Friday, December 14, 2012

Gift Guide for Kids, Tweens & Teens

So, if you’re reading this and still wondering what to get the kid, tween or teen in your life, we’re clearly in the procrastination boat together. This blog may help you find just the right present and the best part about this gift guide is that all items (except those from CCA) can be purchased on Amazon, which offers super speedy shipping! For all CCA items, please order by December 18 for holiday delivery! Now, on Dasher and Dancer...
Gift Idea #1: Out of this World
This gift set was what I chose for my nephew, who has a budding interest in all things science. This year, since I’m from the “Rocket City” of Huntsville, Alabama and he’s in Texas, I thought it might be fun to go with a space theme. I snagged a NASA sticker which served as my inspiration and built my gifts from there. The Hubble photo book is truly a sight to see and a gift for the whole family. My nephew will hopefully enjoy the photos now and as he gets older, he will be able to read and understand the content of the book. The other items are just the right mix of silly fun and educational exploration. 

Gift Idea #2: The Adventurous Explorer 
This gift set was selected for my teenage niece. She is quite the well-traveled young woman and has a sense of adventure that inspires me. From acting camp in California to diplomacy studies in DC, she is going places in life. I hope the stunning images in the photo book will nurture her curiosity and incite her eagerness to explore cultures, cities, and ideas. The “Portable Life Museum” journal provides prompts for making your everyday life an adventure. Suggestions in the journal include sitting quietly in busy place for an hour and recording all the sounds you hear and starting a collection of found objects gathered on your daily walk to school. Finally, the map poster is great fun for keeping a record of her travels ... and will undoubtedly serve as a cool conversation starter in her dorm when she heads to college in a few years. 

Gift Idea #3: The Creative Crafter
I have another sweet niece who is so much like me when I was young. She can sit for hours creating her own fashion magazine, complete with editorial content, hand-drawn illustrations and a slick cover and binding! She loves to draw, paint, craft, and create. Her gift was a little more “handmade,” of course, but the basics can still be purchased online. The books are filled with fun and simple craft how-to’s and the stickers sneak in some art history. For the budding artist in your life, I highly recommend these items from Amazon with the addition of a personally curated Craft Tote: Just fill a plastic bin to the brim with felt, construction paper, markers, gems, feathers and stickers, Aileen’s Tacky Glue and a good pair of scissors. 

Gift Idea #4: For Every Kid on Your List
My favorite gifts to give are gifts that give back. This year, every kid on your list can get a CCA Kids T-shirt and a copy of Wonder. The message of Wonder is something CCA wholeheartedly supports and we’re proud to sell copies from the home office for $12. Don’t forget to order by December 18 at 5pm CST to ensure holiday delivery. Support CCA and bring a smile to your special kid’s face this holiday! 

After you’ve ordered all your gifts, sit back by the fire and celebrate with some egg nog! Happy Holidays!


Friday, November 30, 2012

Make Some Time for Fun

As the frenzied excitement of parties and shopping takes over this December, it’s always nice to try and keep life in perspective.  The best means I have of doing that is through the constant humor and original comments of my two boys ages 12 and 8.  Here are a few recent examples that will hopefully give you a smile…
Peter's teacher told me about an incident at school that had everyone laughing in his math class.  His teacher was explaining fractions while using a visual aid with stacked plastic parts.  While removing some of the pieces they became stuck and wound up flying all over the place.  One happened to hit Peter square on the head.  He then promptly looked his teacher in the eye and said, “Is this how you are trying to get fractions into my head?”  He quickly followed that comment with, “You know, fractions sure give me a headache!”
Jacob, who is in second grade, recently informed me that our country has never had a girl president because, “Girls always use exclamation points at the end of their sentences.”  Well, I thought, that could explain a lot! (Please note the strategic and, I believe, appropriate use of my exclamation point).
Peter, while riding in the car with me this week, realized he was sitting on the charger for my phone.  He promptly held it up and said, “I thought I was feeling a little extra charged!” (Please note my appropriate use of the exclamation point again)
After school yesterday, Peter excitedly hops in the car and reports that he has the best news EVER.  Wow, I thought, what could this be?  “Our English test for tomorrow is cancelled,” he said.  Seriously, I thought?  That’s the best news ever?  I didn’t exactly get as jubilant as Peter was, but I could appreciate his excitement—one less test to study for tonight.
Isn’t that exactly what we often wish for:  a little less responsibility and a lot more time for fun?  It is something to keep in mind during this hectic month.

