When I went in for my scheduled C-section, I thought I knew exactly how our “daughters” birth story would unfold. Instead, it became the beginning of a journey we never could have imagined.
There were so many unexpected surprises that day that our little boy didn’t even have a name for almost a week. We were expecting a little girl!
After Lucas failed his newborn hearing screening and the doctors noticed his bilateral microtia (underdeveloped outer ears), they began to suspect CHARGE syndrome. During my pregnancy, there had been no indication that anything was different. Overnight, our world changed.
As his mom, I was heartbroken. I spent so much time grieving the future I thought he would have and worrying about all the obstacles he would face. I couldn’t stop thinking about how difficult life might be for him.
Over the next several years, Lucas underwent countless hearing and vision appointments. We learned that being deafblind doesn’t always mean a person has no hearing or no vision. Many individuals with deafblindness, including those with CHARGE syndrome, have varying degrees of both hearing and vision loss. Together, those combined losses create unique challenges in communication, learning, mobility, and understanding the world around them.
For Lucas, something as simple as wearing his hearing aids and glasses has been a huge milestone. Because of his sensory differences, he once struggled to tolerate them. Today, at almost 4 years old, he is beginning to understand that these tools help him connect with the people and world he loves. He now attends an early childhood development program where he is learning, growing, and proudly keeping his glasses and hearing aids on throughout the day.
We have been communicating with other fellow kids around our age and their family members and giving them tips on how to keep glasses, hearing aids on and even use other forms of communication!
Watching him gain confidence and independence has been one of the greatest joys of our lives. This DeafBlind Awareness Week, we celebrate Lucas, not because his journey has been easy, but because he reminds us every day that progress looks different for every child. Every small victory deserves to be celebrated. To every family just beginning their CHARGE syndrome or deafblind journey. there will be hard days, but there will also be moments that fill your heart in ways you never expected. Lucas has taught us that his diagnosis does not define his potential. He continues to surprise us every single day, and we can’t wait to see where his journey takes us!
