Peter started his junior year of high school exactly two-months after his extensive jaw reconstruction. His journey was documented by Spectrum Health Beat reporter Sue Thoms and photographer Chris Clark in this story: 'Wonder' Kid Gets a New Jaw.
The following video captures social media posts, photos, and videos taken from the day of Peter's surgery on June 13, 2017 through the first two months of his recovery..
Peter had his last major jaw surgery when he was about 3 years old. Since then we have been in a "wait until he's older" honeymoon period. He was decannulated (trach removed) after the jaw distraction surgery, but his trach stoma never closed. Every ENT we consulted over the years was reluctant to close his stoma because they knew Peter would be having more surgeries (and likely need a trach placed while under anesthesia).
So, we've been in this strange holding pattern where Peter has not had a trach tube in since he was four, but he has never had the stoma closed. Removing the tube helped Peter get healthier (an end to the recurrent pseudomonis infections), and he no longer needed oxygen while sleeping. Over the years, however, his upper airway has gradually become narrower to the point where he relies completely on the trach stoma.
When Peter started high school, we began to research his options for jaw surgery with the ultimate goal of securing an upper airway. We elected to forgo another jaw distraction and instead have a complete jaw reconstruction that includes placement of a custom designed titanium TMJ implant.
Once the decision was made, the first step toward reconstruction was orthodontia. Peter had his second round of braces put on in May of 2016. The second step was a soft-tissue graft surgery that was done in January 2017. Peter's surgeon wanted to add soft tissue around his left mandible where the titanium implant will be inserted. Tissue was taken from Peter's inner thigh.
We are now days away from the complete jaw reconstruction surgery that is scheduled to start at 7:30 a.m. on June 13, 2017. This surgery will take 8-9 hours and involve craniofacial/plastic surgeons, ENT, neurosurgery, and many other staff. Peter will have his jaw wired shut for two weeks.
This is the longest and most complex surgery Peter has had, and we have been talking about it for nearly his entire life-- we just never knew what form it would take or when and where it would be. It seems surreal to finally be within days of this event, and I can't even begin to explain the emotions I am feeling. I will miss his handsome face, but I know how excited Peter is to see the changes.
We've were fortunate to tour the facility making Peter's custom implant while we were in California last February. We learned about the design and manufacturing process, which helped Peter feel comfortable about the surgery. They have also generously shared Peter's 3D images and implant design as it's progressed. It is comforting to know the people behind the design and engineering and how much they care about their patients.
Peter & Dede Touring TMJ Concepts in Ventura, CA
If you wish to follow Peter's #29th surgery, we will be posting updates on our social media pages (links above) as well as updating this blog periodically. To show your support, post on our social media pages with #PetesBand in the comments.
Having a pet is giving your child a friend who
loves them unconditionally, a friend who silently listens to all of their
troubles, a friend who cuddles next to them when they are sick, and a friend
that does not care in the least what they look like.
We have three picture book recommendations that will make great gifts for Easter Baskets, graduations, and other special occasions. Each of these recommendations is Mom approved by Dede, Teenager with a Difference approved by Peter (16), and SuperSibling/Middle-Schooler approved by Jacob (12). Happy gift giving!
We're All Wonders is a beautiful new picture book written and illustrated by R.J. Palacio, the same author of Wonder who inspired the #ChooseKind movement. This book already has a prominent spot on our coffee table because we love the message and illustrations so much! It's a timeless masterpiece that we think will become a mainstay in all early education classrooms. The story is a simple yet powerful reminder that everyone is different and kindness is important. Great gift for any age!
The Courage to be Kind by Jenny Levin & Rena Rosen is a new picture book full of advice for parents and teachers. It's written to be read aloud and encourages open and honest discussions about how we should be kind to everyone. There are photos and information about several conditions including Autism, Tourettes, Dwarfism, and Apert Syndrome.
