Chicken Soup for the Soul: Children with Special Needs (7 page)

She comes home after school, to laugh and play

with her sister and baby brother,

she’s tucked in at night, with a hug and a kiss

just the same as any other.

She wakes each morn, with a yawn and a stretch

and wonders of each new day,

what things she’ll see, what things she’ll do

in her world . . . in her own way.

She puts her shoes on, one at a time

and kisses me good-bye,

to stand in “the group” next to your little one,

Who draws away, her wondering why.

She’s young right now, and sees the “good”

although in time, that’s bound to change,

she may hear those words and see those looks

that will make her “feel”—but strange.

If I could make a wish tonight,

I’d wish to make it right,

not for a different or shinier star,

just that ours would forever “feel” bright.

To that little girl, who stands out most

and has troubles following suit,

who forgets a lot, and talks out of turn

“We love you . . . you are you . . . and you are cute!”

Donna Turenne

Donna Turenne
is, first and foremost, a mother of three beautiful children (Camille, Caslyn, and Landon). Married to the love of her life, Donald, she is a practicing registered nurse in Chilliwack, British Columbia. Her stories are inspired by her family’s strength and God’s love expressed in living with a child who has special needs. Donna dedicates her story to Caslyn and Landon, Camille’s true guardian angels on Earth. Please e-mail Donna at [email protected].

Reaching Back

S
ome luck lies in not getting what you thought you wanted but getting what you have, which once you have got it you may be smart enough to see it is what you would have wanted had you known.

Garrison Keillor

When my son Evan was born, and I was told he had Down syndrome, I did not cry for a long time. But when I saw a girl walking hand in hand with her little brother to the viewing window of the hospital nursery, I could not hold back my tears. I knew my daughter would never walk with her little brother that way. I knew he would never experience the small pleasures of life I always took for granted. In those minutes, my heart was broken, and I was overcome with sadness for both my children.

Now, almost six years later, I am filled with pity for the misinformed, heartbroken woman who sat crying in that cold hospital corridor, without hopes, dreams, or fight in her. She was wrong about so many things. That part of me continues to be reeducated: I am grateful for every new lesson I learn. I am thankful to that woman. She found she did have some fight in her. She was not the first mother to fall in love with her newly diagnosed child. She learned of brave and stubborn mothers who put themselves forward in the media to spread a message of hope. She let the memories of those mothers stir her into action. I will always revere the mothers and fathers who reached out a hand, and who built a foundation of support, information, and resources for women like me to draw upon. What they did for their children transformed my son’s life. They continue, still looking forward, always reaching back to help others.

I still reach back to the woman I was. I hold her gently and wish that in her grief she could hear me. “It’s not like that. Please don’t lose yourself in that sadness. Hold on, wait and see. So much of that grief is over things that are just not true.” I know she has to sit there crying, and I don’t know how long. I will wait with her and be a friend.

Evan will be six years old in a month. His sister, Zoë, is seven and a half. When they are not arguing ferociously or ignoring one another, as siblings do, they are the best of friends. They help one another scheme, and protect each other from harm. Both have argued seriously about how life for the whole family would be better if the other disappeared, leaving an “only child.” Each misses the other when they are separated overnight. I rarely think about the sister and brother walking toward the nursery viewing window, but sometimes when I see my two walking hand in hand down the beach or up a hiking trail, I think of the poor, sad woman I was that day.

I can’t imagine life without my son. Sometimes, when he barrels into my bedroom early Saturday morning to tell me a great cartoon is on, I wonder what life would be like without little boys. But I get up and find he has quite good taste in cartoons. I think of him in his preschool days, chin raised in pride over some fabulous work of art, like the turkey he pasted up when he was three. I remember him seeing his good buddy from class, Terrell, at a school carnival, and how their eyes met. They squealed in unison and ran to each other like sweethearts in a perfume commercial. I enjoy the story his teacher relayed to me about how, during a cookie-baking class, he slyly nibbled his chocolate chips instead of saving them for the cookie. I am glad every day to have this son. The world is a better place with him in it.

Evan is not a Down syndrome “superstar,” but I wanted him to have the experience of a regular kindergarten. He loves school and has a wonderful teacher. His classmates are charming and funny and bright. But I was afraid of their parents. Evan has missed some fine opportunities because many people are as inexperienced and uninformed as I was six years ago.

I believe Evan needs an edge before he can participate successfully in mainstream activities, and that edge is casual acceptance. Last night was parent night at my son’s kindergarten class. I was overwhelmed by the relaxed but purposeful way different parents let me know that they accept my son simply as a child in the kindergarten class. Their hands reach back to comfort the heartbroken woman in the hospital corridor. They comfort her in ways that I cannot. I thank every person who has brought us all this far. Thank you so much.

Pam Wilson

Pamela Wilson
graduated from UC Berkeley in preparation for work and starting a family. Her children and those she met through special programs and mainstream activities continue to inspire her to advocate for opportunities, support, and encouragement for every child and family. Visit her website or contact her through
www.specialneedschildren.bellaonline.com
.

A Reason to Celebrate

T
he soul would have no rainbow if the eyes had no tears.

