By Padgett Mozingo
Editor’s note. October is Down syndrome Awareness Month. We will be posting stories, just like this one, all month.
Becoming a parent is a sobering thing. You’re completely responsible for making sure a new little person has everything they need to thrive, grow and learn.
Knowing that little person has something that will make her “different” makes you worry about her having friends, going to school, getting picked on or left out. Knowing that little one will have medical challenges – such as a heart defect – makes your own heart hurt in a way that only parents who’ve been there can truly understand.
Just over three and a half years ago, with nearly four months remaining in our pregnancy, my husband Mark and I learned that the baby we were expecting had a heart defect that would require open heart surgery. That led to a diagnosis of Down syndrome. That was a harsh reality to us in those months. We were angry, hurt, scared and so much more.
But now, three years, five surgeries, countless doctor and therapy visits later, we feel blessed. Although our journey with sweet Lila has not been typical, or easy, it has been filled with purpose. We can face our journey with strength and courage and determination. Lila does it that way – with every step, every therapy session, every exercise, every challenge to work a little harder. And we are all rewarded when she accomplishes something other parents take for granted – drinking from a bottle and now a straw, learning to feed herself, to sit up, to crawl and now to walk and jump.
Lila’s diagnosis doesn’t define her and we won’t let it limit her either. We might have to fight a little harder to make sure others don’t limit her but we know she’s giving it her all so we will too.
Depending on the source, as many as 85% of the babies prediagnosed with Downs are terminated. Thanks to our incredible genetics counselor Peggy Walker, we had compassionate care from the beginning. She put us in touch with Family Connection and others who had walked this path before us.
More importantly, as is the case with any pregnancy, what we could only be assured of was uncertainty. There was no way to know how severe our baby’s health problems would be or what physical or cognitive challenges she would face. But that was no different from when I was pregnant with my 10 year old son. Of course, there was plenty to worry about but, without question, we knew her life was worth everything we could give and that she deserved it as much as any other child.
Today, Lila is a happy, healthy three and a half year old. Sure she has many doctors and spends time each week working with therapists, but she also spends four mornings a week at preschool, loves music and dancing and is eager to give you a high five or tell you hello. Sure she has an extra 21st chromosome that makes her “different,” 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 can certainly share her struggles and accomplishments with others. And others can certainly be more accepting and inclusive – of Lila and of everyone around us who might look or act a little different.
October is Down Syndrome Awareness Month, and Team Lila will spend a Sunday afternoon this month with thousands of others at the Buddy Walk to celebrate the differences in all of us.
We know Lila’s purpose and her life have big meaning, and we hope to share even a small portion of that with others and dispell the myths and limitations falsely associated with Down Syndrome. We know Lila’s life is limitless – just as any child’s should be, surrounded by people who love, support and challenge her!
Editor’s note. Padgett Mozingo describes herself as a mother of two and a Columbia, South Carolina resident.