Chicken Soup for the Soul: Children with Special Needs (18 page)

Baby Steps Came in Her Own Time

N
o child is perfectly whole in mind, body, spirit, ability . . . nor can any child meet all of a parent’s hopes and expectations. Yet there is a wholeness of each and every child, a wholeness that is unique and brings with it a unique set of possibilities and limitations, a unique set of opportunities for fulfillment.

Fred Rogers

Maybe I bought the book after Lucy was born, or maybe some well-intentioned someone gave it to me. I don’t remember. But here it is, nearly three years later, still next to my bed. Back then, I read it, as well as lots of other books, looking for answers to questions. Lucy, my first grandchild, my oldest daughter’s baby, was born with an extra chromosome.

“We’re sorry,” people said when they heard. And we were, too. Sorry and stunned and scared.
When Bad Things Happen to Good People
seemed an appropriate book to be reading at the time.

But I hold it in my hand now and think,
Bad things?
Lucy wasn’t a bad thing. It was bad that she had three holes in her heart, but we didn’t know that when she was born. All we knew was that she had Down syndrome. And yet we were sad anyway.

What was wrong with us? Why all the worry and fear? And why, even now, do we still, sometimes, more times than we should, continue to worry and fear when Lucy isn’t doing something that some chart says she should be doing? Why can’t we just relax and
let Lucy lead the way?

She has dark blonde hair that curls at the ends, the prettiest almond-shaped blue eyes, and the tiniest nose, rosy cheeks, and a smile that we waited so long for. Even now, although she smiles all the time, it is still magic.

All babies are measured against charts. The average baby smiles at one month, rolls over at five months, walks at thirteen months.

Children with Down syndrome have charts, too. There, in black and white, are the anticipated dates when the child you love is supposed to be crossing some milestone.

And you look at the charts, and you worry every day when a child isn’t on target. When the smile doesn’t come when the chart says it should. When a first word isn’t within first-word range.
What do these things mean? That she will never smile? That she will never talk?

And then one day, she does. She smiles, and she talks, and you wonder:
why were we worried?

I have been taking Lucy to church on Sunday mornings since she was ten days old. People whose names I don’t know enveloped her from the beginning. “What a beautiful baby. What’s her name? Lucy? Hi, Lucy.” They prayed for her when she had heart surgery. And they prayed for her when she had to have more heart surgery.

“Look at how big she’s getting. Look at her sitting up! And crawling! And standing!”

They have been cheerleaders to her progress. And they have witnessed her wonder: she loves the church lights and the music and the man who collects the money.

Last year, her cousin Adam, who is ten months younger, learned to walk. We watched him stand and take a step and grab on to a doll carriage and take more steps.
Amazing! “Look at him learn,” we said.

Lucy sat on the floor and watched him, too. Children with Down syndrome take a little longer to do things. The chart said she’d walk at twenty-five months. She was only twenty-three months. She had time.

But twenty-five months came, and she didn’t walk. And then she was two and a half, and still not walking. And even two months shy of her third birthday, she wasn’t really walking. She’d take a few steps, then sit down and scoot.

“Come on, Lucy,” we said, clapping and cheering.

But standing upright and putting one foot in front of the other was clearly not on her agenda.

And then three weeks before her third birthday, as we arrived at church, I asked her, “Do you want to walk?” And she said, “Yes.” So I unbuckled her seat belt, and she took my hand. And there she was, walking along the sidewalk, walking up the cement walk, walking up the big steps, walking into the church, walking into the foyer, and walking down the aisle, her pretty spring dress sashaying with every step.

And when she reached the pews, she sat down and clapped.

I held her hand again when it was time for Communion. But on the way back, she pulled away and continued on down the aisle, my little Lucy Rose, walking all by herself.

Beverly Beckham

Beverly Beckham
writes a weekly Sunday column for the
Boston Globe.
She is also the author of
A Gift of Time,
a collection of personal essays, and
Back Then,
a memoir of childhood. She lives in Canton, Massachusetts, with her husband. They love watching Lucy Rose, who is now four years old, walking, running, and dancing! Beverly can be reached at [email protected].

The Race

The morning dew clung to the grass,

As the sun began to rise,

A little girl stretched with a yawn

And rubbed her weary eyes.

A day just like all others,

Yet she managed still to smile,

She peered out through her window

And dreamed a little while.

This girl, like you, was special,

Unique in her own way,

Her legs just didn’t have the strength

To run and jump and play.

