I’ll end this story by telling you about one more sign.
There’s a church in my hometown with a roadside sign that says: “Sign broken, message inside.” I think that says it all.
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. Visit Scott’s blog with Exceptional Parenting at www.eparent.com/resources—blogs/index.asp.
Broken Shells
We love because it’s the only true adventure.
Nikki Giovanni
It was a warm summer afternoon in mid-July at the Jersey shore. My four-year-old son and I just loved venturing off to the beach just before dinner when the rest of the vacationers seemed to be leaving for the day. The sun was still hot and shining bright. With bucket in hand, we’d hit the sand and start our adventure. Will would run so quickly to the edge of the water and be soaked before I got there, laughing as the waves crashed and nearly knocked him down. I remember the days not so long ago when a trip to the beach was just unbearable for my little boy. His sensitivities to sights, sounds, and touches would prevent us from enjoying everyday activities, such as a walk by the shore. My son, Will, was diagnosed with autism spectrum disorder (ASD), and despite the fact that he is high-functioning, he has spent many hours in therapy, helping him to overcome the many challenges he faces. The beach is now one of his favorite places to visit. I am thrilled, because it is a place where I feel at home and filled with peace, and I wanted to be able to share that with Will.
Presently, we are able to walk along the edge of the water almost daily in the summer months, looking for seashells to fill our red sandcastle-shaped bucket. Some days, the bucket is full, and other days just a few shells make it into the bucket. On this particular day, there didn’t seem to be too many shells washed up on the shore. Will began picking up whatever shells he saw lying in the sand. After a while, I peered into the bucket and saw nothing but broken shells. “Will,” I said, “all of these shells are broken and no good. You need to find shells like this,” I continued, as I held up a perfectly shaped clamshell. Will gave me a puzzled look and continued on his way, gathering whatever shells he came upon and dropping them into the bucket.
I continued my search for some time, and then stopped to watch him drop more broken shells into the bucket. Again I stopped, but this time I asked in a more stern voice, “Will, why do you insist on filling our bucket with shells that are broken?” He looked up at me through his glasses with his big blue eyes and replied, “Mom, there are way more shells on the beach that are broken than there are perfect ones that you are searching for. We’ll get the bucket filled faster with the broken ones.” True, I thought, but who wants a bucketful of broken shells? Will stared at me as if he knew what I was thinking. “Mom, these shells are broken, but they are still beautiful,” he chimed. Just then he reached his little hand into the bucket and began pulling out the different shells and commenting on their uniqueness. “This one is broken, but look, it has the color purple on it. Mom, none of yours have purple on them,” he said with such pride.
“You’re right, Will,” I agreed.
“And, Mom, this one looks like a smile when you hold it this way,” he said as he reached for another broken shell. “It reminds me of a clown. This one is round like the sun, and these ones are stuck together like butterfly wings.”
My eyes filled with tears as I realized my son was teaching me a most valuable lesson. I reached my hand into the bucket and began to take out the few perfect shells I had collected and placed them back on the beach. Will and I walked along the beach, collecting only broken shells in our bucket and admiring their beauty.
When we arrived back at our beach home, we rinsed off our bucket of shells and proudly displayed our “broken shell garden” next to our patio. It is a constant reminder of how none of us are perfect. We are all broken in some way, but we still possess beauty and uniqueness beyond belief. Now, whenever we go to the beach, we gather only broken shells. Yes, it’s true, while the perfect shells are few and far between, there are many more broken shells left lying on the beach that go unnoticed. If we take the time to look more closely at the broken shells, we can find beauty in their imperfections, and maybe even learn something about ourselves.
Debbie Jaskot
Deborah Hickey Jaskot received her master’s of education from Cabrini College. She resides in Garnet Valley, Pennsylvania, with her husband and their five-year-old son. Debbie is currently devoting her time at home to her son, from whom she learns every day, and who inspired her to write the first of many stories to come. Please e-mail her at
[email protected] 3
MILESTONES
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dancing with Myself
It’s always the rug you’ve been sweeping things under that gets pulled out from under you.
Jim Bannerman
The e-mail popped onto my screen. “Because you lack volunteer service hours, you’re invited to help at a sock hop for the Oklahoma Foundation for the Disabled this Saturday night. In order to become a Junior Hospitality Club member, you must attend this final event of the season.” A dance for people with disabilities? I’d not been around many people with disabilities, and I didn’t know how comfortable I’d feel helping out. Besides, I’d be going alone, which was sure to make me feel awkward.
I’d pledged Junior Hospitality (JH), a women’s social and philanthropic organization, at the beginning of the year with the hope of meeting “couple friends” for my husband and me. What I didn’t count on is that we’d be divorcing seven months after I signed up. Despite the divorce, I wanted to become a member. I tapped out a reply that I’d go. Getting to know the women of JH was fun, and I liked the idea of being part of a group that helped the community. Unfortunately, members sometimes brought their husbands to activities. Certainly, at a sock hop, that would be the case. I’d feel more alone than ever. I sighed. Getting dressed up and going to a party was the last thing I felt like doing. But it was only four hours, then I’d be done with my requirements. After this, all that was left was a written test.
