Courtney Faye Smith, THE LITTLEST HERO

Courtney Faye with Shane Dandy


The Littlest Hero
By Terri Marie

“The flower that blooms in adversity is the rarest of all,”
The Emperor, in Disney’s Mulan

Sometimes it’s not easy to be a hero. Heroes often have to go through the fire.
Everyone in the story you are about to read is a hero. But it is because of one child with a golden heart, that it can be told. Courtney Faye Smith, the little heroine with the big heart.

This was the most challenging story I’ve done. It took three months and four scheduled interviews to get to talk with Courtney Faye. Her life is not predictable. It gives you a small idea of what she has to face everyday. That’s okay. Heroes don’t give up.

It is the story of a beautiful little girl with a disease that cares not the frailty or tenderness of those it chooses, but fear not, it is an uplifting message, and of course, it’s heroic.

I went to Courtney Faye’s home to do the interview. This whole interview was done with lots of people around in a wonderful family setting while the Christmas decorations were going up. Christina, Courtney Faye’s mother, found out the day I did this interview, that Courtney Faye has to have surgery on her spine. Courtney Faye has spinal muscular atrophy. After that news, Christina still was willing to let me do the interview with her daughter. That shows the strength of this woman God chose as Courtney Faye’s mother.

Courtney Faye is a beautiful blonde, almost nine-year-old, with bright brown eyes and the best smile in San Clemente when she gives it to you. Courtney Faye lives in a wheelchair.

Lori Shelton, her good friend, is building a magical playground in San Clemente in honor of Courtney Faye. Lori’s son, Spencer, and Courtney Faye are also great friends. The playground will be called Courtney’s Sandcastle. It will be for ALL children. Every precious one of them.

The “Sandcastle” will be the only universally accessible park in Orange County and it’s about time. Then children like Courtney Faye can finally play at an outdoor playground. Hopefully there will be lots more of these playgrounds coming to Orange County.

Let me tell you a little bit first about this charming little girl who will have a park named after her in San Clemente.

The Hero
Courtney Faye talks in sound bytes, succinct one-word descriptions that are spot on. Then all of a sudden she gets amazingly mature and brilliant, with a wisdom like a little female Yoda – only much younger and cuter, of course.

She’s the littlest hero I’ve interviewed so far.
“What question do you get asked the most?” I ask her. “Why are you in a wheelchair?” she replies. “What do you say?” I ask. “I usually have my mom answer, but she, or me, usually says ‘God built me this way.”
Those are good words. Those are very good words.

What’s her favorite subject? “Math and art would be my favorite,” she says. “You’re good at math? I ask her. “Pretty good,” she says. I wouldn’t have guessed that because she was so creative. When I first saw her she was making a game she could play by blowing through a straw to move a cotton ball into different slots. She gave each slot a name. There was S, P, C, Heart and Star. Each one had a point value varying from 3, 93, to 100. She played the game all the while we did the interview. She was up to 702 points when we finished. I’m sure she’s chalked up lots more points by now.

True Grit
Sand is an interesting medium. It is comprised of rocks, tiny rocks of many different sizes and colors, kind of like the children who play in it. Sand is adaptable. Sand can transform itself to hold together or to pour out like a liquid. Sand is capable of amazing things, like the grit it took to get this playground going.

The Right Decision
One person, no different from you or I, took it upon themselves to make it happen. One person made a decision. A very good one. Lori told me, “Five years ago I took Spencer and Courtney Faye to a park and I was so frustrated. What do families do? What do mothers do with a child with a handicap? Courtney Faye couldn’t slide down slides. She couldn’t swing on swings. She couldn’t get from the parking lot to the park. The park is the least I can do for my friend Courtney Faye. It is going to be built because it’s the right thing to do.”


The Castle Kept Falling Down
The park didn’t have an easy start and like a sandcastle it kept falling down, until Lori found the right combination of “water” to “sand” to hold it together. The key to that combination was in our very own city.

Lori had been struggling to get the park built in another city. Finally, at one City Council meeting, a lady stood up and said, “Where are you from?” Lori said, “San Clemente.” The lady replied, “Why don’t you build the park there?” “That’s the best idea I’ve heard yet,” said Lori. She took the proposal for the Sandcastle playground to then Mayor, Stephanie Downey and San Clemente’s City Council. They supported it 100%. “I had the most incredible backing from the city. Bruce Wegner, the Director of Beach, Parks and Recreation was great,” said Lori. And Lori got great support from the San Clemente Junior Women's Group.

