] to tell them you want more stories about acceptance and cranio issues!

(As always, don't forget to send in your media mentions to [email protected].)

***

Original content posted on The Huffington Post on September 17, 2013.



It's OK to Be Different
Natalie Merlo

Growing up looking different from my friends and family is all I have ever known. Fourteen years ago, at age 4, I was diagnosed with Crouzon Syndrome and have been treated by the Craniofacial Center team at Seattle Children's Hospital. When I was younger, my brother would tease me about my big green eyes, which are so different from the simple blue color of the rest of my family. The color, in combination with their massive size that steamed from my midface not being fully developed, meant I stuck out. It was the same among my friends; I was the only one smiling with my lower jaw jutting forward in a crooked smile.
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Natalie at age 9.
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Natalie at age 16.
These differences were things other people glazed over, and didn't really notice at first glance. But to me, they were so unfortunately obvious. I wish I could say that I didn't let these things phase me, but that was far from the truth. As I am now getting pictures together to hang on my dorm room wall in college, I am finding there are maybe 10 pictures of me from senior year. I had really intense orthodontics starting the end of junior year in preparation for the surgery I got at the beginning of the summer at Seattle Children's Hospital, in which I had a halo device attached to my skull to move my bones forward. This only made me look even more different from my friends. Because of this, I avoided cameras like the plague, always volunteering to take the picture, or leaning out of frame when I saw I was in one. Now when I look through the photos of my senior year, it's like I wasn't even there. I've taken more pictures this summer than I did the entire school year. And I've spent the summer with a giant titanium device attached to my face.
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Natalie at age 18 with her halo device.
I think this discrepancy is a big take away in what I have learned this summer. I always thought I stood out, and that people were looking at me like I was different. But after having this halo device on, I know what getting stared at based on appearance looks like. And now I realize it never happened to me, I just expected it and saw what I wanted to see. I've gained so much confidence this summer -- something going into this experience I never thought would have been the outcome. At first I felt every stare. It was overwhelming when I thought about how many people had seen me out with my family or friends and were talking about me. But that got so tiring to worry about, it made me unable to enjoy what should have been fun times in my final months at home. So one day, I just let it go. I realized people were more uncomfortable with themselves for staring then with me, so I just stared right back, and they quickly shifted their eyes in embarrassment. If people we really curious, they would ask and I would explain the situation to them. If they didn't ask, it didn't matter, they were strangers, and I wouldn't see them again anyway.
Just recently, at the One Direction concert I had been looking forward to for ages, I had my new confidence tested on a massive scale. But focusing on my friends and my excitement, I found myself thinking only about the concert, not all the people around me. At one point, I stopped at the merch booth to get a T-shirt to wear for the show. When I tried to put it on, I realized the head hole a little bit too small to accommodate my new hardware. Instead of blushing with embarrassment, I allowed my friend to carefully stretch it over my screws and laughed along with her as I thought about how ridiculous I looked.
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Natalie at the One Direction concert.
In these final weeks of having the halo on, I've learned how to find confidence in myself and not dwell on the opinions of others. It's a lesson I guess I needed to learn the hard way, and one that will only continue to help me after this ordeal is over.

Sunday, September 22, 2013

Grateful Sunday: The End of A Run

I talk a lot about running ... probably because I'm always doing it or thinking about it ... but also for the lifestyle benefits any type of training offers. Even though I love running, on days like today when I really wanted to skip my run and watch football on the couch, I hit the road on logged my miles. The reason was simple - I wanted that feeling of "I did it!" that comes at the end of every run. No matter how fast I ended up or if I got awful stitches in the middle of the greenway, the feeling at the finish makes it all worth it.

It's the same with any goal: at some point you are going to want to quit. The feeling may come before you even get started or it may surface when you're closest to the finish line. When I think I can't, I remember the feeling I have at the end of my runs and usually I can muster up enough energy to chase the goal a little longer.

So was it worth it today? Absolutely.
Here's proof:

Grateful for the Aldridge Creek Greenway ... aka My Happy Place

--Erica

Friday, September 20, 2013

Friday Remix: Makeup

This blog post, When Should You Let Your Daughter Wear Makeup, comes from Live-Out Nanny. This Friday Remix post fits with my own makeup experience (posted today), so I thought our readers would enjoy this perspective, as well. Readers: Do you wear makeup? At what age did you start wearing makeup? What have your experiences been like? Share with us in the comments.