Sunday, October 28, 2012

Grateful for the Vote

This Sunday, just over a week away from the 2012 Presidential Election, I am thinking of how grateful I am to have the right to vote. As a woman, as a young person, as a worker, as a Southerner, and as a person with a craniofacial condition, there are lots of reasons that I'm glad that my government wants my input in how we run our country. I represent a unique perspective in the country and I want my leaders to know that -- and I want them to know your perspective, too. 

No matter how small you feel your vote is or how little impact you think you have (a common groan I'm hearing from my 20-something peers), the right to vote distinguishes our country from so many others on Earth. We can communicate our needs and rights to our governing body and in turn, they determine trade policy, economic policy, educational policy, health and medical research policy and funding for different groups of citizenry who need subsidies from time to time: all the way from the large corporations getting tax incentives for research and development on energy to power our nation to my 77-year-old Nanny who uses Medicare ti stay healthy and fight illness in her retirement. With our vote, we tell our governing body what matters to us and what we think they should prioritize. 

Naturally, with over 300 million Americans, we're going to differ on what's important. And that's why voting is so important. It is one of our rights; it is our free, unearned right as an American, but one that was fought for decades ago by people who risked their "Lives, Fortunes and sacred Honor." Indeed, many Americans lost their life securing the right to vote over the years because their rights had not been previously considered. We all must participate in our democracy to ensure it works for us, by us and with our voices, we evolve the country to remain the greatest nation, founded on a human experiment that everyone is equal. 

So if you're of age this year, I urge you to vote. Whether you're in a red state voting blue or a blue state voting red or a swing state voting green - just vote! (Side note: If you hate your "two choices," I recommend you take just 90 minutes to watch the third party candidates' debate.) With your vote, you are exercising a right, participating in your present and future, and turning the wheels of democracy. If you're frustrated with the system, remember: votes add up and you must "be the change you wish to see."

So take a moment, Google your state voting registrar's website and make sure you're registered. Check your polling place and make a plan to vote. If you can early vote, go cast your ballot in advance and avoid the Election Day frenzy. Either way, you will never regret voting because representing your interests, your unique American experience, is the patriotic thing to do. 

Election day is Tuesday, November 6, 2012.


Thursday, October 25, 2012

#ChooseKind Giveaway!

All month long we've been reading, talking and tweeting about Wonder by R.J. Palacio. This book has been an amazing tool for schools to discuss differences and insecurities, anti-bullying platforms, kindness, and, most importantly, acceptance of people who have a facial difference.

We love all the new @CCAKidsTweet followers who are enabling us to "widen the circle of acceptance".  It's been so touching to see classrooms make a real-life connection to the book by starting the #CCAStandingOvation movement.  Teachers are taking the lesson of Wonder, connecting with "real-life Auggies", and showing their students how small acts of kindness can make a huge impact in society.  These simple and positive gestures change lives!

To keep the spirit of kindness alive, CCA is doing its first Twitter giveaway! You could win a limited edition #ChooseKind stow-n-go grocery tote. We'll randomly select 15 winners on Halloween, so get your tweeting fingers ready!  

Here's how to enter:

  1. Follow @CCAKidsTweet on Twitter then send us a tweet saying "Just entered to win a #ChooseKind Tote! #CCAGiveaway #Wonderschools #CCAStandingOvation"
  2. Make sure you include the hashtag #CCAGiveaway in your tweet so that we can track participants.
  3. The contest will close at 12pm CST on October 31, 2012.  Winners will be randomly selected. 
  4. Winners will receive a direct message on Twitter with further instructions on how to receive their tote.
Stay tuned... and #ChooseKind today!

Erica & Dede

Thursday, October 18, 2012

Thank You for Choosing Kind!

How wonderful that the "Choose Kind" message from R.J. Palacio's book Wonder is being embraced in classrooms around the country!  Teaching students to be accepting of differences and choosing to act kind toward others is a powerful lesson that will stay with these kids throughout their lives.  Having them connect with real-life people who have facial differences solidifies that lesson even more.

