Thursday, May 30, 2013

Becoming Body Positive

I know this will shock no one, but I love blogs.

(Before reading on, I wanted to disclose that the links in this post may be PG-13.  Additionally, this post does not represent the views of CCA, only me. Okay, you're free to continue.)

One of my favorite types of blogs recently is "body positive" blogs, also called fat acceptance blogs. If you're wondering what the heck a body positive blog is, let me suggest you check out "Pudgy & Peachy" or "The Militant Baker." 

I started following these blogs for the fashion because these women (and men) have superb style and are excellent photographers. The more posts I read, though, the more I loved the message. These bloggers are fighting the shame and stigma that comes from being overweight by wearing what they want, when they want. People who are larger or overweight are constantly marginalized, misrepresented, and even mistrusted. People assume they are all lazy or unhealthy, which is certainly not the case (obsv, right?!). And these bloggers aren't sweet, meek activists. They are aggressive in their approach and refuse to let critics haters define their bodies. Their insistence on bodily sovereignty and commitment to loving themselves in the face of their loudest critics is inspiring. Their willingness to be so open slowly, but surely, chips away at the rigid definition of beauty in our dominant culture. 

But the best part about body positive blogs for me is that they share the experience of being judged on looks alone. How many times has someone assumed you were incapable or unintelligent because of your looks (or your wavering self-esteem)? Too many, I'm sure. How many times has someone commented on your ability to do or not do something based on their assumption of your physical abilities? Probably, more than you'd like. But like body positive activists, let's fight the culture that says looking different - whether it is weight, a facial difference, or a disability - isn't beautiful, sexy, and worthy-of-super-self-love.

you wouldn't tell a flower
that it is too oddly shaped 
to be given to someone you love.

you wouldn't tell the ocean that 
its waves are too curvy to
kiss the shoreline.

and you wouldn't tell the moon 
that it is too round to illuminate
even the darkest of nights.

so why would you tell 
someone that they are too
big to be beautiful?


Friday, May 24, 2013

Friday Remix: The Dyson's Story

Today's Post is a "Friday Remix." Friday Remix is the day we repost favorite blogs, articles, and stories that we've collected and found applicable to our readers.

Deena Dyson describes her family's first experience at the Annual Retreat. Since the images are a bit small below, you can access a larger version of the story here.

Thursday, May 23, 2013

CCA Showcase: Joe Brooks

Joe Brooks, one of our guest bloggers, came up with a great idea to run a blog series focusing on the skills and talents our CCA Family. The series will focus on short "vlogs" - video blogs - of our CCA families showcasing their talents. These VLOGs are not only fun and exciting, but they also remind others that we are much more than our craniofacial syndromes or anomalies. Furthermore, we hope this series proves that we should never underestimate our abilities and potential. Just like our motto says, "Beyond the face is a heart," and we hope these videos inspire you to challenge the ideas of what you think is achievable in both your own life and the lives of those who are born with a difference.

Our first CCA Showcase is Joe, a percussionist, playing a fun tune on the marimba.
Thank you for sharing your talents with us, Joe!

If you'd like to share a video of your CCA superstar, please email [email protected] with the subject "CCA Showcase." We'll take submissions on a rolling basis and post appropriate videos as space allows.

Friday, May 17, 2013

"What's wrong with your eyes?"

Please welcome our first "Guest Blogger", Sabrina!

Hi, my name is Sabrina and I'm 22 years old. I was born with Pfeiffer Syndrome (Type 1) as well as a congenital heart defect. I have had 21 surgeries. I'm currently in University, majoring in Health Psychology with a minor in Political Science. I heard about CCA when I was 15, and attended my first retreat in Nashville, TN. It was an incredible experience!! I loved meeting others who have been through the same things as me. Overall I have gone to 5 retreats and enjoyed every second of it. I highly recommend that every family should make it to at least one retreat. It's an amazing event that you will never forget. It not only benefits the child, but the whole family as well!

We are so happy that she has offered to share her insight on the
CCA Kids Blog and we hope you enjoy this new perspective.

When I went out the other night, I got to meet some new people. After being introduced to one woman, she later asked my mom “is she blind?” My mom was shocked, came to my defence and said “there's nothing wrong with her eyes, she has 20/20 vision!”

