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Two families talk about what having Down syndrome means to them.

Transcription:

“Do you want to say hi? Hi!”

“Do we get along good?”
“Yeah.”
“We do?”
“Yeah, remember?
“All the time?”
“Yeah, all the time. All the time. Sometimes.”
“Sometimes!”

Cindy & Calie
Gayle & Melissa

What makes you proud?

“I have Down syndrome. All the time.”
“That makes you proud?”
“Yeah.”
“Good. I think I’m just the proudest of her because she’s really come out of her shell a lot because of, you know, the communication issue’s really difficult for her. But now she gets up on stage and gives a speech in front of a whole auditorium of people where she could never really do that before.”

“She’s 5. Her only word right now is “Dada.” I, from day one, have really wanted to hear her say, “Mama” and talk. She and I practice writing, every day after school, and she was writing, and she just looked at me and said “E.” And I was shocked that she’s trying. I’m excited, and I’m, I mean I’m proud of everything she does, but I’m extra proud that she’s taking that next step.”

What are your dreams?

“What do you want to be?”
“Model. Yeah, model or I’ll be at [a] pageant, I’ll be queen.”
“Get married?”
“Yeah, married.”
“Well I would like to see her have a, you know, at least one modeling job. I hope she does end up getting married and having her own apartment. I hope that she can have a life that’s her own, that’s not carved out by what I decide for her to do.”

“I really want her to be happy. I just want her to be happy. I don’t care what she does. If she wants to be a garbage man, if she’s happy doing it, I say cool. If she wants to be her own writer and write little books you know, and illustrate them cool and if she wants to become an expert movie watcher and popcorn eater, I’m OK with that too.”

What would you tell new parents whose baby has Down syndrome?

“I see a lot of parents now so worried, you know, “When does your child walk?” “When does your child talk?” “When was your child potty-trained?” Then you’re not really enjoying the moment and living for today. And I think that would be my biggest advice, just to live for today.”

“And today you have this beautiful baby. I can understand the fear of the unknown and the fear of what ifs” but just love them. They’re your baby, you just had this baby, it’s like how do you not love a baby?”

It’s time to celebrate Down syndrome.

Originally published: March 20, 2018
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