If you have been following our blogs about Wonder, then you know that CCA began selling the book just a few months ago.  The Power of First Impressions announced our endorsement of the book.  We then participated in the #WonderSchools Blog Tour, by posting Every Kid Needs a Hero.  A 5th grade class in Baltimore saw the blog and, after reading Wonder, acted on it's message by choosing to give a real-life Auggie his first standing ovation.  What a wonderful way of embracing the book's message to "Choose Kind".  Here's the Standing Ovation for Peter video that Reilly Posey's 5th graders created .  

As a real-life Auggie's Mom, I can't recall ever being so touched as I was when watching this video.  I have always said that our CCA kids leave a powerful impression on everyone.  As their parents, I believe it is up to us to make sure that impression is overwhelmingly positive.  After drying my eyes, I told Peter that he should send a video message back to Reilly Posey's class thanking them and sharing his opinion of the book.  What ensued was a great evening where my two boys wrote a skit, rehearsed, and eventually produced Peter's Precept Video.  What a fun family project.  We had a lot of laughs together that night-- lots of ear humor!

Peter's Precept video has now been viewed over 500 times on YouTube, and I'm proud to say that my family is doing our part to spread CCA's message that "Beyond the Face is a Heart" while also promoting Ms. Palacio's campaign to "Choose Kind".  But, it doesn't end there...........

This morning, I was blown away to read the following email from Deb Tyo who teaches at Versailles Middle School in Ohio.  "Dede - Please tell Peter how much he has inspired us.  Because of Peter this is happening...  To Our CCA Friends.  I believe the entire middle school from 6-7 grades shared the book as a school-wide read.  How amazing is that?!  And, how about that video?  I'm still choked up and overwhelmed with gratitude.  This book and these teachers are improving the lives for CCA families everywhere-- the affected kids, their siblings, and their parents.

CCA parents have faced sadness, fear, grief, and anger following the birth of their child.  They have spent anxious hours worrying about teasing and bullying at school.  And, they have endured many agonizing days and nights sleeping in hospitals, waiting in emergency rooms, and driving to/from specialty clinics and therapy sessions.  For all this, our CCA family is finally receiving some gracious acknowledgements of acceptance.  Let's return the kindness by expressing our appreciation for those who are embracing the "Choose Kind" movement.  Make your pledge now at

CCA Families created the following video at the "2012 Cher's Family Retreat" as a thank you to all of those who support and embrace our vision of a world where all people are accepted for who they are, not how they look.  I can't imagine a more deserving audience for it's debut.

Finally, my standing ovation goes out to the following for their amazing acts of kindness...

Proud Mom of CCA Kid Peter (age 12) & CCA Sib Jacob (age 7)

Tuesday, October 9, 2012

Peter's Precept for #WONDERschools

If you have been following our blogs on the book Wonder by R.J. Palacio, then you will know what a positive impact it is making for craniofacial children and anti bullying.  The book's "Choose Kind" message is being taught in classrooms around the country.  This week Peter received a beautiful act of kindness from a 5th grade class in Baltimore who only knew him from the blog I posted last week (Every Kid Needs a Hero).  They wanted to give Peter his first "Standing Ovation" for his birthday (spoiler alert if you haven't read the book).  Here's a link to the video they "Tweeted" to me...

As a thank you, and to continue spreading the message of kindness, Peter and his younger brother, Jacob, put this video together to share with all students who are reading Wonder.  

Auggie's birthday is tomorrow, and there is a grass-roots campaign underway to make October 10th "Choose Kind Day".  As part of this effort, please visit to take the pledge and share this powerful and positive message!

Sunday, October 7, 2012

Every Kid Needs a Hero!

Today is my son Peter’s 12th birthday, and I’m so very proud of the young man he is!  The best birthday present he's received is the national recognition and acceptance that R.J. Palacio’s debut novel, Wonder, is giving to kids like him.  Every kid needs a hero to inspire them, and I want to thank Ms. Palacio for creating one for my son.  If you have read Wonder, I think you will agree that the main character, Auggie, is a hero that everyone can fall in love with.  For a 12-year old boy with a craniofacial syndrome, however, there are simply no words for what it feels like to have kids around the country reading this book and cheering for Auggie.  This book has given my son and the craniofacial community something we have always desired:  for people to look beyond our children’s faces and get to know them for who they really are.

Peter loves this book and wants all his friends to read it so they will, “understand me better.”  For the #WONDERschools Blog Tour, we thought it would be fun to give classrooms around the country a real-life comparison to Auggie.  Look at the picture of Peter and see if you can identify at least five things that remind you of “Auggie”.

