Thursday, July 26, 2012

It Takes a Village

We often hear the term "It takes a village to raise a child".  These words have never rung more true than they have in the last 7.5 months.  In the early days after Mary Cate was born I remember the doctors asking me over and over how we were doing and how we would get through this??  I remember my first response was always ...

"We have the most amazing support network known to man, and THAT is how we will get through this".  We are blessed with an abundance of friends and family, but we are also very blessed to live in one of the most supportive communities on the planet!  People often ask how our family has taken so much in and taken it in stride, and, honestly, it has been with the support of all of YOU!

From day one I knew my next mission in life would be to raise and spread awareness of Apert Syndrome.  I knew my daughter had started her life with many obstacles to overcome, so why not make it easier for her?  Why not show her off?  Why not parade her around?  Why not make her life normal?  Why not educate myself, my family, friends, community and the world?  Why not let everyone fall in love with My Mary Cate and know who she is, so that as she lives her life everyone will already know that she is Mary Cate.  She has Apert Syndrome, she does look different, but she is still a beautiful, happy and sweet little girl!  The less questions for her as she grows up the easier it will be to live her life normally.

This is my passion, my job, and my number one love.  I want to share the wealth!  I wholeheartedly believe that people are inherently good, and that ignorance comes from lack of knowledge.  From logos, to campaigns, to ice cream socials, to bake sales, to bar crawls, to snow cone stands, to "Team MC bows"-- Love is all around us, and we hope all of you are fortunate enough to feel the same!

article from a campaign called "Changing the Face of Beauty".  This was featured in Chicago Special Parent magazine's Summer 2011 edition and was recently featured on Maria Shriver's blog.

We are rare.  CCA families are few and far between, but with supporting each other and helping spread the word we will take on the world and show the world the loves of our lives!


Sunday, July 22, 2012

I am Grateful for Childhood Memories

Our "Grateful Sunday" series is back
with guest blogger Stephen Wright.

It was the year of 1975, and I was in the second grade.  That was when I was elected by my classmates at South Elementary in small town Cedar City, Utah to play the leading role in the "Nutcracker Suite."  The two nominees were myself and the mayor's son. Even though I won the role, the mayor's wife was still gracious to glue my props on as needed.  Eighteen lines was a great responsibility for a seven-year old, and I practiced faithfully each night after school.  Fan mail was exciting to receive!  The other children in the elementary wrote their critiques of the play and one boy questioned why I had a beard at times and only a moustache at others.

To this day, thirty five years later, when I see people who were in that play, we refer to each other by the names of characters in the play: the Mouse King, Fritz, Clara, and Pipsqueak will always be remembered.

       Mrs. Melling was my teacher that year.  She took me under her wing and bought me presents (for my surgery that year).  She even took me for a ride to get a Cherry Tab, the drink of the 70's.  Mrs. Melling truly understood my special circumstances of living with Crouzon's, and she made sure that I was treated with great kindness.

Stephen Wright 

Thursday, July 19, 2012

Say Cheese: How I Learned to Love Bad Photos of Myself

One of the hardest things growing up for me was school pictures. Inevitably, I would wake up late on picture day and drop jelly on my shirt at breakfast, or some well-meaning teacher would decide to "smooth" my hair with one of those black plastic combs-- much more suited to Donald Trump's hair than a girl with thick, coarse, wavy locks. I hated sitting on that stool and posing for the photo, but even more so, I dreaded the day the pictures came in. I always begged my teachers to allow me to pass them out so I could snatch mine and that 8x10 clear envelope could be immediately turned over, hidden, and stuffed in my backpack. Being teacher's pet can come in handy, but of course, a couple of times Rusty* or Kyle* was selected to pass out photos and, knowing that it would get under my skin, they would tease me by holding up my picture envelope and making silly comments about the oversized bow in my hair, the growing gap between my teeth or my "fat" chin. Don't get me wrong, these kids were not intentionally trying to bully me, and I was fortunate to grow up in the supportive and caring environment I did.  But, the lifelong dread and anxiety I felt around photography grew based on small experiences like school pictures.

As I got older, I avoided getting in group shots as a teenager. My friends and I, like most teenage girls, just loved dressing up in prom dresses at department stores and taking pictures, or putting on makeup at sleepovers and having fashion shows, and plastering our lockers with scrapbook-worthy photo creations. I hated my photos so much that I would always try to stay out of them or worse, stage a poorly planned "distraction" in the photo. I have tons of pictures where I've "casually" made sure my chin was covered up: playing cards fanned over my face, scarves wrapped up beyond my neck, books in front of my face ... you get the idea. 

Let's all just take a minute to laugh at how ill advised these plans were. 

Haha, I love old photos!

