Tuesday, November 26, 2019

30 Stories 30 Faces 30 Years: The Wilsons

Thank you for making our 30th Anniversary celebration truly a year to remember. If that alone wasn’t enough to celebrate, we are now embarking on celebrating the 30th year of our Annual Family Retreat & Educational Symposium in June of 2020! This program is the bones behind our organization and to celebrate it properly we will be bringing the whole crew to Texas, our home state, and the place where it all began!

The Wilson Family of Boaz, Alabama, has so kindly shared with us their journey of navigating their daughter’s facial difference and how CCA’s network and programs have created a strong support community for the entire family. They were a First-Time Retreat Family in 2018, and like many of us, are hooked on the priceless moments and special friendships CCA facilitates with other craniofacial families. Having this special yearly outlet to bring our families together is a critical tenant of our community: togetherness provides strength and connections. This sense of normalcy found at Retreat cannot be replicated or imitated. It is a space created and maintained by the sincerity of our families and the work we do all year long to make it a safe and supportive environment. Read through Laura Wilson’s words on raising their beautiful daughter, Beth, and how becoming a CCA Family has positively affected them:

Hello CCA family!

We are the Wilson family from Boaz, Alabama. Our daughter, Beth, is five years old and our son, Matthew, is two years old.

The first few weeks of Beth’s life have begun to fade into a hazy memory, but somewhere in those weeks is when someone told me about CCA and I sent an email requesting more information about Pfeiffer Syndrome. Someone responded immediately, and even though it took me another few weeks to actually read it, I was thankful to know someone out there cares.

We were, unfortunately, in the percentage of parents that did not know anything was wrong with their child until birth. Not only did we not know, but the words “Cranial Syndrome” might as well have been in a foreign language, because I had no idea how to process what was happening.

Thanks to social media, I was immediately connected with fellow Pfeiffer parents through a private Facebook page. I remember reading all the posts and looking at pictures of smiling kids that were enjoying life despite all the surgeries and obstacles. As Beth grew, it became evident that she was on the more severe side of 
Pfeiffer Syndrome.

In all honesty, it has been an incredibly hard five years for me as her mom. I’ve been through extreme lows. I’m not ashamed to say it has taken therapy and medicine to bring me out of some dark times.

I encourage anyone who is struggling in silence to please see a doctor, because I promise, you can feel normal again. It takes time, but you can do it! I’m a huge advocate for mental health and I’m here if anyone needs to chat.

Now off my personal soapbox and back to Beth… Beth is classified as nonverbal, has yet to be completely weight-bearing and take her first steps. She doesn’t eat anything by mouth and the trach to help her breathe is a love/hate situation.

Each week brings a different experience that tends to make me grieve everything she is unable to do. In those moments I take the time to be sad, sometimes cry, and then look at how happy Beth is. She has an amazing quality of life despite everything that has been thrown her way. I’m proud of how hard she fights to bounce back from major surgeries.

School is her favorite place to be and I’m blown away at how smart she is. Her spunk and sassiness are out of control like any other five-year-old girl. It’s not shocking that she is 100% a “daddy’s girl,” and I wouldn’t have it any other way.

I first heard about CCA’s Retreat right before Beth turned one. I always had intentions of going, but then a surgery would be scheduled, and I would say, “maybe next year we will make it.”

Finally, in the summer of 2018, when Beth was four, and not on anyone’s surgery schedule, we made it to our first CCA Retreat in Salt Lake City!

The first word that comes to mind is “overwhelmed”— but not in a bad way! It was extremely surreal to be sitting in this hotel lobby and see family after family check-in that resembled ours. I had never met another family in Alabama that has a child similar to Beth. The closest family to us, The Shooks, have a daughter with Apert Syndrome but they are over an hour away in Georgia. Huge thanks to The Shooks, because they are the reason we found our amazing Craniofacial surgeon, Dr. Larry Sargent.

During the CCA Retreat, I recognized so many people from social media that I had never met in person until then. It was kind of funny how everyone broke apart into their own groups. I noticed that I bonded the most with parents that also had nonverbal and non-mobile children. We all found our niche within the large crowd of families and it felt comforting.

The CCA Retreat was so well planned and organized, and like most of the kids there, Beth enjoyed the last night, which was full of music and dancing.

As a parent, my favorite was the talent show. Many of the acts left me with tears streaming down my face. These kids are one-of-a-kind and I’m proud to be a part of the CCA Family. Beth will undergo one of her biggest surgeries to-date, mid face, in the summer of 2020, so we won’t make Retreat that year, but you better believe I will be enjoying all of the pictures that will be posted!

Thank you CCA, for all that you do for families like us. You give us moments to look back on that are priceless and friendships that would have never formed if not for your programs.

Feel free to follow our family adventures on the Facebook page, “Beth’s Journey.” We are always up to something new!

The Wilson Family story mirrors so many of our CCA Families’ journeys and we want to continue to support our family network in the years to come! We invite you to commemorate the largest Retreat ever and the 30th Anniversary of our most important program we are able to offer to CCA Families. Without you, this legacy of life-changing work would not be possible.

Please consider a special gift this year to support and amplify our upcoming 30th Annual Family Retreat & Educational Symposium. We want you to help us send as many families as possible to Austin, Texas in 2020! We are expecting over 170 Families. May each of you feel the warmth and love this holiday season you give to each of us at CCA. We thank you for your support of CCA now and in the future. Here is to 30+ more years of empowering and giving hope to individuals and families affected by facial differences!


Christine Andler

Director of Development

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