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Making
things happen - with integrity. A weekly CyberMemo designed to keep you on task. Monday December 10, 2001 Volume III Number 50 |
FOCUS - DMM and the Poet
Jeni Stepanek is the mother of four children. A daughter and three sons. When her firstborn, Katie, came along, she noticed right away that something was wrong. After many tests, the doctors made an unhappy diagnosis – little Katie suffered a rare disease with an ominous name. Dysautonomic mitochondrial myopathy. DMM for short. It’s a highly unusual and deadly form of muscular dystrophy.
DMM is a disease of tissue cells. The component in living tissue cells that generates the energy to live and grow is called the mitochondria. DMM affects that part of the cell. It does its harmful work on a microscopic level. This terrible disease inhibits the growth and development of every cell in the body. It blocks the development of healthy tissue - muscles, organs, bones, all fall short. DMM results in cell injury… and eventual death.
Jeni ached at the prognosis. She had never even heard of DMM. Seven months after her first birthday, at age nineteen months, Katie died.
Undaunted, Jeni was assured that this awful tragedy was most unusual, and that a repeat appearance of the disease was statistically remote, so she tried again. She gave birth to a son, Steven. But six months later, she buried her second child who survived less than a year. DMM. Again.
Once more, the medical community agreed - while there may be some genetic link, there was no proof. DMM strikes randomly. There are forty variations of muscular dystrophy, including Lou Gehrig’s disease, and DMM is found in fewer than one of four thousand births. While the fact that Jeni bore two children with DMM suggested a genetic factor, there is plenty of confusion in the medical community about the root cause. Cases are frequently passed from physician to physician; hospital to hospital. Again, her advisors indicated that another repeat was even less likely than before.
Jeni still wanted a healthy child. Eventually, she would have two more children, both boys – Jamie and then Mattie.
About a year after Mattie’s birth, symptoms emerged in Jeni. By this time, she was a serious student of DMM, and acutely aware of subtleties of this menacing disease. She consulted her doctors. Their tests were conclusive. Jeni now suffered herself from an even rarer form of adult onset DMM. She learned another awful fact. An afflicted mother’s ovum contains the instruction for the faulty DNA and has a one hundred percent chance of passing the disease on to her children. Through two grievous losses and four pregnancies, Jeni was unaware that she was a carrier. And now, the doctors predicted, her two remaining offspring would inevitably suffer a similar fate as her first two.
Stevie lived three years and seven months. It would be her third funeral.
Jeni grieved from a wheelchair.
* * * * * *
Brandon is a poet.
He’s popular with our local elementary and secondary school teachers because he enjoys teaching children to write. Poetry works well, in Brandon’s view, because children, as they write, have a unique freedom to express themselves in lyrical ways using vivid imagery and action and free-flowing associations. But many children have difficulty getting words on a page. They fear they’ve made a grammatical error. Or that the word they’ve chosen is misused, or misappropriated. Or that their grade will suffer… that they miss the mark, or fall short of the standard of their age level. Some believe their ability to use language is so inferior, they’ve given up trying. With patience and care and good humor, Brandon stimulates kids to get over some of those daunting hurtles, and write.
Teachers, observing him work, watch their students open up like blossoming flowers. They become playful, giggling at their words and ideas, sharing them with gleeful chattering. And Brandon urges them forward, knowing that in the writing, creativity comes knocking. The muse comes calling.
Language is a gift. It enables us to attach meaning, to express with someone else the things that are important to us. It gives us the key to unlocking riddles, solving problems, and making progress. The gift of language can be cultivated or ignored. Lost in phrases like, “I don’t know,” “Uhhh….,” “I have no idea,” and the like, we give up on the notion that we might be up to the task of sharing our thoughts and our feelings with any degree of precision. Brandon’s mission is to equip children with the tools of verbal communication. He is building in them a foundation that will bring lifelong benefits.
The medium is poetry.
* * * * * * *
Jeni sensed from his birth day that her fourth child, Matthew, was something very special.
Her anguish was oftentimes overwhelming. In her quest toward motherhood, she lost three children to a horrible childhood disease. Now, she must herself bear the adult version of the same illness. And her fourth surviving child lives under the same menacing cloud as her first three.
But early on, this hospital weary Mom recognized that her little boy Matthew possessed an extraordinary capacity to think and speak. He’d been given the gift of language. And he reveled in using all the words and ideas he could learn. He read everything. And comprehended, too.
He created words and assembled thoughts at an astonishing pace; even as a three year old, his ideas came together in lyrical prose. And as a five year old, he wrote poems.
Jeni began to think that God had something in mind for her little boy. His little verses moved her. They were simple, direct, and profound. His sweetness offset the bitterness of the years of suffering, and his childish faith renewed hers.
Teachers began to notice, too. His disease limited him physically. He required assistance to breathe. But he has a bright smile, and an engaging manner. And his words cut through the darkness, and he would often be asked to read his poetry aloud to appreciative audiences of all ages.
Jeni liked shortened nicknames. Her first three she called Katie, Jamie and Stevie. Matthew she would call Mattie. Mattie Stepanek wrote poetry. His mother kept every one of them as a treasure. A keepsake.
'Making Real Sense of the Senses'
by Mattie Stepanek
Our eyes are for looking at things,
But they are also for crying
When we are very happy or very sad.
Our ears are for listening,
But so are our hearts.
Our noses are for smelling food,
But also the wind and the grass and
If we try really hard, butterflies.
Our hands are for feeling,
But also for hugging and touching so gently.
Our mouths and tongues are for tasting
But also for saying words, like
"I love you" and
"Thank you, God, for all of these things."
