The news that my niece Lucía had been born with Down syndrome took all of us by surprise. Doctors had not anticipated any sort of issue, tests during pregnancy had revealed nothing was off. My first reaction was worry. That consternation grew as we started to find out the health problems Lucía was suffering, very common for kids with Down syndrome.
During that time, my youngest son wasn't even a month old. My brother and I were separated by thousands of miles and circumstances didn't allow me to just get on a plane and go help. But calm came from the person we thought would need the most support: my sister-in-law, the bravest of the brave mamás Latinas that I know.
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Her attitude then was the same one that she has today and that she posted for all to see as her status update on her Facebook: "Happy World Down Syndrome Day! Celebrating and thankful for the pleasure of enjoying my Luci, the greatest and most beautiful surprise gift of my life." She once told me while I was visiting them in Galicia, Spain, where they live: "To me, when they told me she had Down syndrome, it's as if they would have told me she had brown eyes, or that she was blond … it was just a part of who she is, not everything that she is."
I didn't meet little Lucía until she was 4 years old, and it wasn't under the best of circumstances. I was taking my dad, diminished with cancer, to find a miracle or meet with death in his native country, the one he had left behind 17 years earlier to head to Venezuela.
I have to admit, I was a little nervous about meeting my little niece–but every single doubt I had about her and how I was supposed to treat her disappeared the moment that I went to pick her up at school with my brother. She grabbed my hand as if she had known me forever and we spent those four days together, the best of friends. Because Lucía is so incredibly fun, warm, loving, brave, creative, amazing, that honestly I was even thankful that she's not like the rest of us–that is, when you actually do remember that she is special.
It's her emotions and her love–they're unfiltered, unadulterated. She gives herself fully, all the time. It's a privilege to have her be a part of our family, to know that we're related to someone like her. She's the essence of what is the best in humanity. She represents the purest and most beautiful feelings, and that's what she brings out of everyone else. Her little sister, Sofía, is an example of love and patience. Both of them are amazingly loved little girls–and they're amazing human beings.
I don't want you to think through my story that having a special needs child is easy–it's not. The time, money, effort that is spent raising a child with special needs isn't even comparable to the constant heavy heart, with each look from other kids in the park, some of pity from other parents. And especially, the worry we feel about her present and her future, which creeps up even in those moments when you're at your highest.
Never mind all that, though. Today is World Down Syndrome Day, and in my Luci's house, today and every single day of the year is celebrated with all the happiness in the world.
Image via Joseerre Fernández and Aracelis Ortegano
