Michael Deauville: A Heart for Challenges
By Susan Marquez
It’s not always easy being Michael Deauville.
What you see on the outside is a handsome young man who is an avid sports fan, enjoys trips to the beach, a college student who has already written and published a book, and someone who is an accomplished speaker. All those things describe Michael, who is in the master’s program at the University of Mississippi. Yet Michael has lived through many trials and tribulations that most children do not experience.
The youngest of three children, Michael was born into a family of challenges. His sister, Katie, was diagnosed with Metachromatic Leukodystrophy (MLD), a genetic disorder which affects the nerves, muscles, select organs and even behavior. Michael’s brother, Robert, has developmental disabilities. Yet the family is grounded in their faith in God which has helped them accept, cope and live with the challenges that come with disabilities. “This is the reality I was born into,” explains Michael. “I didn’t know any different for a long time. My parents are amazing, and we did everything other families did, but I realized later in life that it took much more effort to make that happen.”
Michael grew up enjoying golf, boating, going to the beach with his family, and cheering on his favorite sports teams. He even volunteered at a dedicated program for students and young adults with disabilities.
That experience further strengthened Michael’s faith.
While he never went to counseling of any kind, he began writing his story after having a few talks with a gentleman who mentored him through the process. His writings became a book, A Brother’s Love: Finding His Footprints. “I like to say my life wrote the book,” muses Michael. “It’s a story that blends real life with faith in God. Writing it was a humbling process. Once I started putting it down on paper, the words just flowed.” He hopes his book will increase awareness of disabilities and offer some insight into the daily life of their caregivers.
What Michael has discovered is that there are both blessings and challenges of having siblings with special needs. “I’ve always been very honest about my experiences,” says Michael. “I remember the jealousy I felt when my siblings got special treatment. Or my sister going to the front of the line at theme parks and having characters come up to meet her.” Later in his childhood, Michael experienced embarrassment. “My siblings weren’t like my friends’ siblings and I felt embarrassed by that.”
As he became a young adult, Michael learned to have great respect for his siblings. “Katie is a rock star in my eyes,” he states. One thing his family has taught him is that in the face of adversity, the best course of action is often laughter. He recalls a visit to the Symphony. “There were some pretty snobby ticket holders there and Katie started laughing. We tried everything to get her quiet, but it was like trying to get a baby to stop crying. We all started laughing, because really, humor is a big part of life. My dad and I tend to laugh at just about everything. You can’t take life too seriously.” Michael recalls the time Katie was taken to the hospital and she was laughing in the ICU, making it difficult for medical professionals there to understand that she was actually in distress. “I was trying to get a neuro-evaluation for her. I filled in the doctors on her condition and explained that the baseline for Katie is different.”
Michael ended up in Mississippi because he was “ready for an adventure.”
He spent his freshman year at Ole Miss and says he fell in love with the area. He majored in General Studies with a minor in chemistry, biology and political science. “Siblings of kids with disabilities tend to go into pastoral care, healthcare or law. My goal is to go into healthcare law. I’d like to start a disability planning firm that will advocate for patients.”
Michael says his book will leave readers with a newfound faith in meaning, resilience and hope for tomorrow.