THIS POST WAS PREVIOUSLY FEATURED ON THE MIGHTY: here!
Down syndrome. You more than likely know what that is, and if you couldn’t provide the medical definition, you probably have met someone who was born with it. You’ve probably seen the hashtags, #theluckyfew #nothingdownaboutit #morealikethandifferent. You might remember Becky from Glee. Maybe you have seen “Where Hope Grows.” Or noticed Sofia Sanchez in a Target commercial. Perhaps you’ve read “Expecting Adam” or “Bloom.” In any case, Down syndrome is making its mark in big ways. People are finally catching on to the fact that Down syndrome is a gift.
But while we celebrate the gift that it is today, we need not forget that it always was.
Down syndrome is not something new. Before we were dubbed The Lucky Few and praised publicly for our cute almond-eyed babies and our strides toward inclusion, there were those who came before – so many advocates, parents, siblings, and teachers who weren’t seen as lucky. But who did it anyway. They paved the way for the deserved acceptance of people of all abilities and the celebration of Trisomy 21 that we see all around us. This letter is to those who have parented someone with an extra chromosome long before it was trending on Instagram.
To the parents whose babies were given life 20, 30, 40 years ago –
When you first heard the words “Down syndrome,” you were alone. You were victim to an endless series of “nots,” “probably nots,” and “no ways;” the recipient of a doctors’ bleak prognosis that included the words “mental retardation.” You were digging through library shelves hunting for the book or two that listed the characteristics and outlined the potential of your son or daughter. You were crying – through the pages of the books as you realized what you were up against; as you looked into your child’s eyes and thought, “why me;” as the expectations you had for your child turned into what-ifs. You were stared at. You were shamed. You were asked how this could have happened. And you began to wonder that yourself.
There were no hashtags, no tv shows, no small businesses that celebrated the gift of Down syndrome you now know it to be better than anyone else. You blazed the trail for what you knew could be and what you hoped would be. You fought for your child when doctors, teachers, family, and friends offered unwarranted comments and unfair doubts. You answered both the curious and the outwardly offensive questions as best you could, all while demonstrating grace and compassion. You sought the best therapies and education for your baby when it was all hard to come by. You raised your family to advocate without relent, to love fiercely, to extend patience and understanding.
You were the shout in a sea of ignorance; the voice for the child who nobody cared to listen to.
But now, years later, we’re listening.
And your shouts are making echoes into all parts of the world.
You made organizations, businesses, adoptions, education, careers, and inclusion possible because you fought, you believed, you loved. While ignorance still exists and the roads new families walk are not without challenges, your efforts of choosing life and love are reflected in the way Down syndrome is embraced today. You set the precedent for all the lucky families who would follow after.
We see you, and we thank you.