Now, I will attempt to explain how I overcame my photo phobia. 
  1. Let Time Pass. If you're a teen reading this, you just have to trust me on this one: nothing can explain how looking back at your younger self erases all flaws. When you see a photo of yourself now, in the present, you always focus on the negatives. Your flaws jump out first. But looking back, I see myself so differently. I see youth, silliness and sweetness and I remember the person that I was at that age. I see awkwardness, too, but it is much more endearing now than embarrassing.
  2. Reframe the purpose of the photo. Since time and age don't help you in the present, when you take photos now, try to remember that you're not selling a product, convincing someone to fall in love with you or making your Facebook friends jealous (okay, maybe that last one just a little). You are capturing a memory. When you reframe what a photo is for, you can look it at with less critical eyes. You can understand that you don't need your photos to be perfect; you want them to tell a story and how you look is part of your story. I think this peace with photography came to me around my late high school and college years. Being in clubs and organizations required a lot of posing for group shots and I told myself, "Sure, I don't look perfect, but I want to remember the activities I did! I want a record of my participation!" I want to be able to peek back into "the best years of my life" with some level of reality. I stopped covering my face or insisting on being the one behind the camera. I relaxed. I realized that I may not love how I look in every photo, but I still wanted those memories. And the funny thing is, when I realized a tangible record of a memory was what I was after, the overly critical eye to how I looked in the photos faded.
  3. Take a lot of pictures, so you have a lot to choose from. This is pretty simple. When you're taking pictures, take an abundance! I could never figure out why I really liked how I looked in some photos but felt like others were a complete misrepresentation of me. So, I just started taking more of the same shot when I was taking pictures. Sadly, I didn't end up taking pictures more often but I did manage to take more pictures of each "Kodak moment."
  4. After you start taking more photos of yourself and actually getting in front of the camera, you learn what angles flatter your features (or minimize your perceived flaws) best. Examine photos that you like of yourself and take note of the way you stand and position your head. I am not a diva, but I do have a "good side" that I actively try to position myself in when someone whips out a camera or phone. I try to be nonchalant and avoid inconveniencing a crowd, but subtle movements, like holding my shoulders back or raising my chin to a certain level, improves my photos and my reaction to them significantly. Also, I'm fortunate to have a husband who is not afraid to say, "Hey, let's switch sides," when posing with friends and family. Tell a family member or a friend about your "good side" and let them remind you to get in position when the paparazzi lights are flashing. A good photo buddy helps you speak up when you feel insecure. The way I see it, it is all about confidence. When you look good in photos, you feel proud and a little smizing never hurts, amirite Tyra fans?
  5. Let it go! In the end, you just have to be willing to say, "This is me. I love me." It is a process for sure because every time an unflattering picture of me is tagged on Facebook or (even worse) printed in a professional directory, I cringe a little in the moment. Then, I try to I realize the feeling is just disappointment and then I let it go. I have found that as time goes by, it is just not that important. Most people looking at the photos are probably looking for their picture and the ones that aren't, well, they don't matter. I know that beyond the picture is a person; beyond the face is a heart. A bad picture here and there is a part of life. And if you're able to let the expectations of how you "should" look go, you'll be much happier and less anxious about photography.
I was inspired to write this post after recently being in two weddings. OMG, I am just now recovering from strained smile muscles! When the photos came out, was I happy with all of them? No, of course not. But, I took myself through the steps above and then walked away from the photos. When I returned to them for another look, I saw a much different story. I didn't see umpteen unflattering pictures of myself ... I saw a love story, a wedding, a celebration of friends that I was honored to play a role in. Photo anxiety is real for everyone with insecurities, so what strategies have you developed to cope with the camera?


*Names changed. 

Sunday, July 8, 2012

Grateful for Good People

In the beginning, one of the things we were most concerned about was the comments, the stares, the lack of acceptance of our little guy.

Four years later, we have had our faith restored. Sure, we get our fair share of comments and stares, but when we weigh it all out, for every negative encounter we've experienced, we've had a dozen good ones.

Maybe it's Aiden's amazing little smile or vibrant personality that disarms people. Or perhaps I've mastered the "I'd love to answer any questions you might have" expression when I make eye contact with someone who has just turned a curious eye on my son. And sometimes I just have to remember to not immediately get defensive, putting a negative spin on what may not necessarily be a negative encounter.

Whatever it may be, I have been happy with the number of people - both kids and adults - who:
1. Step up and ask questions or start a simple friendly conversation about Aiden.
2. Completely overlook Aiden's differences, including him in activities without hesitation.
3. Cautiously include him, then realize he's just like every other kid and continue playing like it's no big deal.

Today, I'm grateful for the parents who teach their children to be accepting of EVERYONE, the kids who include Aiden despite him looking different, and the adults who understand that starting a conversation with me about my son is something I welcome.

If everyone could learn to be a bit more accepting of everyone with physical and developmental differences, this world would be a better place for sure.

Monday, July 2, 2012

Grateful for the Weekend

Thank you Erica for the latest piece in our Grateful Sunday series...I apologize for the late post!


I'm a weekend warrior, for sure. Without the weekend, I am confident that my house would never get cleaned, the grocery shopping would never get done, and I certainly never would have completed my piled-up economics homework.

However, this weekend, I got to take a few hours out of completing the to-do list to hike a trail in the Mississippi woods with my sweet husband and his brother. As silly as it sounds, it was so nice to venture out into a place where there were no cars, no shopping malls, and only our conversation and curiosity to attend to (we were hunting a historic settlement). 

Beautiful feather we found on the trail
Historical marker for the ghost town in Amory, MS

I'm grateful for time to stop the hustle and bustle and listen to the sounds of nature and explore a quiet path. Despite the oppressive heat, it was fun break from our busy schedules. This summer, I encourage you take some time to get outdoors with friends and family (just wear your sunscreen!). Summer relaxation, no matter how brief, is quite rejuvenating for our minds, bodies and souls.

Happy July, everyone!