Normally, a comment like that would have upset me. However, earlier that night, I was complimented many times on how beautiful I was and how nice my dress was. Those kind words meant a lot to me and really made me feel confident. So when I heard about the woman who asked if I was ‘blind’, it just amazed me how ignorant some people can be. I have gotten many negative comments about my eyes over the years. I had hoped they would stop as I got older, but unfortunately, there will always be people out there who just don’t understand.

Being born with a craniofacial disorder presents many challenges for a child, which will continue on throughout adulthood. Even though it was tough going through so many medical procedures, I always felt that ‘social situations’ were more difficult to deal with. I’m not what society considers “normal” and I felt that judgment at a very young age when I noticed kids and adults staring at me. To be surrounded in a world where outer beauty is portrayed as the most important thing, it’s difficult not to let it get to you.

How do you deal with that? How do you deal with trying to blend in with society, when they always make you feel like you stand out? The key is to find people who will love you and accept you just the way you are. I am so fortunate to have the loving support of my close friends and family. When I feel loved, it is easier not to get upset when I’m judged by strangers. Though, of course, everyone has their ‘bad days’. Sometimes, I do get very agitated. If I’ve already had a long day and I’m tired, the last thing I want to deal with is judgemental stares when I’m out in a public place.

Living in a world that is so fixated on self image and outer beauty, I grew up thinking that I would never truly be accepted for who I am. Naturally, every time I met someone new, I would automatically wonder “do they notice something different about me? Do they think I look weird?” Even nowadays, I try not to over think it, but old habits are hard to break. When I went to my job interview in January, I was actually afraid that they wouldn’t hire me because of the way I look. Of course it may seem crazy to think like that, but when you’ve grown up going through situations where people make fun of you, doubt you, and talk down to you; it messes with your self-esteem.

Dealing with stares and judgement is always hardest when you’re a kid. When I got teased, I felt ‘ugly’. I would dream of having a different face. I wanted to be like the ‘pretty’ girls. I thought that I had to be like everyone else in order to feel accepted. It has been a long and tiring journey, but I am finally at a place now where I am happy with the way that I look. I don’t focus so much on it anymore because it’s what’s on the INSIDE that counts.

Would social situations be easier if I didn’t have Pfeiffer Syndrome? Of course. But this is the card I was dealt and I can’t change that. When you can’t change something, you have to change your attitude about it. In junior high, I was surrounded by new students who constantly stared at me as I’d walk down the halls. Eventually, I got tired of being stared at, so I went to the principal to see if I could do something about it. She suggested that I go in front of every class and talk about Pfeiffer Syndrome. I was afraid of how they’d react, but it turned out to be a success! I could see that they weren’t being mean, they were actually just curious because I got asked many questions. The next day, instead of getting stared at, I got waved at! I made so many new friends and I finally felt comfortable at school.

As much as we’d like to prevent it, there will always be ignorance in the world. I will never be able to ‘blend in’ and not get stared at. (Although I will admit that I sometimes ‘hide’ behind my sunglasses so no one can see my eyes). Instead of getting angry at people who stare and make comments, I just feel sorry for them. When I look in the mirror, I just see “me” and I’m fine with it. I don’t think there’s anything ‘different’ about me, because we are ALL different. On those bad days, I ask my mom “what is so different about my eyes? What do they see??” It does frustrate me sometimes because I can't understand what people see in me since we're all different in our own way.

In my first semester at University, I was eating lunch with a guy that I had just met, who lived in the same residence as me. He said “um, do you mind if I ask you a question? Don’t take this the wrong way but... what’s wrong with your eyes?” My immediate reaction was “well, I was born this way!”, because really, what other explanation is there? I decided not to let that situation bring me down because a part of me knew that he didn’t mean to offend me. He just noticed something ‘different’ and was curious about it. This is where it’s good to spread awareness and to pass on knowledge about craniofacial syndromes.

As life goes on, there will always be times where we have to face a difficult social situation and we may feel uncomfortable at the moment, but we have to get past it and move on. Life is too short to focus on negativity. The important thing is to love and accept yourself, and with that frame of mind, no one can bring you down. I have been working on loving myself and embracing my unique side. I surround myself with people who believe in me and encourage me to follow my dreams. I know I can make a difference in this world. I'm going to graduate from University, and get a job where I can help others. I won't let anyone stop me from accomplishing my goals.