Peter and Auggie photo comparison
  1. They are both boys about the same age.
  2. They both attend a private school.
  3. They both have a dog.
  4. They both have a hearing aid device.
  5. They both love Star Wars.
  6. They both have ear-related birth defects.  Peter wears a prosthetic ear, which he placed on the book cover in this photo.

They have many other similarities that aren’t depicted in the photo.  Here are just a few you might want to discuss.
  1. They both had trachs to help them breathe.
  2. They both have one sibling.
  3. They have very close birthdays.  Peter’s is October 7th.  Do you know when Auggie’s is?
  4. They have both been Boba Fett for Halloween.
  5. They both love video games!
  6. They both have difficulty chewing and swallowing (Peter still has a feeding tube).
  7. They have both had over 20 surgeries.  Peter has had 25.  Do you know how many Auggie had?
  8. They both feel most comfortable at home with their family.
  9. They both use humor to handle their differences.  We have a lot of ear jokes in our family!

Peter and Auggie also have differences that you can’t see in the photo:
  1. Peter has a younger brother while Auggie has an older sister.
  2. Peter’s parents knew a little bit about his birth defects before he was born.  Do you remember Auggie’s birth story?
  3. Peter never hid behind a space helmet, but he can understand why Auggie did.  Peter likes to hold the cover of Wonder in front of his face.
  4. Peter has never had a standing ovation—yet!

At the beginning of the book Auggie says, “If I found a magic lamp and I could have one wish, I would wish that I had a normal face that no one ever noticed at all.”  Peter wishes for the exact same thing every time he is asked that question.  While I would like that mainstream acceptance for Peter, I also believe he has a unique opportunity to leave others with a positive life-altering impression.  Our kids have the gift of inspiring those around them.  As Auggie says in the book trailer, “It’s hard to blend in, when you were born to stand out.”

Always remember to “Choose Kind”.  If you want to send Peter a birthday wish, please donate to Children’s Craniofacial Association by visiting his fundraising page at

Dede's family lives in metro Detroit where they enjoy cheering on the Detroit Tigers and Detroit Red Wings.  She has two rowdy boys ages 12 and 7, two crazy dogs, and one dedicated husband.  Peter was born premature with Goldenhar Syndrome.  He spent his first 3 1/2 months in NICU and came home from the hospital with a trach, feeding tube, oxygen, and lots of machines!  Jacob is four years younger and is unaffected.  He enjoys playing hockey and winning at anything he deems a competition, which is basically everything.  Peter is an avid reader, a walking encyclopedia of Star Wars, and a fan of playing jokes with his prosthetic ear.  Dede is a family-faculty speaker at children's hospitals and serves on the Board of Directors for Children's Craniofacial Association.  Follow her on Twitter @ddankelson.

Thursday, October 4, 2012


We are just about 10 months into this new life as first-time parents, and parents of a medically challenging/CCA child!

As any parent, especially first time parents...second guessing EVERYTHING seems to be a norm.  From food intake, to poop schedules to pediatricians and specialty surgeons, many days I wonder how I do not have an ulcer yet.

However, there is one thing I have never second guessed, and that is Mary Cate being born to us!  

I can remember in those early days, the hundreds of emails, texts and phone calls..everyone had the same message.  "God could not have picked two better people for her to be born to." or "God only chooses special parents for special children"  I knew this, but this was not the easiest information to digest early on.  I can clearly remember telling my mom one day, "If one more person tells me that she was born to us 'for a reason' or 'because we can handle it better than others' I will LOSE it.  Why are WE the special ones?  They are special too?"

Though I knew deep down that MC chose us for a reason, it has taken a while to look back upon my life and fully realize that FATE truly brought us together.

I have spent many nights awake thinking back over the last 32 years of my life, and truly believe all that has happened has done so, to lead to this.  My family, my friends, my relationships, work choices, nursing degree, living and traveling abroad.  Every life experience has shaped me, in order to make the life of Mary Cate...fabulous! 

This is not to say that I do not have weak moments times when I lay in bed crying for hours, times when I am frustrated, angry and want to run away.  

