Tuesday, April 8, 2008

Just In Passing: In Memory of Melissa Riggio

Have you ever met someone who's made a profound impression on you just by the way they embrace life, even in the midst of all adversity? If not, I'm sure you know of people whom, after you've read or heard about their lives, you were left thinking about how extra-ordinary they've created their existence. They are truly awe-some individuals.

I've met only a handful of extraordinary people, and know of only a few more. I'd like to know more because they inspire me.

Above: Melissa Riggio shares her thoughts about Down syndrome. Photograph by Annie Griffiths Belt

I've never "met" Melissa Riggio (pictured above). She is the daughter of Steve and Laura Riggio. Steve is the CEO of Barnes & Noble, the company for which I work. Last year, Steve asked all Community Relations Managers to do an event to raise awareness about Down Syndrome since Melissa has Down Syndrome. She had just recently published an article in National Geographic: Kids and he sent us copies of it to read (see below). After I read the article, I felt like I knew Melissa and I admired her outlook on life.

The event at my store was one of the best children's events I've ever held. I networked Karen Dearolff ,the founder of a local group called "Up with Downs". She has a son, David, with Down Syndrome. The day of the event, about 35 families showed up for the program. The children read their poetry, talked about their participation in the Special Olympics, danced, played instruments and shared with us their dreams. The youngest was just an infant and the oldest looked too young to be the oldest! I was left awestruck; inspired by their humor, their positive out look on life, and to this day, I still talk about how wonderful the event was.
Steve had also sent each one of us a CD of Melissa's music, which softly played in the background during the event. As participants listened to her poetry and her music and read her article, they, too, were touched by her way of being.

Melissa passed away yesterday morning from leukemia. She was 20 years old. I'm glad I got to know her, if only in passing.

Meet Melissa:

I Have Down Syndrome—Know Me Before You Judge Me
Text by Melissa Riggio as told to Rachel Buchholz

When I first started to work on this story, I thought maybe I shouldn’t do it. I thought you might see that I have Down syndrome, and that you wouldn’t like me.

My mom thinks that’s silly. “Have you ever met anyone who didn’t like you because you have Down syndrome?” she asks me. She’s right, of course. (She usually is!)

When people ask me what Down syndrome is, I tell them it’s an extra chromosome. A doctor would tell you the extra chromosome causes an intellectual disability that makes it harder for me to learn things. (For instance, some of my classes are in a “resource room,” where kids with many kinds of learning disabilities are taught at a different pace.)

When my mom first told me I had Down syndrome, I worried that people might think I wasn’t as smart as they were, or that I talked or looked different.

I just want to be like everyone else, so sometimes I wish I could give back the extra chromosome. But having Down syndrome is what makes me “me.” And I’m proud of who I am. I’m a hard worker, a good person, and I care about my friends.

A Lot Like You
Even though I have Down syndrome, my life is a lot like yours. I read books and watch TV. I listen to music with my friends. I’m on the swim team and in chorus at school. I think about the future, like who I’ll marry. And I get along with my sisters—except when they take my CDs without asking!

Some of my classes are with typical kids, and some are with kids with learning disabilities. I have an aide who goes with me to my harder classes, like math and biology. She helps me take notes and gives me tips on how I should study for tests. It really helps, but I also challenge myself to do well. For instance, my goal was to be in a typical English class by 12th grade. That’s exactly what happened this year!

But sometimes it’s hard being with typical kids. For instance, I don’t drive, but a lot of kids in my school do. I don’t know if I’ll ever be able to, and that’s hard to accept.

Dream Job: Singer
I try not to let things like that upset me and just think of all the good things in my life. Like that I’ve published two songs. One of my favorite things to do is write poetry, and this singer my dad knows recorded some of my poems as singles.

Right now someone else is singing my songs, but someday, I want to be the one singing. I know it’s going to happen, because I’ve seen it. One day I looked in the mirror, and I saw someone in my head, a famous person or someone who was somebody, and I just knew: I will be a singer.

It’s true that I don’t learn some things as fast as other people. But that won’t stop me from trying. I just know that if I work really hard and be myself, I can do almost anything.

See Me
But I still have to remind myself all the time that it really is OK to just be myself. Sometimes all I see—all I think other people see—is the outside of me, not the inside. And I really want people to go in there and see what I’m all about.

Maybe that’s why I write poetry—so people can find out who I really am. My poems are all about my feelings: when I hope, when I hurt. I’m not sure where the ideas come from—I just look them up in my head. It’s like I have this gut feeling that comes out of me and onto the paper.

I can’t change that I have Down syndrome, but one thing I would change is how people think of me. I’d tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend.

After all, I would do the same for you.

What is Down Syndrome?
Down syndrome is an intellectual disability that about 5,000 babies in the United States are born with each year. A person with Down syndrome has 47 chromosomes, microscopic structures that carry genetic information to determine almost everything about a person. Most people have only 46 chromosomes. It’s the extra chromosome that can cause certain physical characteristics (such as short stature and an upward slant to the eyes) and speech and developmental delays. Still, people with Down syndrome are a lot like you: They are unique people with strengths and talents.

Click here to listen to "The Ring," the song that Melissa wrote.

2 comments:

Anonymous said...

Hi Nancy,
Michele said you had a blog so I am glad I found it today. Isn't it wild that they finally got married after all this time?
I am now teaching and living in the Middle East (Dubai, UAE).
Take care,
Annick (a name from the past)

par said...

Dear Ms. Nancy,
I think that it's really cool that you made a story all about a girl with Down syndrome. From what you wrote about her, I'd say that she was a good person.
Josh P.
(B&N regular)