Always remember:
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind” – Dr. Seuss

Thursday, May 16, 2013

The "Priceless" Value of Retreat

The “Priceless” Value of the Retreat
The CCA Annual Family Retreat is the stand-out event of the year for Children’s Craniofacial Association and for many individuals, the highlight of their year.

For my own family, it became our yearly family vacation.  What a wonderful way to see so many different places across this beautiful nation, stay in expensive hotels at a major discount, have planned meals and activities for the kids and most importantly have a whole weekend to interact and share support with others who know what your family experiences.

The actual cost to CCA to hold this year’s retreat is just about $100,000 which makes it our most expensive program.  Our families have told us that the retreat is the most valuable program we provide, and therefore we work hard to raise the funds to ensure its continuation. Hotels and resorts that once gave us free passes to amusement parks, rent-free ballrooms & complimentary breakfasts are less giving now or have narrowed their scope to just one or two specific causes, since there’s a much larger pool of other children’s groups, causes, nonprofits, churches and charities asking for the same discounts and amenities.

Indeed, that’s not the only thing that has changed in the twenty-three years since the first retreat.  Among others, CCA has grown quite a bit with many more families attending and there’s a much larger age variance in our CCA kids, since a whole generation has reached adulthood and some are themselves parents bringing their own children.

All this makes it exceedingly tougher to find a great place large enough to hold everyone, at a good price, in a fun location. Yet CCA Program Director, Annie Reeves, and her committee keeps the hits coming and once again families will be paying only about half the going rate for the rooms at the Omni Resort in Orlando this June!  The registration fee of $100 per family is a bargain as well.  (That doesn’t even cover the custom retreat t-shirts we’ll all be sporting but it’s a non-refundable commitment to keep folks from changing their minds after the head count has already gone in for all the food.) 

Robbie & Zach B. at the first Retreat in Orlando, 1991.
Although families have to pay their way there, CCA provides almost all meals to keep your costs down once you arrive.   And as much as a value as it is for your dollar, the intangibles you’ll come away with are “priceless.”

The experience is life-changing for everyone in the family, with “family” being a key word here. Whatever relatives you had when you arrived, you will leave with an extended family whose names and contact info will be listed in your program should you need to reach out to them.

You’ll have a chance to share similar experiences, ideas and problems that you thought no one else on Earth would ever understand.  Every member of the family may make lifelong friends in their counterparts from other families.  And these folks will remain with you in your heart, always.   That goes for Moms, Dads, and siblings as well as your CCA kid. 

My own CCA kid, Robbie, grew up getting to know many people, CCA families he saw year after year at the retreats.  I am confident if he ever found himself lost in a city where one of these families resides, he could call on any of them, like he would a blood relative, for help.

When Robbie and I were with the original ten families that inspired the retreat, our group toured the city we were in together, and nobody seemed to mind the staring from strangers because for the first time we were many and none of us felt singled out or that it was only our child they were looking at…it gave us a sense of power…we had power in our numbers.

Because we’re a majority like that at the retreat instead of the minority that we are at home, we can let our hair down and relax together in that same carefree way.

But, all the relaxing, wonderful memories, smiles and warm fuzzy feelings you and your family will derive from attending are just the frosting on the cake.  What your “affected” child will come away with will “take the cake” and of course your CCA Kid is the main ingredient here. 

What I know personally and what we’ve all witnessed for the last twenty-two retreats is that the retreat makes our kids feel good about themselves, each in their own way.  What more  “priceless” value could you put on something than the smile, the new or renewed self-assurance, true happiness, and what you hear in your child’s remarks once you return home?

This is our most difficult task…describing the retreat experience to anyone who hasn’t been there.  I can only tell you it can be magical.  I will never forget my own child’s words upon returning home each year, “Mom, I’m so lucky.”

Robbie getting his hair cut by retreat families in 2012.

Zach B., now a ballroom dancer/instructor, giving CCA  
Executive Director, Char Smith, a twirl on the dance floor! 