The Bucket is Full
Where is she right now in the fundraising efforts? “We’re finished,” Lori says. “We’ve been done for a long time. We’re just waiting for it to be built. We were speaking at a golf tournament and Jim Johnson who headed up Marblehead Coastal was there. He was moved by hearing Courtney Faye speak and stood up and said “I’ll match what you’ve raised, Lori.” He brought the house down. I had raised $400,000, so we’ve got an $800,000 park coming.” That is going to buy a lot of sand.

Sandcastle Dreams
Sandcastles entice the child in all of us. Possibilities, creation and just plain fun. Let’s crawl inside the eyes of this little hero and see what we will experience. What will Courtney’s Sandcastle be like?

Courtney Faye happily tells me, “Playground equipment for all abilities and a BIG sandbox.” “How big?” I ask her. “I don’t know. Just big,” she says. “Bucket swings with straps so kids without abilities can actually swing and not fall out because they have a big back, two armrests and straps. A big rocket ship,” she says, “I have another friend, Coleman. He’s also in a wheel chair and he can come too. I have gone on a park like that once in my life.”

(That was at Shane’s Inspiration in Los Angeles, built after his parents lost their two-week old son, Shane to spinal muscular atrophy, the disease Courtney Faye has.)

“In most playgrounds, there’s a toy inside the sand,” she continues, “a big built toy. But this one actually had a ramp onto it. It had all the ladders and stuff. They’re almost all made out of steel so the wheelchairs could go up them.”

“Did you like that park?” I ask Courtney Faye. “Yes. Fun. A lot, and a lot, and a lot of FUN! And I could actually get on the stuff with my wheelchair. I could actually get around!”
“And that’s how it should be shouldn’t it? I told her, “not just for you but for all the other little children who want to get on the playground too. How do you feel about having a park named after you?”
“Cool! Cool. C O O L. I like it,” she tells me. Well she’s clear about that! “I drove past it a million times,” she says “and I haven’t been anywhere on the ground though because”...she doesn’t finish the sentence. It’s not wheelchair accessible yet.

Shane’s mother, Catherine Curry-Williams, decided to build a playground after she realized, “Oh my God, if Shane had lived, he wouldn’t have been able to go to the park.” Shane’s Inspiration became the first universally accessible playground on the West Coast. Bill Thomas, in an article in the San Clemente Journal, has a beautiful description of that playground. “A wonderland of wheelchair-friendly ramps, platforms, and bridges, lowered basketball hoops, raised sandboxes, specially constructed swings, imaginatively decorated freestyle walls and small structures with mirrors and windows and numbers and letters in Braille...the first playground in the west that was “boundless,” accessible to all.”

Lori adds, “Everything is accessible for all abilities. Everything from swings that keep you in...”
Courtney chirps in. “I already told her about that.” Yes, she had.

“It’ll have something for every child,” Lori continues...
“In the world!” Courtney Faye finishes. (To hear her words properly, read the word “world,” as “whir- uld!” with childlike joy and exuberance!)

At Last, Riding the Mast
Ironically, it was another Shane gave Courtney Faye one of her dreams. To sail.

Sandcastles and seas go together. While Courtney Faye doesn’t go in the ocean, she loves the beach and the ocean. Castles usually have moats around them. Courtney Faye usually has a wheelchair around her. But Castles also come with knights. Shane Dandy, Lori’s boyfriend, is a knight to Courtney Faye. She’d never been on a sailboat. It was something she always wanted to do. So she went to the sea with captain Shane on the boat Windsprint. Courtney Faye was put in the bolting chair with his daughter Riley. The mast is 40 feet high and Courtney Faye was lifted 15 feet up the mast as it was swinging. “I got to drive,” she said. “I sat in the big chair where you have to repair the mast when it’s broken. It was fun!” Courtney looked at Captain Shane and told him, “I feel like I’m in Heaven.”

Join a bit of our conversation for a bit more insight into this little heroine.

“What have you learned about life, Courtney? I ask.
“Oh no,” she replies.
“That is a tough one,” I agree, “but it’s a good one, because not everybody sees things the way you can see them. I think you’ve got a lot of insights for your age. You want to share some of them?”
“What’s insights?” she asks. I forget she’s a child.
“You have ideas about how life works,” I say.
“Yah,” she says.
“So tell me what you’ve learned about life,” I ask again.
She gives her one word answer.
“Hard.”

