Thursday, September 27, 2018

Parenting A Child With A Facial Difference, One Cleft Mom's Perspective



Guidebook Underway for Parents of Kids Born with Cleft Lip and Palate by Amy F. Mendillo...

Help Needed! Please email Amy at amymendillo@gmail.com if you would like to share your story. Learn more about how at the bottom of the page.




By Amy Mendillo
From the moment I learned that my daughter would be born with cleft lip and palate, I started to worry about how strangers would respond to her face. Then, a few weeks after her birth, it happened. I took her to the pharmacy one day to run an errand. And as I fumbled around looking for things to buy, an older woman came by, paused at the sight of a baby, and bent over to take a look. She’s staring at my daughter’s clefts, I thought. I had rehearsed a few words for this kind of situation; I had planned to explain that my daughter was born with CLP and would have surgery soon to close the space in her lip. But would I mention that I find her beautiful as she is? Suppose this person says something hurtful? I couldn’t think of any words. The woman leaned in real close. I am so tired, I thought. I hope I don’t cry.
The woman stood up. She smiled. “Why, look,” she said, “at how soundly she sleeps.”
I decided to write a book for parents of kids born with CLP to help them address the practical and emotional challenges of a baby’s first year. After hearing from other parents about their trips to the pharmacy (or the hospital or their family reunion), I wanted, even more, to share their stories and ideas, too. I hope it will feel comforting to hear how others cope with the early parts of this journey, whether we’re feeling worried, overwhelmed, joyous, or in this case, relieved and appreciative for the basic kindness of others. Many parents mention concerns about bonding, or describe a shaky lump in their throats when they hand over their child, literally, to medical people prior to surgery. Some parents feel discomfort related to taking and sharing pictures of their baby. Others wonder why this condition happened to their child in the first place; many mention guilt.
Parents and Clefts (that’s the working title of the book) also addresses practical topics related to navigating a baby’s first year, ranging from bottles to burping to recovering from surgery, based on scores of interviews with professionals and other parents. So whether you’re awake in the middle of the night wondering whether you should enlarge the nipple on your Mead-Johnson bottle (go for it! Yes, cut it with a knife!), thinking through your search for a surgeon and team, or just looking for a clear, personable description of the basics on the condition, this resource will have you covered. When my husband and I were going through this experience with our daughter, we wanted a guidebook on the bedside table (while our baby was screaming, crying, and spitting up milk) rather than yet another desperate search on the Internet (though I love online parents’ groups, too). Parents and Clefts is a practical and emotional resource—written from one parent to another—based on current research, academic articles, firsthand experience, and the collective wisdom of many, parents and professionals. I can’t wait to share it with you.
But first, I need to finish it. If you are a parent of a child born with CLP, I would love to speak with you about your early experiences with your child. I am conducting phone interviews this fall and possibly into Spring 2019, particularly on experiences with pre-surgical devices (like the NAM and other methods) and with cleft palate bottles. But I’d also welcome your stories and insights more generally. Your contribution would be enormously helpful. All interviews are anonymous; you can read more about it at parentsandclefts.com. 

If you’re interested in participating, please drop me a line at amymendillo@gmail.com. I would be most grateful for your help. My hope for this book is that parents will feel more informed about their choices, more comfortable with the journey, and reassured that they are not alone.

#ThankfulThursday: Hazen Chamber of Commerce Donates $323 to CCA





Our friends in North Dakota celebrated Craniofacial Acceptance Month with a screening of the movie "Wonder" on September 9, 2018 at Cinema Flix as part of their annual HarvestFest celebration. The film provided an opportunity to raise awareness about craniofacial conditions for CCA's mission, but more importantly for two local girls MacKenzie Berger and Makena Heier.


