Smile Train CleftCon 2024

An Unforgettable Weekend of Trials and Triumphs! 

In July, 2024 I attended my third annual CleftCon hosted by SmileTrain.  CleftCon is for anyone who has a cleft lip and palate, supporters of individuals with a cleft lip or palate and for parents of children who have a cleft.  It was a weekend full of inspiration, tears, overwhelming emotions, strength, resiliency, compassion, friendship, love, bonding, storytelling and so much more!

What is CleftCon?

"Being surrounded by people who truly understand your journey is a powerful feeling."

This thought echoed through my mind as I began my trip to my third annual Smile Train CleftCon in Houston, Texas in July, 2024.

CleftCon is a weekend event where parents of children with a cleft, adults with a cleft, and cleft lip and palate supporters gather to learn, connect, and engage with each other in a safe and supportive environment. The one-day conference features sessions on navigating insurance decisions, advocating for the cleft lip and palate community, sharing your story on social media, navigating romantic relationships when you have a facial difference, and many other inspiring and educational sessions.

CleftCon is more than sessions and speakers. It is a reunion of individuals who have experienced life with a cleft lip and palate and understand the unique challenges of living with a facial difference.  It is a weekend to meet new friends, reconnect with existing friends, and feel completely safe and welcomed into the cleft family. 

In 2024, CleftCon was in Houston, Texas. I was excited to see many friends from previous events and looked forward to meeting new people.  Growing up with a cleft lip and palate, I learned resilience and the ability to handle challenges.  

My resilience was tested more than I could have anticipated at this year’s CleftCon...

The Arrival – Part 1

On departure day, I was up at 3 am for my 6 am flight to Houston with a 45-minute layover in Dallas. Coincidentally, my friend Jessie and her son, Hunter, who has a cleft lip and palate, were scheduled to be on the same flight from Dallas to Houston. I was so excited, I could hardly wait to arrive and was looking forward to a quick nap during the 2 hour flight. 

After boarding, the pilot announced an hour-long delay due to a worldwide communication outage.  When we landed in Dallas, I learned that our flight to Houston was canceled due to the outage, and I was rebooked on a later flight.  Rather than risking further delays, Jessie, Hunter and I met at the airport and decided to take a 4-hour road trip to Houston via rental car.

The Arrival – Part 2

The first car rental agency had no cars available, but fortunately the second one did!  We loaded our luggage, set the GPS to Houston and hit the road.  We had a lifetime of experience in resilience and determination, cancelled flights were not going to stop us!!  With Jessie driving and me navigating, we stopped for breakfast and enjoyed a pleasant road trip with great weather, engaging conversation and a stop at Buc-ees for some Beaver Nuggets!

After navigating Houston traffic, we dropped the car off at the rental agency, Ubered to the hotel and arrived with a few hours to spare before the welcome dinner. 

Welcome Dinner and a Giant Armadillo!

Our welcome dinner was at Goode Company Armadillo Palace, which lived up to its name!! The fun started in the hotel lobby as everyone who made it to Houston began arriving.  I exchanged hugs, laughter, and disappointment after finding out many people were unable to come due to travel interruptions.  During the short ride to the restaurant, I met MaryAnn, an adult with a cleft attending CleftCon for the first time. We talked about our love of Disney and exchanged social media profiles. 

The night was filled with laughter, pictures, and connecting with new and old friends. It was wonderful meeting Laura, host of the “Our Forever Smiles” Podcast and mother to 2-year old Giselle who has a cleft palate.  Despite having been awake for over 24 hours, I was energized by every hug and reunited with friends I haven’t seen in a year.

Cleft Advocacy and Navigating Insurance

Waking up Saturday Morning, I felt (and probably looked) like Anna from Frozen on coronation day!!  I excitedly got out of bed, eager for breakfast and the chance to chat with everyone before our first session.

After welcome remarks from Smile Train’s President and CEO, Susie Schaefer, our keynote speaker, Lisa shared the inspiring story of her foster son, Juan, who was born with a cleft lip and palate in Guatemala.  Juan’s story of resilience and overcoming major health challenges to become the smiling 9-year old he is today brought me to tears.  I was grateful for the tissues Smile Train put in the swag bag and knew the rest of the day would be equally emotional.

