Chicken Soup for the Soul: Children with Special Needs (14 page)

BOOK: Chicken Soup for the Soul: Children with Special Needs
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His face smoothed into a look of compassion. “I work with children who have autism,” he explained. “It’s a challenge, isn’t it?” I felt something inside me weaken: a wall, perhaps, I never even knew I had built. Because I expected people to be indifferent to me, or to be judgmental, I never expected kindness. Not like Jessica, who always does.

The light changed. “She has a good mom,” the brown-haired man said simply, and walked away. I caught my breath. If he had thrust a bouquet of gardenias in to my hands, I would not have been as surprised. His words were like an offering, a gift, for which he wanted nothing in return.

“That was Mark,” Jessica said. “We know Mark now.”

“We sure do,” I said, and smiled.

Jennifer Lawler

 

Jennifer Lawler
is a writer who lives in the Midwest with her adorable daughter, Jessica, and their lazy mutt, Jazmine. Visit Jennifer’s website at
www.jenniferlawler.com
.

 

On the Inside

 

W
hat we see depends mainly on what we look for.

John Lubbock

 

I look like a monster. During a routine root canal last week, the dentist accidentally tore a blood vessel in my face, and the result is that the left side of my face is black and purple and swollen from eyebrow to throat.

While painful, the worst part of this mishap is the deep embarrassment at having my face look so monstrous. I hadn’t realized the shock of my bruises until my neighbor dropped by and literally jumped off my porch at the sight of my face, clutching at her heart and shrieking involuntarily.

“It’s not even a good story,” I told her, and explained about the dentist and the torn blood vessel. After a brief visit, I said good-bye to her, knowing she had never paid attention to our conversation because my face was so distracting. I was disheartened and embarrassed.

The embarrassment grew more deeply rooted when I took my son to kindergarten the next day. Upon seeing my face (which I thought was cleverly concealed by my hair swept over my face and the sunglasses I wore indoors), Noah’s teacher gasped. Expletives spewed forth, causing me to laugh, and she to slap a hand over her mouth. “I’m sorry,” she apologized for her involuntary cursing. “You look like someone beat the life out of you!” I explained what had happened and literally ran to my car, heading
home to hide from all human contact.

For several days, I avoided contact with people other than my family, and my first foray into public in search of a video led to new humiliation and had me determined not to leave home again.

“Mommy, look at that lady’s face!” I heard the little boy’s voice behind me, and the heat rose in my cheeks as I instantly knew I was the freak show he pointed at. “Don’t stare,” I heard the mother whisper as she yanked the boy out of the video store so he wouldn’t have to see the scary-faced woman. I drove home, crawled into bed, and pulled the covers over my head, intending to stay there until I looked human again.

A couple of days later, I looked in the mirror and tried to view my face from a stranger’s perspective. The perfect circle of purple around my eye lent me the look of that dog on
Little Rascals.
The huge, swollen black and purple splotches along my cheek and jaw, and the streaks of blue and green down my throat, were colorful and distracted from the fact that I wore no makeup, which was too painful to apply. I couldn’t have felt more insecure.

Sighing, I told myself,
If my own children accepted this temporary ugliness, then what did I care what strangers thought. It’s just my face, after all—not who I am. It’s what’s on the inside that matters
. I put on my sunglasses and headed to the bookstore in search of more boredom busters.

As I locked up my car and shook my hair down to cover my cheek, I realized my hands were shaking.
This is ridiculous!
I scolded myself.
It’s just a bunch of bruises!

Trying to be invisible, I headed to the kids’ section to look for something my kids might like.

“Mommy, look at that lady’s face!” The words again brought the blush of embarrassment, and I wished the floor would magically swallow me up. I wasn’t prepared for the mother’s reaction.

“I know, honey. She looks like Shaley!” The woman actually sounded happy about this, almost like I did when I saw another deaf child like my youngest.

I turned to see who was so excited about my disfigurement and saw a woman, a little girl, and another little girl in a wheelchair, all staring at me. The little girl in the wheelchair had a facial deformity that made my heart ache for her. I don’t know what it’s called, but I knew she had a disease that made her life expectancy uncertain. I knew she was Shaley, and I also knew there was a lesson for me here.

“Hi!” I bent down and touched the side of Shaley’s face gently, fingers shaking. She had huge, sparkly brown eyes, and they shined with inner beauty that made me forget the face so obvious at first glance.

She reached a tiny hand up to me, past my bruises, and up to grab a handful of my red hair in her gnarled hand. Her touch was gentle, sweet, and careful.

“Pretty,” she said simply.

Tears stung my eyes as all at once I felt shame at myself and admiration for this brave little angel. She could see beauty in a place where others saw ugliness.

I grinned at her and said, “Thank you, Shaley.”

“Pretty,” she said again and touched my cheeks. By now, I was fighting to keep the tears from spilling. I looked at this tiny doll and knew she was freer than most people ever were. She knew what really mattered, and she had the courage to speak up and say it. She made me feel special, as if she looked into my soul with those huge brown eyes and deemed me pretty on the inside.

We said our good-byes, and I watched her mother wheel her away. I wanted to thank her, but stood rooted in silence and tears. I watched until they were gone, and then headed to my car and home. Shaley touched a complete stranger and put things neatly in perspective. My battered outside would eventually heal. Hers would not. But she showed me that what is true, what is really important, has nothing to do with our outside packaging. It’s on the inside.