- Jill
Guest Blogger and CCA Development Director, Jill Patterson

Sunday, May 12, 2013

Happy Mother's Day

Thank you, Moms, "Moms," Grandmas, Aunts, Sisters, and role models everywhere.
“Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be.” 
― Joan RyanThe Water Giver: The Story of a Mother, a Son, and Their Second Chance

Friday, May 10, 2013

Book Review & Giveaway (closed) -- "Uncommon Beauty: Crisis Parenting from Day One"

Today we have a special book review, by Taryn Skees of More Skees Please and it comes with a chance to win in our Mother's Day Book Giveaway! Thanks everyone, the giveaway is closed! Stay tuned for another giveaway soon.

How to enter:
  1. "Like" the CCA Kids Blog Facebook page (if you haven't already).*
  2. Comment on this post telling us you "Like" us. Make sure you do NOT comment Anonymously! 
  3. Stay tuned. One winner will be selected on May 31, 2013.

Uncommon Beauty
When Aiden was born in 2008 with Apert syndrome, it came as a surprise to us. We had no indication that anything was wrong during my pregnancy - the differences with his hands and feet were never detected, and his head growth was within normal range. As you can imagine, the diagnosis hit us like a ton of bricks. During his two week stay in the NICU we went through a roller coaster of emotions as we tried to understand and accept the life we had in front of us. 

Once Aiden was ready to come home with us, we were given a list of doctor's appointments and follow-up visits that had been made on our behalf. We showed up for each one scared and confused. We weren't sure we were asking the right questions, didn't know if what we were hearing from each specialist was our only option and began to doubt ourselves as parents. It became overwhelming very quickly.

I remember going to the book store and scouring the shelves for something - anything - that might be able to guide us in this journey with a child with special medical needs. I knew there was probably nothing related to Apert syndrome because it was so rare, but anything that could lay out a road map to help us navigate the world of doctors visits, insurance issues and support options would have been incredibly helpful. While I did find a wonderful memoir about a mother and her son with Apert syndrome (Babyface: A Story of Heart and Bones) it quickly became apparent that the book I was looking for did not exist.

For the next several months I took careful notes at every appointment. I created a notebook - and eventually a binder - full of questions and answers related to Aiden's care. I decided that if a book didn't exist then I would write one to fill the void, as I was certain I must not have been the only one seeking the same.

Unfortunately, the time that all of Aiden's medical care required during those first 2-3 years kept pushing my book writing lower on my priority list. So you can imagine how extremely pleased I was when this past year, a new resource was published that fulfilled exactly what I wish I had as a new parent of a special needs child. 

I came across an article introducing Margaret Meder's new book Uncommon Beauty: Crisis Parenting from Day One and immediately contacted her to find out how I could get a copy. Even though I was 4 years into our journey, I just had to read it - I knew it would still offer value to me in some way - and it most certainly did.

While it just so happens that the author's son also has Apert syndrome, the book applies across the board. Uncommon Beauty is a well-organized account of the major aspects involved with caring for a child with special medical needs. Ms. Meder beautifully weaves personal experiences throughout however it reads less like a memoir and more like a guidebook with tips and suggestions for every junction along her journey. 

Reading Uncommon Beauty brought tears to my eyes. Not only because I felt as if I was realizing my dreams in the pages of this wonderful book, but because I pictured the next scared parent scouring the shelves at the book store, searching for that one resource that might help make things a little easier. I just know this is going to be an amazing gift for any family who is unexpectedly thrust into a very scary world. 

From one special needs parent to another, I want to personally thank Ms. Meder for writing Uncommon Beauty...and for allowing me to cross off one of the items on my always growing "to-do" list. :)

If you would like to win a signed copy of Uncommon Beauty: Crisis Parenting from Day One leave a comment here on the blog and be sure to "like" CCAKids Blog on Facebook! One winner will be chosen on May 31, 3103.



*If you don't have a Facebook account, you can simply comment on this blog post.

Monday, May 6, 2013

Nurse in the Spotlight: Maria Summers

Today we have a Guest Post by Maria Summers, who recently commented on the CCA Blog. When we read her story, we thought she would be a perfect contributor to kick off Nurses Week, May 6-12, 2013.