***

When Should You Let Your Daughter Wear Makeup


When girls are toddlers, they think makeup is a toy or something to eat. As preschoolers, they might create a “kiss” impression with their lips while trying to apply makeup like mommy. When they hit puberty, they become more aware and self-conscious of their bodies and what others might think of them, and may start showing a genuine interest in wearing makeup. When and where to allow your daughter to wear makeup is a personal choice based on your own beliefs and your individual child.
Children almost always grow up faster than parents are prepared for, so it’s important to decide in advance at what age and in what amount makeup will be allowed. Setting clear and consistent boundaries, and explaining why you’ve set those limits, will help children accept and obey the rules.
It’s not just about what age is appropriate, but why your daughter wants to wear makeup and what she believes about herself that’s important. Encouraging well-rounded interests and activities early in life will help your daughter maintain perspective and a positive self-image. Explaining that advertising will try to manipulate her to feel like she needs their products may help her be less susceptible to their images of perfection as the ideal. Communicating with your daughter and discovering why she wants to wear makeup is important in deciding when to let her wear it. For example, peer pressure is natural, but she should also want to wear makeup for herself. Discuss the pros and cons of using makeup. (For instance, your daughter feeling more adult versus the extra attention it may attract, and how to deal with it.)
Teaching your daughter to use makeup can be a time of bonding, too, as well as a lesson in the proper use and appropriate amounts of makeup. Emphasize that makeup is meant to enhance, not hide. Beginning with a subtle look using light, neutral colors may satisfy both mother and daughter. Carol Tuttle, author of Dressing Your Truth: Discover Your Personal Beauty Profile, suggests beginning lip gloss between ages 10-12, foundation and cover-up at 13-14, and progressing to blush, eyeshadow, eyeliner and mascara between 15-17. Look for products that are hypoallergenic and oil free to cut down on acne.
Mothers may wish to take their daughter to a professional makeup artist who can demonstrate that a little goes a long way. Testing stations in the mall are a great way to experiment with a variety of colors and styles without committing to anything. To encourage an acceptable look, mothers may point out pictures of models or teen idols who utilize the style they find appropriate.
Children learn the most from what they see their parents do. If parents judge others on their personalities and not their looks, children will learn that it’s what’s inside that counts. How parents view and speak about themselves is also vital. If a child constantly hears a parent say, “I’m fat, ugly, or getting old,” they may begin to base their self-worth on their appearance.
It’s important to pick your battles and keep the big picture in mind. If your daughter’s allowed to wear some makeup by middle school, the novelty will likely wear off on its own. After all, if a girl wants to try makeup, she eventually will, and trying to keep her from it altogether will likely incite rebellion. It may be better for parents to allow her to wear some makeup while they can monitor it.
Parents can also benefit from support from friends and family as their little girl begins exploring who she is and making the transition into young womanhood. This can be a very positive time if both parents and daughters seek to listen and communicate with each other in a loving way.

Acceptance is a Journey

Fifth grade was tough. I remember the fights and the tears to this day. No, not with my classmates but with my sweet, exhausted Mama. You see, I didn’t just want to wear makeup, I needed to wear makeup. I believed I had a legitimate argument for my case, too: It would help me feel better about myself which would obviously* help me succeed in life.

Mom finally relented and agreed that I could begin wearing makeup on the first day of sixth grade. In preparation, I remember picking out a little green compact in Wal-Mart that summer along with pencils, rulers, and a new backpack. That compact held so much promise: “You’ll finally be beautiful with this!” it seemed to call from its packaging. My permitted instruments of beauty (er, success) were a CoverGirl pressed powder compact, brown mascara, pink and clear lip gloss, and Love’s BabySoft perfume.

You may know where this is going... I got my whole face full o’ slap put on and looked in the mirror. What did I notice? That makeup doesn’t make you look different. A bookish, precocious sixth grader should have known that, but I can still remember the disappointment I felt: no amount of makeup was going to change my face. I would have to change how I felt about myself and learn to quiet my inner critic, a journey I’m still on.

During CAM, our focus is sharing the message of awareness and acceptance. We contact our friends, we contact the media and we take over Facebook with yellow messages of support. But the challenge many times is finding that same acceptance for ourselves as cranio individuals (and parents). We don’t ever arrive at acceptance because life is full of challenges, but we can practice it daily. And no matter what your source of insecurity – your speech, your finances, your weight, your learning style – we can learn together that inner critics don’t get to chart the course.

For me, acceptance goes beyond becoming comfortable with my looks and outward presentation. It is more than a obtaining a series of accomplishments to hang on the wall, because acceptance is not overcompensation. Finding acceptance has required me to recognize and admit my vulnerabilities. It has also required me to adjust my expectations – not in a way that limits me, but in the sense that I know and accept my responsibilities.