The Girl with Many Faces by Brenda Scott-Coleman was published in 2012, but we just discovered this little gem. The book gives simple advice to young children who have difficulty making friendships. We love the message that, "friends are not made by the way they look. Friends are made by smiling, sharing, caring, listening, and joining together in fun and play." The price is unfortunately high for a soft-cover picture book, but we still wanted to recommend because of it's fun advice on how to make friends.
The novelWonderby
R.J. Palacio plants the seeds of acceptance and inclusion to all who read it.
Chris Jones, a middle school teacher inCapistrano Unified
School District in
Orange County, California, recognized the positive impact this book would have
on students. She took it upon herself to develop a 6th grade curriculum using the
#ChooseKind theme in Wonder. Mrs. Jones piloted the program last year
with two schools in the district and then offered it to all 6th grades for the 2016-17 school
year.
Peter with Ladera Ranch Middle School Teacher, Chris Jones
Peter with Don Juan Avila Middle School Principal, Josh Wellison
The curriculum includes lesson
plans developed and organized by Jones as well as materials from both RandomHouse and Children’sCraniofacial Association.
She worked locally with Coto de Caza Charity Classic’s annual
fundraiser, raising enough funds to purchase a copy of Wonder for every 6th grader
in the district. CUSD is one of the
country’s largest school districts with fourteen middle schools and about 4,000
sixth graders. Nine of the fourteen
middle schools participated in the #ChooseKind curriculum.
Ladera Ranch Middle School Projects
Shorecliffs Middle School Project
In addition to hosting a
training session for all the participating teachers, Mrs. Jones invited each
school to host a #ChooseKind Wonder assembly.
My 16-year old son, Peter Dankelson, and I traveled from Illinois to
California, bringing the story to life for Capistrano students.
Aliso Viejo Middle School
1 of 3 Assemblies at Ladera Ranch Middle School
Marco Forster Middle School
Peter and our family, like all
CCA Kids, represent a true Wonder story.
Hearing from Peter gives students a better understanding of what it’s
really like to live with a facial difference, why kindness should matter to
them, and why it’s not always enough to just be “friendly.” We educate students about trachs, feeding
tubes, cochlear implants, and fake ears in a fun and educational format that
puts everyone at ease and invites questions.
We explain why these devices are needed and how they are used. Students get to hold each device, including
Peter’s prosthetic ear! By the end of
the assembly, kids are no longer thinking about Peter's facial difference but
are, instead, more interested in his favorite Star Wars movie or video
game. Making the real-life connection
reinforces Wonder’s lesson about the value of diverse friendships and how
anyone can #ChooseKind anytime, anywhere.
Vista del Mar student asks Peter is he wishes he could change how he looks
Peter Takes a Selfie with Shorecliffs 6th Graders
Peter and I were welcomed at
all the CUSD middle schools we visited during our week of appearances. Students showed us kindness with their
applause, standing ovations, and chants of ‘Peter, Peter.’ Amber, a sixth grader at Shorecliffs Middle
School, even surprised us by paying for our dinner at a local restaurant! Another student raised his hand during the Q
& A, not to ask a question, but to ask if he could shake Peter’s hand. As a Mom, it was so heartwarming to witness
how excited the students were to meet Peter, have him sign their copy of
Wonder, and want to connect with him on social media.
Peter signs books at Niguel Hills Middle School
Peter signs a Wonder-blue cast at Newhart Middle School
Niguel Hills student asks to shake Peter's hand
Ladera Ranch students give Peter a standing ovation
Marco Forster students thank Peter for the assembly
Niguel Hills students have fun taking a selfie with Peter
Carl Hankey students pledge to #ChooseKind
When coupled with a real-life
connection, students become inspired to cultivate a community of kindness in
their school. Students who are inspired
to be kind make school a safe and fun place for everyone!
Many schools nationwide participated in The Great Kindness Challenge this past week. Our family was invited to Half Day School in Lincolnshire, IL to kick off their week of activities, and we had a great time speaking with the students and sharing our message to #ChooseKind. Thanks for their donation to Children's Craniofacial Association in honor of our visit!
