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Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs

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Overview

When her son, Mattie, was born with a rare disorder now known as Dysautonomic Mitochondrial Myopathy, Jeni Stepanek was advised to put her child in an institution and "let nature take its course." Instead, she nurtured a boy who grew to become a young man who transformed his hardships into a message of hope and peace that touched millions. Mattie J.T. Stepanek was a best-selling author, publishing six collections of his Heartsongs poetry and one collection of peace essays that all became New York Times ...

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Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs

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Overview

When her son, Mattie, was born with a rare disorder now known as Dysautonomic Mitochondrial Myopathy, Jeni Stepanek was advised to put her child in an institution and "let nature take its course." Instead, she nurtured a boy who grew to become a young man who transformed his hardships into a message of hope and peace that touched millions. Mattie J.T. Stepanek was a best-selling author, publishing six collections of his Heartsongs poetry and one collection of peace essays that all became New York Times best-sellers and eventually sold more than two million copies; he gave inspirational talks to thousands and became the National Goodwill Ambassador for Jerry Lewis's Muscular Dystrophy Association. But his legacy lives strongest in his choice--his decision to celebrate life and perceive it as a blessing even during the most painful moments. It is that legacy that Jeni Stepanek honors with Messenger. Telling the story of Mattie as only his mother could, Jeni Stepanek recounts the intimate moments of her little boy's life, a life that became larger than life as his message spread across the world. In describing her son's trips to the beach, his love of reading, his obsession with Legos®, his planning of a surprise birthday party for his mom, we see an ordinary child who just so happened to be facing a life-threatening health situation. In recounting Mattie's sadness at losing all of his siblings to the same disease, his astonishing intellect, his belief that he was channeling God's message into his poetry, and his dedication to spreading the message of peace he so believed in, we see the extraordinary boy who lived every day given to him to the fullest.

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Product Details

  • ISBN-13: 9781609810832
  • Publisher: Oasis Audio
  • Publication date: 9/1/2010
  • Format: CD
  • Edition description: Library Unabridged, Library Edition
  • Product dimensions: 6.30 (w) x 6.10 (h) x 1.10 (d)

Meet the Author

Jeni Stepanek is the mother of Mattie Stepanek, the New York Times best-selling author and humanitarian, who passed away in 2004 from Dysautonomic Mitochondrial Myopathy. Jeni lost three other children to that same neuromuscular disease and has the adult onset form herself. She holds a doctorate in early childhood special education and is an award-winning speaker, writer, and advocate. She lives in Rockville, Maryland.
 

Larry Lindner has penned numerous best-selling books ranging from memoirs to health titles and has published a long-running nationally syndicated column in The Washington Post and a column in The Boston Globe. He lives in the Boston area with his wife and son.

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Read an Excerpt

Chapter 1

Sunrise on the Pier

. . . The sky grows
Shadows, rising
With the passing of time. . . .
The sky sighs,
Ebbing with tides
Of pre-dawn nothingness,
And yet,
Seas of everything created,
Tucked into waves. . . .
The sun rises
Caressing spirits
With the passing of time
And the promise of hope
And the belief of life
That gets better with age
As we edge into
The day that once was
Our distant tomorrow.

— From “Night Light” in Reflections of a Peacemaker: A Portrait Through Heartsongs, page 29.

Nell was getting more and more soaked each time the water sprinkler circled back around. She had fallen off the boardwalk into the beach grass on her way back from the ice cream shop and was now unable to get up, afraid she might have broken her leg. She also had a painful abrasion on her forehead.

Still, she was laughing to herself. While she waited for help getting to the emergency room, the sprinkler system came on automatically, and she knew the sight of her sitting there dripping wet was ridiculous— even more so because Mema, who had gone with her for ice cream, kept running off each time the ch ch ch ch ch of the sprinkler circled around. Mema had wanted to stay right by Nell’s side while others in the group went for help but had her hair done that day and didn’t want it ruined. So she would jump back with each spray, apologizing from a distance about her visit to the beauty parlor. This made Nell laugh even harder.

We were toward the end of our annual week at the beach on North Carolina’s Outer Banks. Mattie and I had been coming every year since 1992, when he was two, courtesy of my dear friend Sandy Newcomb and her parents, Mema and Papa (whose real names are Sue and Henry Newcomb). They always stayed in a two-story condo right by the water— a crazy flophouse with red and purple walls and more air mattresses and foldout sofas than bedrooms—and they had us down for a week or more every July.

The summer of 2000 had been better than ever in the sense that all our kin were able to make it for at least a couple of days. By “kin,” Mattie and I meant the family with whom you didn’t necessarily share blood but with whom you’re related through life. These relationships were always wonderful to him, whereas blood relations could be sweet or sour.

Our “immediate kin” consisted of Sandy, who by that point had become more like a sister to me and like a favorite aunt to Mattie; Sandy’s daughters, Heather and Jamie Dobbins, and her son, Chris Dobbins (all were teenagers or young adults then); and Mema and Papa. We playfully called this group the “Step’obbi’comb Fam”—combining Stepanek, Dobbins, and Newcomb into one “kinship unit.”