The night she was born my main concern was how I would get out of bed to 'run-away', but I never thought of running away from my loves.  I wanted to wake up Chris, "steal" Mary Cate out of the NICU, hail a cab to O'Hare, and catch a flight to the Caymen Islands where we could live happily ever after....(for those who know me, you will find the whole Caymen Islands part pretty hilarious, since I am a fair-skinned, red-head who avoids the beach and the sun at all costs)!  :)

Thankfully I was still numb from a c section that night and couldn't get out of bed, because ever since then, I clearly see why she is here, why fate brought us together.

Our life is SO incredibly enriched, I see everything in a whole different light, I have new respect for people and for life. I work harder, play harder, live more fully and love more deeply.

Nearly 15,000 people from 35 different countries have visited the website and blog that I set up for me that is 15,000 more people in this world that are now educated on Apert Syndrome, and just a minuscule part of the reason I believe that fate brought us together.

As parents of Craniofacial children, we know there is nothing we did do, or didn't do, no way we could have changed our fate...we were meant to be their parents, and we have to do or best to master our fate to make their lives the best it can be!

xoxo Kerry

Sunday, September 30, 2012

Grateful for lazy weekends

As a mom of three little boys - a Pre-K and Kindergartner and a newborn - life has been a bit crazy lately. We've had to adjust to a new schedule of waking up every morning at 6:45am to get Ethan, 5, out the door for school while juggling the logistics of feeding Hudson (2 months) at just the right time and making sure Aiden is either dressed for school too (Tuesdays and Thursdays) or ready to walk with us to drop Ethan off.

I want to be the "do it all" type - PTA mom, Susie homemaker, volunteer, advocate for my kids, etc. and I'm grateful that I am able to "stay at home" to take on these roles. My days are filled with running around, making appointments, keeping up the house and trying to make time for a shower now and then. I love it, don't get me wrong. But sometimes it can be tough.

As the weeks come to an end, I glance at my calendar to see what is on our agenda for the weekend. Often times it is jam packed with the fun stuff we can't do as a family throughout the busy week. Going to community events, heading out to the park to enjoy the weather, squeezing in as much as we can before the daily grind starts all over again on Monday.

We love having fun and doing things together, however sometimes I wonder if we try to do too much. Which is why the few times a month when the Saturday and Sundays are wide open with no plans scratched into my planner, I breathe a long sigh of relief. Ahhhh. No obligations. No appointments. No schedule. No reason to get out of our pajamas if we don't want to. It's wonderful.

This was one of those lazy, rainy, stay at home and read books on the couch weekends. And I am so grateful it was.

Thursday, September 27, 2012

From Behind the Tree

When I was four years old, one of my best friends was an enormous tree, which was in the center of our front yard. I can still hear the sounds of the wind blowing through the branches and rustling the leaves. The tree was a strong fixture in my life and never made fun of me for being different.

 I lived with my family next to an elementary school, and a lot of children would pass by the yard on their way to school or other activities. I had not started school yet, so I would often play outside in an imaginary world where I was in control.

 I developed a keen ear for impending danger. Whenever I would hear the sound of children approaching, I would run behind the tree and stand quietly until the children had passed. I was different from the other children and was often teased about how I looked.

One day I was caught off guard and didn’t hear when some children approached. I ran to get behind the tree, and a boy saw me running through the yard. He jumped the fence and yelled that I could not hide from him. When I saw him jump the fence, I immediately left the tree and tried to get into my house. I made it up three of the steps before he pulled me from behind and punched me in the stomach.

My mother heard my cries and helped me up the steps into the house, where she held me until I stopped crying. I remember her telling me that life isn’t always fair but that I was safe.

Now, 29 years later, I still often visit that child under the tree. I tell him not to worry because his life will work out and although the road may be rocky at times, there are people who will always be there to help. Most important—I will never let him down or let him be left alone.

In my opinion a child should be allowed to hide behind trees as needed, but a strong sense of independence should be fostered in the child so that he/she can eventually stand independently of the tree and interact with other people. A balance is needed between the relief of “crutches“ and the pain that is necessary to move through for growth.

Guest Blogger Stephen Wright is 43 years old and works in San Francisco at Wells Fargo Bank. Stephen is a published writer with two articles published in PARADE magazine. He has also been featured in a Canadian magazine about craniofacial issues. Stephen has Crouzon’s Syndrome and has had 23 surgeries which includes complete reconstruction of the face as well as skull restructuring.