On Saturday afternoon, I rooted around in the closet for fifties-style clothes. I rolled up my jeans to midcalf, slid into a white shirt, turned down the cuffs of a white pair of socks, and slipped on a pair of retro-looking sneakers. I even found an old bandana and tied it around my neck. I pushed a headband over my hair and stared at my reflection. Tears welled up in the corners of my eyes. Please, God, help me get through this. I hated feeling so alone.
A deejay was setting up his equipment as I walked into the large gymnasium. Several club members laughed as they filled helium balloons with their husbands. The volunteer service coordinator, who directed me to come, suggested I join a group moving tables and chairs. “This area will be the dance floor,” said a woman in saddle oxfords and a yellow polka-dot skirt as we lifted a folding table. I remembered her from a JH meeting. She seemed nice, and I looked forward to getting to know her. “Let me do that.” A man with greased-back hair gave the woman on the other end of the table a peck on the cheek. “You gals get the chairs.” I smiled, but inside I felt a pang of loneliness. Everyone had a date except me.
At seven o’clock sharp, busloads of revelers arrived. Some came in wheelchairs. Some walked with limps. Others looked like they had Down syndrome or other cognitive disabilities. The fluorescent lights shut off abruptly, and the music blared. Most people made their way straight to the dance floor, while others stood around in a circle. “This is just like a high-school mixer,” I commented to another JH member w
earing red pedal pushers. Before she could reply, her husband grabbed her hand. It looked like they’d taken swing-dance lessons at one time. I was thankful for the darkness and hoped it covered my sadness. I edged closer to the wall and watched others wiggle and twist to the music. Not only did the rejection of my ex-husband hurt, but memories of high-school dances more than twenty years earlier returned to my mind.
That familiar sinking feeling that no one would choose me churned in the pit of my stomach. I remembered times as a young woman when I waited for a partner—dances, dinners, movies, marriage. Being alone made me feel unworthy, unloved.
Then, in the center of the dance floor, I saw something radiant. It was a young woman wearing a poodle skirt, checked shirt, bobby socks, and saddle oxfords. Her long, blonde hair was pulled into a ponytail, and a pale pink scarf flowed around her neck. Maybe it was the light reflecting off the disco ball above her, but she seemed to have an aura about her, a glow. Although a stranger, she waved at me from the dance floor. Barely five feet tall, with a stout body and thick neck, she smiled broadly. In the middle of the crowd, her skirt swished as she moved to the music—alone. She twirled around and around. She seemed so free, so at ease. Again, she waved, but this time, she motioned me out to the dance floor. I felt inhibited, and everything within me wanted to resist. I forced myself to walk toward the center of the room. Pushing my way through dancers, I made it under the disco ball. But the woman wasn’t there. My first instinct was to run.
Then I noticed those surrounding me. Most of the dancers were without partners. Costumes varied, but each wore a big smile. Adults with disabilities, some even in wheelchairs, all seemed to be enjoying themselves more than me.
As I stood in the center of the floor, it hit me: in a roomful of people whom the world labeled as disabled, I was the one too afraid to dance. I really didn’t need to find the woman who waved me onto the floor. What I needed was to learn how to dance by myself. Right here, right now. I closed my eyes and swayed side to side. Moving to the music, I felt more joyful than I had in a long time. When I opened my eyes, I realized I wasn’t alone. True, I didn’t have a partner, but I was surrounded by people—not just JH members, but a group of people who seemed to embrace life despite their limitations.
Later that month, I took the final test to become a member of JH. I giggled as I wrote the answer to the first question that asked the motto of Junior Hospitality: Help yourself while helping others. Indeed, I already had.
Stephanie Welcher Thompson
Stephanie Welcher Thompson is a wife and stay-at-home mom who writes when she is apart from daughter, Micah, four, and husband, Michael. Her stories have appeared in Guideposts, Angels on Earth, Positive Thinking, Sweet 16, and ten Chicken Soup books. Reach her at P.O. Box 1502, Edmond, OK 73083 or
[email protected] ofchange.net.
Sunday Morning
My little man, so handsome today, so grown-up, is sitting up tall next to me in “big church.” He keeps shooting me that signature smile of his.
The music begins, and his entire body comes alive with unrestrained enthusiasm. With all the strength of his six-year-old body and the support of Mom’s stronger arms, he comes to a wobbly stand. I hold tight as he sings with abandon. He does not miss a word. Neither does anyone else within earshot. He has worked very hard for every sound he makes. Full of praise (and full of himself), he sings every word in his time—and in tune, apparently, or so I’ve been told by people who would know.
Bennett’s heart beats for music. Since he was a toddler, he has been able to recognize songs by hearing only the first few notes, as well as naming the artists of familiar tunes. At age four, he requested to hear some “oprah mulik” (opera music). He has come a long way from crying at the sound of the music therapist’s guitar to strumming one of his own. Amazing, considering he cannot yet control an eating utensil enough to feed himself independently. He has come a long way. We have come a long way. . . .
