4/22/1974 - 4/26/2022
Weeks beyond his expected due date, our amazing son Tad was born and together as a young family we took our first steps on a remarkable journey, a life most people could not imagine. A path of lifelong education of disabilities, but more importantly abilities, one of love, joy and meeting challenging obstacles head on, a forever learning experience. Along the way Tad introduced us to the most caring and compassionate people we could have ever known. We learned it is not tears but determination that makes life bearable. Every morning brought optimism, we always had optimism. Oh, we are so grateful Tad had a life, a life he fought for every day and shared with so many. He gave in the most amazing ways, making the very best of his life’s challenges. The devastating rare and progressive epilepsy disease, Lennox-Gastaut Syndrome, stole our son on April 26, 2022, at the age of 48.
Tad was our hero, such a brave and determined individual. He beat the odds of surviving in this difficult world, from the day he was born. We are truly astounded and proud of what he accomplished in his lifetime, a beautiful spirit and soul. He lived an incredible, purposeful and fulfilling life. The longer he lived, the more obstacles he endured, diagnoses of microcephaly, severe epilepsy, LGS, cerebral palsy, and profound intellectual and developmental disabilities, just to name a few. He endured thousands of seizures and all the devastating effects that came with them. Despite all his struggles and life’s milestones that were never met, he led a life beyond his many labels. We never let them get us down, they were only difficult obstacles to be explored and reasons to fight hard, to find a solution of how to deal with or get around them and even to use them to his advantage. Every small gain was celebrated, and failures were learning lessons.
With his rare diagnosis of LGS he taught many, including professionals, more than they ever taught him. Even with all his countless unknowns, one thing is certain, that Tad loved us as much as we did him. He never spent a day on earth not loved and he was cared for by his family in the purest way. He gave a special gift for everyone who had the honor of knowing him. The simplest things made Tad happy. Hearing people laugh and talk, the sound of music, banging on his keyboard and giving us concerts, hanging out with his sister Callie and other relatives, friends, and dedicated caregivers. Even just the act of being included in going places with someone gave him purpose. We believed he deserved the opportunity to live life, to feel life and to thrive, he was included in everything possible that life could imagine for him.
Tad spoke to us through his unforgettable smile and sparkling blue eyes. A way of communication, not with words, but with facial gestures showing joy and even fear of the unknowns. Being non ambulatory didn’t hold him back, he had a strong driving inner desire, a force to participate in his own way. He would maneuver his wheelchair with one foot, pulling himself forward or bouncing it to get where he wanted. He proudly worked a supported job, excitedly delivering lunches and his “Tad’s Farm Fresh Eggs” in his community via his accessible van with the assistance of dedicated support workers. His picture proudly showing his first paycheck was featured on Oregon’s “I Work, We Succeed” poster promoting community jobs for people with intellectual and developmental disabilities.
What a remarkable and amazing life he lived, what a lifelong learning experience he gave to us and those who had the privilege of knowing him. He broke many barriers throughout his life and lived a life beyond his labels. Tad taught us patience, love for who he was, and acceptance of all, no matter their abilities. He really did make the world a better place to live in. We did not just lose our son to LGS, we lost our daily routine, our mind set, our stability and in some ways our purpose. We will continue to advocate for all individuals like our warrior Tad, for a right to live life to its fullest and we will forever support and believe that someday a cure for LGS and its devasting effects will be discovered for the many thousands of beautiful, heroic individuals and their families in the world.
Tad, you are truly loved beyond measure, we are so proud of you. We miss everything about you, longing that you were still here, and we are forever loving and missing you. We know you are dancing in the sky and singing in the angels’ choir and waiting on us. You are a treasured gift embedded in our hearts forever.