Monday, September 24, 2012

Grateful for Siblings

This week, it's easy to think of what I'm grateful for: my super sib sister, Emily. Tuesday is my sister's birthday and I am so proud of the woman she's become. My sister is the one person who I can call in crisis mode who will talk me through it with the advice of someone who thinks like me when I'm not in crisis mode. That's sister speak for “she gets me”.

She’s my little sister by five years, so growing up, I tended to protect her; I was her "junior mother" who made sure she wore her coat on the playground (our classrooms were 5 doors apart) and taught her about telling time using "Rugrats," the 90s television show. I also made sure she had a healthy imagination... since I may or may not have tortured her by pretending I could turn into a vampire named "Vampira.”  

But I wasn't the only one who was taking care of her sister. My sister was there to show me how to keep things in perspective, even from a very young age. Her silly sensibility coupled with her fierce attitude and rebellious streak kept life fun, exciting, and challenging. She seems so carefree, like she doesn't worry like me ... or my mom ... or my grandmother. I don't know if she missed that trait in the genetic roulette or if maybe she does worry like we do, but channels it into humor and play and being an excellent listener.

Regardless of the character of your super sibs or the role they play in your life (younger or older, sister or brother), I'm sure that my CCA friends would agree, siblings just "get it." They know how to show compassion without pity, worry, or burden, and they know when to send you a funny card or punch you in the arm.  They know the difference between when you need a tub of chocolate ice cream and when you really need a shot of Patron!

Happy birthday, Emily, and thanks for being awesome. Keep it up ... or I'll kick your butt, anyway. :)


Thursday, September 20, 2012

A Mother's Love has no Limits

One of my favorite scenes from the book Wonder by R.J. Palacio is from Via, the older sibling of Auggie who has a craniofacial syndrome.  Here's the excerpt from Via's voice...

"Once, I got up in the middle of the night because I was thirsty, and I saw Mom standing outside Auggie's room.  Her hand was on the doorknob, her forehead leaning on the door, which was ajar.  She wasn't going in his room or stepping out:  just standing right outside the door, as if she was listening to the sound of his breathing as he slept.  The hallway lights were out.  The only thing illuminating her was the blue night-light in August's bedroom.  She looked ghostlike standing there.  Or maybe I should say angelic...  I wonder how many nights she's stood outside his door.  And I wonder if she's ever stood outside my door like that."

How many nights have you stood outside the door of your craniofacial child's room and done that exact same thing?  This excerpt strikes me on several levels.  First, Peter's breathing has been a constant concern since he was seconds old.  He had a tracheotomy when he was only three days old, and he spent his first three months on a ventilator.  When he came home, he slept in our bedroom for two years.  I spent countless hours awake at night watching the numbers on his pulse/ox machine go up and down.  When he moved to his own bedroom, I used a video monitor so that I could both hear and see him.  A decade later, I still listen to his breathing at night, although not nearly as intensely or often as those early years.

The way Via describes her mother in that scene is a mixture of beauty, sadness, and respect.   It provides insight into a sibling's understanding of how emotionally intense it is to parent a child like Auggie.   It also reveals how much Via desires her mother's love and attention.  Throughout the story, you learn how Via grew up quicker, complained less, and took care of herself more often as a result of having Auggie as her brother.  This makes me both sad and proud when I think of my youngest son, Jacob.  

Unlike Via's character, Jacob is four years younger than his sibling.   Thankfully he didn't suffer from the trauma, anxiety, grief, depression, and overwhelming exhaustion that my husband and I endured during Peter's early years.  Nevertheless, he is influenced both positively and negatively by having a brother who looks different and requires a lot of medical attention.  I know there have been times when Jacob was sick that I thought, "You're fine compared to what your brother's been through."  Or, we have joked that it sure would be easier to get Jacob to take his medicine if he only had a feeding tube!  On the positive side, being a sibling like Via gives gifts of compassion and empathy that can never be taught.  We are, after all, a collection of our life experiences.

If you have more than one child, then you understand what a delicate balancing act it is to make sure each of your children feels equally loved.  If one of those children requires intense attention the other sibling(s) are no doubt going to feel the shift in balance.  At our house, we really try to give both of our boys the attention they need.  It's not always possible to make things equal though.  Peter's needs are focused on medical care and extra help with homework and self-care every night.  Jacob's needs revolve around his love of sports and after-school activities.