Next, we attended breakout sessions tailored for parents of children with a cleft or adults with a cleft. One session addressed navigating love and relationships when you have a facial difference.  I loved hearing from partners of adults with a cleft about their relationships, how their partner supports their cleft journey, and the challenges of discussing their cleft while dating.

Advocacy and Building a Stronger Community

Another session addressed the challenges of working in a visible career, such as a weather person on television, or an actress.  I heard first-hand experiences of the challenges faced by individuals with a cleft as they overcame bullying and ridicule to pursue their career goals in the public eye.

Additional sessions focused on how we can continue advocating for the cleft community by sharing our story and educating others about cleft lip and palate, the proposed ELSA bill to mandate insurance coverage for congenital birth differences like cleft lip and palate, and the trials and tribulations of being an influencer on social media when you have a facial difference.   

Throughout the day, I chatted with fellow attendees during session breaks and lunch, compared notes with other adults who have a cleft and shared my experiences with parents of children with a cleft.  Between one of the sessions, I left my “notes” on the note boards in one of the rooms.  It was inspiring to read the notes left by others, and even I even caught Susie Schaefer browsing the note boards!  Taking a moment to compose myself in the “quiet room” was a welcome break to make sure I had the emotional bandwidth to make it through the last few sessions of the day.

Before I knew it, we were hearing closing remarks from Troy, “Mr. Smile Train”, as Susie called him, and a big announcement from Iva that CleftCon 2025 will be in my home state of Florida!!  I was so excited – Orlando is only a short two-hour drive for me next year.

CleftCon After Dark

After the conference ended, dinner was served on the same floor as the sessions, with wine, beer and delicious Tex-Mex food.  With a glass of Prosecco in hand I mingled, shared memories of my favorite sessions, took pictures, laughed and exchanged more hugs. 

I enjoyed talking to the keynote speaker, Lisa to hear more about Juan and her story navigating the foster system and getting the care he needed.  I was thrilled to meet up again with Laura, the podcast host of Our Forever Smiles.  We chatted about her experience at her first CleftCon.  My heart soared when Laura told me how welcomed she felt and how much she enjoyed the day.  I spent time speaking with Monica Bush, founder of Legendary Smiles and met her husband for the first time. Monica’s husband remarked “CleftCon is like no other conference I’ve been to; everyone is so engaging, and supportive, and like family!” He was right! 

Before long, it was time to retire for the night. I said my goodbyes, took some last minute pictures and looked forward to seeing everyone next year.  I was a bundle of emotions as I headed to bed, feeling incredibly fulfilled from connecting with the community. 

Real Conversations, Real Connections

Having attended my third CleftCon, I can confidently say that the most enjoyable aspect is the freedom to be myself without fear of judgment. Unlike other conferences where I hold back until I get comfortable, I never feel self-conscious among the cleft community. Conversations are real, deep, emotional and authentic.  

With CleftCon, there is a unique camaraderie and connection that I felt from the minute I arrived Friday until I left for airport.  It’s like seeing an old friend you haven’t seen in ages, but feel like you just saw yesterday.  Instead of handshakes, hugs are exchanged, and I never have to worry about what someone is thinking about me, or if I’ll have to answer the question “what happened to your lip”. 

The sense of belonging and understanding makes every moment at CleftCon truly special, and I leave each year feeling more connected, motivated, inspired and empowered to the Cleft Community.

The Trip Home – Part 1: A Roller Coaster of Delays

Sunday morning was uneventful as I arrived at the Houston airport hours before my flight.  I was looking forward to getting home, especially since I was feeling under the weather.  Little did I know what the next 24 hours had in store for me!

After arriving at the terminal I found out my flight was delayed by 30 minutes. I thought nothing of it since I had plenty of time to make my connecting flight in Charlotte before heading home to Florida. Within minutes, I was notified of a second 30 minute delay. Realizing I would miss my connecting flight, I changed to a later one that was due to arrive around Midnight.   

More Delays....