Acceptance is a journey that each and every human can take. When you fully accept yourself, your goals take shape and obstacles become a part of the course meant to be climbed up and over, not an individual burden you must carry on your back for the entire path. Acceptance means knowing what you offer and what you need. It is also the ability to articulate both to those around you.

Acceptance is a journey. Every day that we wake up we can approach life defeated or with moxie. I’m walking with moxie today, but on the days I don’t? I just put one foot in front of the other and keep walking... because acceptance is a journey.

xo,
Erica

*Can you tell debate team was an early favorite extracurricular?

Wednesday, September 18, 2013

CAM Photos: Sabrina

Blogger Sabrina shows off her new Beyond the Face t-shirt at her university (next to the CAM poster she hung!).

Happy Craniofacial Acceptance Month!

Check out her two most recent blogs here: The Importance of Educating & Grateful Sunday.

Do you need some CCA gear? Order this month and you'll get FREE Priority Mail shipping through September on all BEYOND THE FACE TEES! http://www.promotes.me/

Help us turn the CCAKidsBlog.org YELLOW!
Want to submit a CAM photo? Send in your CAM photos to [email protected]
Your submission is permission to post your photo on the blog. 

Monday, September 16, 2013

Media Monday: Wonder on NPR

Here's another media mention: RJ Palacio spoke with NPR last week about her book Wonder and the motivation to write it. Have you read Wonder? Make sure to order your limited edition CCA/Wonder t-shirt here: http://www.booster.com/ccakids


Sunday, September 15, 2013

Grateful Sunday

Grateful for Small Universities 

All my life, I have always attended a small school. It's what I'm used to. Therefore when it came time to apply to universities, I was hesitant. I had wanted to continue to live at home, but the schools nearby were huge. They had over 20,000 students. As someone who is not comfortable in large crowds, I struggled with the thought of having to be in class with over 100 students. I wondered how I could possibly go to school every day without having an anxiety attack.

Luckily one day, I was searching the internet for other universities and I found the one; Bishop's University. A small university with only 2200 students! The average class sizes were only 20 to 40 students! After looking at their website, I was hooked. I knew this was the right school for me. However, there was a catch; it was located 4 hours away from home! Moving to a new town was the hardest thing I ever had to do, but it was also the BEST decision I ever made!

Attending a small university has helped me reach my full potential. I am not a small fish in a big pond, but rather a big fish in a small pond! All the professors know my name; they know my medical history and are very understanding when I have to miss class due to illness. This school has helped me come out of my shell and to be more outgoing. I am now an executive member of a club ('Pet Connection': we raise funds for our local animal shelter). I also volunteer at Reading Circle and community events. There are some days where I don’t even recognize myself! It just amazes me how far I've come and how much I've grown in the last 3 years.  

Every day I am grateful that I got accepted to this amazing school because I cannot imagine where I would be without it! I am now in my last year and I can't believe I will soon have a Bachelor's degree in Health Psychology!

This experience has showed me that it's important to choose the right school for you, no matter what the circumstances. Trust me, it's worth it! 

--Sabrina

Friday, September 13, 2013

Friday Remix: Wonder Review











Today's Friday Remix is a review of Wonder that you may not have read before. 

Take a look and don't forget: Help CCA with our BIG GOAL of selling 500 shirts to raise $6000 for CCA! Just 12 days left to reach our goal!

Order yours today!
http://www.booster.com/ccakids




***


Facing Up to It

‘Wonder,’ by R. J. Palacio



Born with several genetic abnormalities, 10-year-old August Pullman, called Auggie, dreams of being “ordinary.” Inside, he knows he’s like every other kid, but even after 27 surgeries, the central character of “Wonder” bears facial disfigurations so pronounced that people who see him for the first time do “that look-away thing” — if they manage to hide their shock and horror.