Some “extended kin” were also a part of this beach vacation, including Mattie’s best friend, Hope Wyatt; Hope’s mother, Susan (Susan’s husband, Ron, on a peacekeeping mission in Kosovo at the time, was the one who brought Mattie the United Nations flag); and Nell Paul and her husband Larry. Sandy had met Nell in a La Leche class when they were both expecting their first children, and through her I had become good friends with Nell, too. Mattie called us the Three Granny’olas.

It turned out Nell hadn’t broken her leg after all. And although the gash on her forehead was a nasty one, it wasn’t anything time and some pain medication wouldn’t heal.

Nell had been a source of humor all week. The night we arrived, she explained that she was having health problems that made it difficult for her to stand on her feet too long. But she offered to help Sandy make a chicken tetrazzini dinner that night by calling out, without a hint of irony, that at least while sitting at the table, she could very easily “cut the cheese.” When we all burst out laughing, she responded with some amount of confusion and indignity that “not being able to walk around a lot has nothing to do with my ability to cut the cheese”—which only made us roar.

Nell grew up a preacher’s daughter in the South in the 1940s and 50s and simply didn’t know certain idioms and other common wordplays. We had such fun teasing her all week about the T-shirts you see at the beach with suggestive double entendres and such. We entitled that vacation “The Education of Nell,” playing practical jokes on her as we went. One day I looked sidelong at Mattie with a mischievous gleam and said to her, “I suppose you’ve never heard the phrase ‘duck on the head.’” Mattie went along and called out, “Mom, I can’t believe you’d even tell her that. That’s, like, rude.” I then said to Nell with feigned indignation, “Never mind, we aren’t going to go there.”

Later in the week, Mattie and Hope staged a tattling scene wherein Hope accused Mattie of saying “duck on the head,” and Mattie “defended himself” by responding that he was only telling Hope why she shouldn’t say it, and I “scolded” both of them. Nell felt terrible. She had been repeating the phrase here and there in the belief we had been pulling her leg and thought it was she who got the kids going. We didn’t disavow her of this notion. Then, on one of our last days there, we all tied tiny stuffed ducks to our heads and went around the side of the pool where Nell was sitting, quacking at her.

Mattie was having the time of his life. Chris would throw him into the deep end of the pool, and he’d soon be bobbing to the surface, yelling to be thrown in again. He also began interviewing all the kin for a fun book he and I were envisioning, The Unsavable Graces. He wrote goofy poems and went to the top of a giant sand dune called Jockey’s Ridge. He went with me to Mass recited in Spanish, which we did every summer; doing so allowed us to really think about the essence of God in rituals rather than just recite prayers from rote. He and Hope, both blond, ambushed Chris, also blond, while Chris was trying to flirt with a pretty girl in an orange-pink bikini, saying, “Daddy, we’re hungry, and Mommy said it’s your turn to fix us lunch.” Chris later married that girl, Cynthia, and Mat- tie was best man at their wedding.

Mattie’s disability had progressed since the previous summer, but we were used to that and always found ways to accommodate his condition without letting it ratchet down the fun. For instance, when Mattie was six and seven, he could walk to the pool, do backward flips into the water, swim laps, and dive down ten feet to the bottom to grab pennies. As long as he remained attached to a tank of oxygen, he would be fine. We would rig a twenty-five-foot tube that connected the nasal cannula in his nostrils to the tank so he could swim anywhere in the pool and never be without the supplemental oxygen. When he wasn’t in the water, he would drag the tank behind him on a cart, sometimes using his cannula and tubing as a jump rope and letting other kids take turns as he swung it.

When Mattie was eight, he needed a wheelchair with the oxygen on the back of it to get to the pool but could still move around pretty well once he was in the water. The summer he turned nine, he went from one oxygen tank to two, but as long as he had the extra oxygen, he didn’t have the frequent feeling that he was suffocating.

This time around, Mattie was too weak to swim much—he would come up gasping—but he could still enjoy Chris throwing him into the deep end. To compensate, we bought a ten-foot blow-up alligator fl oat that Mattie could hang on to in the water. The object was always to continue the fun no matter the challenge. There was always another solution, another fix.

Granted, this year there had been changes that were more marked than in previous summers. At night, Mattie now had to be on a BiPAP machine, short for bi-level positive airway pressure. It involves wearing a mask over your nose or mouth or, in Mattie’s case, both, that helps you breathe easier when you’re short of breath. Mattie also had to wear it during the day if he felt exhausted, such as right after pool time. This was in addition to the pulse oximetry and cardiorespiratory monitors to which he was connected anytime he was sitting or lying at rest since the day he was born, which would let us know if his heart or lungs weren’t doing what they were supposed to. The dysautonomic in dysautonomic mitochondrial myopathy means things in the body that should happen automatically don’t always. For example, when someone switches from physical activity to sitting, the heart self-regulates by beating more slowly. But Mattie’s heart could overshoot the mark and start to “forget” to keep beating while he was at rest rather than simply slow a bit; the fine-tuning just wasn’t there. If his heart rate fell too low, the machine triggered an alarm that would signal someone to jiggle him or provide other tactile stimulation or remind him to breathe more deeply for a minute until his heart could receive the “signal” and get its pumping back in sync with his body’s needs.

