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My Daughter With Down Syndrome Has Big Dreams of Making a Difference for People With Disabilities

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I see the nerves starting to build. The anxiety starting to mount in my daughter, Grace. We’ve practiced for months and I know she’s ready. But how will she do? All I can do at this point is pray.

Standing in front of an audience of 100 to give a presentation is nerve-wracking. Standing in front of an audience of 100 for the first time ups the ante. Standing in front of her first audience of 100, struggling to keep her stutter in check and born with a disability, well, need I say more?

Someone once said, “If your dreams don’t scare you, they’re not big enough!”

Grace’s dream is starting. She dreams big and she’s using her abilities to help others look beyond what they see. She wants anyone who looks different to be included, respected and believed in. She wants to show the potential of someone once thought of as uneducable.

“The doctors told my mom and dad that I would probably never read or write, or even tie my own shoes.”

This is an excerpt from Grace’s 45 minute, 72 slide PowerPoint presentation called, “The Grace Effect” that she now shares at schools. Grace worked on this presentation for months. Her audiences are loving it and coming away with new perspectives. With fun, honest and informative ways, Grace shows her audience what it’s like to have a disability, and yet challenges her audience to see others in a different light.

“Everyone wants friends, respect, to be included, and wants to be thought of as capable. Kindness does matter.”

She also talks about using the r-word and asks her audience to remove it from their vocabularies. “Even if you hear someone else joking around or using it — be bold and ask them to stop. We do understand that word, and we can hear it — and it hurts us.”

Twenty one years ago, three hours after Grace was born, a genetics counselor gave us this news: “She will have to live with you for the rest of your lives. She will be overweight and have thin hair. She will most likely not be able to read or write. A typical IQ is around 40. Tie her own shoes? Not likely. And if you and your husband cannot handle this, there are still institutions.”

This was only 21 years ago, 1996. Institutions? Really?

Grace was born with Down syndrome. I thought she was the most beautiful thing I had ever seen when she was handed to me. Petite tiny facial features, a loving smile. She looked like a cherub. After the genetics counselor left, a fire lit in my soul. We were not going to take this lying down. But I was scared to death. How can someone predetermine a life after only three hours of being alive?

Overcoming obstacles, proving predetermination wrong.

You see, Grace not only learned to read and write well, she jogs almost daily, is training for a 5K, is not overweight, loves texting her friends, is a purple-belt in Tae Kwon Do, an altar server at church, reads music and plays in two bell choirs, has friends and is continuing her education. And, yes, she learned how to tie her own shoes. She has a great outlook on life — and now she is starting a public speaking role.

Her goal is to help break down barriers for individuals with disabilities, to provide hope and inspiration to all people, to tell students how Down syndrome affects her and others like her. She asks educators to raise the bar and hopes to give a new perspective on the abilities of someone born with Down syndrome.

It didn’t come easy. Grace has had to work hard and overtime for everything she’s accomplished; fighting to show she was capable. She is a strong, persevering and determined young lady and she keeps pushing.

“I don’t like when people are lonely or left out and I get really mad when people think I am not capable.”

Thinking of a suitable end to her presentation was easy: “It’s a Great Day To Be Alive!”

Which is pretty much how she takes on every day.

Predetermining a life is a dangerous thing to do.

Keep shining your light, Grace. You are beautiful, you are loved and you are making a difference.

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Originally published: November 15, 2017
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