Reflection: CCA Annual Retreat and Educational Symposium in Minneapolis

Editor's Note: Christine Clinton was kind enough to write a reflection on our 2023 Annual Retreat and Educational Symposium. This retreat is so very important to all our families, and adults like Christine, who wait all year for the last weekend in June when the CCA community comes together to relax and spend time with one another. Next year, we will be in Baltimore, MD, from June 28 - 30th, 2024. Keep an eye on our social media channels and website for more details.

By Christine Clinton

This year, the Children’s Craniofacial Association held their 33rd Annual Family Retreat and Educational Symposium in Minneapolis, MN from June 22nd - June 25th, 2023. I had never been to Minneapolis prior to the retreat, so I was very eager, and very excited, to be able to attend another retreat with CCA.

This was my eleventh retreat with CCA, so I was especially happy to be able to attend. Places of interest that I made sure to visit while I was there was the Minneapolis Queen River Boat Cruise, which my friend Bernice and I did on Friday afternoon, and the Basilica of St. Mary Church. I went to the Basilica on Sunday afternoon. We also went to the famed Mall of America too!

Some of the highlights of the retreat that I especially enjoyed was the educational symposiums. Bernice and I attended two of the symposiums, before I even got my retreat bag to see what special goodies CCA had for us. After a day of symposium sessions.Thursday night was the retreat kickoff and entertainment. We had fun watching the magician and enjoying some snacks.

On Friday, we had a welcome breakfast, and then Bernice and I went on the river cruise. After we got back to the hotel from the river cruise, we were able to enjoy the carnival celebration; that was fun, I was able to catch up with my friends from CCA, and meet new families who were there as well. Friday night was family night, with the hometown raffle baskets. It was so fun to see what everyone brought for their raffle baskets. The bag that Bernice and I put together, another friend had won, so that was awesome to see.

On Saturday we had breakfast again, and then there was a talent show, such great talent. After the talent show, we were able to relax a bit, before the dinner/dance. To me, the dinner/dance is a very fun night, but it is also a little sad, because it is the last night we are all together before everyone goes their own way to go home. I enjoyed great food, spending time with lots of my friends, awesome music, taking lots of pictures, and dancing the night away.

Sunday morning, we had our farewell breakfast, took more pictures, and said our goodbyes until next year. I always thoroughly enjoy every retreat with CCA, but for some reason, the retreat in Minneapolis was much more special for me. For me, the weekend of the retreats is the one weekend that I look forward to all year long, and the one weekend that I thoroughly and truly enjoy. I feel normal when I am on these retreats, and I feel like I can be myself. It is a true blessing to be able to be with others who understand the struggles of life.

Thank you to the Children’s Craniofacial Association for all that you do for families and individuals with craniofacial differences

Disability Reads: Ariel Henley's "A Face For Picasso" A Revelation For Those in the Facial Difference Community

By Kara Jackman

I waited two years to read this book. 

Two.

I avoided reading this book because I knew how close to home it was going to hit – a cannonball to the solar plexus. It was all going to be all too much, so I had to be ready for it. 

I was as ready as I would ever be this summer, and I am happy to report I enjoyed every bit of the book, “A Face For Picasso,” written by Ariel Henley. 

She spoke directly to the way many of us feel in and out of the hospital. Ariel Henley is a twin. She and her sister, Zan, were born with Crouzon syndrome. Not only did she experience these surgeries, she also had to watch her sister go through them as well. They were part of a large family with three older siblings, and a mother and father that loved and fought for them all along the way. 

This exquisitely written book chronicles Ariel’s life in beautiful prose filled with wit, love, and revelations that were very meaningful to me as a fellow craniofacial-affected person. The book is organized into three sections: Before, Finding My Voice, and Healing. She gets into the surgeries, watching her twin experience surgeries, addressing her time in therapy, school, and as a cheerleader. In between, she talks about art history with regard to Pablo Picasso. Her ability to fold in the research she did on Picasso was seamless, and easy to understand. If you are not an art history buff, be assured you will find this approachable. I certainly learned a lot about the man behind the paintings, and I was not impressed, which is why Henley titles the book “A Face For Picasso.” This framing is a way to talk back to his misogyny and the rules of art that govern beauty such as symmetry.

Ariel deftly named so many things that we all experience, but often are not able to explain. Often we chalk it up to trauma, but never explore the root cause of that trauma. Her descriptions of agency and bodily autonomy are truly where the rubber hits the road. She writes, on page 184 of the book: 

“When you grow up in a hospital, you learn that bodily autonomy is a myth. My body was not my own. It did not belong to me. It belonged to the doctors and nurses who shaped every part of me. It belonged to the hospital personnel and to my parents, who signed waivers, consenting to strangers touching, breaking, molding, the very essence of who I was. This was what I hated the most about surgery. It wasn’t the idea of my body being cut open or the pain I experienced when I woke up. It wasn’t even the terror I knew I’d experience during recovery. It was the oblivion. It was fading off into total nothingness. It was waking up and realizing I had no idea what had been done to me. I didn’t know who saw me, who helped me, who touched me. I was helpless. I had no control over my own body.” 

