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

by Jeni Stepanek, Jeni Stepanek

Oprah Winfrey has called him "an inspiration," Maya Angelou saw him as a kindred spirit and fellow poet, and Jimmy Carter described Mattie Stepanek as "the most remarkable person I have ever known." When Jerry Lewis received his lifetime achievement award at the Oscars, footage of Mattie played behind him. Five years after his death from a rare neuromuscular disease, Mattie is still being celebrated for his indomitable spirit and message of hope. Now the world will get to know the full story of the poet, the peacemaker, the philosopher, and New York Times bestselling author in the first book to share all of the intimate details of his incredible life.

In Messenger , Mattie's mother, Jeni Stepanek, recounts the years before Mattie got sick; how he handled the loss of his siblings from the same disease he had; his decision to spread the message of peace and hope; and how, when he became a celebrity, Jeni helped to keep him grounded, and remember to embrace being a kid. Including never-before- seen poems, journal entries, photos, and correspondence with famous friends, Messenger is an inspirational book about a life lived to the fullest.

"Not a day goes by when I don't receive e-mails and letters saying that Mattie's poetry and speeches are not enough-people want to know about him directly and intimately. I am thrilled to have joined with Dutton so that I can now tell all his fans the full story behind my son." - Jeni Stepanek,Good Morning America.

Genres: Nonfiction, Biography, Memoir, Inspirational, Spirituality, Biography Memoir, Book Club

336 pages, Hardcover

First published November 3, 2009

About the author

Jeni Stepanek, Ph.D., is the mother of the late NY Times bestselling child poet and peacemaker, Mattie J.T. Stepanek, and the mother of three other children, Katie, Stevie, and Jamie, who also died due to a rare and fatal neuromuscular disease. Jeni was diagnosed with the adult onset form of the condition only after the births of all four of her children. Her son, Mattie, created six bestselling books of poetry, and one bestselling collection of peace essays.

A published author or editor of numerous books, articles, and chapters, Jeni is also a noted and award-winning motivational speaker on topics ranging from disability and collaboration to bereavement and spirituality. She earned her doctoral degree in early childhood special education from the University of Maryland, College Park. Jeni, who relies on a power wheelchair for mobility and a ventilator for breathing support, serves as the Chair of the Mattie J.T. Stepanek Foundation, a National Vice President for the Muscular Dystrophy Association, and a Governor for the We Are Family Foundation.

Her new book, Messenger, is the first publication to offer the true story of her son's life, who "was as witty as he was wise." According to Jeni, "Messenger is not a sad story about a child's death, but an inspiring story of young man's life and his very real and ongoing message of hope and peace." She lives in Rockville, Maryland, near the 26 acre Mattie J.T. Stepanek Park and Peace Garden, and still travels with Mattie's service dog, Micah. When she grows up, Jeni wants to be a "beach chair philosopher."

Reviews

[Darcy Leech · Rating 5 out of 5]

Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs was a powerful read for me. I’d seen Mattie Stepanek on Oprah as a child with muscular dystrophy. He was wise, kind, and a poet with a terminal disease. This book is his mother’s reflections of their life as a family. I cried many times in this book. It touched my heart and I hope to be able to do what Jeni Stepanek did for me in helping me heal for other readers with From My Mother!

[Kym Moore · Rating 5 out of 5]

Jeni Stepanek did an amazing job at chronicling and weaving her life, with the life and legacy of her son Mattie J.T. Stepanek. Have a box of tissue on hand when reading this book. It is a true tear-jerker, but is inspiring with elements of Mattie's poetry included.

[Phuongvu · Rating 5 out of 5]

Quyển sách này được mình dành đọc khi bắt đầu đi ngủ. Khoảng thời gian mà mình gọi là me-time, vô cùng trân trọng. Khoảng thời gian cho lòng biết ơn, và cho chính mình được tưới tẩm yêu thương. Một quyển sách vô cùng tuyệt vời đối với mình. Nuôi dưỡng tâm hồn mình vô cùng.
Đọc về cuộc đời Mattie, về 14 năm ngắn ngủi nhưng sống đầy xứng đáng. Sứ giả của yêu thương, sứ giả của hòa bình. Em đã sống trọn vẹn, ý nghĩa, và để lại di sản cho thế giới, cho bao đời sau. Nhất định đi Mỹ sẽ đến thăm công viên Mattie và say hello với em.
Cảm ơn Mattie, Jenni về thông điệp lay động lòng người
Dù có giông bão cũng vui tươi tận hưởng cuộc sống này. Love you.
1.3.2020

[Miriam · Rating 5 out of 5]

Favourite quotes:

"If you have enough breath to complain about anything, you have more than enough reason to give thanks about something." (said the boy with serious respiratory issues...)

"I choose to live until death, no spend the time dying until death occurs."

