With a giddy enthusiasm I showed my friend the simple design: three arrows.
“Do you really want to be bonded for life to these people?” she asked skeptically.
“I already am,” I replied.
Three small arrows: three, to represent the third copy of the 21st chromosome and arrows to represent being pulled back, only to be shot forward. It also represents a transfer of power from us as parents to our children who rise above. It’s called the #theluckyfewtattoo –us parents, being the lucky few.
Of course you don’t feel lucky when you find out. There is a darkness that settles over you. In one foul swoop, all of the the joy that surrounds the birth of a new baby is stolen from you. Instead of exclamations of “Congratulations!” onlookers, with a tear in their eye whisper, “I’m sorry.” Little did we know, we are the lucky few.
But there is a moment, in the journey of every parent of a child with Down syndrome when their heart shows them a different way. Through the darkness, a light shines and we take an oath to choose life, to protect our children and to fight for them with everything we have. We call that moment, grace.
I will never forget that moment of grace the night Ella was born—actually, it was the early morning, before light filled the sky and the world awoke to a new reality. I knew when perhaps nobody else did. Through swollen eyes, I gazed into her almond-shaped beauties and promised to protect her, to love her, and to be her best friend. The ironic part about this vow however, is that in the process of trying to be our child’s greatest ally, teacher and friend, they become ours. Us, the lucky few.
They teach us that life is not about being the fastest, the smartest or the best, but rather, about compassion, patience, and understanding.
On days such as today, World Down Syndrome Day, I always ask myself, what is it that I want people to know? What do I want them to take away from this day? It is easy, within the confines of our home, to think that everything is okay—I know that Ella is fully able and fully loved but I know that outside of our home, that is not the case. People judge her on the shape of her eyes and the way that she speaks. Just this past week, I had a meeting with the Minister of Education, David Eggen, to share our story and how our local schools refused to enroll Ella because of her dis/ability. Together with a few other parents, we fought for a more inclusive school system. But I also know, it doesn’t end here. I know that when Ella has graduates from high school securing employment will be ten times harder for her than the average graduate and I know that between now and then, she will be criticized, judged, made fun of and dehumanized.
I have no desire to change Ella, but I do want to change the world we live in. I want to help people see that individuals with Down syndrome have just as much to contribute as the next person and I want them to see just how lucky we are. Not only because we have a child with Down syndrome but also because with their birth, we were given free admission to one of the greatest tribes I have ever known. A group of parents who love and care for one another, who share in each others’ joys and tears; a group of parents who celebrate with us, our victories and fight alongside us in our trials. My heart fills to overflowing when a new parent joins one of our Facebook groups, perhaps shares how scared they are about their new little baby (sometimes before they are even born) and within hours, literally hundreds of fellow parents post words of encouragement along with a photograph of their little one or when, one of our children grows their wings and my feed lights up with candles and words of condolence.
We are a tribe, on and offline. We are the lucky few and today, I will celebrate with some of these exceptional men and women. Will you join us?