Lexi's Story
The Heart Behind My Passion for Helping Others
Psychologists describe peak experiences as transcendental moments of pure joy, fulfillment, and elation. I have been fortunate to experience many meaningful moments throughout my life, but there are a few that have forever changed me, strengthened my character, and shaped the person I am today.
My daughter, Lexi, gave me many of those moments.
Every day I was blessed to have with Lexi was meaningful. Our journey included the challenges of her extraordinary medical condition, but it also included the beautiful and familiar moments of babyhood and the toddler years—the moments that every parent cherishes.
Lexi was beautiful, strong, and tenacious. At times, she may have appeared fragile, but those fortunate enough to truly know her quickly learned otherwise. Lexi could never have survived—and thrived—the way she did for four and a half years if she had been delicate.
She was an extraordinary force.
Her birth was one of those unforgettable peak moments. It far outweighed the fear and uncertainty that came with learning she had been diagnosed with semi-lobar holoprosencephaly, a rare condition in which portions of the brain, specifically the frontal lobes, are partially fused.
On January 14, 2000, at 8:00 a.m., during the Year of the Dragon, Lexi entered the world with Apgar scores of 9 and 10.
Within her first day of life, however, our journey took an unexpected turn. After being bathed by a nurse, Lexi stopped breathing. We later learned that she had severe nasal narrowing, which restricted her airflow when she cried during her first bath.
She was not expected to leave the NICU.
But 14 days later, she did.
Lexi was not simply a survivor. She was an extraordinary force.
She loved the water—whether she was swimming or taking a bath. She loved to swing and feel the wind tickle her cheeks. One of my favorite things was watching the peaceful expression on her face as she swung.
She became excited when she was around other children. She relaxed to the soothing sounds of Enya and Norah Jones, yet could also "jam out" with gleeful enthusiasm to Linkin Park.
Lexi continued to defy expectations.
She never needed a feeding tube and enjoyed some of her favorite table foods, including bananas, whipped cream, and spaghetti. She persevered through seizures, continued to make developmental progress at home and preschool, and was learning to communicate using adaptive technology. She was also learning to walk with adaptive equipment.
Her beautiful, big blue eyes revealed what I often believed was a wise soul beyond her years. I would stare into them and somehow feel empowered to accomplish anything.
Her long, wavy brown hair framed her determined and stubborn personality. Her strong lungs made sure everyone knew when she was happy, excited, frustrated, or simply finished with a particular situation.
Lexi had a way of communicating without saying a word.
She was deeply loved, and I believe she came into this world with an extraordinary purpose. Everyone who knew Lexi was touched by her. Some were initially frightened by what they did not understand. Many were simply in awe.
Lexi was a magnet of great force. She drew family members, friends, caregivers, teachers, and even strangers together. She inspired the people around her to move the mountains she could not physically move herself.
And she left a lasting imprint on every life she touched.
Just after her third birthday, Lexi and I were enjoying some quiet time alone together. She was sitting in our leather recliner, surrounded by an abundance of soft, fluffy stuffed animals. She had just had a bath and was freshly dressed. It was early in the day, and everything felt peaceful.
She was simply too precious for words, so I reached for my camera.
I wanted to capture the moment forever.
It was a good day.
As I snapped photographs, I talked to Lexi and made silly faces and animations to entertain her. She followed me with those beautiful blue eyes and seemed amused by my efforts.
Then we caught each other's gaze.
Our eyes locked.
And in that moment, I saw it.
Lexi gave me her biggest—and what I believe was her first—smile.
That moment will forever be one of the greatest peak experiences of my life.
Lexi taught me more about strength, perseverance, compassion, patience, and unconditional love than I could ever have imagined. She taught me that behind every challenge is a person, a family, and a story that deserves to be heard.
Her life continues to influence the way I approach my own.
Today, my passion for helping others is rooted in those experiences. I understand that life can change unexpectedly and that navigating important decisions can sometimes feel overwhelming. Whether someone is facing questions about their healthcare, insurance coverage, financial protection, or the future, I believe every person deserves to be treated with patience, compassion, dignity, and respect.
Lexi taught me to look beyond circumstances and truly see the person.
She taught me to listen.
She taught me to persevere.
And she taught me that sometimes the greatest impact we have on others comes simply from caring enough to help.
Her life may have been short, but her impact continues to be immeasurable.
Lexi will always be one of the greatest reasons behind my passion and dedication to helping others.