Understanding this condition and how to deal with it came slowly, across the lifespans of all four of my children. The medical community didn’t even have a name for it until my two eldest had died. It was simply called dysautonomia of unknown cause, and early on I was told that subsequent children would not be affected. Not until Mattie was two years old and my third child was months from death did doctors understand that it was a condition of faulty mitochondria—an essential component of every cell in a person’s body.

I was actually diagnosed first—with the adult-onset form—then the children. Two years later, after my third child died and Mattie was only four, I was in a wheelchair. Now we were all too familiar with the condition’s devastating effects.

We were used to adding supports and medical machinery to compensate for the detrimental effects of this progressive condition, and then we would keep going. But that summer, the changes weren’t just in the BiPAP machinery or even in the fact that Mattie didn’t have the energy to really swim. Hope, who was two years his junior, was now several inches taller than he was. Mattie’s shoe size, in fact, was the same as in kindergarten—a child’s 11. Growth taxed Mattie’s autonomic system, and somehow his body knew that. In addition, he could not walk across the beach to the ocean. Mattie didn’t need his wheelchair because he was incapable of walking; he needed it in large part because he would tire so easily.

In previous years, he had the energy to walk across the sand to the waves so he could bodysurf (always attached to his oxygen). He had to. We didn’t always have a special beach wheelchair that could get traction over the sand. But this summer, after the first day of walking out to the water, he said he couldn’t go back; it took too much out of him.

We did have a rented beach wheelbarrow that got me down to the waves that first day, and I told him he could hop on while someone pushed. But he said no. He was aware that he lacked the energy to handle the waves. And he knew he wasn’t up to getting overheated on the hot sand; his condition also compromised his temperature stability, so that once he became too hot or too cold, his body had a hard time readjusting to normal.

Mattie didn’t have the strength to climb Jockey’s Ridge, either, a massive sand dune in the middle of the Outer Banks that offers stunning views of the barrier island chain from the top. Park rangers drove us up in a jeep that year. He was still his charismatic self, chatting up the rangers and people who had hiked up to fly kites. But instead of turning cartwheels at the top, as he had done the year before, he sat on a lawn chair.

We treated all of Mattie’s limitations as challenges to be gotten around rather than game changers. Of course anybody could see that they were. But my aim was to help Mattie live on a day-to-day basis as though the assaults on his body could always be taken in stride, that any new weakening or new machinery were just part of life rather than shifts that called life into question. I even managed to convince myself much of the time that no symptom of illness was something a combination of medical help, ingenuity, and prayer couldn’t overcome.

Mattie was ahead of me, though. Even on the first day of that vacation, he let me know. For fun, he went around asking everyone why they had come to the beach house that summer, either videotaping their responses or writing them down. It was all note-taking for the Unsavable Graces book. Everyone gave silly answers. Sandy said she came to learn Braille for a course she was taking and not get sick; the summer before, she had come down with an awful case of bronchitis and was laid up most of the time. Nell said she had been planning on thinking three deep thoughts but had already done that in the car so was at a loss as to what she was going to do the rest of the week. Chris said he was a plumber and had come to fix the sink, code for being on the hunt for pretty girls.

Then I turned the tables and asked Mattie what he was there for, figuring he’d give as ridiculous an answer as everyone else. But he just looked at me and said, “I really need to consider the meaning of life this summer, because life is changing.”

Caught off guard and wanting to keep away from that subject, and not wanting to spoil the others’ fun, I chided him. “Mattie, we’re all clowning around, and you’re being serious and philosophical.” Immediately, I saw the hurt in his eyes—and have regretted to this day the words that fell out of my mouth at that moment. He was headed someplace else, even on day one.

Mattie remained ahead of me, however. After that exchange, he kept what he needed to say bottled up throughout the week, making sure his words mirrored the general festive mood. He jumped into as much physical activity as he could handle. He participated in the practical jokes. He played board games with the rest of us. Even when he had to take breaks more frequently than he used to, he would beg off joining in some group fun as casually as possible and go to his room to read or write poetry (and then end up falling asleep, even in the middle of the day—his fatigue was that overpowering). Not that he didn’t truly enjoy himself to the hilt. He did. But it wasn’t until our sunrise on the pier that he spoke his heart.

Sunrise on the pier was a ritual Mattie and I engaged in, without fail, the morning of our last full day at the beach every year. It was our thin space. A preacher once described thin space to me as that place where your spirit and God are in closest contact. Generally, we’re all aware we have a spirit, an essence, that’s deep inside us. At your thin space, the veil separating your essence from your being becomes transparent enough that the spirit becomes undeniable. Instead of being a silent voice, your spirit more or less shows itself to you; you know it intimately rather than simply being aware of it.