WONDER

By R. J. Palacio
315 pp. Alfred A. Knopf. 
(Middle grade; ages 8 to 12)

“Whatever you’re thinking, it’s probably worse,” he says of his face as the book begins. He’s used to the stares and mean comments, but he’s still terrified to learn that his parents have gotten him into middle school at Beecher Prep and want him to go there rather than be home-schooled. But they persuade him to give it a try — and by the time this rich and memorable first novel by R. J. Palacio is over, it’s not just Auggie but everyone around him who has changed.
Stories about unusual children who long to fit in can be particularly wrenching. At their core lurks a kind of loneliness that stirs primal fears of abandonment and isolation. But Palacio gives Auggie a counterweight to his problems: He has the kind of warm and loving family many “normal” children lack. Among their ­— and the book’s — many strengths, the Pullmans share the, um, earthy sense of humor that all kids love. Over the years his parents, Nate and Isabel, have turned the disturbing story of Auggie’s birth into high comedy involving a flatulent nurse who fainted at the sight of him, and they persuade him to go to Beecher by riffing hilariously on the name of the school’s director, Mr. Tushman. It also helps that the Pullmans’ world — they live in a town house in “the hippie-stroller capital of upper Upper Manhattan” — is the privileged, educated upper-middle class, that hotbed of parents who hover and micromanage the lives of their perfectly fine children. It’s somehow weirdly satisfying to see what happens when something actually alarming enters this zone of needless anxiety. Palacio carves a wise and refreshing path, suggesting that while even a kid like August has to be set free to experience the struggles of life, the right type of closeness between parents and children is a transformative force for good.
But it’s Auggie and the rest of the children who are the real heart of “Wonder,” and Palacio captures the voices of girls and boys, fifth graders and teenagers, with equal skill, switching narrators every few chapters to include Auggie’s friends and his teenage sister, Via, who wrestles with her resentment, guilt and concern. “We circle around him like he’s still the baby he used to be,” she observes ruefully. And we see the vicious politics of fifth-grade popularity played out as the class bully targets Auggie and starts a campaign to shun him, culminating in an overnight school trip that turns scary and shuffles the social deck in ways no one could have imagined.
While I sobbed several times during “Wonder,” my 9-year-old daughter — who loved the book and has been pressing it on her friends — remained dry-eyed. She didn’t understand why I thought Auggie’s situation might upset her. “I like kids who are different,” she said. I realized that what makes her cry are stories in which children suffer because they have missing or neglectful parents and no one to take care of them. Perhaps Palacio’s most remarkable trick is leaving us with the impression that Auggie’s problems are surmountable in all the ways that count — that he is, in fact, in an enviable position.

Maria Russo is a frequent contributor to the Book Review.
http://www.nytimes.com/2012/04/08/books/review/wonder-by-r-j-palacio.html?_r=1&

CAM Photos: Stephen


Thursday, September 12, 2013

The Importance of Educating

Imagine a world where everyone knows what a craniofacial syndrome is; a world where a child with a craniofacial condition is able to play at the park without getting stared at or bullied. Can you imagine a world where no one is judged for what they look like on the outside? Where everyone is accepted for who they are on the inside? That would be a pretty amazing world, wouldn't it?

This summer I had the pleasure of working in a dining hall for the 2013 Canada Games. The place was filled with athletes. Among these athletes, I noticed one of them had Down syndrome. She was a very sweet girl who always came in with a smile on her face. What I also noticed was that no one stared at her or made rude comments. She just blended in with the crowd. Unfortunately, for me, this was not the case. Throughout each day, I would notice people staring at me as I worked. Even when I talked to some of them, I could tell by the way they were looking at me, that they were trying to make sense of my facial differences.

I began to wonder, why did they stare at me, but not at the other girl too? Suddenly, it dawned on me; familiarity. It is safe to say that a majority of the population is aware of Down syndrome. They teach us about it in elementary school and we also even see people with Down syndrome who are actors in TV shows and movies! This made me realize that the reason the athletes did not stare at that girl, is because they all knew about Down syndrome and so it was no big deal to them. When people are faced with someone that looks unfamiliar and different, it makes them curious and more likely to stare and sometimes even judge.

What I went through at work, got me even more excited for September to arrive. This month means a lot to me because it is our chance to educate others. The more we educate, the more we are able to wipe out ignorance. If we educate others about facial differences, then they’ll be more understanding and hopefully more accepting. Knowledge is power! Every time I meet someone new and tell them I was born with Pfeiffer syndrome, I always get the same response: “Pfeiffer syndrome? I've never heard of that! What is it?” My hope is that one day; people will automatically know and recognize what a craniofacial syndrome is. Therefore, if they see someone that looks different, they'll shrug it off like it's no big deal. How is this possible? By spreading awareness! For the past 2 years during Craniofacial Acceptance Month, I have put up CCA posters all around my university campus. This year was no exception. As I started putting up the posters, I got that feeling of excitement. When I walk to class and see all the yellow everywhere, it makes me proud to be a part of CCA and all that it stands for. I have always believed that we should never judge a book its cover. It's what's on the inside that matters!