Sometimes I feel guilty that the time Peter gets is often in the "less-than-fun" range.  Other times the guilt is because Jacob doesn't get as much attention in the evenings when Peter requires so much one-on-one help with homework.  All that being said, life is messy and unfair:  there are no guarantees, promises get broken, plans change, and we all have trials.  One thing that remains consistent in our home is that we take a few minutes every night to read a book together, talk about our day, and give hugs goodnight.  AND, here's my little secret that I want to share with Via...  On numerous nights, I still stand not only outside Peter's door but Jacob's as well.

Thursday, September 13, 2012

And THIS is why it's important to spread awareness

I have a Google Alert set up to receive emails any time Apert syndrome is mentioned in the news or on the internet. It's exciting to see all the articles across the United States about families who are doing their part to raise awareness about their child's condition and the organizations like CCA that help them.

However sometimes I get an alert that links to message boards where people are asking questions about Apert syndrome - whether it be for a school project or some other reason.

A while back, I clicked on one of those alerts and it brought me to a message board where people were discussing various medical conditions. The banter back and forth seemed to be among educated individuals so when I read this particular mention of Apert syndrome I was floored.

"Can my child get Apert syndrome by touching another person affected with it?"


Nobody had responded to the question yet, but my fingers began typing at warp speed to set the record straight. What I wanted to say and what I ended up saying are two completely different things. Rather than bash this person for their ignorance, I decided to use it as an opportunity to educate them about Apert syndrome - what it was and what it most certainly was NOT (ie. a communicable disease you can spread by TOUCH).

I encouraged them to respond to me via email if they had any further questions. Needless to say I never heard from them.

When you have a facial difference - or any physical difference for that matter - it is not uncommon for people to stare. To be curious. To wonder. But it never occurred to me that people might think that Apert syndrome was something one could "get" through casual contact. It truly opened my eyes to just how important it is for us to spread awareness and advocate for our loved ones affected by facial differences.

So during this month of awareness - I hope that each of you will do your part to educate others. Host a picnic. Hang a poster. Talk to your child's school. Or even just start a conversation with the people who linger in their looking at the park or grocery store.

Let's get the word out there and set the record straight. These individuals deserve social acceptance and to know that "Beyond the Face is a Heart".

To read how I am doing my part - visit my personal blog 
and read my awareness post: What It's Like

Friday, September 7, 2012

Where do you belong?

The TV is seldom my first priority even when it’s on, so I wasn’t paying close attention to this Nationwide ad that I saw the other day until I heard, “Wherever you belong, you belong where you’re appreciated.” I stopped. I had cold chills. I put down the dust rag I was cleaning with and went right over to my laptop to YouTube the whole ad. 

“Where do you belong?” the commercial asks over faces of teenage girls singing in a car and post-hipsters in retro swimsuits rushing into a freezing ocean. “Where do you belong?” With the triple-dog-darers? The up-all-nighters? The hearty smiles and warm embraces told the story: we are all different but yet, we all belong here. Here on this shared space we call Earth.

You see, when you look different, you don’t just grapple with belonging on an existential, quarter-life crisis level. You face it early on, when you walk into the lunchroom, looking for an open seat next to a friendly face. You handle the stress this question brings as you cross your fingers and conceal them into fists hoping you belong as one of the first names shouted as team captains call dibs. You search out “belonging” on the playground when everyone else runs off with their friend group as soon as the school door opens, claiming their respective spots. The top of the slide is reserved for the cool girls to perch on and peer down at their “subjects.” The seesaws are for the rowdy boys, surfing the creaking planks as if they’re riding waves in SoCal. The swings are, of course, for the kids who still think that being a kid is about having fun. And then there’s you (and by you, I mean me), book in hand, content to read Anne of Green Gables for a fourth time, enjoying the quiet of the bench and the cool breeze. But in the back of your mind a question nags: Where do I belong among these kids? Why don’t they want me in their group?

This question for me was the hardest in late elementary and early middle school. Once I got to high school, most of the mean-spiritedness my peers developed faded as mysteriously and as quickly as it had appeared. There were hold outs, of course, who insisted on rude remarks and subtle exclusion, but they were the exceptions. I felt, even if tenuously so, that I belonged to my school. I belonged with my little group of friends—“The Good Girls,” they called us. I belonged in yearbook and Anchor Club and youth group at church. I had a sense of belonging and I was happy. 