All of the beach was thin space for Mattie and me. Where we stayed on the Outer Banks was not an arcade-laden, honky-tonk resort spot with some sand and waves that happened to be nearby. It was where, on an island jutting into the ocean, the sea met the sky and the earth; past, present, and future converged in an absence of measured time; and what we felt actually became something we could behold.

I had been coming to this stretch of beach since 1976, long before Sandy invited me to join her on family vacations. I didn’t meet Sandy until 1989, but by coincidence, we had both fallen in love with the same place. After my first two children died, I even pitched a tent down on the sand near the pier to try to catch my spirit up to my life. When you lose a child, your body keeps moving, but your spirit doesn’t want to come along. It drifts behind. At the beach, my spirit told me there’s still more there. It allowed me to feel the essence of my children and the presence of God, which put it back in sync with my body and allowed me to go forward.

Now the beach, this pier, was the place where my spirit and Mattie’s could talk to each other directly, without anything muffling what got said or what got heard, even between parent and child.

It never mattered whether it was a cloudy sunrise and the sun didn’t show. An unrise, as we called such mornings, was just as significant.

We always came down to the pier before five A.M., at least a full hour before the sun actually rose. We had to start when the stars were still out, when it was still dark and time was taking a last look backward before moving forthward, as Mattie called it.

That morning, no breeze stirred as we made our way to the edge of the pier. The two of us wheeled out together across the warped wood, slowly, slowly, sounding a soft, almost rhythmic bumpedy-bump on the weathered planks, so we wouldn’t be jolted out of our seats.

Mattie’s ability to handle the chair on the rickety wood slats was something of a small marvel, considering his wheelchair beginnings. Fine and visual motor skills were never his strong suit, and he had to learn little by little how to navigate with the chair’s joystick. When he first started using it, I took him to the first floor of a mall department store and had him circle around while I waited at the juncture of mall and store. I told him not to move out of anybody’s way, to just stop where he was if someone came toward him, because he wasn’t ready to back up or steer to the side.

After a few turns around the bank of escalators that stood in the middle of the floor, he said he had the hang of it and was ready to “step” aside should anyone come toward him. I said okay, with misgivings, and the next thing I knew he was wheeling gleefully from the store into the mall exclaiming, “Mom, Mom, I did it! I backed out of someone’s way!” At the same time, however, alarms were going off. It turns out that in backing up, he had hooked on to a lingerie cart and had left the store with a bevy of unpaid lady’s undergarments in tow.

Because the pier was so long and because we had to go so slowly, it felt like we had been rolling hours out to the middle of the ocean by the time we reached the edge. In previous years, we’d make our way to the end of the pier holding hands and laughing, but not that day. In the dark that morning, Mattie started out quiet.

We began our talk the way we always did, with Mattie asking about his sister and brothers. “Tell me about Katie,” he would implore. “Tell me about Stevie, about Jamie. Tell me about how Jamie took care of me, how I took care of him and became the big brother to him when he got sick.” Mattie used to “read” to Jamie. Mattie couldn’t speak when he was a toddler because the trach tube he had in his neck at the time limited the use of his vocal cords. But he got around it by communicating with American Sign Language. Jamie, for his part, couldn’t see what Mattie was signing because two years before he died, he lost meaningful use of his vision. Yet Jamie would sit there and smile as Mattie signed for him the illustrated stories in children’s books. They had found their own thin space between them.

These reminiscences were crucial to Mattie. When he was about seven years old, he started crying hard, seemingly out of the blue, and when I asked him what was wrong, he told me he was beginning to lose his memories of Jamie. He remembered sitting in Jamie’s bed and squeaking his little yellow caterpillar in his brother’s ear after Jamie had lost use of his sight, Jamie smiling in response. And he remembered the two of them sitting in each other’s chairs for fun and my reading to the two of them together, and Jamie’s little white casket with the contents I put in that he would take with him to Heaven—but not much more, and it frightened him as well as saddened him to be losing touch with memories he held sacred.

He was saddened, too, about not having known Katie or Stevie, and would tell me on the pier that he missed not ever getting to hear them laugh, or to kiss or touch them. In 1993, when Stevie would have turned six, Mattie told me he did not know whether to sing a nursery rhyme for the baby Stevie was when he died, or to talk about fishing and other life discoveries that would have interested the little boy Stevie would have become by then. Mattie was three at the time.

When Mattie finished talking about his siblings, he asked me what I wanted to be when I grew up. It was part of our pier ritual, our way of moving by degrees from what was to what will be. And I always told him the same thing—that I wanted to be eighty-three. He would laugh and respond by saying that you couldn’t be a number, and I’d answer, “Okay, then, I want to be a beach chair philosopher, thinking deeply by the ocean and sharing thought-provoking stories.”

