Kelly was excited, but nervous. It had been so long since she had been in school. What if she failed? Doubts flooded her mind, but she was determined to do it, for herself and for Melissa. Soon, Kelly called me beaming with pride . . . she was going to be a graduate of the class of 2000!
It was a bittersweet moment, but Kelly found strength in something she dreaded and discovered a way to honor her daughters’ memories through her own life. With newfound focus and a sense of self that had previously seemed out of reach, Kelly enrolled in college, something she never imagined she would do. Kelly received her bachelor’s degree in May 2004 and is currently working toward her master’s degree.
And life goes on, one milestone at a time.
Gina Morgan
Gina Morgan is a certified grief counselor and author of the children’s book, If Teddy Could Talk, for families with terminally ill children. Gina was inspired to write this book by her goddaughters, Melissa and Amanda, who bravely faced life and death with cystic fibrosis. Gina is also a life coach and coauthor of the CORE Multidimensional Awareness Profile. E-mail Gina at [email protected].
Baby Steps Came in Her Own Time
No 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.
Eac
h 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
If 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.
Then I got married, moved away, and had children. In some ways, I had left my military childhood behind. I no longer knew exactly when my dad was out on detachment or home with Mom. In 1994, Colonel Tace died of a massive heart attack while serving overseas and never came home.
No one could have anticipated the strength and support of the greater military family that would keep them going. No one could have anticipated the way Marc would rise to the occasion and become the father figure for his family. And no one anticipated—although we should have—the way the Marines would take care of their own and embrace Marc and his family.
Last week, more than ten years after Colonel Tace’s death, it was that same strength and support that cradled Mrs. Tace when she laid Marc to rest next to his dad.
With an American flag in one hand and the Marine Corps flag in the other, Mrs. Tace kissed her son’s coffin and told him, “Don’t be afraid. I’m here with you.” Then, coincidentally, a military jet from nearby Naval Air Station Oceana screeched overhead, rustling the flaps of the tent where we stood. I imagined Col. Tace, from somewhere up above, smiling at the timing of those jets. I thought, Leave it to a Marine to arrange a flyby for his son’s funeral.
On June 19, muscular dystrophy finally took Marc Tace’s life, just a few months shy of his thirtieth birthday. Yet in some way, death also freed Marc because the morning Mrs. Tace found her son lying still in his bed wasn’t any ordinary day. No, the day Marc slipped from this life to the next, to find what he’d been waiting for, was Father’s Day.
And so it was, on the day set aside for fathers and their children, Marc went home to be with his dad, where this time the Marine stood waiting for his son. Semper Fi.
Sarah Smiley
Sarah Smiley is the author of Shore Duty, a syndicated newspaper column, and the book, Going Overboard. Sarah’s book was optioned by Kelsey Grammer’s company, Grammnet, and Paramount Television. It is now in development to be a half-hour sitcom for CBS. To learn more about Sarah, please visit www.sarahsmiley.com.
Perspectives
I was one of the “puzzle children” myself—a dyslexic . . . And I still have a hard time reading today. Accept the fact that you have a problem. Refuse to feel sorry for yourself. You have a challenge; never quit!
Nelson Rockefeller
It was October 25, 1881, in Malaga, Spain. Two men sat comfortably chatting, waiting for the birth of a baby upstairs. When the midwife came in, she looked troubled, and when she started to speak, she cast her glance toward the floor. “I’m sorry, the baby was stillborn.”
One of the men, the baby’s uncle and a physician, put down his cigar and got up. He walked quickly up the stairs. He picked up his tiny nephew, unmoving and blue. Without hesitation, he brought the lifeless infant close to his face as if to kiss him and breathed into his mouth. The first breath that filled the baby’s tiny lungs was still heavily scented with cigar smoke.
The baby’s mother had already entered the dark recesses of her grief as she looked on in fear and wonder as her son took a struggling breath. Could she dare to hope that her baby might yet be saved? She had hoped for a healthy child, one who would live a full and normal life. She still wanted that. The story of the doctor who breathed life into a dead baby spread around the city. Some said it was unholy; others thought it might have been a miracle. Many thought it was foolish. Was it right to interfere with nature? Did the uncle’s rash actions just delay the inevitable? Would this infant ever grow into a normal human being or contribute to society? Might it have been better to accept fate and simply let nature take its course? Yet, when the next day came, the baby was still breathing.
Soon, days became weeks, and weeks became years. Eventually, he learned to walk and talk, and to do many of the same things that other children do. He even learned to draw and paint. Of course, some people laughed when he would put
the eyes in the wrong place or make silly mistakes on other details, but other people actually thought his drawings were quite good.
As it turned out, the uncle’s action had only delayed the inevitable, and eventually the baby whose life was saved in the fall of 1881 died in 1973, but the art that Pablo Picasso created lives on.
Some people claim that his lifelong love for cigars started with that first breath. Picasso’s story is about an uncle’s hope. In a moment in which others might have only seen despair, Picasso’s uncle had a moment of hope. His family was rewarded with a healthy child, and Picasso’s genius transformed the world of art. It shows that great things can come from what seem like catastrophic beginnings, and a moment of hope can transform the world.
Dick Sobsey
Dick Sobsey is director of the JP Das Developmental Disabilities Centre and the John Dossetor Health Ethics Centre in Edmonton, Canada. Like Pablo Picasso, Dick was diagnosed later in life as having dyslexia. Unlike Picasso, he has no artistic talent and very little affection for cigars.
“I really hope Mrs. Picasso comes to Parents’ Night.”
Reprinted by permission of Martha F. Campbell. ©2006 Martha Campbell.
Chicken Soup for the Soul: Children with Special Needs Page 12