Then I asked what you ask all children at this time of year, “What do you want for Christmas?
“I can’t stop answering that with one thing,” she tells me.
“What’s that?” I am curious.
“A stopwatch. So I can time how long I can blow this straw for my game. Time how long I hold my breath. Time everything. Time how long it takes to decorate the house.”
Time, a precious commodity for those who know the lesson, even a child.
“Well, if you like math, that makes sense doesn’t it? You know when I give a speech or write music, I have to time it so I know how long it is,” I tell her.
“I write music,” she states. “I like to write my own songs.”
“Do you? What have you written about?” I ask her.
“Ten thousand different things,” she says. “I wrote 13 songs in a special notebook.”
(I didn’t know we’re fellow songwriters.)
“Can you sing one for me?” I ask her.
“Sure,” she says. “This is actually my first song.”
(Don’t you love how open children are about singing?)
“Look at these they are so snappy.
Look at those they are so cheap.
Buy these and it’ll be so cool. Buy those and you’ll be a geek.”
Now she puts a strong emphasis on the next words saying one word with her right hand and one with her left
“Cool...Geek... Cool...Geek. I bought these I am so co-ool...and that’s all I got.”
Eat your heart out Brittany. Courtney Faye is only eight! And a half.

From Sandals to Song
“The title of that song was actually “Shoes,” she says, “because I just got new shoes and I was in a real happy mood. They were sandals, black sandals with a rainbow on the side.”

“What’s your favorite song other than what you’ve written?” I ask
“I’ll have to say,” she says. “Green Day is the artist and the song is Boulevard of Broken Dreams.”

Singing in the Sand
Speaking of singing, did you know that sand can sing? “Certain sand dunes let out a loud, low-pitch rumble that lasts up to 15 minutes and can be heard up to 6 miles away,” said Michael Schriber of Live Science. The wind forces the sand until the angle reaches a tipping point of 35 degrees which creates an avalanche. That produces the singing. There are only 35 known places where you can witness this unique phenomenon. Now there will be 36. Maybe if you listen with your best Christmas ears, you can imagine the sound of the children playing together in their sandcastle - all those “little heroes” laughing and singing in the “castle.”

We Need to Stick Together
What makes sand stick together? A Notre Dame University physicist Peter Schiffer, said that sand holds together by “liquid bridges.” Bjorn Carey of Live Science says that the “bridges create an attractive force between the grains that is absent in dry sand.”
Yet it is dry sand, that sings.

A Child’s Invention
“I love science,” Courtney Faye tells me. “I don’t know much about science, but I like it. “I like doing stuff scientifically like with water and ice.” Water bonds sand together. But Courtney’s Sandcastle will be stronger than a regular sandcastle. It will be held together with love.

“If you could invent anything what would you invent?” I ask. She didn’t miss a beat and said, “I’d have to say...a flying machine. Something that you could just go up as high as you want, except not high enough that you can’t breathe. (She does think of everything doesn’t she?)
And a wheelchair with a built in everything. Built in bed. Built in house. Built in TV. Built in computer. Built in paper. Built in pages. Built in books. Built in teachers...
“Wow,” I say, stopping the growing list, “accessible to anything you want.”
“Anything I want at that time and I could just have it right there,” she says. “The seat would raise up and out and set me on the ground and then build something. And it would be voice activated. And it could have wheels for a regular wheelchair and it could even have a tetherball. It could only recognize my voice and if it hears somebody else’s it would have a motion detector. It’d go ‘Alert. Alert. Alert’ and I’d have a little button that sings ‘Alert’ on my hand. “Oh no! My! Hurry! Run! she teases.

Before we finished our interview Courtney Faye told me another thing she wanted for Christmas - a drum set. Again something so she can keep time.

Her friend Spencer, will be at the new park. I asked Spencer “What would people like to know about Courtney Faye?” He said, “That she’s funny and that she doesn’t need a lot.”
“Why don’t you need a lot Courtney Faye?” I ask.
“I’m pretty independent,” she tells me.
Yes, an almost nine-year-old in a wheelchair said this.

She and Spencer go to lots of meetings and speak but they make their own fun. “We usually chase each other around outside,” Spencer says. “She can go faster than me in a wheelchair.”
“8 miles per hour!” Courtney Faye confirms.

Courtney Faye, tell me about Spencer,” I ask.
“Funny. Compassionate. He was raised from a very good mother. I know he’s going to grow up to be very nice and loving,” she says.
“It’s important to have mothers who care,” I tell her.
“Yes,” she replies.
“What do you look for when you’re looking a friend?” I ask.
Her answer, “Love, understandingness, love.”
That’s probably all we need. Three words wrapped in love.

