Michele Iallonardi
Michele Iallonardi lives on Long Island with her husband, Ralph, and their three boys. She is an advocate for her children and the community. Michele is a writer whose family was featured in the documentary Autism Every Day by Autism Speaks. Michele runs a group for families with three children on the spectrum. Email her at
[email protected] Miracle Field
I’m not old enough to play baseball or football. I’m not eight yet. My mom told me, “When you start baseball, you aren’t going to be able to run that fast because of your handicap.” I told Mom I wouldn’t need to run that fast. When I play baseball, I’ll just hit them out of the park. Then I’ll be able to walk.
Edward J. McGrath, Jr.
I’ve always heard that miracles happen when you least expect them. And yesterday I experienced it for myself. It all started with a phone call from a guy named Steve. “Hey, Scott,” he said. “Do you remember me?”
I recalled meeting him earlier in the year at his brother-in-law’s place of business. Steve had heard about my son, Evan, and about his terminal heart disease and Noonan syndrome. Even though Steve doesn’t have a child with a disability, he is a warrior for the cause. His brother-in-law had told him about the stories I write, and Steve wanted to be added to the list of readers. I only met him face-to-face one time, but since then, we’ve stayed in contact through e-mail.
After I acknowledged that I remembered him, Steve asked me—knowing I was a builder/carpenter—if I would meet him at a construction site to help finish a project that was at a standstill. “Yeah, I’ll take a look,” I said. We agreed to meet the next day.
I arrived at the job site a few minutes early on a sunny March morning, very welcome after another harsh and gray Michigan winter. I was early, so I climbed out of my truck and wandered around the complex. I must admit, I was a bit in awe. The view that surrounded me was of a beautiful outdoor baseball stadium—one of the nicest I’d ever seen. The grass on the field was green—even in March!—and the surrounding areas were neatly kept. There were magnificent light poles standing around the field like soldiers guarding an encampment. I could only imagine how magical a night game played on this field would be.
Just then, Steve walked up, and we shook hands. As we stood in the middle of the impressive field, he began to explain how he’d started the project a year ago, and now he needed help to wrap it up. He told me how he’d become a part of the “Miracle League.” I started to think he was talking about the movie with Kevin Costner, Field of Dreams. You know the famous quote: “If you build it, they will come.” Yep. And here I am, a builder. So I said, “But the field looks great! It looks finished. I’m curious as to why you think you need me.”
“No, no, no. That’s not what this is about,” he said. He continued telling me about the Miracle League—that every player bats once each inning, that all base runners are safe, and that each team and each player wins every game. I pictured in my mind what a game played by those rules would look like, and as I continued to listen in the early spring sunshine, I started to daydream about the field.
In my mind’s eye, the empty bleachers began to fill with spectators, cheering like they were in a pennant race. The sounds of the players chanting and calling to one another filled the air. I swear, I think I even picked up the scent of hot dogs wafting from the concession stand. The excitement in the air was exhilarating. And then, from behind home plate, I heard: “You’re safe!” The umpire rumbled his call, and the crowd stood and cheered.
I found a spot right behind the backstop—the best seat in the house. I leaned into the chain-link fencing and yelled at the umpire, “What? He can’t be safe; everybody who’s gotten up to bat this inning has been safe. How can that be?”
The heavyset umpire, dressed all in black, turned around and gave me a quizzical look. He snapped back at me: “Can’t you see these kids have medical issues? Buddy, this is the Miracle League, where everybody is safe. Everyone gets at least a base hit, and there’s no such thing as a recorded error.”
Hmm, I guess I really hadn’t noticed that the last kid to cross home plate was in a wheelchair. I started to look around, and, to my surprise, I noticed a lot of wheelchairs and walkers in the dugouts.
As I continued to dream, a boy with an oversized head approached the plate. This player, a bit small for his age, wasn’t in a wheelchair, but he needed help getting to the plate. The man who walked alongside the wobbly kid must have been his dad. It wasn’t a mystery who his mom was. She was the pretty blonde gal in the stands, smiling and crying all at the same time. The closer the boy and his dad got to the batter’s box, the more she jumped up and down.
I looked back at the boy. He had a plastic tube in his neck that must have been there to help him breathe. He also had a noticeable wet spot on the front of his uniform where it appeared that another tube protruded from his belly, like one of those tubes that a sick child is fed through. His dad, still in his worn-out work boots and dirty jeans, got down on one knee to hand the bat to his son. He communicated to his boy in sign language. It was obvious to me that he was signing: “You can do it, son, you can do it.”
The boy never swung, not even once, as more than ten balls pitched past him. To tell you the truth, I wondered if he even could. Suddenly, the umpire straightened up and yelled, “Run, run, go to first base.” The player and his dad held hands and struggled for first base. It seemed to take forever, but they made it. The umpire ran out to first base and yelled as he waved his arms in familiar fashion, “You’re safe!”
Wow, that was close, I thought.
But before I could wake from my dream, the first base coach yelled, “Keep going!” as he pointed to second base and started to swing his arm like a windmill.