"you can’t lie down in the ashes of another person’s life."

"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."

"Don’t breathe simply to exist."

"Sad things happen. They do. But we don’t have to live sad forever."

"That’s the beauty. We are a mosaic of gifts & each of us has our inner beauty no matter how we look."

"Life is a gift. True, it can be hard & it’s not always the easies thing. The challeneges of our life are a part of our life & that’s how we learn."

"We always have to choose to live our lives to the fullest. No one is better or worse than anyone else. We are different & beautiful."

“Our Heartsong is our reason for being. If you want to understand what a Heartsong is, think about what matters most to you. What do you want? What do you need? Not a toy, not a thing, but what do you, as a human being need? You understand why that matters? That’s what you are called to offer other people. That is your Heartsong. You should share that through something you enjoy, something that you are good at.”

“Even though the future seems far away, it is actually beginning right now.”
breath to complain

[Mary Alice · Rating 4 out of 5]

Oh, what a book. I'm not easily led to tears, but this got me crying.
Put's your life into perspective. It's nice his mother continues to spread Mattie's message now that he's gone.

Instead of writing a review I'll leave you with Mattie's words--

"I Am"

I am black.
I am white.
I am all skin in between.
I am young.
I am old.
I am each age that has been.
I am scrawny.
I am well fed.
I am starving for attention.
I am famous.
I am cryptic.
I am hardly worth the mention.
I am short.
I am height.
I am any frame or stature.
I am smart.
I am challenged.
I am striving for a future.
I am able.
I am weak.
I am some strength.
I am none.
I am being.
I am thoughts.
I am all things, said and done.
I am born.
I am dying.
I am dust of humble roots.
I am grace.
I am pain.
I am labor of willed fruits.
I am a slave.
I am free.
I am bonded to my life.
I am rich.
I am poor.
I am wealth amid strife.
I am a shadow.
I am glory.
I am hiding from my shame.
I am hero.
I am loser.
I am yearning for a name.
I am empty.
I am proud.
I am seeking my tomorrow.
I am growing.
I am fading.
I am hope amid the sorrow.
I am certain.
I am doubtful.
I am desperate for solutions.
I am leader.
I am student.
I am fate and evolutions.
I am spirit.
I am voice.
I am memories not recalled.
I am chance.
I am cause.
I am effort, blocks and walls.
I am him.
I am her.
I am reasons without rhymes.
I am past.
I am nearing.
I am present in all times.
I am many.
I am no one.
I am seasoned by each being.
I am me.
I am you.
I am all souls now decreeing.
I am.

Mattie Stepanek


And here is his website-- http://www.mattieonline.com/

[Anne]

I've always loved everything I've known about Matte Stepanek, and I loved this book. I went into it expecting to be touched by the story of this amazing boy's life. But I did not realize going into reading the book just how attached I'd feel to his mother, the author of the book. When the time came that I'd knew was coming throughout reading the book, when Mattie passes on, I was overcome with emotion. I realized I'd become so attached to Jeni Stepanek while reading that while I expected to be moved, I was caught by surprise at just how much I felt for her in those moments.



I think that Jeni did a great job of telling Mattie's story - the realities of the medical challenges he lived with, the messages he shared wit hth world and the source of those messages, and the incredible bond the two of them shared. She found a great balance in accouting for all of those things.



She also succeeded in showing Mattie in a new light for me. I'd always admired him for the messages he shared. But I saw him in a brand new light in the way that Jeni summed up his life philosophy: "This book offers the story of Mattie's choice, his decision to celebrate life and perceive it as a worthy blessing even during the most painful moments. It would be his hope, and mine, that his example now serve as a reminder that while we can't always paln our future or choose what becomes of our memories, what happens doesn't have to define us, or limit us, or control us. We can always find something good in th emoment at hand, in whatever comes next, and even in how we reflect on the truth of things past, and in that way, help shape the world. That is his essence, his legacy".

[Alix Lewandowsky · Rating 5 out of 5]

Mattie is so inspirational. The doctors predicted his death right after he was born, but he lived. They said that he would never learn like a normal child. They were right. Mattie started homeschooling when he was 10 at the learning level of a 9th grader. He died for five and a half minutes once. He's a miracle child, born July 17, on the 17th minute of the 17th hour (5:17 P.M.), measuring 17 inches and weighing 2,017 grams. His shyness eroded at age 6, and he began writing poetry he called his Heartsongs. He was touched by God, and even became known a messenger because of his revels he had with Him. Early in the year he predicted the dark day on March 30th, and on that day he woke up in the hospital, stricken with temporary blindness, then fell into a weeks-long coma. He awoke again, alert and himself. Some time later, a piece of skin caught and clogged his airway in his trachea, and he passed out. When the nurse removed it, he woke up, saying, "Don't believe the Christmas trees. Everything is so much more beautiful and wonderful and glorious then we can imagine or create, especially the lights and the angels. The angels are nothing like what you put on a Christmas tree." He wrote poems for the families of those kids who died around him. He met famous people who fell in love with him. He lived to be 14 years old, and died 6 years ago in 2004. And his shadow remains, and it whispers.

