by Erin Doyle Toburen
Elvis arrived in blue suede shoes, aviators, and a jumpsuit shortly before the end of my freshman year of college. Already the parents of four children – ages 10 through 18 – the thought of an infant was a decade removed from my parents’ mind when they found themselves unexpectedly expecting. On that April morning when the baby arrived, my father called me to announce the baby’s arrival.
It was a boy, he said, his name is Liam, but – but – he arrived with an extra chromosome. He arrived smaller than his older two brothers had, but little did we know, his entrance would rock our world. As a college Freshman, I drove six hours home from Steubenville, Ohio, with my college roommate to meet my brother in the NICU. His short visit in the NICU due to a heart murmur for only five days after birth gave us our first glimpse into this beautiful life we had now been given.
A few weeks after returning to college, I sat in a meeting with my sorority sisters where our sorority mother in her mid-thirties brought her adult sister with her. Her sister, born with Down syndrome, was vibrant and beautiful. I bawled. I had not yet grieved over the lost expectation of a sibling born without an extra chromosome. Ashamed because I knew my sorority sisters knew why I was bawling only increased my flood of tears. Our sorority mother soon became my personal mentor, sharing with me who her sister was, how her sister influenced her life, and how her sister was not defined by the fact she was born with Down syndrome. Sixteen years later, I am still grateful to my sorority mother.
“Down syndrome” slowly settled itself into our family’s vernacular and questions swirled. “Down syndrome” – would he go to college? “Down syndrome” – would he be able to talk? “Down syndrome” – would he be able to walk? “Down syndrome” – what does that even mean? “Down syndrome” – what would be his life’s trajectory?
Like everything else in life that is considered outside the everyday “normal,” people began asking questions they should not and voicing opinions they should not. When we mentioned that our youngest brother was born with Down syndrome, people sometimes made the trite (albeit well-meaning) comments such as: “God only sends children like “that” to “special” families, so you must have a special family” or even the suggestion that people born with Down syndrome could be healed “from” Down syndrome, perhaps suggesting my brother could be “healed.” Such well-meaning comments failed to see the reality in which my brother lives. They did not see the three-month struggle my mother went through before he would latch while nursing. They did not see how Celiac’s Disease, a common condition in people born with Down syndrome, impacts his daily life. Most importantly, such comments failed to account for the fact that Down syndrome never defined him, rather Liam would define his own life and influence those around him.
Liam would help influence some of most important decisions in my life. As a college intern for the U.S. State Department, I dreamed of one day becoming a foreign service officer. The adventure, travel, and importance of the diplomatic mission called to me, but Liam called stronger. I knew if I chose a career in the foreign service, I would spend much of my life away from Liam so I chose law school to keep me stateside. I chose Saint Louis University, because it was only a day’s drive from Liam.
My career eventually brought me back home to West Michigan where I practice in-house international corporate law and live five miles from Liam. Living so close to Liam has given me front-row seats to witness the symphony Liam has composed with his life. His symphony crescendos with his gregarious personality, pauses at his thoughtfulness and is driven by his incredible work ethic and Elvis. Oh, so much, Elvis.
When Liam was thirteen, he began watching reruns of Full House like it was his full-time job. His favorite character soon became Uncle Jesse. Liam talked of nothing but Uncle Jesse for months. He would recite entire story lines and facts about Uncle Jesse to anyone who was willing to listen to his two-hour monologues (Thank you, Carl!). Uncle Jesse was suave. Uncle Jesse liked music. Uncle Jesse loved Elvis.
One thing led to another and Liam soon forgot Uncle Jesse. Liam only talked about Elvis. Elvis’s horse, Elvis’s history, the nuances of the Elvis-Priscilla relationship, and Graceland. If you wanted to listen to music around Liam, it had to be Elvis, and, for the first and only time in his eyes, Liam thought I, his older sister, was cool because I wore aviator sunglasses like Elvis.
Like the Full House era, our family hoped Elvis was simply a phase. My dad complained about Elvis every time someone mentioned him. My parents spent their honeymoon driving through the Upper Peninsula of Michigan in August of 1977 when Elvis died and the only thing one could hear on the radio was Elvis music. Unlike the Full House era, Elvis was a new way of life.
When Liam’s quest for all-things Elvis could not be satiated by historical facts or the Sirius-XM Elvis station being played 24-hours a day, Liam decided he wanted to become a real-life Elvis Tribute Artist (“ETA”), and an ETA he has become. For the past several years, Liam has taken dance and music lessons to improve his voice and stage presence. He practices every day – sometimes for hours – at our farm on his music. He entertains his seven nieces and nephews with his music and dancing to make sure they get to see him realize his dream someday. He beams with pride when my three-year-old daughter insists on calling him “Uncle Elvis.”
His inspiration for his hard work and drive has been the ETAs he has met over the past several years at the various events my parents traveled around the country taking him to see. The first of these was Elvis Tribute Artist Jake Slater my mother and Liam met while vacationing in Northern Michigan.
Thanks to Mr. Slater and the other ETAs who have inspired him Liam began performing to large audiences in 2019. Last April, Mr. Slater performed at Liam’s sixteenth birthday party and let Liam sing alongside him in front of over a hundred people. In July, Liam attended the Graceland Performing Arts Camp at Graceland where he met other Elvis fans for the second summer in a row and made friends across the country. Then in October, Liam made his YouTube.com debut when he performed “Peace in the Valley” at the 27th Annual Elvis Annual Fantasy Festival in Portage, Indiana. The proceeds from the event benefited the Porter County Special Olympics. Liam has since performed at company Christmas parties, represented Elvis fashion at the National Association for Down syndrome Fashion Show in Chicago, and sang at a wedding.
Thanks to Elvis, Liam keeps in shape so as not to hinder his chances of someday competing to become an Ultimate Elvis Tribute Artist. Thanks to Elvis, Liam tells us that he loves performing because he likes to make people happy and make the world a brighter place. Thanks to Elvis, Liam constantly reminds us that our chromosomes do not define us. Thanks to Elvis, Liam is determining his own life’s trajectory. Thanks to Elvis, Liam has found his voice.
Erin Doyle Toburen is an inhouse corporate attorney who resides in West Michigan and enjoys (trying) to keep up with her large family, writing, and riding a retired Amish horse named Reudi.
