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.

Erica

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 www.choosekind.tumblr.com.

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 www.choosekind.tumblr.com 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 www.firstgiving.com/fundraiser/petesoktoberfest2.






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

Fate


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 MC...to 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