This would lead to my asking Mattie what he wanted to be. In years past, Mattie always talked about wanting to be a daddy—not simply a father, who wasn’t necessarily close, but a daddy. He was going to have seven children and had already named them. The oldest was a namesake, Matthew Joseph Thaddeus Stepanek, Jr., who would be called Tad. Second would come Kathryn Hope, to be called Katie Hope after his sister, Katie, and his favorite word (and also his friend Hope, who he was fine with being his children’s mother). Third and fourth would be Steven Blaine and Jamie, after his brothers, Stevie and Jamie. Since “Jamie” was not just his brother’s name but also one of Sandy’s daughter’s names, she’d be a girl. Her middle name would be Margaret after his great-aunt Margaret, who died around the time he was born but had been very good to me while I was growing up. Mattie liked that he and I played Parcheesi with the same dice Margaret and I had rolled when I was a child.

Fifth came Patrick Noah (“Patch,” for short), followed by Theresa Rose, or Tessie, which was going to be Mattie’s name had he been a girl. Mattie planned on giving Tessie to me, and when I’d tell him his wife wasn’t going to like that, he always explained that he’d make it up to her by letting her name the seventh child whatever she wanted, with the proviso that if she didn’t choose a name within thirty days, the right to give a name would revert back to him, and in that case he would choose Sophie and Sadie since the youngest children would then be twin girls.

Pure fun as all this was, the idea of Mattie’s fathering children wasn’t totally in the realm of fantasy, and he knew that. Mitochondrial diseases like his are invariably handed down through the mother because virtually all of a person’s genetic code for mitochondria comes from the egg— there’s essentially none in the sperm. Thus, Mattie knew that if he made it through adolescence—and one doctor had even told him that adolescence would be a make or break point for him because the body goes through so many changes at that time—he could have children and not risk passing on his disease.

But as night shifted toward dawn that morning on the pier, Mattie didn’t talk about having children. Instead, he went “off script” and said that sometimes he worried about what he would do if I died before him. He told me that if something happened to me first, he’d go into his room and stay there until he could come out and cope, that he’d end up having to shave a very long beard because that’s how long it would take him to be able to move on. But he would move on, he said, because “you can’t lie down in the ashes of another person’s life.” He talked about how after a time it would be okay to laugh again, to play with friends, to have fun.

Of course I nodded in agreement while he spoke, and did what a mother does in my situation—told him that I’d stay here as long as I could. While a prognosis is something of a moving target, the one I had been given left me with a vague “six months to ten years.” But Mattie wasn’t looking for an answer from me. He was setting me up.

“If I die first,” he said, “you have to do the same thing—move on— because I could go before you, Mom.”

I wanted to pull Mattie away from this line of thinking. His whole life was spent on the edge, yet we had always managed to skirt it, to fi nd some semblance of stable footing and keep our focus on daily living. Now here he was looking over the edge, but he was just a boy; it was my responsibility to keep him looking in the other direction.

“Mattie,” I joked with him, “you have at least until you’re seventeen. We’ve had the signs.” Mattie was born on the seventeenth day of the month, in the seventeenth minute of the seventeenth hour (5:17 P.M.), measuring seventeen inches and weighing 2,017 grams, and I had always used that to calm his fears—not to mention hang on to it myself as if it were a prophecy. Mattie nearly died minutes after he was born. Seventeen years of age sounded pretty good.

He wouldn’t let it go, though. “Maybe I wanted to have kids,” he said, “because you want to leave behind lessons, leave behind everything that matters to you. That’s how you touch the world. But I have to reconsider what it’s like to leave a legacy. I think my life is the opposite of what it says on your coffee mug.”

On my coffee mug it said, “I may have to grow old, but I don’t have to grow up.” Mattie said, “I think I may have to grow up without growing old.” He went on: “I think we’re going to have to define differently what I’m going to be. We’re going to have to define my growing up differently.

“I want to be remembered as a poet, a peacemaker, and a philosopher who played,” he added after a pause. He had mentioned those things before in various contexts, and even at the pier in prior years. But that was the first time he had strung them together in a definitive way, underlined them, so to speak.

I didn’t want to hear Mattie creating an epitaph. At the same time, I had to let him talk. His mortality was facing him, and I couldn’t pretend otherwise. I had already shortchanged him earlier in the week.

Now I understood why he reacted so strongly a few days earlier when Nell had to go to the emergency room. He had been really worried, crying and praying for her, afraid that something was very wrong. I felt I understood at the time—Mattie’s whole life was filled with loss, with visits to emergency rooms that ended with long stays in the hospital and life-altering compromises. But what I realized on the pier was that even while I was aware he was losing ground, he was sensing it in a way I wasn’t able to see. As close as I could possibly be, I was an outsider looking in.

It wasn’t as if once he brought up living a truncated life, we abandoned all that was ritual in our visit to the pier. We still spoke, as we did every year, about choice—about how you can’t choose whether you’re going to have a disability, or your mother is going to be in a wheelchair, or your parents are going to be divorced, or you’re going to be so without means at times that you have to stand in line for handouts at a church food pantry. Mattie lived a life in which these and so many other things happened that would never have been anyone’s choice that we made it a point to list the things you could choose: whether to talk about someone behind his back, whether to be your best self and do your best work, whether to focus on what you do have instead of what you don’t, whether to go forward despite challenges or sink into despair.