Sixty people attended the screening sponsored by the Hazen Chamber of Commerce and Cinema Flix who showed the film at no cost. A number of displays filled with Wonder curriculum, acceptance month posters, coloring pages, crossword puzzles, and syndrome booklets for the crowd to explore. Information was available for all ages. Mackenzie, born with Apert Syndrome, attended the movie with her siblings shortly after recovering from surgery. Makena was nearby working at the movie theater while her mother, Antoinette Heier, watched the film for the first time. Antoinette said, "I had tears throughout the entire movie. I kept picturing our own daughter." 




Viewers responded positively to the film with kind words and deep pockets. The sixty people who came out to see "Wonder" that day donated a total of $323.00 to CCA. Antoinette tells us that, "One viewer kindly said "Bless you for bringing in this movie. We love you!"

CCA is so very grateful for this donation and the community that came together to raise the funds.













Tuesday, September 25, 2018

Dallas Pack 800 Creates Inspirational Bibs and Bookmarks For CCA!







Some cool bookmarks for kids 
Cub Scouts Pack 800 shared what they believe it means to be kind today at a meeting last week. The pack decorated baby burp cloths with positive messages. Another station at the meeting had the Scout's making monster bookmarks. All of their creations were donated to CCA. CCA plans to distribute them to new families and will be placed in care packages sent to children undergoing surgeries. Thank you so much Dallas Pack 800 for having so much heart, love, and kindness. Please keep sharing the ways you know kindness in your words and your deeds each day. To follow future Dallas Pack 800 activities, click over to their Facebook page.



Hard at work spreading kindness!



Cub Scout and his cloth creation!

Monday, September 24, 2018

Seeing Rainbow By Rachel Seppie

(Editor's Note: This reflection emphasizes the importance of Craniofacial Acceptance Month for all of us. Rachel Seppie, mother of a son born with craniosynotosis, discusses the birth of her son, the love of her daughter for her sibling, and how they took on the world as a family.)