Beyond the face is a heart :) 

--Sabrina

Showing off our Awareness Month Poster on Campus

Tuesday, September 10, 2013

CAM Photos: Casey


My name is Casey Deakins. I’m 26 years old, and I’m a junior Public Administration major at the University of Central Florida. I have Apert Syndrome and Asperger’s Syndrome.  I’m minoring in Nonprofit Management with the hopes of working for an NGO, like the American Red Cross. I like working on my photography, being with my family and friends, working with non-profits, and making people laugh.


I guess my greatest gift comes from my generally goofball nature. I thoroughly enjoy making people smile and laugh. I hardly miss an opportunity to be silly, if I know it could brighten someone’s day. Maybe my goofball personality can help people see that there really is a person beneath all of the scars. By nature I’m a happy, witty type of person but around certain people, I can be a clown too. I just enjoy making people happy…….it brings me a wonderful feeling knowing I made someone’s day a little brighter. I read somewhere that laughter is the best medicine, and I am a firm believer of that philosophy. Laughter can make things seem not so bad, or turn a bad day around, etc.


So…..have you had your smile today?? 

Monday, September 9, 2013

Media Monday: Memorial Middle School

Check out this awesome ChooseKind story from Memorial Middle School in New Jersey.


The coolest thing about this story? Students collaborated and used art projects to spread the Choose Kind message. Now that's something to celebrate!

So who is going to bring this idea to their school?!




Friday, September 6, 2013

CAM: Keep the Momentum Going

After the Orlando Family Retreat, beloved Ambassadog Lentil and his mom Lindsay started a challenge to raise money to send families to next year's retreat.

Because of their amazing outreach, we are so close to $25,000 raised! These funds will go directly to help families attend retreat. But of course we don't want to stop at $25,000 - we'd like to see $50,000 by the end of the year!

Friends and family, let's show our support this September and even if you've already given, a few more dollars would truly make a difference. We are so thankful for Lentil for lending his image and his love to raise awareness and acceptance for CCA. Let's continue this good work by sending as many families as possible to retreat!

Spread this link far and wide and challenge everyone you know to chip in $5 ... or $50 ... or $5000.

No donation is too small!



Thursday, September 5, 2013

Maria’s Top 5 Coolest Things about Being Different

Maria’s Top 5 Coolest Things about Being Different

As we enter Craniofacial Awareness Month, I have been reflecting on some of the things that make being different really cool. I couldn’t narrow it down to just one thing, so I have created a list of the top 5 things that I think are really cool about being different.

#5: We can face challenges with confidence.
Being different has taught me to adapt to my differences and overcome challenges with confidence. Everyone faces challenges in life, but being different has caused me to face challenges on a more regular basis. For some people who haven’t been challenged often it can be difficult to navigate those challenges. For those of us who are different and have faced many challenges on a day to day basis, we have the confidence to face any challenge placed before us.

#4: We have the chance to educate those around us.
Being different is scary and confusing to some people at face value. They are afraid to ask questions or even get to know someone who is different. We have the amazing opportunity to educate those around us that difference does not equal bad or scary. I remember one day working at a clinic and walking past this boy who commented “Eww look at her hands”. At this point I had two choices, be offended and upset, or stop and talk to the boy about why my hands were different and show him that it was really no big deal. It was neat to watch his attitude change when he realized that I was really the same as him.

#3: We can relate to each other regardless of language barriers.
In 2008 I had the amazing privilege of traveling to Morocco with Operation Smile as the surgical photographer. I had always wanted to travel with Operation Smile because of the work they do repairing cleft lips and palates, both of which I have had done. While on the trip I was able to relate to the families that were there for surgery because they could tell that I had also had the surgeries. Despite the language barrier, we were able to form a bond and understand each other in a way that other mission team members were unable to.

#2: It allows us to be thankful for the little things in life.
I believe that you can be thankful for the little things in life without being different, but I also think that going through all sorts of challenges in life helps you to appreciate the little things.  When you go through life facing potentially life altering surgeries and challenges, you realize quickly what is most important in life. While we still enjoy all the gadgets and material things, we understand that those things really don’t mean anything in the end, but that the relationships we have with our God, family, and friends are the most important things in life.

#1: We have the ability to inspire and give hope.

The absolute coolest thing about being different is our ability to inspire and give hope to those around us. We can give hope to other families that are just beginning their journey with a child facing difficult life challenges, and we can inspire those around us by overcoming all the obstacles our difference puts in front of us. We can inspire others by showing them that no matter what life puts in front of us, we will walk through it with confidence. Our ability to overcome tough circumstances shows others that they too can overcome trials in their life.

--Maria Summers, Guest Blogger