I've always loved to read, and I couldn't wait to share this passion with my children. When Peter was in NICU, we recorded our family reading books so that he could hear our voices even when we weren't there. After Jacob was born, bedtime reading became Peter's favorite part of the day because he got to have Mom or Dad all to himself!
I've spent countless hours reading to my boys over the years. After the chaos of the day, it was always a time of relaxation and comfort. Although they are now 16 and 12, we continue to include family reading through audio books on long car rides. I also still enjoy searching for books to read together and can now ask for their opinion on the story and it's message.
Jacob has become my collaborator in reviewing books that might support our #ChooseKind message. He and I read the books together and decide if it's a "keeper" for our list. Wonder by R.J. Palacio is, of course, our favorite book to share the #ChooseKind message. Because it's a story best for ages 10+, however, we are often asked for picture book recommendations about kindness.
Listed below are books on our shelf that we've read together and feel worthy of recommending to young readers. Several of these books speak directly about kindness and empathy while others are ones we've enjoyed because of their positive message and engaging story.
We hope you enjoy one of our recommendations and sneak in some extra snuggle time with your little one(s). We are always looking for book suggestions, so please share your favorites by posting in the comments.
Picture Books about Kindness, Empathy, Being Different, and Anti-Bullying
We're All Wonders by R.J. Palacio - To be released on March 28, 2017 (obviously we haven't read this one yet, but how can it not be included?!)
Peter was honored by Global Genes with the 2016 RARE Champion of Hope in Teen Advocacy award for his #ChooseKind movement. He was given the award at a special gala event hosted by Global Genes in Huntington Beach, California. Below is a video of his tribute given by two former Navy SEALS as well as his acceptance speech. More videos and photos about this special event can be found on the Global Genes website.
October 10th is being recognized as national #ChooseKind day by fans of the book Wonder by R.J. Palacio. Auggie is the hero of the story and celebrates his birthday on 10/10. Here is how you can show your support for #ChooseKind & CCA Kids.
Perform a random act of kindness and post about it on social media using the hashtag #ChooseKind
Support Peter and Jacob's fundraiser by ordering a #ChooseKind shirt. Post a pic of yourself wearing the shirt and use the hashtag #ChooseKind
Summer breaks are the best time to have surgery and clinic appointments for kids with complex medical needs. Peter is no exception and spent several days at hospital clinics. The surgery he had this past summer, however, was 100% his own decision. Peter, who was born with microtia/atresia (missing his left ear entirely), elected to have surgery for a Cochlear implant called a bone-anchored hearing aid (BAHA). Peter can hear normally on his right side but is profoundly deaf on his left. This means he is unable to localize sound, hear anyone on his left side, and struggles in loud environments.
With every grade advancement, Peter struggled more with his hearing loss. Last year, he was especially challenged. He was a freshman at a larger, public high school trying to make new friends. I can't imagine his frustration at being unable to hear conversations at lunch or in the hallways. Any loud, crowded gathering was impossible for him to enjoy and left him isolated and exhausted.
Starting in second grade, Peter had access to the BAHA technology by wearing the device on a headband. Not ideal, but I never wanted him to go through the surgery without testing it. He would never consistently wear the headband at school or use the FM system that was provided with it. It was a constant struggle. When I would ask him if it helped, he would give a non-committal answer. He knew that giving the slightest positive remark might mean having surgery. His response was always, "I don't want to look like Frankenstein with something sticking out of my head." The irony of this statement always made me laugh because he already has obvious craniofacial differences. But, I understood his desire not to invite more opportunities for staring.
Now, for those of you unfamiliar with this surgery, it is not a huge bolt sticking out of your head! Rather, it's a small snap (like something you would see on Barbi clothes) and barely noticeable. I could've argued about it with him, but I just let it go. I did not want to force this surgery. I was also uncomfortable with possible complications-- skin grafts, infection risks, and daily care requirements. I believed that Cochlear would eventually develop a better and safer way to adhere the sound processor, and, fortunately, they did.