By Rachel Seppie


As I look back this September on Craniofacial Acceptance Month it brings me back to a moment five years ago.  I lay heavily pregnant in bed letting my three year old daughter Aspen paint my toes, our daily ritual revolved around her excitement for ‘her baby’ to arrive.  She would tell me daily how great he was going to be, she shared with me the things she would teach him, which happened to include “How to clean her room”.  She thought the coolest name for him would be Rainbow and so to humor her we lovingly referred to baby brother as Rainbow for the remainder of the pregnancy.   The pregnancy was difficult and after 35 weeks in the womb on a dry November morning a giant Rainbow appeared in the sky and he made his debut.
Rainbow was emergency airlifted to the nearest major medical center moments after his birth.  Aspen was not yet able to hold Rainbow in her arms.   The next 7 days are a complete blur of scans, blood tests and imaging.  In the blur of entering the Cranio world there is one moment I will never forget.   After arriving at the hospital shortly after his delivery they prepared to lay him in my arms for the first time.  I tried to take him in, he certainly looked about as good as we felt.   His funny shaped head was bruised, his skin was red, his eyes swollen shut and his tiny nose flattened completely to one side of his face.  With the cords and tubes it was impossible to take in all of his features but one thing was certain, he was the most handsome man I had ever laid eyes on.  Unable to hold his tiny hand in mine because both of them were bound by tape holding IV’s in place, I improvised and nestled him as close as possible. I took a deep breath as I snuggled his fragile body close, love instantly filled the fear in my heart.  
I think I had memorized the tile floor in the first stall of the bathroom outside of the Neonatal Intensive Care Unit.  I had spent a lot of time in there hiding from reality and crying my eyes out.  Today was no different although I should have been happy; I was preparing to take my son home after a stressful week-long stay in the hospital.  He would come home for the first time, finally meet his big sister, see his room, and celebrate his first Christmas.  I was taking him away from the dozens of doctors and torturous tests that had been run on him in the past week.  I would momentarily rescue him from the looming surgeries and procedures that we now knew he would be facing.  I stared down at my hands that were cracked and bleeding from having been washed a thousand times a day going in and out of the NICU.  I felt haunted by the events of the past week, my hands proof that I wasn’t having a nightmare.  Did they really trust me to take home such a medically complex child? How in the world could one child possibly take this much?  How as his parent would I ever be able to watch him struggle this much?  How would this affect his big sister and would she be able to handle this at such a young age?  As these questions ran on a loop through my mind  I thought of my daughter Aspen sitting outside the doors counting the final minutes until she finally met her brother and I cried harder.   As they prepared the final discharge paperwork we stepped out of the NICU and went to eat lunch with Aspen.  I cried over my grilled cheese sandwich, so scared, defeated and angry at the world for everything my family would face.  As my tears fell I felt a little hand begin to pat my leg, as I turned to face Aspen she looked at me so sincerely and said “Mommy don’t cry, our baby is going to be just fine” She understood everything in that moment without us having to explain it to her.  I saw God’s hand all over this situation especially when looking into my daughter’s eyes because no one could have hand picked a better sister for this little boy.  She gave my hand a squeeze and told me for the millionth time that she could not wait to hold ‘Landon’ the baby formerly known as Rainbow.
Later that day we pushed open the heavy metal doors of the NICU for the final time carrying out our precious cargo.  Aspen bolted to the carrier.   I wanted to laugh at her excitement as she threw back the car seat cover and peered at ‘her’ baby.  She looked right at him but did not see the birth defects, the tubes, the monitors.  She saw her baby as beautiful as the Rainbow she had named him after during my pregnancy.  “Momma our baby is soooo cute” she exclaimed.  I took a photo of the moment mentally and stored it away, it was the best moment of my life.  Words would never be able to describe the smile on her face, everything I felt in that moment reflected back at me in that smile.  My fears of what he would face seeming to melt away with her smile.  I knew that no matter what he faced he would never fight alone.  Her pride for her brother radiated through the entire hospital, she saw Landon, for exactly who he was, her perfect brother.    She wrapped her tiny hand protectively around the handle of his carrier and insisted on “helping” her dad carry him the rest of the way to the car.  She would stop every few feet, throw back the cover and take another look at him as if she was afraid he would disappear.  Having known him for 2 minutes she was already fiercely protective of him.  I could have watched that scene play out again and again.
                
The first weeks home we were wracked with fear of the future it would have consumed us if not for the vibrant little girl who treated him like any big sister would.  She was possibly the only one who saw completely beyond the diagnosis, the looming surgeries and just saw love.  She became our backbone, keeping us all smiling and providing a much needed since of normalcy.  I will never be able to understand how she was so perfectly chosen for him, the ways she taught us to deal with hardships and how quick to adjust to scary situations.  One of my favorite memories was after his first major skull surgery, Posterior Cranial Vault Distraction. I sat in the waiting room with Aspen as she waited to see her brother.  “Sis, I want you to be ready to see brother because he does not look like himself” she nodded that she understood. “Remember yesterday they had to fix his skull so his big brain had room to grow? Well he has a great big cut on the top of his head and some little metal things on his forehead, but he is okay and he wants to see you.”  “Okay Mom, can I go see him now?” She responded plainly.  Inside I was panicking about how she would react.  Without hesitation she bounded into the room and climbed on the stool next to his bed in the Pediatric ICU.  She looked right at his face and grinned “Hello there Bruddy” she called him by his nickname.  “Wow, look at your horns” she added amazed, and that was that.    As I glanced back in awe of my resilient kids Aspen flashed me a reassuring smile and a giant thumbs up. Landon would undergo 18 surgeries in his first 4 years of life including two rounds of Distraction on his skull.  After round 2 Aspen was so impressed with her brother’s awesome new hardware she came home and stuck two nerf darts to her forehead and spent the rest of the day pretending she had Cranio as well.  She has never let him go through anything alone and she has always been there with a smile and a thumbs up.