We also assessed our week as we always did, reviewing all the practical jokes and shenanigans with everyone. We talked, too, about Mattie’s poetry, which was so important to him.

But there was a new urgency about it, about the poetry and about the future. He said he needed to get his books of poems published. He had written several volumes of Heartsongs poetry by that point, “Heartsong” being a word he coined for himself to get at a person’s essence—the longings and hopes and feelings that both describe and stir each of us. It is our charge, Mattie said, to take what we wish for in our Heartsong, package it in the best way we can, and offer it to others. In giving the gift you want most, he felt, you get it back. Mattie’s package was his poetry; his Heartsong, a passion for hope and peace that grows from happiness, in a life that medicine kept dictating held no promise of hope.

Mattie also said he needed to talk to his role model, Jimmy Carter, to find out “if I’m doing peace right,” and that he needed to get his message of hope and peace on Oprah so that it could be spread.

He had been talking about these things for a while, but previously they had seemed like the kind of yearnings all kids feed off of sometimes. Now they sounded like goals for an adult who needed to figure out how to make them happen.

“Mom,” he said, “I need to live everything that matters to me quickly. I need to do everything I want without growing old. If I can get my poetry published, it’ll be like I’m having children.” Mattie and I had talked in previous years about a person’s creating something that lasts beyond his life span—his echo, his silhouette. That day, he was addressing it more as a plan than a philosophical musing.

Then he said, “I don’t think I’m ever going to be back here. March thirtieth is a dark day for me.”

I felt a kind of nauseating ache start to rise. My daughter, Katie, was only twenty months old when she died, but the day before, she put away all her toys and refused to play with them. “Bye-bye,” she said. “All through.”

“What are you talking about, Mattie?” I said. “You’ve always been on machines. There are tons of things that can still be done.”

“No, Mom,” he answered. “I don’t see next July. I don’t see this pier in my future.” The pier marked time for us. It was a kind of punctuation mark to our lives, a breather to go over where we were at that point and how we were going to move forward, how we were going to celebrate. It was where we planned our “what nexts.”

The pit in my stomach rose higher. “You’ve got summer camp next year,” I told him, although it was more like pleading. “You’ve got holidays.” After a moment, I added, “Do you think you’re going to die on March thirtieth? Because we’ll watch. We’ll take extra care to watch you around that time.” I had debated whether to say it out loud, considering that if the thought remained unspoken, I might be able to hide it, keep it from having a chance to become reality.

“I’m just saying I can’t see past March thirtieth,” he said. “I can’t fit anything after that into a context.”

“Don’t you see anything at all after that day?” I asked. “Easter? Your birthday?”

“Maybe Thanksgiving at Sandy’s house,” he answered finally. “But I’m not sure if I’m seeing it, or just wanting it.”

“Well, what do you see? Do you see people? The table? Do you see Christmas after that?”

“Mom, please let’s hush. Let’s just sit here. I have to memorize this.”

“But, Mattie, we’re videotaping this,” I said. Mattie always liked to tape a minute of sunrise, shut the camera for ten minutes, then tape another minute so that everyone back at the beach house could see what they had missed.

“No, I’ll remember what this looks like, what it sounds like. I have to memorize what this feels like,” he countered. His voice had no trace of sadness or melancholy. It was more like an expression of “Wow, I’m really going to miss this,” an anticipatory loss.

By now the sun was almost fully risen. It was one of the gorgeous, brilliant sunrises, not at all a gray and muted shift into the day but a ruby pink with shades of orange. Mattie commented that it looked more like a sunset than a sunrise—a gift from God, he said, because it combined his favorite color, the color of sunset, with his favorite time of day, sunrise.

I stopped trying to reassure myself, and we just sat quietly and looked out to the horizon. I put my hand on top of Mattie’s and told him I loved him. We said that to each other a hundred times a day, every day, and we meant it; it wasn’t just words. But it especially needed to be said then.

Everything looked as wonderful as it ever did—blue, cloudless sky; sun sparks dancing on the waves; strong, bright light. We even began to see movement in the water—dolphins. It was a common sight on the Outer Banks, but one that always delighted us. Except this time we saw water spouting up. It wasn’t dolphins but whales! Water was spouting out of their blowholes—calves and their mothers. We could even hear their beautiful, haunting song.

We watched the whales as they moved farther and farther away from land and finally swam out of sight. Then we sat just a minute more before slowly turning around to roll back.

The next morning, after a last day of diving into vacation giddiness with the others, we loaded our things into the van and headed for home. It was Mattie’s tenth birthday.

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Customer Reviews

Average Rating 4.5
( 56 )
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See All Sort by: Showing 1 – 20 of 56 Customer Reviews
  • Anonymous

    Posted December 27, 2009

    More than a mother's love for her son, Messanger is an inspiration beyond disabilities literature.