[Diana · Rating 5 out of 5]

I gave the book 4 stars. I thought this was an amazing book !! I had read some of Mattie's poems in the past and had seen him on TV. However, those things didn't prepare me for the whole story. This child was truly a messenger and there were so many memorable quotes from him and those around him. It starts with Maya Angelou quoting an old African gospel song, "Lord, don't move your mountain, just give me strength to climb it. You don't have to move that stumbling block, just lead me, Lord, around it." In the ending part of the book, his mom says, "....that is while the facts of your life may not be your choice, the attitude with which you choose to deal with these facts is entirely your choice, therein lies your capicity to make a meaningful difference in the world, to leave behind an echo and a silhouette that can gently and beautifully shape the future." I am not a crier, but had tears in my eyes several times reading this. It just was a shame to have such a light taken from this world at such a young age. On second thought, this book gets five stars.

[Ashley Lucas · Rating 5 out of 5]

This book tore me apart and put me back together again. I'd heard of Mattie Stepanek before I picked up this book but knew little about him except that he was a child who suffered from a terrible disease and who published several books of poetry before his death. Mattie's mother Jeni, who also suffers from the same rare mitochondrial which killed all four of her children, writes beautifully about her son's extraordinary life and his legacy of peacemaking. If each of us could spread as much peace and joy as this child did in his short life, the world would glow with kindness and love. Everyone should read this book!

[Deidre Ferris · Rating 5 out of 5]

This is one of the most beautiful books I've ever read. I remembered Mattie from his Oprah shows. I'd never read his books before. This book is precious. What a wise young man he was and gift to the world. His mother has endured such strains in her life and is astoundingly dedicated to living a full life, and did the same with Mattie. She wouldn't/doesn't allow her physical condition to inhibit that. I cried more reading this book than any other, though please don't let that stop you from reading this. I know you won't regret it. It is tender and hilarious and inspiring.

[Pat Jorgenson Waterchilde · Rating 5 out of 5]

Excellent, Excellent, Excellent!! The story of Mattie Stepanek lives on through his mother's words. You cry, you laugh, you remember a little boy who struggled through life and gave back so much to others. A must read for all.

[Julie]

It was great. This little boy was certainly
a miracle.

[Melissa · Rating 5 out of 5]

I first heard about Mattie on Oprah's show. What an inspirational and beautiful boy Mattie was. I loved this book, and I cannot wait to meet Mattie in heaven.

[Brandy · Rating 5 out of 5]

Amazing story... Very uplifting and very sad... This child was a true Messenger... born with a gift to share with the world.

[Evelyn Garzon · Rating 4 out of 5]

Not done with this book yet but already, the story makes me want to love, give and see the goodness in everything, one chapter at a time. Lessons from a child.

[Suzanne · Rating 3 out of 5]

Mattie left behind a beautiful legacy.

[Andrew Greer · Rating 5 out of 5]

Jeni is a profound person; she is also an immaculate teller of her story as it relates to her son, poet and peacemaker Mattie J.T. Stepanek, who passed away from a genetic disease at the age of 13 -- the disease Jeni now presents as an adult. She lost all four of her children to this mysterious disease. Thank you, Jeni, for being willing to write such a recalling of your life with your children.

[Susanna]

so sad but good!! :)

[Kirsten · Rating 5 out of 5]

I first heard about Mattie on Oprah. I didn't pay too much attention (mostly because I am never home in time to watch). I heard bits and pieces and was always impressed with how Mattie spoke ... with conviction ... self awareness and assurdness. After he passed away, I saw Jeni on Oprah by chance and there were other viewings of Mattie. I bought this book for my uncle for his birthday, all the time keeping in the back of my mind that I needed to read it. I thought that this would be one of my "long term books" ... one of the ones that would take me a while to read ... and probably not even finish.

I was wrong. The book finally came up as available on PBS. When I got it, it sat for about a week and because I didn't have anything else interesting to read (Gone with the Wind is a long term book that I didn't feel like reading), I decided to start this book. Again, I was so wrong about this book. I finished it in a few days. I can't even really put into words the type of person Mattie was. Seriously ... I kept thinking that there was no way any person could think and speak like he did ... have that much impact on EVERYONE the way he did. But, knowing what I know from watching him on Oprah and other bits and pieces, I can honestly say that Mattie was indeed a Messenger. This is a book that I am going to be recommending to everyone that I know. That I am going to have my 13 year old son read. That I am going to re-read and try to pay more attention ... so that I can give a review that gives the book justice.