I sit here and think of how many times were we have been on the receiving end of stares and unkind words. Times that I could not swallow the lump in my throat in time to respond before my sweet little girl chimed up for us.  At the Library once a child turned to her and said “Look at that weird baby over there.”   I waited with my breath held several feet away to see her response, not wanting to draw too much attention just yet. “What baby?” she looked around and saw nothing. “That one, right there” he pointed at Landon.  Aspen’s face went from confused to annoyed in no time flat. “That is my brother and he is notweird” she emphasized each word of her response.  “He is perfect.”  She calmly turned around and got along with business as usual.   I swallowed a lump in my throat, my eyes stung but I refused to cry until I was safely in my car. I sat sobbing in the parking lot of the library, wishing that when people looked at him they could see what the two of us sitting in the car did.  They would see someone who had been alive only six months and had battled his way back to his family many times, he suffered more pain than any adult I knew, he was brave and strong and amazing.  His huge intimidating scar couldn’t have been anything different, each of the hundreds of stitches on his scalp represented a moment of bravery and every amount of pain he had overcome being anything smaller would not have done him justice.  “Mommy don’t cry about what other people think, our brother is perfect just how he is” a wise little voice chimed in from the backseat.  My heart wanted to explode with love for this kind, brave wise little girl.

I am always going back to that moment in bed with her wondering what the chances were that she chose that name of all names.  To us rainbows are beautiful, heaven sent and often signify strength after a storm.  It is so fitting it still gives me goosebumps.  I am so proud of the warrior she is, understanding Craniosynostosis and all that comes with it from such a young age and yet not letting it affect her relationship with her brother.  We spend so much time educating our community on his diagnosis but she spends her time teaching the world about her little brother- the boy behind the diagnosis.    Aspen has stuck by all the promises she made her brother while he was in the womb.  She has protected him, loved him, been his friend through everything and just last week I caught her trying to teach him how to clean her room.

Thursday, September 20, 2018

TODAY Donate to CCA Via #NTXGivingDay



Today is #NTXGivingDay This year please donate to help us raise money during North Texas Giving Day. The largest state also has the largest heart. Hundreds of organizations located in Texas participate in this day to promote charitable giving. This year we celebrate on September 20, 2018. Set a reminder on your calendar to go to this page to donate on 9/20. 


#NTXGivingDay

Wednesday, September 19, 2018

Book "Wonderfully Made" by Dr. Francis Smith and Michele DuBroy Now Available



The cover of Dr. Francis Smith and Michele DuBroy's book "Wonderfully Made" 




Dr. Francis Smith's book, Wonderfully Made: The Dr. Francis Joel Smith, PhD Story co-written with Michele DuBroy is out and available for purchase from Amazon. 

Francis and DuBroy have been working on this book for a while now and they are very excited to finally have the finished product available for everyone to read. He is such an inspiration to many, both in and out of the craniofacial community. Many in our CCA family have already embraced the book, purchasing it and posting images of their copies on their social media pages. 


We are very proud of all that you have accomplished, Francis and Michele! Keep on making strides in medical research, writing, and more!


Tuesday, September 18, 2018

A Sibling Reflects Through Poetry Oh His "Best Friend"



By Dillon Lucas

Editor's Note: Seventeen-year old Dillon Lucas wrote this deep, heartfelt poetic reflection about his brother, and best friend, Brody. Brody was born with Apert Syndrome. Dillon has watched his younger brother manage and overcome many surgeries. In this piece, he reflects on what the parental and sibling experience mean to him. He shows us the effect it has had on his family and himself through descriptive imagery and rhyme. Thank you for your thoughtful poem, Dillon. Writing is a beautiful way to honor our feelings, families, and personal experiences. You have captured them well. Keep on writing! Continue to share your spirit with the world.

My Best Friend

We have put him in the arms of a surgeon.
We have slept upright in a hospital chair.
We have listened to the beeping of machines.

We’ve been thankful.
We’ve smiled through the tears.
But with all of this going on all we can feel is fear.

