Nearly 20 years ago, Allen and I were pregnant with our first son. At our 4-month ultrasound, we learned our baby had a bilateral cleft lip and palate. We knew nothing about this condition and did our best to prepare. There was a lot of fear about what a facial difference would mean for our child and what impact the surgeries would have on his life. Our large family came together to protect and cushion him as best we could but we quickly learned a few things.
A Born Leader
Because we were the adults, we expected to lead Henry through all of this. But that is not what happened! Even from his first major surgery at 8 weeks old, Henry surprised us all by leading the way. What we didn’t realize, in all those months of worry and preparation as we awaited his arrival in November of 1999, was that we were growing a uniquely strong human who tended toward leadership. A natural leader.
He led us through every surgery with his bravery and courage. He showed us what it means to be patient in the face of great pain and what resilience really looks like. This is partly because he didn’t know any other reality, of course. But a lot because of who he is at his core. That coupled with the fact that he was nurtured to be a leader. He is the first grandchild on both sides and was encouraged to lead the way for his cousins and siblings. Many people in his family are in leadership positions. It’s a trait he values, takes seriously and seeks out in others.
Turning Challenges into Life Lessons
While we gave him all of our support, encouragement, and love, there were some harsh realities from which we could not completely protect him. With such an enormous support system, we didn’t anticipate Henry’s feelings of isolation. But those feelings were there and they were very real. He was the only person he knew- the only person any of us knew, with a cleft. He had no one with whom he could relate who really understood what it was like to have a Cleft, who knew what it was like to go through the surgeries or to deal with the challenges he faced. We wanted to connect him with other kids with Clefts but we were told that privacy rules prohibited doctors from sharing the contact information of the other patients in the craniofacial center.
As he continued to grow, Henry experienced serious surgical complications, countless rude interactions with strangers, and bullying - again, from which we could not fully protect him. But, from all of these challenges came enormous and earned life-lessons. He could’ve folded inward from the weight of it all, and he was definitely tested- but instead, Henry found a positive path forward.
He used each challenge to steer and inform his next steps and future life direction - having earned a deep compassion for others who didn’t have it easy. Henry chose to use the pain and difficulties he encountered in his early life as fuel for what became his life’s mission: to create a safe space for people with Clefts so no one else would have to experience the loneliness and isolation he had felt. He sought to turn what had felt like a negative into a positive by encouraging people to let go of feeling ashamed and instead to be proud of what makes them different.
“My Cleft is what makes me special and I am CleftProud”
So, from my perspective- and by the way- it is the honor of my life to be his and his brother’s mother- it has been the combination of those two things; the ways he allowed himself to grow, learn and deepen in response to this challenge of having a Cleft, and his very nature of being a leader– that combined and led him to the creation of CleftProud.
Now, when I see kids who are the ages that Henry was when he had no one to turn to, who are proudly posting their stories on CleftProud- literally saying “My Cleft is what makes me special and I am CleftProud” I am astounded by the community Henry envisioned and launched.
We are beyond proud of Henry for overseeing and facilitating everything that IS CleftProud in addition to starting college with an eye toward finding additional ways to grow this community to reach as many people as possible. The sky is the limit and we can’t wait to see where he leads us next.
- Holly Baddour