I got lucky. I had a very wise NICU nurse.
Like every new mother, I was overcome by joy, and fear, after giving birth. I couldn’t stop smiling. I also remember thinking “What do I do now? How will I protect this child for a lifetime?”
But my story wasn’t entirely like that of most new moms. In 2016, my baby Lucas was one of the 6,000 American babies born every year with Down syndrome. My husband Jason and I did not know Lucas would have Down syndrome until he was born, and we didn’t know what to do. We were shocked and scared. We were both confused. We didn’t know where we were even supposed to start. That’s when the NICU nurse, who has a stepson with Down syndrome, gave us the advice we live by.
“Always treat Lucas like a typical child,” she said. “Always ask yourself, ‘am I sheltering him because he’s a baby, or because he has Down syndrome? And if it’s the second one, don’t shelter him. Push him out there.’”
Most parents of kids with Down syndrome, including myself, have the opposite instinct. We’re afraid we need to hide our kids. We ask ourselves those scary questions: Will the world love my child if I put him out there? When strangers say my baby is cute, do they mean it, or do they just feel sorry for us? (Spoiler: you shouldn’t worry.)
When Lucas waves to other shoppers in Walmart — like he always does — will they wave back? Will my child’s pictures be “liked” just like my friends’ babies on Facebook? And the most painful question that we try to bury at the back of our minds — will the kids on the playground be nice? Will they play with my child when he asks?
I left the hospital with those words from the NICU nurse ringing in my ear. Even Lucas’ cries couldn’t drown them out — and those cries were loud, even though the doctors said his lungs would be weak.
One day last fall, I got the chance to really live those words. On a whim, I entered Lucas in the contest to be the next Gerber baby. Of course, I believed no child was cuter or had a bigger smile than my Lucas. I shared photos of him and his smile with my friends and family on Facebook constantly. But the minute I hit post on Instagram and entered him in the contest, all the feelings of fear resurfaced. This was the wider world we were talking about. Would the judges immediately dismiss him because of his Down syndrome? Would the internet say mean things? Would people welcome him?
Fast forward six months, and Lucas’ face is now a familiar one to people across the whole world. Lucas has been on The TODAY Show, in newspapers, and in countless articles online. We’ve received supportive letters from families across the country, and instead of just sales promotions, my inbox now overflows with emails from moms and dads wanting to share their stories. You see, in January, we learned that Lucas would be the first ever Gerber baby with Down syndrome.
Our life will return to normal soon. And, truthfully, we will be ready for it. I will be back to picking up toys while The TODAY Show airs, instead of being interviewed on it (and that’s fine too—I was terrified!).
But what won’t go back to “normal,” is how I judged the world, how I view humanity — whether it’s the stranger at Walmart or the other mom pushing her kids on the toddler swing. It’s easy to see the world as a place full of judging eyes, a place that I needed to shelter Lucas from. The reaction to Lucas, however, taught me the world is more full of love than I ever thought possible. Humanity is better than I thought. People weren’t just ready to accept Lucas. They were ready to embrace him. The letters I’ve gotten from so many parents affirm this.
Winning this contest taught our family so much. People are all more similar than different. In three months, those lessons will stick with our family, even as we return to our normal lives. In 10 years, I’ll be able to tell Lucas about this whole experience and let him know how many doors it opened for him. More importantly, I’ll be able to tell him he should take pride in how many lives of children with special needs he changed.
I’m not naive, and I know that Lucas will have to overcome challenges that other kids don’t. Children with Down syndrome, for instance, are usually born with holes in their hearts. Lucas has three. Most children with Down syndrome need open heart surgery before they are four years old. It looks like Lucas may be lucky and not need surgery, but that could always change. I know I will always carry worries that other mothers don’t, but like most moms, I am raising my child for a life when I won’t be at his side. Am I doing enough?
When the times are tough, and I feel like I’m not doing enough, I find comfort knowing the world is rooting for Lucas. Like any mother, I still have fears, but at least I know that the world is a loving place. I know that parents of kids with special needs should put their kids out there.
The world will welcome them with open arms. That NICU nurse’s advice made me a better mom and has given Lucas a better childhood. I hope other moms of kids with special needs will follow her advice. The world needs more smiles like Lucas’.
Cortney Warren is the mother of Lucas Warren. She lives in Dalton, Georgia. March 21 is World Down syndrome Day.