We aren’t able to do anything when the time comes.
All we can do is sit there, hope and pray
That hopefully he will come out of that room one day.

The doctors, about to take him in the room.
I turn to my mom and she sheds a tear.
She leans to him and whispers “My sweet boy there is nothing to fear”

I hold back the tears after looking at my mother.
All I can do is wonder.
On what those surgeons will be doing to my little brother.

Monday, September 10, 2018

Experiencing Acceptance At Retreat

By Rasheera Dopson 

(Editor's Note: Rasheera sent us this reflection about our Annual Retreat and Educational Symposium in the days following our time at the Little America Hotel in Salt Lake City at the end of June 2018. Thank you for your thoughtful words, Rasheera.
Scottsdale, Arizona will play host for our families next year. )




I have read about my syndrome many times online, but there is nothing better than being in a room full of people who look exactly like me. The feeling is indescribable. My take away from the Annual Family Retreat and Educational Symposium this year is this one sentiment --  “some things can’t be taught but have to be experienced.”

For most of my life I have always felt a void. I felt as though I never fit in or belonged. For a long time I looked for acceptance in other places. And even though I have read about acceptance and kindness in different books I could never really understand what that truly meant until I entered a room filled with acceptance and kindness at retreat. CCA is different. They take the idea of acceptance and kindness and translate it into a actual experience. Experiencing first hand the genuine love, kindness, and acceptance at the CCA retreat has healed my heart more than any reconstructive surgery.

Sometimes people misconstrue thinking that if we just looked normal then all of our problems would go away, but that is so far from the truth.  I would proudly walk around with the same face and smile as long as I knew that there were others that loved and supported me despite my facial difference. Like all individuals with a craniofacial condition, I am not looking for perfection, but instead looking for acceptance.



My thoughts may seem a little sporadic, but that’s love sometimes; it can be a little unconventional and spontaneous. At this year's retreat I experienced genuine love. It was like God was showing me through CCA his love for my difference and disability. It's so important for spaces to be created for children and adults with facial difference or disabilities because it exposes each child to an environment that celebrates who they are. 

Sunday, September 9, 2018

Nathaniel Newman Seattle Children's Pulse Feature




The Newman family has some exciting news to share on behalf of Seattle Children's Hospital where there son Nathaniel is a patient. Dr. Richard Hooper has refined a surgical procedure called a subcranial rotation distraction that helps people born with Treacher Collins Syndrome breathe without a tracheostomy. The updated blog post about Nathaniel Newman's journey includes a scholarly article about the life-changing surgery that Nathaniel and other TCS patients have undergone. Nathaniel's father, and CCA Board member, Russel Newman writes about Nathaniel's progress after the surgery, " It really is amazing how Nathaniel is thriving since the procedure. He has grown 5 inches and gained almost 20 lbs in the last 10 months. He sleeps effortlessly 8-10 hours a night with no assistance. Energy through the roof. I think all of the kids treated by dr hopper are seeing similar results." 




You can find the journal article and a video in the middle of the Seattle Children's blog post at this link

Russel feels, "in my mind, and according to the scholarly article, changed forever how TCS Kids with complex airway issues will be treated."






Saturday, September 8, 2018

Educate Yourself On Your Time With Our Overviews and Syndrome Booklets





We have all your information needs covered with our educational resources. They are available 24/7 to help you understand the complexities of everything from cyberbullying to How to handle conversations about your facial difference. The syndrome booklets, written, by qualified medical professionals explain conditions in terms that everyone can comprehend. We look forward to adding to this collection of resources in the near future. For now, please review, share, and celebrate all things craniofacial with these useful documents. 