After reading this paragraph, I gasped, my jaw gaped, and I felt seen. Actually, Ariel saw right through me to my soul. The precipitating event that brought on this bit of introspection by Ariel was trying to figure out where her underwear went after a surgery… it had to be removed for the catheter. Her mother kindly reminded her. This very same thing that had happened to me, and has scarred me to this day. So many of us speak of this experience of having to remove our underwear during surgery and it feeling particularly violating. Only recently, have I been able to reconcile this feeling in my own life. 

Another part that stuck out to me was the positive and negative interactions she had with classmates. Usually this kind of book will focus on the negative interactions, but this book shared the special bond she had with friends at school, even allowing them to come visit her while recovering from surgery.

There was some trepidation in allowing her friends to see her recovering, but once it happened, it deepened their connection. After receiving some water and an ice pack a friend brought Ariel after one of these surgeries, she reflects, “I couldn’t show this side of my life to the kids at school. I couldn’t tell them about what my experiences were really like. That was how I knew Nina and Victoria weren’t like our other friends. They never made Zan and I feel like we were different.” This moment, and others like it, detailed in the book, warm my heart.  

There is so much in this book to unpack, issues of control over one’s body; all the unpredictability of planning surgeries only to have them fail or not happen at all; school, college, and figuring out one's identity as one’s face and body change from year to year. Then, there are the triumphant episodes that family and friends of Zan and Ariel have around homecoming court and cheerleading which gave me great hope for society. I even appreciated when Ariel chirped back to her parents about things she hated about her life and experiences. Though I don’t believe I could ever do that to my parents, I am sure I did.

“A Face for Picasso” has something for everyone. Please pick it up and read it, or listen to sweet Ariel read the audiobook version (Oh my, yes! She also read her words for the audiobook version.) Again impressed is not a strong enough word to describe Ariel. Explore the many layers that she examines, and feel validated by this book, an authentic and relatable read. 

  

Ariel is currently conducting research for her next book. I look forward to it and anything else she plans on writing. I am a fan for life. And I am forever sorry that it took me so very long to pick up this excellent read. Fear and trauma are such tricksters. Thankfully, I seemingly always have the last word in their defeat.

Participate in ELSA Advocacy Day at Home or in Washington, DC Sept. 18 &19

Editor's Note: Our friend Becky Abbott from the National Foundation for Ecotodermal Dysplasias shared this update with us about their upcoming advocacy days on September 18 and 19, 2023 for the Ensuring Lasting Smiles Act (ELSA). You can participate from home or in Washington with NFED, other nonprofits, and friends supporting ELSA. Read more below to find ways you can spread the word and raise awareness about this legislation that "would require all private insurance group and individual health care plans to cover medically necessary services resulting from congenital abnormalities" (NFED.org website). Learn more in this interview with Becky on our youtube channel. 

Advocacy Update We want to share some exciting news! We have made some additions to our Advocacy Resources webpage to help you advocate for the Ensuring Lasting Smiles Act both in-person and virtually! Updated supporting documents like the ELSA One Pager, Patient Stories and FAQs. A list of all legislators with links to their social media accounts to make it easier for you to tag your legislators in your social posts and ask them to support ELSA. Download and print business cards to hand out to your contacts to encourage them to advocate for ELSA. The cards include a QR code that will take them directly to our easy-to-use advocacy web tool. We are currently updating the web tool, and it will be available to use soon!  Advocate With Us From Home Whether you are joining us in Washington, D.C. on September 18 and 19 or advocating from home, here are some action steps to take for ELSA.   Tell everyone you're advocating for ELSA!  MONDAY - Take a picture with the "I'm Advocating for ELSA" sign(either printed or on your computer screen), post to social media, tag your legislators and be sure to use the hashtags #EnsuringLastingSmiles and #NFEDOnTheHill. TUESDAY - Contact your legislators via the NFED web tool or your organization's tool and ask them to become an Original Cosponsor of ELSA for reintroduction in this Congress. We are currently updating the web tool, and it will be available to use soon!   WEDNESDAY - Share the story of why you are advocating for ELSA with a picture of yourself and/or your loved one(s) who would benefit from ELSA's passage. ASK YOUR COMMUNITY TO JOIN US! Share the graphic below on your social media platforms to ask them to join us on Advocacy Day on Capitol Hill from home and support ELSA.   Use these hashtags when you are advocating: #EnsuringLastingSmiles #NFEDOnTheHill If you are registered for Advocacy Day on Capitol Hill, it is important you attend virtual training on Tuesday, September 12 at 7:30 p.m. CT. You should have received the Zoom link to join the training at the email you used when registering. Please email Becky at [email protected], if you do not have the Zoom link.   Thank you for your continued work for the Ensuring Lasting Smiles Act and those affected by congenital anomalies that would benefit from ELSA! Check Out Our Day on Capitol Hill T-Shirt Thank YOU Advocacy Day on Capitol Hill Sponsors! Organizing and promoting an event like this takes tremendous resources, and we couldn't do it without you. Thank you to Peter and Julie Durand, The Gott-Scott Family, MyFace and Smile Train for sponsoring this fall's event! View All Advocacy Day on the Hill Sponsors.