    I never got to meet Mattie Stepanek, while living in Maryland, however I knew of him from colleagues in the Prince Georges'County Public School District who had worked with him when he first started school. I knew of his poetry, his friendship with former President Jimmy Carter, Oprah Winfrey, and other famous people. He was going to do a book signing at the Barnes & Noble in Bowie, Maryland, which I planned to attend, however that was cancelled as he had to return to the hospital. He was unable to ever do public book signings again. When I saw Jeni Stepanek's book, Messanger, how could I not want to read it? I am so glad I did!
    Jeni Stepanek writes with warmth, love and caring as only a mother can about her incredible son - poet, advocate, inspirational speaker, friend and kid, yes, kid. Jeni gives a balanced account of her struggle along with Mattie's, and it's not all gloom. She knew the outcome, yet she writes of Mattie's and her capacity to still have fun, build memories and engage in the world better than most. Jeni not only articulates what Mattie's life was like, but her own focus on developing herself as well as Mattie's talents. She has left us all with a gift of how to live each day beyond what we think we are capable of and to cherish each moment. I felt priviledged to have finally been able to meet both Mattie and Jeni through her words in Messenger. As an occupational therpaist and as a Christian, I thank her for having written this book.

    6 out of 6 people found this review helpful.

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  • Anonymous

    Posted November 3, 2009

    I Also Recommend:

    A compelling saga of one family's dealing with a terminal illness

    I just finished reading Jeni Stepanek's wonderful biography of Mattie Stepanek's life and message. The novel beautifully outlines Mattie's trials and tribulations throughout his difficult life as told by his mother. This book shows that Mattie's message of hope and peace is universal and still pertinent in today's world. Jeni Stepanek has captured how Mattie came to be a peacemaker in his life through a superb narrative. This book is well worth your time and will truly change your perspective on life. Buy It!
    ~ A Fan and Supporter

    4 out of 4 people found this review helpful.

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  • Posted June 17, 2011

    I Also Recommend:

    Peacemaker

    MESSENGER is a powerful and inspirational message to all who read it. It's a beautiful testimonial of strength and love beyond measure. This is Mattie's legacy. This is a tender read, a detailed account of the life and feelings of Jeni Stepanek's son Mattie who suffers the pan of muscular dystrophy. Mattie was an angel from heaven who looked beyond himself to do good for others, in spite of his own struggles to survive. He brought peace, love and harmony to all who knew him. This young man's indomitable spirit lives on even though he lived a short of 14 years but has left a legacy of inspiration and hope for all who come into contact with his writings. His dream was to be known as a "Peacemaker" and he achieved his goal lovingly. I can't recommend this one high enough!

    2 out of 2 people found this review helpful.

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  • Posted April 6, 2010

    Life Changing

    I read the review in People magazine about this book and it sounded like something I would enjoy. Once I started reading the book I could not read it fast enough. I was overwehlmed with such an inspiring story about a special needs family. Not only did they suffer loss of loved ones but Mattie and his mother were both disabled. To have so much negative in your life yet be able to see beyond that and be such inspiring and positive human beings. This true story has been a life changing experience for me. Since reading about the incredible journey that Mattie lived, with the support and unconditional love and sacrifice from his mother, I have grown as a person. I am 49 years old and have never read or seen anything that has inspired me like this story. I have recommended everyone I talk to to read this book. I have given a book to each of my own children. Mattie's story will make you cry, but not because of being sad, but because it will touch your heart. This story can truly help you put your life into persepctive and see what is truly important.

    2 out of 2 people found this review helpful.

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  • Posted December 4, 2009

    I Also Recommend:

    The Message goes on -- and on -- and on!

    Mattie's mom, Jeni, is not only faithful to Mattie's message, after all she largely nurtured it, she is the most authentic person to describe its birth and growth, while urging us all to take our part in spreading it farther and farther.
    Mattie's message that Peace is possible is so simple that it is disarming.

    At its root, Mattie said:

    "Peace can begin over a cup of tea and a game of chess."

    "Make peace an attitude.
    Make peace a habit.
    Make peace a reality."

    As it was written by a pre-teen, it is readily understood by all from those ages up.

    Jeni shows us that Mattie was, first of all, very much a boy who enjoyed all the fun and games that every normal boy enjoys. He lacked the opportunity to fully enjoy them because of his incredible handicaps of muscular dystrophy, from an early age.

    We learn what an ingenious practical joker he was, and how deeply it was rooted in his nature. He loved games and played them with both joy and enthusiasm. To say that Mattie was an all-around boy would be the understatement of the year. Jeni describes for us the depth and breadth of that missed description.

    Please read this book, enjoy it and allow it to have its greatly beneficial effect on your life. You will be pleased to find that you can become a more peaceful person, contribute to the peace of those around you, and enjoy a much more rewarding life -- just as Mattie did while he remembered to "Play after every storm."
    Bob Balkam

    2 out of 2 people found this review helpful.

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  • Posted November 9, 2009

    Remember to play after every storm....

    Messenger is written by Jeni Stepanek and is an excellent biography about the life of his son, Mattie J.T. Stepanek, the young author behind the bestselling collections of Heartsongs poetry & peace essays. It tells about Mattie's upbringing, his love for his family as well as extended family and friends, his hardships with having Dysautonomic Mitochondrial Myopathy, his incredible passion to live life and his dream to be a Peacemaker.