Hi, my name is Maria Summers and I am 25 years old and have Nager Syndrome. While I have never let this diagnosis define me as a person, it has helped to shape my life and led me to become the person I am today. For those of you who don’t know about Nager Syndrome it is a condition in which there are multiple craniofacial, gastrointestinal, musculoskeletal, and respiratory issues. When I was born I had a bilateral cleft lip and palate, I was missing the radius in both of my arms causing me to only have four fingers on each hand, I don’t have much of a jaw line, and I had a lot of reflux and eating problems. Some of these led to other conditions like chronic ear infections that have led to hearing loss, and the need for a tracheostomy to help me breathe and a feeding tube for 2 years. In total I have had over 21 surgeries, and still have 2 more to go through in the next year. While all of this can sound extremely overwhelming, and at times it was, it has also been a blessing in disguise. Because of the things I have been through, and the many medical professionals I have met throughout my time in the hospitals, I have found my calling to be a nurse.  I am currently in nursing school and will graduate on December 19, 2013. I plan to work with children, and to incorporate mission work into my career as a nurse.

Mission Trip with Operation Smile to Morocco in June of 2008
There are two defining reasons that I feel called to be a nurse. The first reason I feel called to be a nurse is my faith. When I was younger I struggled a lot with questions of “Why me?”, “Why do I have to go through all these medical problems?”. What I came to realize and appreciate is that I may never fully know the reason behind why I was born this way, but that God has a plan for me and Nager Syndrome needed to be a part of it. As I have grown I am starting to see part of the reason I was born with this condition. I believe I was born with this syndrome so that I could be a better nurse than if I weren’t born with Nager Syndrome. Could I have been a nurse without having to go through all of this? Yes, but because of all I have been through, I can relate to my patients in a way that many of my fellow nurses cannot.  When I treat someone, especially a child, who is struggling with a medical condition and is upset about having to be in the hospital, I am able to understand, to a degree, what they are going through. I am able to empathize and sympathize with my patients in ways that I know I would not be able to do if I never had my experiences growing up with Nager Syndrome. Because of my condition and all that I have been through I have great compassion for and a love for helping others.

The second reason has a little bit of a story behind it, and it involves a doctor that my mom encountered when I was just a baby. My diagnosis was one in which no one really knew anything about, and therefore did not know what my future would hold. While I can appreciate that, what this one doctor said to my parents I cannot appreciate. This doctor told my mom “not to have any hope for” me. This story has stuck with me ever since the first time my mom told it to me because it has been a source of determination for me. I have strived to prove this doctor, and any other that may have been thinking the same thing, wrong. This statement has helped develop my call to be a nurse because I want to provide hope to other families who may feel hopeless at times. I want to be able to look at a mother and say we may not know what is in store for your child, but there is always hope.

I am thoroughly looking forward to graduating in the next couple of months and starting my career as a nurse. I am excited to see what my future holds as far as the people I am going to meet and help along the way. I have had the opportunity to travel on two missions, one with my nursing school this past May, and one with Operation Smile. Both trips solidified in me my love for nursing, but I think the trip with Operation Smile was the most impactful. On this trip I was able to participate in changing the lives of over 160 children and adults with various craniofacial deformities. Having the ability and opportunity to reach out to people who do not have the same medical services that we have here in America was life changing and is what I look forward to most because I have chosen nursing as my career.

Sunday, May 5, 2013

Grateful Sunday

We talk a lot about reading on our CCA blog and one reason reading is so important is because when you're born "different" you inherit a different perspective on life, whether it's spending weeks of your childhood in a hospital or seeing how other kids, who are perhaps less outspoken, get treated in Special Ed classes. If you're like me, growing up, I often had time alone to simply observe. Sometimes those observations are horrifying, but many times they're truly heartwarming.

I believe writers are society's observers and they also see the world from a "different" perspective. I'm so grateful for people who have the courage to write down their thoughts and share their experiences, so others may find knowledge, encouragement, or just enough strength to say, "Wow, humans have been struggling with these feelings for eons. I don't feel so alone all of the sudden."