“How would you change the world Courtney to make it better for everyone?” I ask.
“Hmm,” she thinks.
“Magic wand,” I say. “You can change it anyway, you want.”
“Hmmm,” she thinks some more, then pulls out the answer, satisfied. “No drugs,” she tells me.
I say, “Nice. What else?”
“More color,” she says. “I want more colors. Because a lot of stuff is black and yuck.”
Ah, she must have a favorite color and I ask her what it is.
“I’m going to have to say.... PINK!” is her firm reply.
Lori told me “Pink” is Courtney Faye’s nickname. “I named her “Pink” when she was a baby.”
“The doctor said I was the pinkest baby he’s ever seen,” Courtney Faye says.
Pink is a good color. It’s the color of love.
Christina, her mom had said when she had this little girl. “I’m not dressing her in pink. She’s wearing red, white and blue.”
“And look at you,” I say to Courtney Faye.
She’s smiling. Wearing pink.

Courtney Faye loves her bedroom. She said, “It’s almost like having my own apartment” “Tell me about your room,” I ask her.
“Purple. Helped by Lori, Colorful. TV and beautiful. Plus double closet. There’s a closet right on the other side of mine,” she says.
Courtney Faye wanted to show me her room. She and Spencer made me wait, walk into her room, cover my eyes, and open another door. Surprise! She was laying on the shelf in her closet grinning at me.

Courtney Faye, what would a symbol be of a hero to you? Do you know what a hero is?
“Yes,” she says. “The people around me because they’re so loving and I don’t know how to word it, but they respond in a positive way to me being in a wheelchair.”
(Sounds like she worded it just perfect to me).

“And that makes you feel...,” I continue.
“Good!” She replies before I can get the word out.
“You know something,” I say. “I’m surprised at how articulate you are. You know what that word is?”
“No clue,” she says. Oh well. I drop the question.

“What have you learned from your handicap and I don’t really want to call it handicap?” I ask.
“Wheelchair,” she corrects me and continues, “That everyone is different in their own special way.”
“You know if you can learn that when you’re eight...” I say.
“Almost nine,” she corrects me again.
“I know, I know, two and a half more weeks until you are nine. If you can learn that at eight and 3⁄4, you have learned something that most people don’t learn in their whole lifetime.”
Courtney Faye is a New Year’s Eve baby. Her birthday is December 31 and she’s proud to be turning nine. After all, one more year and it’s double digits for her.

“So tell me about your day,” I say. “What is a normal day for Courtney Faye?”
“Wake up. Go to school. My hand gets tired very easy. My teacher is very accepting of that so that makes my day always better. And then I’m in a lot of good classes. I come home and my mom is always ready for me and happy.”
I ask her mother, “What do you do for Courtney Faye to make her life easier?”
Christina says, “The biggest thing I do for her is try and make sure that she’s included, that she does what everybody else does. If she can’t do it the way they do it, then we figure out a way to do it. That’s the most important thing to me, making sure she just leads a normal life.”

Courtney Faye plays baseball, horseback riding and aquatics, she swims, she does physical therapy, and occupational therapy. “She did cheerleading one year,” says her mom. “We tried it up at San Clemente high school.” In the background Courtney Faye is demonstrating some cheers. “I ride horses every Friday,” Courtney Faye says. “The horse I ride is named Tasha and she’s my favorite.”

“She has such a happy spirit. I’m really truly blessed that we have what we have, that she can communicate with us. She has a very good attitude and she puts up with a lot,” says Christina.
“And she’s smart and she’s beautiful,” Lori adds.
At that point Courtney Faye has two bent straws stuck on her teeth like a walrus.
“Sometimes I’ll have to remember,” says Cristina. “and she will say to me, ‘I’m just a kid. I’m just a kid.’”

Courtney Faye is a “Make a Wish” ambassador. She’s also an ambassador for the Muscular Dystrophy Association. “I keep trying to keep her involved and give a little payback to everything they give to us,” say Christina. “We’ll go to an event and Courtney will speak.” Courtney was a “Make a Wish” recipient which Christina said was “such a great gift. She’s very personable and very gregarious so I take her to different meetings and attend fundraisers, anything that raises awareness.”

“What would you like people to know about you,” I ask Courtney Faye.
“I’m not that much different,” she says. “I’m loving, and that I’m not challenged with a wheelchair at all.”

