CLOSE-UP OF LITTLE GIRL WITH DOWN SYNDROME

My Daughter With Down Syndrome Isn't 'Special'


As parents of four wonderful children, one of whom has Down syndrome, we are often at doctor’s visits. Typically, folks in the waiting room like to chit-chat. But when we have Noelle bouncing on our knee the conversation sometimes goes to: “Does she have Down Syndrome?”

Noelle is just 13 months old, so we’re not too versed in all the ways we could (maybe should) be offended by strangers and their inquiries. Sometimes we feel like folks are just curious. Other times, they follow-up with something that makes their insensitivity obvious.

Like today:

My wife: “Yes, she does. Her name is Noelle.”

Stranger: “Oh, she’s so cute. I’ve seen much worse.”

My wife: [awkward silence]

In retrospect, maybe that was a teachable moment. Maybe when we’ve been parents to Noelle for a decade we’ll have pithy remarks at the end of our tongues. One day we’ll know how to help this person understand she wasn’t being helpful at all. But today, we choose awkward silence.

 

In our house Noelle isn’t “special.” She’s the youngest of four. She gets all the attention the youngest of four could possibly get — which sometimes can be very little. She wears the same hand-me-downs our third had before her. She eats the same homemade mashed up fruit/oats my wife made all our kids when they were that age. She doesn’t have her own room, and we don’t drown her with toys and clothes to make ourselves feel like we’re doing something special for her. When I refer to her with colleagues I say “our littlest one,” and they never ask “the one with Down syndrome?” She’s just Noelle, and she’s our fourth and we love her to death.

That we love her to death is really the most important thing I want people to know about her right now. Whether or not her condition is “worse” or “better” than others is irrelevant. Whether her heart and lungs will need another surgery when she’s a teenager isn’t ultimately a more important question than whether my 10-year girl will survive the onset of puberty or not, or my boy learns to lose board games without crying. Each of our kids have their own needs, and we take each need and child seriously with healthy doses of exerted love.

We read plenty about parents of children with Down syndrome. There are so many inspiring stories from parents who really advocate for change in their schools or push legislation for all kids with disabilities. We often feel slightly guilty by just passively continuing to be Noelle’s parents without all that fervor. I’m thankful there are those parents in the world. Right now, I’m not one of them. Loving and parenting Noelle is a full-time job for both of us, and we have three other kids to love and manage as well. Maybe one day we’ll be disability rights champions, but today we’re just Noelle’s champions.

When someone sees Noelle and judges her by her appearance I’m really sad for them, because despite what they might have seen before, they’ve never seen Noelle. She does love to smile, but she makes her will known clearly. She adores her bigger siblings, until they get too much in her space. But she’s just 13 months old and not ready to fit in a box before her full personality is even realized.

In retrospect, there’s plenty I could have said to that stranger. I could have taken a deep breath and drilled her with guilt and shame, or simply politely put her in her place. But that doesn’t help me parent Noelle better. We don’t need to shame people who don’t get it, but show them instead how Down syndrome doesn’t define her — our family’s love for her does (as it does all our kids).

Being a parent to a child with Down syndrome is new to us, but being a parent is not. We’re leaning on what we know and so far it’s working just fine for her and for our kids.

When she was in the womb and we told our kids about her condition, they naturally asked, “What does that mean?” We just said, “It means she’s your sister, and we love her. She’ll learn things a little more slowly but she’ll have her own whole personality and favorite things and we’ll have to figure her out just like we did with you guys.”

I don’t want her condition to be invisible, that’s not what I mean when I say she’s not “special.” I feel like she’s got all kinds of mysteries and hidden personality traits that we’ll uncover in her as she grows at her own pace. And I wish others would be attracted to get to know who she is, too, rather than put her in a box based on what they think they already know about Down syndrome.

At the end of the day, we aren’t called to change the world to see Noelle as we see her. We aren’t responsible for changing people’s minds or forcing them to check themselves. We do feel called though, to love Noelle, just as she is.

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