The more he wrote, the more he understood himself. It became his primary therapy. The affirmation came rolling in from every corner. The nurses and doctors and therapists all asked to hear a poem as they ministered treatments of all sorts. They would laugh and cry and exchange hugs and word of mouth spread the reports of a young poet with a gift. The United Mitochondrial Disease Foundation (UMDF) took notice as well. One of their patients was becoming something of a celebrity.
Soon the publishers came. And Mattie began to sense that his life had a purpose. He said it this way…
"I've had many close calls and God has saved me every time, so I figure God wants me to be here for some reason and I want to carry that reason out."
The publishers knew this was going to be a heart-tugging specialty book – Heartsongs by Mattie Stepanek. But not even the most optimistic among them imagined that Mattie’s words would inspire such a legion of readers. It’s been sitting on the New York Times bestseller list for weeks. Here’s what the editor say’s about Mattie’s poems –
* * * * * * *
I was shaving after a shower and workout this week with Good Morning America droning in the background. I heard Charles Gibson introduce an eleven year old boy and his mother. I moved away from the sink and over to where I could see the screen. The boy sat in a wheel chair and spoke remarkably well, considering he had a clear plastic tube supplementing his oxygen intake. His sentences were interrupted just long enough to grab some extra air. His mother sat by, smiling, as a proud mother would.
It was Mattie Stepanek and his mother, Jeni.
Charlie
talked about the poetry. And the illness. And then he asked if Mattie had a
goal in life. The boy was not surprised by the question. He said, “I want to
be a peacemaker.” And Charlie commented on the nobility of such a goal,
particularly for such a young man. And then Mattie explained that he realizes
that his life may be cut short, and that he wants whatever time he has to count
for something… and he found to his surprise that people liked his poetry and
that he was developing a platform from which he might encourage people
living in
a world filled with turmoil and trouble. Mattie would like to contribute to
bringing about “peace.”
Charlie smiled approvingly and then asked if there was someone who Mattie would say modeled the role of peacemaker more than anyone else, and Mattie answered without a moment’s hesitation, “Yes.”
“And who might that be, Mattie?” Gibson asked.
“Jimmy Carter,” said Mattie.
“That’s what I’ve heard,” said Gibson. “Can you tell us why you feel that way?”
“I’ve read everything I can about President Carter,” explained Mattie. “I admire him because he doesn’t try to get into the spot light. He’s a humble peacemaker,” the little boy said between gulps of air.
“I hear that your dream is to someday meet Mr. Carter face to face,” Gibson said.
Mattie brightened up, “Yes. Someday I hope will.”
“How about today?”
And right on cue, Jimmie Carter walked out from behind a curtain, dark blue suit, stiff white collar and neck-tie, the camera focused on little Mattie’s face, bespectacled, with owlish horn-rimmed glasses, short cropped hair, and Mattie lit up like a Christmas tree as he reached out to shake hands with the former President. The handshake quickly moved to a hug and Mattie turned to his Mom, and said,
“You knew, didn’t you?”
“Yes, Mattie,” she nodded warmly, “I knew.”
Tears streamed down her cheeks.
* * * * * * *
Mattie’s newest book hits the stand this week. With an enthusiastic endorsement from Oprah Winfrey, Journey through Heartsongs, is destined to be Mattie’s second bestseller.
In God’s grand design, Mattie has been given a few more years than his lovely three siblings, just long enough for Mattie to share his message of peace…
Psalm of Tad #358
by Mattie Stepanek
Lord, You have
Saved me from sadness,
And lifted me to light.
All my life,
I have been haunted
By the darkness,
Only my dreams gave me sight.
But my Savior
Has now turned me
Back to light,
No longer do I dwell in shadows.
Lord, You have
Saved me from sadness,
And lifted me to light.
Lord, You comfort me
In Your gentle arms,
You dry tears
Of sadness from my eyes.
My God,
I forever await You in hope,
From the ashes of Job
I arise.
Lord, You have
Saved me from sadness,
And lifted me to light.
Now I know
I have no fear,
For I am being watched
By guardians above.
The darkness
Can no longer sadden me,
For I am shrouded
In my Savior's love.
Lord, You have
Saved me from sadness,
And lifted me to light.
The One who said, “Let the little children come to me” knew that we had something to learn about life and faith from them. May Mattie’s words teach us. And may Mattie’s sphere of influence widen as long as he has breath.
And maybe even longer.
* * * * * *
It’s Monday morning. You are a leader.
Jeni’s courage in bearing four children, against all odds, brought the world a special gift. In all my research, I have not read a single word about Mattie’s father. One can only speculate. Where is he? Who is he?
I’m not sure I know why. I was strangely moved as Jimmy Carter emerged from the shadows to greet a young admirer in a wheel-chair. It was one of those pure moments that modeled character, integrity and goodness. The way things should be.
We can learn something from Jeni about determination. When she considers the impact her little boy is having on a hungry, hurting world, you can see it on her face. It gives perspective to the lonely, aching days of waiting and wondering. We can learn something from Mattie about setting goals, the power of a dream, sharing God’s goodness, even in hard circumstances. I’m learning something from Mattie about the power of language, and the penetrating potency of the written word.
You’ve got your disappointments. Your personal pain. You’ve also been given great gifts. And your outlook can affect others – for good.
Use it.
I don’t know what happened to Mattie’s father. But I do know his Father.
I hope you do, too.
© Copyright Kenneth E. Kemp 2001
LeaderFOCUS is brought to you by Good Stewardship Associates
Special Thanks for Design by my good friend David Belcher, owner of Rhino Media Group and creator of WisdomGram
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