Cochlear now offers the BAHA Attract. By placing a magnet on top of the retaining screw (the part implanted into the skull to enable bone conduction), there is no need to have the screw protrude from the head. Thus, no need for a skin graft or daily care of the site. Even better, no Frankenstein bolt!
What really sold Peter, however, is that the sound processor is now blue-tooth capable and can be controlled via an app on his iPhone. He was given a trial to use for a couple of weeks and within a few days of using it, he said, "I think I want to have this surgery." That was a courageous statement coming from a kid that will do just about anything to avoid surgery. It was then obvious to me that it was time to move forward with the BAHA. My job as his primary caregiver and advocate was to make it happen. This time, unlike many others, my job was easy.
Dr. Michael Shinners, a neurotologist specializing in neurological disorders of the ear, was perfect for Peter's needs. Dr. Shinners is an excellent surgeon who really listens to and cares for his patients and their families. He worked with me to understand Peter's anxieties and to ensure the best and safest procedure for the surgery. Peter has a complex airway, so anesthesia is always a concern. The team that worked with us at NorthShore's Highland Park Hospital was attentive and professional. We were very happy with Peter's care from pre-op to discharge.
The night before the surgery, I learned via social media that one of Peter's friends from Children's Craniofacial Association was having the same surgery on the same day. I was so happy they had each other for support. It helped Peter knowing that he was not alone, and they had fun comparing scars and haircuts afterwards. This is one of the many reasons we love our CCA family!
Peter & Ryan - CCA Friends Since 2005
Surgery Day with younger brother, Jacob
Peter was "activated" with the BAHA sound processor one month after surgery. His eyes lit up and his smile was HUGE when the audiologist turned it on. Thanks to Dr. Shinners and his team, including audiologist Dr. Susan Marek for making this happen. Peter just started his sophomore year and is hearing much better in class and in the hallways and is less tired at the end of a school day.
Because this surgery was Peter's decision, he is 100% vested in caring for the device, and he wears it without being reminded. Although he would've benefited from having it sooner, making the decision himself was a powerful lesson in self-advocacy. He ultimately has to manage his own healthcare, and this was an opportunity for him to do that.
Our family had an amazing visit to California last month. We met with about 1,000 sixth graders from Don Juan Avila and Ladera Ranch Middle Schools who all pledged to #ChooseKIND and be upstanders in their communities.
All of the students we connect with, through either a personal appearance or Skype session, learn about people with facial differences and the challenges they overcome-- things like breathing and eating that we all take for granted. Our on sight presentations allow students to pass around a feeding tube, a trach tube, and a prosthetic ear while listening to Peter and Jacob share personal stories about surgeries, staring, and a removable ear!
A few key points from our presentations include the following.
Be the gamechanger. Be an upstander. Be the person who leaves a positive impression. Be "a little kinder than is necessary." Kindness is a choice you can make anywhere, at anytime, to anyone.
Exeter West Greenwich Jr. High School in Rhode Island chose Wonder by R.J. Palacio as their "One Book One School" summer reading program. When classes resumed in the fall, the school held a "Wonder Walk" on their track and raised $4,000 that was donated to Children's Craniofacial Association. This money is helping CCA provide medical-travel assistance to "Real-Life Auggies," funding family scholarships to CCA's annual craniofacial retreat, and supporting CCA's #ChooseKIND Education Curriculum for schools.
The school showed Peter's WonderKid Video about his life at their assembly and then listened to a special video message that Peter sent thanking them for hosting the walk. Below are links and photos from the event. Thanks EWG Jr. High School! You are making the world a kinder place for everyone, no matter what they look like.
Our family was invited to celebrate #ChooseKINDChicago yesterday at an event organized by Alderman Matt O'Shea and hosted by Mother McAuley Liberal Arts High School in Chicago, IL. The event included a discussion by the author who inspired the #ChooseKIND initiative. With her book Wonder, R.J. Palacio gave schools and communities an inspirational platform to discuss kindness and empathy; to celebrate the fact that kindness is something anyone can practice.