    I thought the book balanced well with the happy and sad stories of Mattie's life, including insights from his mom, the author. The book also shows the humorous & witty side of Mattie, even during some of his 'storms', and includes some of Mattie's published and never-before-published poems.

    I believe there is something we all can learn or relate from reading this book and grow from it. He had an extraordinary life and beaten many odds over the course of his young life before he passed away in June, 2004. During his life and after his death he gave people inspiration and hope. His Heartsongs live on in his books and people who met or learned from him.

    I highly recommend anyone to read this book. It is a celebration of a Messenger's life. And if you have not read any of Mattie's Heartsongs books, I encourage you to read them as well.

    Lastly, I feel strongly of Mattie's philosophy and encourage everyone to "Remember to play after every storm."

    1 out of 1 people found this review helpful.

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  • Anonymous

    Posted July 27, 2014

    Keb

    Nodds alright then but if your name is put up on the BHKL i will protect you your a nice good person and i want to keep you save send anyone here that you think would be a good bounty hunter and also BHKL stands for Bounty Hunters Kill List

    Was this review helpful? Yes  No   Report this review
  • Anonymous

    Posted July 27, 2014

    Calli

    o.o Oh okay, thank you... and will do. She smiles.

    Was this review helpful? Yes  No   Report this review
  • Anonymous

    Posted April 12, 2013

    Touching story

    Very good book.

    Was this review helpful? Yes  No   Report this review
  • Anonymous

    Posted June 18, 2012

    Messenger The Inspiring Story of Mattie J. T. Scepaneck

    A great book about a little boy, his family and the struggles of his life. He and his mother have such a healthy attitude about Mattie's devastating illness and the every day trials. One often wonders how they are able to get through this pain but realize they have a greater power in their life and it is He who carries both of them through all of it.

    Was this review helpful? Yes  No   Report this review
  • Anonymous

    Posted February 18, 2012

    Touched my soul

    An Angel from God Thank You Jeni

    Was this review helpful? Yes  No   Report this review
  • Anonymous

    Posted January 30, 2012

    Highly recommended

    Precious mom and son story. They are inspirations to all who "meet" them. Great read that will make you appreciate what you have. This book will make you believe in miracles and the strength of love and a positive attitude.

    Was this review helpful? Yes  No   Report this review
  • Anonymous

    Posted December 26, 2011

    Touched my heart

    This wonderful book really touched my heart. I don't normally re-read books, but I'm now on my 3rd time. I get something new each time I read it.

    Was this review helpful? Yes  No   Report this review
  • Anonymous

    Posted October 25, 2011

    Very insightful and inspiring.

    Teaches us the art of keeping focused, remaining positive and grateful for being placed on this earth. What a testament to the love between this mother and son. We must communicate!!!

    Was this review helpful? Yes  No   Report this review
  • Posted June 6, 2011

    Most totching book ever

    I have read many books and this out of all is my favorite. I love the hart warming story that goes with the positive little boy. If i had to describe Mattie to any person i would say that he never starts a sentence with I.

    Was this review helpful? Yes  No   Report this review
  • Posted June 4, 2011

    more from this reviewer

    Heartfelt & Inspiring!

    This book will change your life! This wonderful little boy and his Mom were a remarkable duo for peace!Read this book! Give yourself this Gift!

    Was this review helpful? Yes  No   Report this review
  • Posted May 28, 2011

    Everyone should read!

    I thoroughly enjoyed reading this book. It was very well written. I recommend it to anyone.

    Was this review helpful? Yes  No   Report this review
  • Posted June 17, 2011

    I Also Recommend:

    I can't recommend this one high enough!

    This is a beautiful inspirational message that empowers all who read it. It's a testimonial of strength and love and endurance. This is Mattie's legacy. A detailed account of the life and feelings of Jeni Stepanek's son Mattie who suffers the horrible debilitating desease, muscular dystrophy. Mattie was an angel from heaven who wanted nothing more than to do good for others, in spite of his own struggles to survive. He empowered all with peace, love and harmony. This young man's indomitable spirit lives on beyond his 14 years on earth but has left a legacy of inspiration and hope for all who come into contact with his writings. His dream was to be known as a "Peacemaker". A beautiful read for great inspiration!

    Was this review helpful? Yes  No   Report this review
  • Posted May 21, 2011

    Definitely pulls at the heartstrings.

    I am inspired to be a better person after reading this book. But most of all I am embarressed for complaining about everyday things that are not important. His final word was 'yes' He made it. May God watch over his mother as well. For those of us who pray lets remember her in our prayers.

    Was this review helpful? Yes  No   Report this review
  • Anonymous

    Posted May 21, 2011

    saw it today!!!!

    saw it on oprah today and i think i should get it!!!! (mom was watching oprah and while walking down the hall i saw it)

    Was this review helpful? Yes  No   Report this review
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