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What I Wanted to Tell the People Who May Not Understand Down Syndrome

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Our daughter Jordan Grace had her six-month hearing test appointment. As we waited in the lobby, I got her out of the stroller so she could sit with us.

A little girl was getting closer and closer to us as we sat there, Ana Maria, my oldest, was watching her with a smile. I saw the little girl’s mother look at my daughter but not really see her. I know this because of what happened next. She called her daughter’s name with a panicked voice, but her daughter wouldn’t go back. In fact, she kept coming closer to us. Her mom stood up and grabbed her and held her close as if she was protecting her.

Ana Maria looked at me with a puzzled look and shrugged her shoulders.

You see, she wished, prayed and begged for a little sister, and when Jordan Grace came to us, she told us she was perfect.

When we told her she was different, she told us, “So what.” When we said it might take her longer to learn, she said, “I will help her.” When we said people might make fun of her or bully her, she said, “I will protect her.” When we said some people may say hurtful things, she said, “I will teach others about her.”

Today, I did not want to bring light to what happened, not because I didn’t think my 8-year-old Ana Maria wouldn’t understand, but because I didn’t want her precious heart to hurt the way mine did.

Though I tried to ignore the whole situation, my heart felt pain for that family. Not for me, not for us, but for them. Because they may not understand Down syndrome, they may not have known what to say or do.

I wanted to tell them Jordan Grace is the friendliest, happiest, most loving baby girl they will ever meet.

I wanted to tell them she would want to put her arms around them and show them an amazing kind of love, because hugs are literally her favorite thing in the world.

The author's daughter, standing in front of a tree with her arms open

I wanted to tell them she could make them laugh until they cry because she’s such a funny girl.

I wanted to tell them she’s our hero because she has endured so much in her short life.

I wanted to tell them she has opened up our hearts and filled them with unconditional and true love.

The author's daughters, holding hands and walking through a park

But I didn’t. I didn’t tell them because even if I had, they may never understand our life. Even if I tried, it wouldn’t even begin to do our life justice. Or to open up their hearts in the same way ours have been opened and given love to the point where it feels like they’re bursting.

When our appointment was finished, we walked over to the gift shop to show Ana Maria that our book, “A Princess Wish,” was displayed in the window.

My heart felt better because though it may take longer for people to learn about Down syndrome and the lovely people in our community, we have done our part to share our story with the world.

I feel like I failed at that moment to teach and educate. I may not be able to have each individual walk in our shoes, but I will continue to be an advocate for my daughter and for her friends with Down syndrome.

Originally published: September 15, 2016
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