She prayed each night that they would heal,

So she could share the fun,

To giggle and laugh with all her friends

Beneath the warming sun.

She longed to feel the soft, cool grass

And the sand between her toes,

To walk among the falling leaves

And the cold and crispy snow.

She’d watch the others in their favorite game,

In stance to start a race,

All crouched down in a single line,

Such excitement in their face.

She’d eagerly shout, ready, set, go,

And they’d take off with a flash,

Oh, she thought, how glad I’d be,

Even if I came in last.

And then one new and precious dawn,

Unlike the ones before,

She peered out through her window

And rubbed her eyes some more.

She thought she must be fast asleep,

For never had she seen

Anything quite as beautiful,

Not even in her dreams.

A chestnut horse with a golden mane,

With legs so large and strong,

“Surprise!” she heard her parents shout,

“He’s now where he belongs.

“For this horse, he is not perfect,

“He’s blind and cannot see,

“He’ll trust in you to guide him,

“And together you’ll run free.”

They asked the girl to come and meet

The answer to her prayers,

For with her sight and his strong legs

They’d be a perfect pair.

Each day they lifted her atop

This horse with a golden mane,

And never again would another day

Feel quite the same again.

She practiced hard and learned to ride

This big and noble steed,

And knew that she could do all things,

If only she believed.

She brushed his coat until it shined

And whispered in his ear,

I never believed in miracles,

Before they brought you here.

And then one day, beneath the sun,

Her hands tightly on the reins,

Among the others, ready, set, go,

She joined them in their game.

She gave her friends a running start,

A fair and distant lead,

Then like a flash, she bounded forth

With her blind but trusting steed.

The wind, it rushed against her hair,

And she grinned from ear to ear,

Just then she looked ahead to see

The finish line drawing near.

She felt the spirit in this horse

Run hard with all his might,

For he now gave her legs to run,

And she gave him his sight.

This horse, he ran with so much grace,

Two longing hearts now soared,

A girl who prayed for two strong legs,

And a God who gave her four.

Together we can do all things,

If we only just believe,

Just as this girl who won the race

With her blind but noble steed.

Lisa J. Schlitt

Lisa J. Schlitt
lives in Kitchener, Ontario, Canada, with her husband, Patrick, and four children. They are soon to expand their family with the addition of a seven-year-old boy. Lisa and Patrick work alongside the Bolivian Children’s Mission in Cochabamba, Bolivia, and serve as the Canadian contact and representative. Lisa is hoping to publish “The Race” into a children’s book where proceeds would be used to help sustain the Bolivian Children’s Mission. For further details about the mission, please visit their website at
www.vivabolivia.org/bcmission
or feel free to contact Lisa by e-mail at [email protected].

In Life and in Death,
Always Faithful

I
f you’ve had wonderful family relationships, you will be able to call yourself a true success in life, no matter what else you’ve achieved.

Vic Conant

Like most military children, Marc Tace knew how to wait.

He knew how to wait for his Marine Corps dad’s next job, his next homecoming, and the next deployment. Marc knew how to wait even when his dad’s absences only could be explained by the words “Semper Fi”—and for a child who’s missing his dad, that’s a hard concept.

But unlike most military children, Marc waited without moving. Diagnosed with muscular dystrophy at the age of four, Marc used a wheelchair by the time he and I were in elementary school.

I remember his wheelchair—decked out with 17th Street Surf Shop and USMC stickers—like I remember my grandparents’ brown Volvo station wagon coming up the street. Marc’s wheelchair was simply part of my elementary school experience, long before “inclusion” was a word tossed around in newspaper editorials.

And Marc’s mom became somewhat like a beloved aunt. I looked forward to seeing Mrs. Tace in the school hallway as she helped Marc with the things he needed. She’d come down the hall, dressed in a jeweled sweatshirt with the American flag on it, singing something from the Barney show to me, and Marc would roll his eyes with feigned embarrassment.

But my favorite memory of Mrs. Tace and Marc was when they found me crying in the hallway of the junior-high school. “Now, we can’t have our little Sarah crying,” Mrs. Tace said, and then she let Marc and me play hooky from school and took us to get donuts.

Later, Marc and I went to the same high school and college. He was always there, and so was Mrs. Tace. While our dads were away on military assignments, our families spent Easters and Thanksgivings together. And over time, Marc’s wheelchair got bigger and more complex.