Susan Farr-Fahncke

 

Dedicated to making a difference,
Susan Farr-Fahncke
is the creator of
2theheart.com
, founder of the amazing volunteer group, Angels2TheHeart, and a busy author. With stories featured in several Chicken Soup books, she is also the author of the beloved
Angel’s Legacy.
She teaches online writing workshops, and you can sign up for a workshop and see more of her writing at
2theheart.com
.

 

Broken-Down Signs

 

I
am one of the last of a small tribe of troubadours who still believe that life is a beautiful and exciting journey with a purpose and grace, which are well worth singing about.

Yip Harburg

 

Signs are all around us. Signs point the way. They tell us what we’re allowed to do. They tell us where we’re not allowed to go. They keep us from getting lost.

This is a story about signs—all kinds of signs.

The story begins at the home of my folks, near the Lake Michigan shore. It’s not where I grew up, but it’s where my parents have decided to retire, and we’ve visited them often enough over the years that I guess it’s a bit of a “home away from home” for our family.

We used to visit quite often. These days, we don’t make it up there as often as we’d like. It hasn’t been easy to travel ever since our son, Evan—now four years old—was born with a terminal heart disease called hypertrophic cardiomyopathy and a variety of other complications brought about by a genetic condition called Noonan syndrome.

This year, the family—my wife Penni, our seven-year-old son Noah, Evan, and Evan’s nurse—traveled to Lake Michigan to visit my folks and get some much-needed rest and relaxation.

One afternoon just a few days into our vacation, my sons and I walked to a large community swimming pool. Since it’d been a while for all of us, we weren’t exactly sure
which roads led to the pool.

Noah said, “Hey, Dad, I think we’re supposed to turn here.”

“The street sign looks like it’s been run down by a car,” I replied. “How do you know this is the right place, Noah?”

“Trust me, Dad.”

Well, he was right. The pool was just around the corner. That broken-down sign didn’t keep us from finding the pool, or from making a new friend that day—a little girl named Renee.

Actually, we met Renee’s dad first; my brother-in-law introduced us. He was about my age, wearing a T-shirt about Down syndrome. As other parents around us sunbathed and caught up on the latest gossip, I told him that I had a child with a syndrome, too.

In truth, I’d already noticed Renee, though I didn’t know that was her name. She was hard to miss; even though there were close to 100 kids in the pool that day, she sparkled. I liked that about her.

Her dad called her over to us, but she flew past. “Renee,” he said again. “Come here, sweetie. I want you to meet someone.” Renee’s fine hair framed her face, which had typical Down syndrome features. Her brown eyes glittered with life and intensity. When she spoke to her dad, her speech was a bit broken and monotonic, though he didn’t seem to have any trouble understanding her. He introduced her to Evan and me.

“Hi, Renee,” I said, as I got down on one knee. “Would you like to sing the Bumblebee song with Evan and me?”

We all three sat down, and I started singing the little tune. To my surprise, she jumped right in as though she had been rehearsing for weeks! As we sang, Evan—who doesn’t speak—let out an occasional happy squawk. When the song ended, Renee babbled excitedly. Because I had a hard time understanding her, I asked what she was trying to say. She amazed me by signing with her tiny fingers, “More.” My heart melted.

I signed back. “More music?”

She again signed with her fingers. This time she signed “please” by placing her hand over her heart and moving it in a circular motion.

When we left the pool that day, we’d made a new friend. As I started to push Evan’s stroller toward the exit, Renee ran up to me, tapped me on the back, and gave me a big hug and a kiss on the cheek. No words were spoken as we embraced, but the message was mutually clear. I turned away with a smile that matched the one on her father’s face. He didn’t wave as we left; he just nodded his head. I knew what he meant.

There’d been many a head turned that day around the pool . . . not toward us, but away from us. And I don’t know how many times I overheard kids asking their parents, “What’s wrong with them?” I guess people don’t understand sign language. Or maybe they just don’t like to look at people who seem to be broken.

As Noah, Evan, and I walked home from the pool, we ran into a woman we hadn’t seen in a year or two. Noticing our “language” of hand signals and obnoxious grunts, she squinted her face and asked, “Does he even understand what you are saying?”

“Yes,” I replied, just slightly offended.

I wanted to say, “I know he doesn’t speak . . . and I know he can only sign one or two words . . . and I know those signs aren’t done perfectly . . . but he does like to listen to singing . . . and he does like to go to the pool!” Hmmmppphhh.

Back at home, Evan and I sat on the front porch, swinging in the creaking wooden porch swing. We let the warm lake breeze put our souls to rest. As we rocked together, I wondered about how we communicate our wants and needs, and about how sometimes things just seem to come out of our mouths.

And I thought about some of the things that have come out of people’s mouths upon meeting Evan for the first time:

“How do you know what he’s saying?”

“Does he love you?”

“Does he like to play?”

“How do you know if he’s crying?”

“Does he even know he’s sick?”

“Is he broken?”

For each question asked, I could write so many heartwarming stories about Evan that the book would never end. Does Evan speak? Yeah, I think so. When a wife looks at her husband, puts one hand on her hip, taps one foot, and slightly cocks her head, what does it mean? Ahhh, any guy knows! She’s mad about another dumb thing he’s
done. You see, all communication is not verbal.

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