"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

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

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 Ryan, The Water Giver: The Story of a Mother, a Son, and Their Second Chance

Book Review & Giveaway -- "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!

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.

_____________________.

-Taryn

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

Happy Nurses Week!