Kokomo resident Monica Bush remembers finding out at her 19-week ultrasound appointment that her now 12-year-old son, Henry, would be born with a cleft. Since then she has devoted herself to educating other families and advocating for them, through organizations like Cleft Con, Smile Train’s Cleft Community Advisory Council, as well as Legendary Smiles, which Bush founded.
As the world’s largest cleft charity, Smile Train organizes Cleft Con, an honest, immersive and interactive experience for the entire cleft community. In one day, participants learn from experts on the issues that affect those with cleft, from the emotional and medical to the logistical. Attendees participate in roundtable discussions with others who have been there, and leave with new strategies for tackling tough topics and educating others – and new friends for life.
“I always knew about Smile Train, but the first time I heard about Cleft Con was through the worldwide Cleft Mom Support Facebook page in 2020,” Bush says. “I had been to other conferences in the past both at Riley Hospital for Children and through the America Cleft Palate Association, and as a cleft mom myself, I really see the value in continuing education and gaining understanding about all of the different aspects of cleft.”
Additionally, Cleft Con aims to reduce the stigma and open up hard conversations surrounding cleft issues, like dating and mental health.
The nonprofit Bush founded in 2020, Legendary Smiles, bridges the gap between hospitals and the families they work with in the cleft and craniofacial community. The group connects families through their website and social media platform, and helps parents and caregivers learn about and view helpful resources.
“I saw this gap and that’s what motivated me to start Legendary Smiles,” Bush says. “There’s a cleft FAQ section on what to ask your cleft team, inspirational stories, and a glossary of cleft terms – all of these things you have to navigate in the beginning to understand what your child is going through.”
Legendary Smiles was still newly formed when she reached out to Smile Train with insurance questions, which landed Bush on a Zoom call with the Smile Train CEO and president.
“Going from Legendary Smiles not being known to being listed as a community partner was amazing,” she says. “From there I started serving on the Cleft Community Advisory Council through Smile Train and learning about their different initiatives at our monthly meetings.”
At this point, Bush is serving her fourth term and has had the opportunity to attend Cleft Con in New York City and Houston. She also makes sure to attend the virtual events that take place in November, and tries and get the families she works with in Indiana to attend because she realizes not everyone is able to travel.
Being on the cleft journey has made Bush a more compassionate, stronger person, as well as a better mom.
Like many born with a cleft (and the most important reason why Bush does what she does), Henry has been through endless appointments, surgeries and therapy. Today he is thriving.
“He loves different kinds of music and plays baritone in the band, which is a huge deal with anyone cleft affected,” she says. “He loves camping with his dad, Jason, at Dad Camp, and also volunteers his time on the weekends to go out and serve others who are camping. I’m really proud of my kids for all of the things they’re doing, from marching band to soccer. Being their mom is very rewarding, and I love getting to know their personalities and interests more through the years and helping guide them with big decisions.”
Bush is proud of the work she’s doing in the cleft community, but is more proud of her children, and appreciative of her husband for the support.
“I appreciate my husband so much for being there for everything, between the mundane things and the highly stressful situations that are part of the cleft journey,” Bush says.