Thursday, September 6, 2018

Links of Love Golf Tournament, Thursday, September 27th



Thursday, September 27 will mark our 11th Annual Links of Love golf tournament, the Children’s Craniofacial Association’s DFW fundraiser which raises money for children and families affected by craniofacial conditions. We use this event to bring awareness to our community about the mission and programs of CCA. The funds we raise from sponsorships and participation will go directly towards serving CCA families. This is our 11th year and we hope it will be the biggest yet! 



in

ks


We will kick off the day with registration, starting at 11:30 AM - Be sure to get fitted for your complimentary golf glove, sponsored by Credit Union of Texas, and pick up your boxed lunch to enjoy before or during course play.

Shotgun start at 1:00 PM. Photos will be taken of your team on the course and we'll have CCA Kids in attendance. Contests are included in the registration price. After a fun round of golf, we'll have BBQ at the clubhouse and give out the cash prizes to the winners!

There will also be an AMAZING set of raffle baskets. You do not need to be present to win. We will have 5+ amazing packages in the raffle including: the Golf Package, the Food & Liquor Yeti Cooler, the Women's Basket, the Family Fun Package, and the Men's Basket. Each package is valued at $500+!

We hope to see you there! 
Sign up today!

Join Us for the Dallas CAM Picnic on Sun., Sept. 16, 2018 at 12PM




**Updated date and time: Sunday, September 16th, at 12PM at Sandy Lake Amusement Park**


It's not too late to join us for the upcoming Dallas Craniofacial Acceptance Picnic on Sunday, September 16th 12PM. Please join us for a day of  fun with friends old and new. 

The Dallas CAM picnic kicks off CCA’s nationwide celebration to bring awareness to individuals affected by craniofacial conditions. Our venue, Sandy Lake Amusement Park, is located in Carrollton, TX. The day will be filled with access to all of the fun amenities at Sandy Lake, from thrill rides to kiddie rides, mini golf, and arcade games. UJ the DJ will play all of your favorite songs while you dance the afternoon away with new friends. CCA will also offer face painting, rock painting, a visit from a costumed Disney character, and opportunities to bond with other families in the craniofacial community. New this year, a barbeque lunch will be provided to all who come for this special Craniofacial Acceptance Month picnic. CCA promises a fun afternoon for everyone. CCA promises a fun afternoon for everyone.

Here are some photos from last year's CAM picnic.










Monday, September 3, 2018

Meet the McGowans: Tom, Melissa, Abigail, Theresa & Josephine

Meet The McGowans: 



The McGowan clan lives in Canonsburg, PA, which is just south of Pittsburgh (Let’s go Bucs, Steelers, & Pens!). Tom works in the pharmaceutical industry, and Melissa is a teacher/grant writer turned stay-at-home mom. Let’s be honest, though. You don’t want to hear about them, so let’s talk about the kids (who keep them very busy…and tired).

Abigail (Abby) is five years old and was born with Pfeiffer syndrome, but she sure hasn’t let it define her. She is thriving in kindergarten and is currently involved in swimming and soccer. She also enjoys playing at the park, drawing pictures, reading, playing games, having dance parties, and playing pretend with her sisters. She also feels it is very important that people know her favorite color is orange and her favorite princess is Ariel. She says she wants to be a doctor when she grows up, and her craniofacial team has strongly encouraged her in this goal. This November marked a big milestone for Abby: one-year, surgery free!
L-R Reese, Josephine, and Abigail

Theresa (Reese) is three years old and attends preschool three days a week. Reese is involved in swimming and soccer as well, and she enjoys coloring pictures, running outside, playing with dolls, watching movies, and playing with the camera on Mommy’s phone. Her favorite color is “lellow” and her favorite princess is “Belle and Cindelella.” When she grows up, she wants to be a mommy and a teacher…but her biggest goal is to figure out how to spend as much time as possible playing on the iPad.