In the stands, I saw the mother again. She stood up, and her voice rose above the rest. She yelled, “C’mon, son, you can do it!”
So off the boy went. His dad continued to help him. It was almost too painful to watch as the simple act of running the bases seemed like such a struggle for the boy. The pair eventually rounded third base and headed for home plate. I was now screaming like the rest of the fans in the stands, acting like a fool as I cheered for the little guy.
His breath was coming hard now. The air sounded raspy as it passed through his tube. He was worn-out, but he had the hugest smile on his face. He was definitely having the time of his life.
The umpire was still out in the middle of the field, almost on purpose, as father and son crossed home plate. He nodded at me, letting me know that it was up to me to call the play.
So I did. I yelled as loud as I could, “You’re safe!”
The boy, so tired by now, turned and looked at me. I recognized the blond curls peeking out from his helmet. I saw that familiar face. I looked into the eyes of the boy I love and know so well. He was my son. The boy everyone was cheering for was my little guy. The father who was crying and hugging him now was my own reflection.
Once again, I started to wake from my dream, but before I could, the umpire, bless his soul, held up his chubby arms and called the game because of rain. Of course, you all know the flood of drops was not coming from the sky, but from me and all the spectators in attendance that day.
I awoke from my dream, still standing midfield with my friend and kindred spirit, Steve. As we shared the vision of all that was in store for this baseball field, he said to me: “Yes, Evan will play here someday, and he’ll run the bases. He’ll hit a home run, and he will know he is safe.”
And that, my friend, is a miracle.
Scott Newport
Scott Newport is the father of Evan, who was diagnosed with Noonan syndrome and hypertrophic cardiomyopathy as an infant. Evan spent the first 252 days of his life in the hospital, only to leave with a death notice. Now five years old, Evan uses a ventilator to breathe and has various developmental delays. The Newport family endures happily in Royal Oak, Michigan. Read Scott’s blog at www.eparent.com/ resources—blogs/ind
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The Dance
The last day of camp has arrived and with it, the big dance—and the first time the girls will be trading their shorts and T-shirts for cool party clothes. Just old enough to have first crushes, they’re all excited, commiserating discussing what to wear, what’s the best color to paint their nails, and who they’d like to dance with.
They ask Megan for her advice on nail color because her nails are the prettiest and always look perfect. Someone guesses blue—since it’s the “in” color this year. She glances to the right—that means no. Someone guesses red. Again she glances to the right—no again. Someone guesses pink, and Megan, who has cerebral palsy and communicates by looking in one direction or the other, smiles and glances to the left. All the girls decide to go with pink; it’s a good idea to take Megan’s lead on nail fashion.
The boys’ main concern is the tunes. They have some strong opinions on what is cool and what is lame. They try to persuade their counselor to go with their music choices; after all, they know what a happenin’ tune is much better than some ancient twenty-year-old.
Now it’s almost time for the dance to begin. The girls are in the locker room for some final primping: applying makeup, curling hair, approving one another’s outfits— and trying to guess which counselor each has a crush on. When Megan glances to the left with a big smile, they all agree he is the cutest.
While the girls are taking great care perfecting their look, the boys are all trying to see who can have the most outrageous luau costume. It’s actually a theme dance, but no one is quite sure what a luau is. Their laughter and rough-housing has taken on a slightly nervous edge: girls at a dance is a lot different than playing co-ed kickball or trying to impress them with a bull’s-eye in archery.
For some campers, this is the first time they’ve even been to a dance. Many have never gone to camp or been included in much of anything—and certainly have never been in a place where they could feel that they were just like everyone else.
The counselors win out and get to choose the music, and it turns out to not be so lame after all, and they even turn it up really loud. A disco light sparkles but not nearly as brightly as the eyes of these kids as they share the dance floor and everyone forgets who is a little different.
The counselors now form a circle and take turns cutting loose in the center. The girls all giggle and the boys express their approval with exclamations of “awesome!” and “sweet!” The counselors invite the children to join them; but there is no way the boys are going to dance in front of the girls or the girls are going to dance in front of those cool counselors. So everyone just stares and the circle remains empty.
That is until Cara jumps in. With her signature sweet smile, she claims the spotlight and begins to move to the music with the most unique dance moves ever. Everyone starts to clap, and the boys nod in agreement that that is the way to dance. Chants of “Cara, Cara, Cara,” begin to fill the hall. In this moment, Cara is not a girl who is different because of her Down syndrome. Cara is different because she is the girl who broke the ice and is leading the group with her extraordinary dance.
One by one the others follow her until the circle is filled with kids who no longer care who is watching—they’re just having the time of their lives.
The resident heartthrob grabs Megan’s wheelchair and twirls her around the floor and the other girls express their approval with discreet thumbs-up.
The happiness that permeates the air is almost palpable as the parents who know their children’s daily struggles so intimately are overcome with emotion. With tears in their eyes and hearts filled with gratitude, they watch from the sidelines thinking this is the way the world should be.