Today, he is singing for God. I ask him every now and then just to check. He will, at any given moment in the day, break into an impromptu “ladies and dentamen (ladies and gentlemen) presenting” . . . usually himself. In his unlimited imagination, Bennett is not only a rock star, but also a doctor, chef, teacher, and talk-show host. He spends much of his time with a real or makeshift microphone in hand (occupational therapy at its best). Simple tasks of the day are announced and presented to the imaginary studio audience that lives at our house. Pouring a cup of milk or helping him to sit up is frequently followed by “Mama, ladies and dentamen.” Most anything is reason for applause and accolade. Homework is usually done as a special segment on Live with Regis and Kelly. He’s Regis. I’m Kelly. An American Idol expert extraordinaire and future idol himself, Bennett has entertained nurses live from his hospital bed.
I treasure these moments. I treasure every word. I treasure every breath.
He shoots that smile at me again. Minutes into the sermon, he whispers, “Mama, more music.” He didn’t always have the breath support to whisper.
We were told Bennett would not walk or talk, along with an overwhelming list of neurological and medical challenges. In addition, due to respiratory issues, there is a high infant mortality rate for children with Joubert syndrome. When the doctor was finished, his words had not only ripped through us, but through the dream of what we thought was to be.
I shoot a smile down at my squirming virtuoso as I think of how this six-year-old, thirty years my junior, has been my teacher.
After we were given the news, my husband and I excused ourselves to the hospital chapel. Later in the neonatal intensive care unit, Jeff looked down at our tiny gift, camouflaged by tubes and wires, and said, “I just want him to know I am his daddy, and I love him.”
Bennett is nearly seven years old. He gives us more love than we can hold. He is our dream come true. We have walked hand in hand with sorrow and with joy, many times simultaneously. There have been many nights when I greeted the moon and the sun without a closed lid in between, some by a hospital bed, some through prayerful tears as I cry out on behalf of our suffering son. And we have seen miracles.
We have seen Bennett in the emergency room go from nonresponsive and pneumonia blue to pink and shooting that smile at a surprised ER doctor who had minutes earlier prepared us for the worst. We have seen mystery spasms that caused great struggle brought under control. We have seen provision for Bennett’s care financially and through gifted specialists. We have also experienced comfort and support from friends who go above and beyond. We have heard Bennett put his first sentence together, an ironic “I luh lou (I love you)” for Daddy. Nearly every day, I watch as he is wheeled into first grade, where he is doing well. And recently, we watched with great pride as he took his first steps in a walker. (He might as well be standing on a podium, gold medal lighting up his chest with the American anthem blaring overhead. He has put in as much effort and accomplished as much by pushing himself down our hallway.) We have watched him grow into an amazing little person who shows love to others freely. It was once thought he may never lift his arms over his head. These are the same arms that wrap around my neck and pull me in close every day.
Bennett’s body may never catch up with his mind and heart. Perhaps the biggest miracle is knowing it does not have to.
Our life is different from many, full of doctors’ appointments, therapies, hospital stays, and advocacy. Everything takes great effort, sometimes painstaking effort. The privilege of caring for Bennett is a large part of our daily lives, but a small part of who he is.
Teacher Bennett has shown me that hope does not disappoint, that love never fails, and to take nothing for granted. I’ve learned there is a difference between completely relying on God’s strength and relying on my own strength to hold on to him. I now know the greatest calling we have is to love and be loved. Bennett has more than enough ability to fulfill this calling. In six years, he has touched more lives than many do in sixty.
“Bennett, listen.” I lean down
in a whisper. “The pastor is talking about loving others.” Sweet pea looks up, with arms raised to hug, and says, “I luh lou, Mama.”
After the service, a lady approaches me. She had been watching us. I think she called me remarkable, encouraging words from someone kind enough to not keep them to herself. I thank her, and think, I am a mom who loves her son. I’d like to think there is nothing significantly remarkable about that, but I appreciated the encouragement nonetheless.
As I carefully carry Bennett down the stairs from the balcony, I tell him he is remarkable. He smiles and squeezes me a little tighter.
Bennett, ladies and dentamen.
Hillary Key
Hillary Key is a full-time mom, and lives with her husband, Jeff, and son, Bennett, in Roswell, Georgia. She received her bachelor’s degree in graphic arts from the University of South Carolina in 1992. Hillary had two short stories published in 2006 in Special Strength for Special Parents. She enjoys painting, reading, and being a daily guest star on The Bennett Show, broadcast “live” from her living room, produced by the imagination of her son. Bennett, the host and creator, is doing extraordinarily well. He is enjoying good health, sweet friendships, and a new stage built into the corner of his room by special fans.
Speech Therapy
Every survival kit should include a sense of humor.
Anonymous
When my son was five years old, he displayed a variety of autistic behaviors and was classified as “speech and language impaired” by the school district. The school staff and I worked hard to achieve a comfortable and collaborative relationship.