Josephine (Josie) is 18 months old and stays at home full-time with Mommy. She thinks she’s older and bigger than she really is, but she does a pretty good job keeping up with the big kids. Josie loves to read books, cuddle, play at the park, and copy her sisters. She also enjoys Family Swim at her sisters’ swim school, and she is quickly showing us that she is the fish in the bunch. Every time she goes underwater, she comes up smiling and wanting to jump back in again (and again, and again, and again…). She doesn’t have a favorite color or princess yet, but she does have a favorite accessory: hairbows. She pats the top of her head and fusses each morning until she gets a bow in her hair. What a little diva.

Last year, the McGowans worked together to hold a Wonder advanced screening. It was a WONDErful evening spent raising awareness of craniofacial differences, telling others about CCA, and enjoying the movie.

Read more about Abby's journey on Children's Pittsburgh blog. This entry was written by Melissa McGowan, Abby's mom. 

Sunday, September 2, 2018

The Mighty Prompts for September ...And Poetry





1. Let’s encourage kindness. Describe a small but significant moment of kindness that brought some warmth to your or a loved one’s tough day. You can describe something you did for someone else or something someone did for you. What do you want your readers to take away from this moment? If you respond to this writing prompt, use the hashtag #KindnessChallenge at the end of your post.

2. We all know what it’s like to feel lonely. Especially when you or a loved one is dealing with a health challenge, isolation and loneliness can be quite common. Describe a moment you felt alone — how did you cope with this, and what do you do to remind yourself you’re not alone? What would you tell someone who feels like this? If you respond to this writing prompt, use the hashtag #AloneTogether at the end of your post.

3. Self-care is all the buzz right now — but what does it really mean? Tell us what self-care means to you as someone with a condition or the loved one of someone with a health challenge. List the realistic ways you practice self-care, or highlight one creative way you do something for yourself. If you respond to this writing prompt, use the hashtag #SelfCareChallenge at the end of your post.

4. September is Pain Awareness Month. Describing pain is often one of the most difficult parts of chronic pain — whether it’s physical, emotional or mental pain. What’s a creative way you describe your pain to doctors, friends, family, etc. Do you describe it differently based on the person you’re speaking with? If you respond to this writing prompt, use the hashtag #ExplainMyPain at the end of your post.

The Mighty is also asking for poetry posts. Please write and use the hashtag  #MightyPoets when posting to social media. We do not want to miss your words and experiences. 

#WonderWednesday: A CCA Adult Reflects on Her Viewing of "Wonder"





Editor's Note: Our friend Lia Burton took a 10-movie challenge on Facebook. For 10 days in August she posted reflections about her favorite films in her Facebook statuses. Her final film review was about "Wonder." I read it and asked if I could share it with everyone in our CCA community. She agreed. Please read her words and thoughts on this important film. 


It's the last day and I couldn't leave Wonder off my list! The book was a huge deal in the craniofacial community. I read it, met the author, got to see a few staged readings, and have blue #choosekind bracelets all over my apartment. Several of the actors, including Jacob, came to CCA retreats to meet some "real life Auggies" before filming the movie, but had so much fun doing "research" that they keep coming back just to hang out. The movie was going to be a big deal for our community no matter what, but when it finally came out, it was so exciting to see it actually do well and know that tons of kids across the country saw it! 

It's a sweet story that accurately captures some of the highs and lows of being a kid with a facial (or any kind of obvious physical) difference. My mom, who is so much like the Julia Roberts character, cried through the whole thing and then couldn't sleep that night because she couldn't stop thinking about our real life and how authentically it was reflected in the movie.

This movie is not just for our bubble though, the true target audience is kids who know or might someday meet someone who is different from them in any way. By the grace of God, I always had more friends than bullies and am so grateful for it because I know that, unfortunately, that isn't everyone's experience. Even though I consider myself lucky to have had such good friends, I don't think of them as martyrs who sacrificed their time on poor me as some act of charity. I think they were simply wise enough to realize that having a unique face wouldn't preclude me (or anyone) from being a good friend. That wisdom is what made them truly wonderful people, and is what I hope every kid absorbs from this movie!

Thank you for joining me on this movie challenge journey and reading my long self-indulgent explanations!