And as this magical night comes to a close, and everyone is saying their tearful good-byes with promises of “I’ll call you,” and “Let’s stay friends,” one lone camper remains on the floor, her parents waiting patiently as she continues to do her version of ballet until the last song is done.
I look over at her and think how long it’s been since I’ve had the courage to dance like nobody’s watching me. I guess I just needed someone to show me the way. Another bit of magic on this unforgettable night.
Kristy Barnes
Kristy Barnes is the director of marketing and services of the Bubel/Aiken Foundation. In this role she directs the administrative and business management functions, programs, technology, and communications. Before coming to TBAF, she worked with YMCAs across North Carolina to build youth and family programs and facilities. She graduated from the University of North Carolina at Wilmington where she earned her bachelor’s degree in psychology. For more information about the Bubel/Aiken Foundation and Kristy’s contact information, please visit www.bubelaiken.org.
Silent Grace
Silent initiation changes the hearts of all.
Sri Ramana Maharshi
Quietly entering the kindergarten classroom for the first time, Grace did not appear much different from the other children. Obviously timid and quite silent, she found the bright green paper frog bearing her name and dutifully sat in front of it. I reassured Grace’s mother, concerned about the well-being of her child, that all would be fine. I work very hard to establish a warm, safe, friendly classroom environment for my students, and I had no doubt that Grace would be happily adjusted in a matter of weeks. As the weeks wore on, however, it became apparent that Grace was more than a shy child. Constantly isolating herself from the other children, she often cried silently. She refused to make eye contact, feared the bathroom, and found herself too anxious to eat. Grace refused to do her work when she was seated near other children, and did not participate in the usual movement songs and games that most kindergartners adore.
It was exactly one month into the new school year, and Grace had yet to speak her first word within the confines of our campus. The majority of the eighteen other children in our otherwise close-knit classroom began to ask questions. One child remarked, “She’s weird.”
The severity of Grace’s disability became apparent to us one cool, rainy September morning when the fire alarm sounded. The whole class obediently lined up and briskly walked outside, all except one. After a hasty head count that came up one short, my classroom assistant, Mylinda, rushed back inside to find a terrified, yet silent five-year-old sitting in the same place we had left her. It was then that I knew something more had to be done for this unusually shy child who was already touching our hearts.
As Mylinda walked silently hand in hand with Grace around the campus, I held a classroom meeting. These meetings, intended to establish boundaries and promote discussion and ownership on the part of the students, were common in our classroom. This one, however, was different. For the first time we were excluding one of our own, and the children immediately noticed. “Why did Grace have to leave the room?” Though a difficult question, the answer was one that my kindergarten students would hold fast in their hearts for the remainder of the year.
“Grace is afraid when she is in our classroom with us,” I explained. “Remember how you felt when you first came into this classroom? You were not sure what to expect. You did not know if school would be hard or if your teachers would be nice. You were afraid.”
“I was afraid I would not have any friends!” Jessica, one of my more thoughtful students, noted.
“We all were,” I replied. “But we have all become great friends now. We take care of each other, and we love each other. That is why we all need to work together to make sure Grace knows that we love her, too.”
Five-year-old Brandon was immediately intrigued. “What do we do?” he asked.
I proceeded to explain to my captive audience how they could best help their classmate.
“Grace wants to be our friend, but she is afraid. She is afraid we will not like her or that we will laugh at her. You can be a great friend to her by letting her know that you love her. Invite her to play in centers with you, and tell her hello when you see her. Be very careful not to
frighten her, though. When you talk to her, make sure you do not scare her. When you say hello, do not stand and try to make her talk to you. When she is comfortable talking, she will, but we cannot force her.”
What followed was a thirty-minute conversation in which the children in Room 113 discussed ways they would try to help Grace feel more comfortable. At the end of the conversation, Laura raised her hand and quietly spoke, “We will be like her family.”
I did not realize the truth of Laura’s words at that moment. As the year progressed, however, I watched a classroom of nineteen children become a true family.
As Grace entered the classroom each morning, still unwilling to talk or interact, the kind voices of my kindergartners quietly resonated through the room: “Good morning, Grace!” “You look pretty today, Grace.” “Maybe you can play with me today, Grace.” The response was always the same—silence.
During free time, many of the children wrote letters or drew pictures for Grace. Though seldom received with expression, these sentiments were always carefully stored away in her backpack. Each one would be examined and read once Grace was in the safety of her home.
These kind gestures and words continued tirelessly throughout the year. Despite the lack of response, the children never gave up hope that they would be able to afford Grace the same emotional comfort they enjoyed daily in the safety of our classroom and school. Never forcing her to interact, they learned the perfect median to express their care for Grace, without seeming overbearing. They protected her fiercely, never again leaving the classroom without first ensuring that Grace was in our line. I was pleased to overhear a conversation between an employee in the cafeteria and one of my more outspoken students. The lady was gently berating Grace for not speaking when Brandon spoke up in her defense: “Grace is still afraid to be at school,” he explained. “It is our job to help her and make her feel happy.” With that, Brandon turned to Grace and asked if she would like pizza, to which she nodded her head “yes.”