But as our lives change, we grow up and move out of our happy comfort zones and onto new life experiences. The question, “Where do I belong,” resurfaces a lot. I think that looking different has the potential to increase anxiety about taking on new challenges and subconsciously discourages us from stepping out of those comfort zones. We fear rejection like SEC football teams fear the Crimson Tide (couldn’t resist, y’all). 

But don’t let the fear of rejection prevent you from finding your niche. I’m almost sad to say that a commercial drove that message home to me this week. "You belong where you’re appreciated." Looking different or having a sibling who is differently-abled, allows us to experience an alternative lifestyle. We have a unique vantage point; we see life from a perspective others do not. Empathy for others, a connection to one’s spiritual self, and a strong will to practice kindness characterize many of us that grew up watching others react to how we look, not who we are. So don’t settle for belonging where it’s easy, convenient or comfortable. Try new things, because it’s very likely that you have something to offer—something that is valued and appreciated. You are more than a sum of your parts and you belong where people appreciate you for your refreshing perspective, cutting wit, artistic insights, or athletic prowess. Many, many times you’ll ask yourself, “Do I belong here?” and your honest answer may be “No.” But one place you do belong is CCA. So, consider this your invitation to join the nation of craniofacial advocates who are living full, exciting lives and furthering the message of acceptance and appreciation, one heart at a time. 


Guest Blogger Erica Mossholder is a 20-something living with a craniofacial difference. She is happily married, gainfully employed, and is pursuing her MBA. Erica serves on the Board of Directors for Children's Craniofacial Association

*Note: Nationwide Insurance has no affiliation with CCA nor does CCA endorse this company.

Sunday, September 2, 2012

Grateful for Acceptance at School

"While reading bedtime books a few nights ago, I mentioned to Peter that some of his teachers might be hanging up “Craniofacial Acceptance Month” posters in their classrooms.  Jacob then said, “What about my teacher?”  Well, I replied, “I don’t know who your teacher is yet, but you can take one to school with you next week.”  Peter promptly chimes in, “Now Jacob, don’t start bragging about your brother who has all these cool differences.”  Oh boy, I thought, we’ve created an egotistical monster!

Seriously though, I’m glad that Peter is so comfortable at school.  I know that he is accepted without question.  His classmates already understand that there is nothing to fear about being friends with someone who looks different.  This Sunday I’m grateful that our school is full of students, teachers, and staff who already embrace a community of acceptance.  While Peter may or may not be “Mr. Popularity”, he has without a doubt shown his fellow students that, “Beyond the Face is a Heart”.

Please contact Annie Reeves at [email protected]
to request "Craniofacial Acceptance Month" posters!

Sunday, August 26, 2012

Grateful for...Community Acceptance

When we moved to Texas from Indiana almost 2 years ago, we hoped we would be welcomed to our neighborhood with open arms. Although we settled into our new home just as "Craniofacial Acceptance Month" was coming to a close I knew I wanted to host a picnic the following year.

Over the next year we became great friends with our neighbors and started both boys in preschool. We got involved in the community as much as we could - taking on volunteer roles, participating in neighborhood activities, etc. Before long, we felt that Texas had in fact become our "home".

In September of last year, I hosted my first Craniofacial Acceptance Month picnic. I invited our neighbor friends and the families of children in Aiden's preschool class who had gotten to know a little bit about craniofacial conditions from him at school. I hung posters in our Resident's Club and at local businesses around town. During our time in Texas, I had also met a few local families who were affected in some way by craniofacial conditions, so I reached out to them inviting them to the picnic too.

For the big day, we rented a bouncy house, served drinks (donated by our local grocery store) and had information about CCA, Aiden and Apert Syndrome ready for anyone who wanted to learn more. On the day of the picnic I was nervous that nobody would show up however we had a great turn out! Many of Aiden's classmates came and all of our neighbors who had become great friends were there as well. There were even a few families we had never met, but who recognized Aiden from the community and wanted to show their support.

We were so happy that people were genuinely interested in supporting Aiden and in learning about craniofacial conditions. Having the opportunity to spread awareness brings about acceptance. We were grateful to feel the acceptance within the community.

As September approaches, please think about hosting a picnic for Craniofacial Acceptance Month in your area. Contact CCA at 1.800.535.3643 to request materials that can help you promote acceptance month by organizing a picnic, hanging posters and/or ordering other CCA materials to help spread the word.

To read more about and see pictures from the picnic we hosted last year, click HERE.