While waiting for my flight and thinking about the weekend, another DING from my phone snapped me out of my thoughts.  My flight was delayed, AGAIN!  This meant I would miss my connecting flight in Charlotte.  The airline offered to put me up at a hotel in Charlotte.  The hotel was over an hour away from the airport, and, based on Google Reviews, in a not-so-safe part of town.  I declined their offer and explored my options.  Do I stay in Houston?  Get another flight to Dallas then to Florida?  Rent a car and start driving to Florida?

After many attempts refreshing the airline app, I got lucky!  A flight was leaving Houston at 6:30 pm with another flight at 8:30 pm from Dallas to Florida. I changed my reservations and was optimistic I would be home Sunday night.  I walked around the terminal to stretch my legs and ran into Becky Abbot, from NFED!!  What a coincidence. We took pictures, compared notes about travel delays and the weekend, and wished each other well as I headed back to my gate.

The Trip Home – Part 2: Weather Woes

After waiting over 9 hours at the airport, I finally heard the boarding announcement for my flight.  As I settled in for the short flight to Dallas, the pilot announced that due to weather we needed a new flight path, which meant an hour delay until we could take off.

Frustration and anger set in as I realized that once we landed, I had less than an hour to make my connecting flight. I checked the app and saw my next flight was delayed by 30 minutes as well. Whew! False alarm…or was it?

After an hour, the pilot informed us that we were next to take off and would be landing in Dallas in 45 minutes, just in time to make my connecting flight.  Once we landed, however, there were more delays - the gate was blocked by another plane! A quick check of the app showed my connecting flight was boarding.  I knew I wouldn’t be making it home that night.

As I walked off the plane 30 minutes later in Dallas, my mind raced with thoughts of “Now what!?”

A Lesson in Acceptance

My mother was my advocate growing up, handling my doctor appointments and surgeries. She always had everything figured out, never taking no for an answer.  I learned similar traits from her but struggled with accepting situations beyond my control.

Over the past five years, I’ve worked hard at acceptance—of my cleft lip and palate, how my parents cared for me, being bullied, and my own flaws. I thought I learned to accept my situation and things that were beyond my control but being stranded at the airport, unable to control anything was very triggering.  That night in the Dallas airport, I got a master lesson in acceptance.

After getting off the plane and realizing I missed my flight to Florida, I called the airline and found out there were no flights to Florida that night.  A flood of emotions rushed through me—fatigue, missing home and my dog, and frustration leading to a silent meltdown in the airport bathroom.  Soon enough, I pulled myself together and reminded myself that I was safe at a major airport. “I got this” I thought.

Sleepless in Dallas

After another call to the airlines I found a flight from Dallas to Gainesville, Florida at 9:30 pm Monday, 24 hours later.  That was unacceptable, I had to be in Florida Monday morning. I asked if there were any earlier flights to any Florida airport.  Jackpot!! I got rebooked on a 7 am flight to Jacksonville, Florida. However, since it was already past 11 pm Sunday, I accepted that I would be sleeping at the Dallas airport that night.

After making my way to the other terminal for my morning flight, I changed into more comfortable clothes and washed my face in the bathroom.  Feeling more comfortable, I scouted out an area where I could safely camp out for the night and managed to get a few hours of sleep.  

Around 6 am, I headed to the gate hoping that my flight was still on schedule – it was!!!  By 6:30 am I was on the plane, fingers crossed that we would take off on time and I would be in Florida before noon. 

After a brief scare (again!) of a slight delay due to storms, we were in the air.  I dozed off for the next two hours, dreaming of finally making it home.  Before I knew it, we landed in Jacksonville and I was with my sister in the car on my way home.

Conclusion

This year’s CleftCon was a whirlwind of emotions, testing my determination, patience and resilience throughout the weekend. Despite the numerous delays and unexpected challenges, I found strength within, drawing on a lifetime of lessons in resilience acceptance and perseverance. Connecting with the cleft community at CleftCon was a powerful reminder of the importance of support and the understanding we have to offer each other.  I was silently reminded that I am not alone in my journey.

As I finally settled into the comfort of home, a cold that kept me in bed for the rest of the week. I realized that the weekend with all its challenges reinforced my belief in the power of community and the importance of embracing each moment, no matter how unpredictable.

CleftCon 2024 was an unforgettable experience and I am looking forward to CleftCon 2025 in Orlando, Florida with renewed optimism and excitement – and best of all, no flights to contend with!