One of my favorite writers is Kurt Vonnegut. Vonnegut was modern and witty, pained but yet positive. He wrote about war and science fiction, politics and fantasy. I love a great many of his quotations and works, but this one recently struck a chord. You could say it's another (maybe slightly more emphatic) version of "Choose Kind." In his own words, Vonnegut wrote,

Hello babies. Welcome to Earth. It's hot in the summer and cold in the winter.
It's round and wet and crowded. On the outside, babies, you've got a hundred years here. 
There's only one rule that I know of, babies-"Dang* it, you've got to be kind.”

In my words? Life is long and hot and itchy. Kindness is a cool, refreshing salve. Lather it on before you go out into the world.

Rest easy today, friends, and practice kindness.

*only slightly edited

Thursday, May 2, 2013

Memories of Portugal

Something many people don't know about me is that I spent the summer of 1988 in Portugal.  Here are some thoughts from that summer so long ago when I was just 19 years old.
My memories of Figueira da Foz (a small city located in the center of Portugal) is highlighted by the holding of a firefly on a hot July evening.  I had walked through a forest on the upper East side of the town when I happened upon a firefly glowing in the dark.  Being from the Western side of the United States, I had never seen one and was particularly intrigued by the lighting of the bug.  That time has a mystical quality to it as the pressures of the day seemed to disappear while my attention was focused on the small lantern carrying insect.  It is a warm memory.
It was a hot day in June and without warning the rains began to pour.  I hurried back to my apartment and watched the incredible lightning flashes which streaked across the sky.  Like a war in the heavens the bright mid day sky lit up.  Like cymbals at full decibel in a symphony the clapping was murderous to the ears.  What else could I do but pull out a Portuguese version of Monopoly and play for the rest of the day?
It seemed strange looking at the Atlantic Ocean from the "other" side facing West towards the United States.  I had never seen the sun so orange or so large as when it settled behind the ocean on that clear June night.  I sat eating "Amanhas" an ice cream soda which means "tomorrow" in English.  "There across the ocean lies home I thought, 6000 miles away."

Wednesday, May 1, 2013

Mother's Day Gift Guide

Want, Need, Wear, Read.

WNWR is a gift giving philosophy born out of the blogosphere (as far as I can tell) that focuses on simplifying gift giving. It's usually targeted at children during the winter holidays to combat the endless mania around holiday shopping. It's simple ... when giving, get your loved one something they want, something they need, something they can wear, and something to read.

It's a lovely philosophy and it also helps me when trying to pick out gifts: I may not buy in all four categories for "smaller" holidays like Mother's Day, but I consider each and then choose the perfect gift. Here are some ideas for the most special women in our lives ... our Mothers.

Want. Need. Wear. Read & Read.

WANT. These retro-inspired pencils are perfect for Mom's desk: Useful yet stylish and polished. They also score major points because they are stamped with one of CCA's mottos: "Be Kind." Doesn't this pencil sound just like what your mom would say?

NEED. Based on what other mothers have related to me, sometimes the best gift is a really nice version of something totally practical. Every summer, you'll never hear a complaint from Mom as she slathers a thick layer of Walgreens SPF 50 on her skin, but Neutrogena's UltraSheer Dry Touch sunscreen is really a modern miracle. Neutrogena's silky texture is perfect for faces and sensitive skin and it just feels so darn nice going on ... it's not your average sticky, goopy sunscreen. So, even if you're on a tight budget you can still get something for Mom that carries just a touch of everyday luxury.

WEAR. These sandals are classic and carefree. Just like the coming days of summer! Mamacita can wear these flats with sundresses, jeans, shorts, capris and more. (Extra Brownie Points: Get her a gift certificate for a pedicure to go with these snappy sandals!) 

READ (READ). We love reading here at CCA! I have two book suggestions, depending on the kind of Mama you have. If your Mom listens to NPR, likes stand-up comedy, craft beer and has a passion for literature, I suggest Alissa Nutting's Unclean Jobs for Women and Girls. It's a wonderfully kooky collection of short stories that pack a literary punch. On the other hand, if your Dear Maman prefers dinner parties, baking treats, and abundant gardens, I recommend Jenny Rosenstrach's Dinner: A Love Story. Jenny writes a wonderful blog by the same name, so take a look... you can imagine the goodness contained in her book. 

But whatever you get for your sweet mamas on Mother's Day ... just remember to tell them how amazingly fabulous they are and how you wouldn't be you without her.