Columbia, SC — Becoming a parent is sobering. You’re completely responsible for making sure someone has everything needed to grow and learn. Knowing she’s “different” makes you worry about her having friends, going to school, getting picked on or left out. Knowing she has medical challenges makes your heart ache.
In 2011, we learned the baby we were expecting had a heart defect that would require open-heart surgery. That led to a diagnosis of Down Syndrome. We were angry and scared. But now, two years, five surgeries, countless doctor and therapy visits later, we feel blessed.
Although our journey has not been typical, or easy, we face it with determination. Lila does it that way — with every step, therapy session or challenge to work harder. And we’re rewarded when she accomplishes what other parents take for granted.
We won’t let Lila’s diagnosis limit her, and we’ll work hard to make sure others don’t either.
As many as 85 percent of babies prediagnosed with Down are terminated. That’s a personal decision, but one that should at least be made with accurate information. Thanks to our genetics counselor Peggy Walker, we had compassionate care from the beginning. She put us in touch with Family Connection and others who’ve walked this path before us.
We couldn’t know how severe our baby’s health problems would be or what physical or cognitive challenges she’d face, but we knew her life was worth everything we could give and that she deserved that as much as any child.
Today, Lila is happy and healthy. She works with therapists weekly, but she also spends two mornings a week at preschool, loves music and dancing and is eager to give you a high five or proudly tell you she’s 2. She has an extra 21st chromosome, but she also has bright blue eyes and a smile that lifts even the lowest of spirits. If she can embrace life with such enthusiasm, we certainly can share her struggles and accomplishments. And others certainly can be more accepting and inclusive — of Lila and everyone who might look or act differently.
We know Lila’s life has big meaning, and we hope to share that with others to dispel the myths and limitations often associated with Down Syndrome. We know she is limitless — just as any child should be when surrounded by people who love, support and challenge her.