Native American Proverb

Numbly, I left my husband, Marty, at the hospital where I had been visiting two of my children and headed for the grocery store. Since it was 11:00 PM, I drove to the only store I knew was open twenty-four hours a day. I turned my car motor off and rested my head against the seat.

What a day,
I thought to myself. With two of my young children in the hospital, and a third waiting at Grandma’s, I was truly spread thin. Today I had actually passed the infant CPR exam required before I could take eight-week-old Joel home from the hospital.
Would I remember how to perform CPR in a moment of crisis?
A cold chill ran down my spine as I debated my answer.

Exhausted, I reached for my grocery list, which resembled a scientific equation rather than the food for the week. For the past several days, I’d been learning the facts about juvenile diabetes and trying to accept Jenna, my six-year-old daughter’s, diagnosis. In addition to the CPR exam, I’d spent the day reviewing how to test Jenna’s blood and give her insulin shots. Now I was buying the needed food to balance the insulin that would sustain Jenna’s life.

“Let’s go, Janet,” I mumbled to myself while sliding out of the car. “Tomorrow is the big day! Both kids are coming home from the hospital.” It didn’t take long before my
mumbling turned into a prayer.

God, I am soooo scared! What if I make a mistake and give Jenna too much insulin, or what if I measure her food wrong, or what if she does the unmentionable—and sneaks a treat? And what about Joel’s apnea monitor? What if it goes off? What if he turns blue and I panic? What if? Oh, the consequences are certain to be great!

With a shiver, my own thoughts startled me. Quickly, I tried to redirect my mind away from the
what ifs.

Like a child doing an errand she wasn’t up for, I grabbed my purse, locked the car, and found my way inside the store. The layout of the store was different from what I was used to. Uncertain where to find what I needed, I decided to walk up and down each aisle.

Soon I was holding a box of cereal, reading the label, trying to figure out the carbohydrate count and sugar content.
Would three-fourths of a cup of cereal fill Jenna up?
Not finding any “sugar free” cereal, I grabbed a box of Kellogg’s Corn Flakes and continued shopping. Pausing, I turned back.
Do I still buy Fruit Loops for Jason?
I hadn’t even thought how Jenna’s diagnosis might affect Jason, my typical four-year-old.
Is it okay if he has a box of Fruit Loops while Jenna eats Kellogg’s Corn Flakes?

Eventually I walked down the canned fruit and juice aisle.
Yes, I need apple juice, but how much? Just how often will Jenna’s sugar “go low” so she will need this lifesaving can of juice? Will a six-year-old actually know when her blood sugar is dropping? What if . . . ?
I began to ask myself again.

I held the can of apple juice and began to read the label.
Jenna will need fifteen carbohydrates of juice when her sugar drops. But this can has thirty-two.
Immediately I could see my hand begin to tremble. I tried to steady the can and reread the label when I felt tears leave my eyes and make their way down the sides of my face. Not knowing what to do, I grabbed a couple six-packs of apple juice and placed them in my cart. Frustrated by feelings of total inadequacy, I crumpled up my grocery list, covered my face in my hands, and cried.

“Honey, are you all right?” I heard a gentle voice ask. I had been so engrossed in my own thoughts that I hadn’t even noticed the woman who was shopping alongside of me. Suddenly I felt her hand as she reached towards me and rested it upon my shoulder. “Are you all right? Honey, are you a little short of cash? Why don’t you just let me . . . ?”

I slowly dropped my hands from my face and looked into the eyes of the silvery haired woman who waited for my answer. “Oh, no, thank you, ma’am,” I said while wiping my tears, trying to gather my composure. “I have enough money.”

“Well, honey, what is it then?” she persisted.

“It’s just that I’m kind of overwhelmed. I’m here shopping for groceries so that I can bring my children home from the hospital tomorrow.”

“Home from the hospital! What a celebration that will be. Why, you should have a party!”

Within minutes this stranger had befriended me. She took my crumpled-up grocery list, smoothed it out, and became my personal shopper. She stayed by my side until each item on my list was checked off. She even walked me to my car, helping me as I placed the groceries in my trunk. Then with a hug and a smile, she sent me on my way.

It was shortly after midnight, while lugging the groceries into my house, that I realized the lesson this woman had taught me. “My kids are coming home from the hospital!” I shouted with joy. “Joel is off life support and functioning on a monitor. Jenna and I can learn how to manage her diabetes and give her shots properly. And just as God met my needs in a grocery store, He will meet each and every need we have. What a reason to celebrate.” I giggled to myself. “I have a reason to celebrate!” I shouted to my empty house.

“Why, you should have a party,” the woman had exclaimed.

And a party there would be!

Janet Lynn Mitchell

Janet Lynn Mitchell
is a wife and mother of three incredible kids. She is also an inspirational speaker and author of numerous articles and stories in compilations. Janet’s latest book,
Taking a Stand,
has just been released. Through it all, Janet and her family have learned that together they can face mountains and reach new heights. Janet can be reached at [email protected].

My Finest Teachers

I was five years old when I first learned how cruel kids could be. My friend and I were riding the bus to school, and a little girl with blonde hair was sitting behind us. We didn’t know her, but we knew her name was Sue.