How My Niece With Down Syndrome Taught Me How to Live

How My Niece With Down Syndrome Taught Me How to Live
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"God put Down syndrome people on earth to show the rest of us what a**holes we are."

The comment--from my best friend--made me laugh at a time when nothing was funny. I'd just found out that my niece had been born--unexpectedly--with an extra 21st chromosome, and I was filled with fear.

Carly, a beautiful blond, blue-eyed angel--was rushed to emergency surgery days after her early delivery to fix a hole in her heart (common in kids with Down). She lived for the first year of her life with a feeding tube. She has undergone speech therapy and physical therapy and occupational therapy, and every kind of therapy you can imagine.

From the moment of her birth, I worried about the problems and difficulties that a special-needs child would face, about the impact for my brother and his wife, for their son, for our family.

And yet through all of her challenges, the ways that life has been harder on her than it is for many of us, at age thirteen not only has Carly taken it all in stride, but true to my friend's prediction, she's brought our family more joy than we could ever have imagined, and taught us some unexpected lessons about living life fully--simply by being herself.

Be less self-conscious: Carly loves music. No matter where she is, no matter the occasion--a sporting event, the middle of a store, church--she's liable to break into dance anytime she hears it (even if only in her head). What's more, she prefers it if we all join in. Which we often do--because that kind of joy is infectious. Lesson: Who cares if people think the family getting jiggy with it in aisle ten look weird? Dance like no one's watching.

Don't be so timid. My niece has never met a stranger. Wherever she is, no matter how large the crowd, she's liable to be smack in the middle of it, like a cruise director to the world. At a holiday when Carly was about eight, she took my phone and plunged into the crowd, chatting with everyone before convincing them to let her take a picture--of the inside of their mouths, I later discovered when I checked my SIM card. With Carly, there's no such thing as shy, and everyone responds to her genuine delight in meeting people. Lesson: Everyone's a potential friend. Just get out there and fly your flag.

Don't give up so easily. One afternoon when her mom told her not to go into the basement game room where her older brother and his friends were playing video games, I watched Carly spend the next half hour badgering, pestering, and cajoling her, trying to wear her down. "Carly, I told you no!" her mother finally snapped, frustrated. To which my niece, undaunted, simply gave a why-are-you-making-this-so-hard-for-both-of-us sigh and said, "Mom, just let me." And, worn out, my sister-in-law finally caved. My niece knows what she wants, and she goes after it relentlessly. Lesson: if you really, really want something, don't let up till you get it.

Don't be such a baby: A lot of Down kids have a high pain threshold, and Carly's no exception. Nothing seems to faze her--no matter what tumble she takes, she gets right back up and carries on playing, tough as a tank. Lesson: Shake off the pain and carry on.

Be more self-confident. "You're beautiful," we frequently tell my niece--because she is. Carly's usual response is a nod of acknowledgment and, "Yeah." We're not telling her anything she doesn't know. She's not worried about her appearance, or her abilities, or her likability: Carly just does her thing. Whether it's dressing up in a sparkly gown and pink cowboy boots (she has), being on a bowling league (she is), or horseback riding (she does), she believes in herself, all the time. When she took several gold medals in equestrian events at last year's Special Olympics, she stood proudly on the podium with one hip cocked, her hand propped on it, as if to say, "Yeah, I am all that." And she is. Lesson: Don't be afraid to love yourself, just as you are.

Be more present: Sometimes my niece will take my face into her hands, look into my eyes, and sweetly tell me, "You're my favorite." As she has done with every single other member of our family, we later discovered when we compared notes. But it's true--in that moment, whoever she's having fun with at the time fills up her heart and is the one she loves the most. Like a lot of Down children, Carly lives firmly in the "now." Lesson: Be true to yourself in every moment--and don't worry if that's not the same in the next moment.

Be freer with your affections: Last Christmas dinner my husband had to eat with one hand--because Carly, who has decided he actually is her favorite, sat holding his other one throughout the meal. She is liable to throw herself on my sister on the sofa, kissing all over her cheeks, or lean her head on my mother's shoulder and melt into her as they watch television together. One night on one of my visits, when I went up to tuck her in--every night she likes someone to lie with her before bed--she reached up to cup my face and told me tenderly, "I love you, Aunt." Lesson: Love is everything. Don't be afraid to show it.

Phoebe Fox is the author of the Breakup Doctor series (from Henery Press). You can find her at, or on Twitter @PhoebeFoxAuthor.

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