Palacio said she is honored that Wonder inspired the #ChooseKIND initiative. Her hope is that the message continues gaining momentum. She loves that people like the Lynch family from Chicago are visiting schools to promote kindness toward those who look different. Politicians like Matt O'Shea obviously agree, and I think more should come on board. Why not push all of our local, state, and national leaders to recognize kindness? Why not have every major city designate a "Choose Kind Day?" Better yet, let's have our government make it a nationally recognized day. Wouldn't it be amazing to see random acts of kindness being done everywhere? To promote that "Kindness is Cool!"
Wouldn't you love to see this billboard in your community? Tell your local leaders you want to see one!
To be treated with kindness is a universal desire we all have. "Choose Kind" vs "Don't Bully" is a more positive and empowering message to teach in our schools. The Golden Rule "treat others the way you would like to be treated" remains relevant in our communities. Let's start by simply being nice, by showing some empathy to others once in a while, by not thinking of ourselves as busier or more important than the next person, and by being a positive example to everyone around us.
#ChooseKind Day is 10/10 and Peter's birthday is 10/7. Make his week extra special by helping CCA Kids donate copies of Wonder by R.J. Palacio to schools around the country.
Peter and I spoke to a high school youth group last month about why it's important to be kind. We talked about how everyone is different but that we also all share many of the same wants, needs, and desires. Some of our differences, such as those of people living with craniofacial syndromes, are more obvious on the outside. But, many of our differences aren't so obvious. Seen or unseen, we are all, in fact, unique from one another. We also all have a universal desire to be treated with kindness. Furthermore, we all possess the POWER to choose kindness every day in every aspect of our lives. Something as simple as making eye contact and smiling at a fellow student in the hallway can potentially change the course of their day for the better.
St. Joseph Catholic Church - Libertyville, IL
Peter's precept, "Don't be afraid to be friends with someone who looks different" was further emphasized when, to the surprise of his unknowing audience, he removed his prosthetic ear! The courage it took for Peter to do that is something they will not likely forget. Feedback from the teens was that the message meant more coming from someone like Peter.
I considered it a huge win that I talked Peter into doing that in front of a completely new group of peers. I want him to learn how the power of embracing what makes you different can also make it easier for you to be accepted. High schoolers, and Peter is no different, largely want to go through their day unnoticed and simply blend in with the crowd. To do something that makes one stand out is often too much of a social risk. While I'm not encouraging extreme acts that will get one noticed, I'm also not encouraging teens to hide what makes them unique. Why be afraid of what makes you different, thus making you a target? Bullies are often insecure about themselves, which is why they pick on kids who they see as weak. Take their power away by being proud of yourself, by being proud of what makes you stand out, and by being surrounded by friends and teachers that have your back!
Peter had a great Skype session this week with 6th graders from St. Dominic School in Shaker Heights, Ohio. They read Wonder by R.J. Palacio this past summer and are now discussing it with the start of school. What a great way to kick off the year!
After viewing a PowerPoint presentation prior to the Skype, the students came up with the following questions for Peter.
Have you ever met a "Julian" in real life?
Do you wear your ear at night?
If you could meet anyone, who would it be?
How did Wonder change your life?
How is Breanna doing? (prior to the Skype, we shared Breanna's Story)
How old were you when you noticed you were different?
These questions and more inspired a fun conversation about how we all like to be treated with kindness, share many interests, and enjoy doing the same things-- even though no two people look the same on the outside.
Mrs. Slemc, the teacher who arranged the Skype session, shared this in a follow up email.
Dede and Peter,
THANK YOU THANK YOU! I think the session went very well. I hope Peter was comfortable. On our end of the screen, he was open and shining! The students thanked me for this meeting; they were happy to have met you. You have not only brought literature alive for the class, you have helped us grow in compassion, understanding and kindness.
Our school is having a retreat this Friday. The theme of the retreat and of our school year is "Shine". I can't help but connect the example of how Peter shines of God's greatness!
Thanks Mrs. Slemc and St. Dominic for being a #ChooseKind school this year and always!
