"I don't want Down syndrome," my 12-year-old daughter, D'Andra, told me one hot summer day. "I want it to go away, Mom," she said. I shook my head and told her that I couldn't tell an extra monochrome to disappear.
"There isn't any medicine that you can take to be healed of Down syndrome," I said. “Down syndrome is not a disease. You have an extra chromosome in your DNA. This isn't something that can be surgically removed.”
She added, "I want to be tall and blonde like Destiny. I don't like Down syndrome."
D'Andra is 4'10" and 155 lbs. at 13 years old. Her friend Destiny is 5'10," 110 lbs with blonde hair and blue eyes.
D'Andra has crazy curly black hair, beautiful bronze skin and brown eyes, but she is officially obese according to U.S. health standards.
Obesity is typical for people with Down syndrome. Her doctor has banned her favorite food -- hamburgers, fries and soda -- from her diet. Plus she can't eat bagels and cream cheese, chips, cookies, pastries or anything that she considers delicious.
When I read a news story posted on my Facebook timeline that Madeline Stuart, an 18-year-old girl with Down syndrome, lost 44 lbs and is trying to break into modeling, I thought I was reading an Internet hoax. I clicked through and was delighted to learn that Madeline is a young woman who is defying our cultural definition of beauty.
I did have to wonder how much Madeline's mom had to do with her push to lose weight and desire to model. I hope that her mom isn't a wannabee model or manic stage mom who put Madeline on a diet.
Where Madeline got her "internal inspiration" has me questioning her thought process related to her body image. Her mom saying that she thinks it's time for people to realize that people with Down syndrome can be sexy and beautiful struck me as creepy.
While I cautiously celebrate Madeline's foray into modeling, I never want my daughter (who already doesn't like being short and curvy) to despise herself. D'Andra has stopped eating hamburgers and fries and drinking sodas. She has started walking to lose weight. But she has told me when she is premenstrual that she hates herself and doesn't want to live.
My family constantly encourages her, but the fact that the messages pushed by marketing and media insinuating that she is ugly and overweight make her hate herself or want to die is disturbing.
I want D'Andra to know that she is beautiful right now in her own skin. I applaud Madeline for losing 40 lbs., but apart from severe efforts (such as just drinking protein shakes), I don't foresee D'Andra dropping that much weight.
The doctor says she should lose 25 pounds, and we are working toward that goal. I don't want Madeline to cave into the cultural definition of beauty that makes my daughter hate herself. Instead, I hope Madeline and my daughter can redefine beauty to include people of all shapes and colors.
Telling D'Andra that she will never be blonde and tall is heartbreaking for me. Instead, I tell her how funny she is, how she is a great friend, a good dancer and singer.
I've struggled with my own body image and grew up thinking I was ugly because I wasn't skinny or blonde with blue eyes. I've come to love my own skin being Hawaiian, Filipino, German, Spanish and Chinese. I'm also officially overweight, but I'm okay with it. I'm not trying to impress anyone.
I want D'Andra to be comfortable with who she is right now with her doctor's diagnosis of being obese, with her crazy curly hair, curves and bronze skin. I hope Madeline is successful with her modeling career, but I don't want my daughter to get the message that she has to lose a bunch of weight to be acceptable.
D'Andra should celebrate who she is right now, regardless of the Madelines or anyone else with Down syndrome trying to break a cultural mold. D'Andra should love who she is and should not have to fight marketing or media messages that dictate beauty standards.
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