Lori may have been the last person who saw Courtney Faye standing upright. It was years ago when Courtney Faye propped herself up next to an ottoman.
Courtney Faye trusts Lori. She once told Lori, “I love you more than anything.”
Lori one-upped. “No, I love you more than anything. I’m having a park named after you.”
Courtney Faye two-upped, “Well, I’m going to have a planet named after you.”
Courtney Faye wins.

“Tell me about your friend Lori,” I ask.
“Ask her!” is Courtney Faye’s reply.
“No, no, no,” I respond. “I want to ask you because she’s your friend and I want you to tell me about her.”
“All right,” she relinquishes. “Loving. Energetic. Nice, nice, and nice and I can’t think of anything else but nice.” Her exact words.

“Courtney Faye has a wonderful disposition in life,” Lori tells me. “When things get tough, we laugh, don’t we Courtney Faye? She’s the dearest thing to my heart. I don’t know any adult or child like her. She never complains. Everybody complains about something. They can’t pay their bills, they’ve got too many wrinkles, they just got a divorce, I mean everybody has problems,” says Lori.
Courtney Faye gently says. “My back hurts.”
“That’s the only thing you complain about and you’ve only started complaining about it recently. So for the first nine years of your life, you’ve never complained,” says Lori. “You’re a pretty special girl.”

Courtney Faye wanted to hear the interview. My tape recorder at this point didn’t work and we all sounded like chipmunks. When I played it, we got a good Christmas laugh.
Just like a sandcastle, sometimes things get washed out by a wave. This was a technical one and like a real sandcastle, if something doesn’t turn out like you wanted, or it topples over, you must find another way. Courtney Faye has.
And just for the record. The best mix for a sandcastle is one pail of water for every eight pails of sand. Kind of like water and flour for making Christmas cookies.

It’s not a perfect world, what we would like it to be. It’s a deal-with-the hand-you’re-dealt with world. And once you play that hand well, you bond not sand, but hearts.

This life is temporary enough. Like the Navajo sand paintings, these children come into our communities and lives to show us a picture, however brief, but beautiful. There are 3 million disabled children in the USA, 5,000 here in Orange County. Now the wheelchaired children and the blind children in our own Orange County can look forward to experiencing the joy of a playground that invites them in, not shuts them out. They won’t have to watch other children having all the fun. Courtney’s Sandcastle will welcome the children. Jim Johnson, who had cancer at the time he agreed to donate the final money for Courtney’s Sandcastle, must be smiling down from heaven.

Look For the Sandcastles in the Hills
“The strength of a sandcastle depends on how the grains interact,” says NASA’s website. The strength of our community depends on how we allow our children, at the most critical time in their lives, to have access to play together and learn from all children on God’s Earth. The children themselves are the beautiful sandcastles we have been blessed to watch, helping them take form by our seaside town. Bless them everyone.

Remember Courtney Faye’s little friend she talks about earlier in the wheelchair? Coleman Hartman had the surgery she is about to have. It did not go so well and it was hard on Courtney Faye. It was the reason one of our scheduled interviews got cancelled. But, we, as citizens of this beautiful community, can help now. Let us all make a wish together. This Christmas, let every one of us in San Clemente join to pray for a successful surgery for this little girl who will be remembered long after all of our lifetimes by the Sandcastle in her namesake. Where the children yet to come, will be playing together in the hills of San Clemente. And in spring 2007, let us join Courtney Faye, where she will be cutting the ribbon to the park in her honor. Let’s hope it is a beautiful pink one. Little hero, Courtney Faye, our beautiful, living sandcastle!

Live like a hero!

Terri Marie

What you can learn from Courtney Faye

• Don’t Complain
If she doesn’t, why should you? Enough said.

• Have Fun
Courtney Faye uses her wheelchair to “outwheel” her friends. What has life forced you to deal with? How can you have fun with that?

• Put More Color into your World
Children love a bright colorful world. Let’s not dampen our joy of color, with age and something called maturity.

• There is Always a Way to Do Something
Almost all of the things Courtney Faye wants to do require some sort of adaptation to allow her the experiences we take for granted. Adapt, invent, improvise.

• Every One of Us has Different Abilities
That’s all. Not better. Not worse. Just different.

• Sometimes it Takes More Than One
The park took three beautiful blondes, bonded by the heart to get built - Courtney Faye, her mother, Christina, and Lori. “I was very determined to make sure she had something with her name on it,” Lori says. “God put this on my shoulders. God gave me a gift.” San Clemente should thank Lori Shelton for her bold determination to get this built. Love can build a Sandcastle.

• Time is the Most Important Thing in the World
Understanding the value of time is a huge gift. If we all got that one this Christmas, our world would be blessed indeed.