I always believe that children that have life ending diseases are special. They just seem to be different then the rest of us. My sister was that way. She said, prior to her bone marrow transplant, that "If I have to die so another child can live, then that is fine." What 11 year old child says that? These children are a gift from God.

Thanks, Mattie and Jeni for your Heartsongs. Their impact is being felt.

[Jill Talley · Rating 4 out of 5]

An amazing book - should be read by all students, I don't know what grade, but a must-read. Children should learn about Mattie while they are young, but if they havent - they should read about him as an adult! We can all learn from him.

He reminds me a lot of an "Ann Frank-" type. He was born with something, and i mean something besides a disease... something truly special. I'm not a big believer in God, but i still really enjoyed this book - because Mattie believes in ALL religions, and even includes people who are not sure what they believe. He was blessed with a way with words at a very young age, and an amazing brain! Just a beautiful story.

This was a 5-star book all the way thru - until Mattie became very sick the last time in the hospital. His mother - who i totally respect; I have not lived her life or walked in her shoes - was going by all of his wishes for everything, but then stopped - and WAS having them do heroic measures to keep him alive. I didnt like this - and it was hurting the story for me. He asked ahead of time not to go thru this. I KNOW she did not want to lose him, but it wasnt fair to him, especially when he had asked ahead of time. Yes, she finally gave him - but i felt like he suffered so long and certainly did not deserve it. I don't know what i would have done had i had those decisions to make - but when someone makes their wishes clear - you have to put your own aside.

Please read this book - it will inspire you and you will be amazed.

[Krista Ashe · Rating 5 out of 5]

I saw another reviewer mention needed a box of tissue when reading this. I would whole heartedly agree!!! I knew going in this would be a difficult read. When the book opened with Mattie's death and funeral, I had to put it aside for awhile because it was just too sad. There were times my vision blurred through tears to where I couldn't read. Mattie was an AMAZING, GIFTED, and HEROIC person!

Since my mother and sister had an adult onset form of Muscular Dystrophy, I've always been drawn to Mattie's story and Heartsongs poetry. For years, I've taught some of his poetry to my students as well as mentioning him.

The title of the book is Messenger b/c Mattie believed(as do I) that he was sent to Earth to be a messenger of God. The fact that 3 of Mattie's siblings died within the first two years of their life fuels this for me. There's also the fact of how he was an old soul at such a young age, and often heard God speaking to his heart.

His poetry of peace spoke to a post 9/11 country on a level that gave Mattie friends like Jimmy Carter, Oprah Winfrey, Jerry Lewis and Maya Angelou. His faith in the darkest of times is so admirable. His love of life and desire to play after every storm was even more admirable.

He was a gift of God not only for Jeni, but for the world. He often worried about his legacy of peace and hope lasting after his death. I certainly hope that will never be an issue.

[booklady · Rating 5 out of 5]

If you haven't 'met' Mattie Stepanek, you are in for a treat. What a neat young man! Although he just missed celebrating his 14th birthday, he was wise far beyond those few years. I enjoyed every story his mother, Jeni, the author, shared in this autobiographical narrative about her life with this incredible child. Although poignant, Messenger was told with admiral restraint. I tried picturing myself in Jeni’s place writing about my own son and I couldn’t do it. The title refers to the fact that Mattie’s short life was entirely lived ‘on purpose’ and his purpose was to be a messenger for world peace. One of the first duties associated with the Heavenly Angels is also to be messengers and in fact, Mattie ‘died’ several times in his short life. His near death experiences, plus his constant awareness of his mortality (he suffered from a rare incurable neurological condition which had already taken the life of three older siblings) gave him an insatiable desire for an end to violence and total credibility in that mission.

A not-to-be-missed book!

[Margaret · Rating 5 out of 5]

I saw Mattie Stepanek on Oprah a few times over the years and was sad when he died. For me, he came across as a sweet and joyful boy who tragically died very young. I picked up this book at Costco and didn't read it right away. I was much more excited about reading other books on my shelf. I finally picked it up and it bowled me over. For me, it seems that Mattie is an old soul come to teach all of us, not just with his desire for peace but also with his admonition to play after every storm. I said to someone that he didn't in the end have much effect on the world (was most famous at the time that the Iraq war started), but my friend responded that we don't know the ways that he might have affected ordinary people who listened to him in person or on television.

[~steph · Rating 5 out of 5]

By page 3 of the prologue I was sobbing. I knew I was in trouble! I could only read this in small bunches because I'd be crying so much! I just finished it last night. I remember seeing Mattie on Oprah years ago, and learning about his life was incredible! The way he inspired so many around the world...he also inspired me. Times get tough, and it's easy to feel overwhelmed. I do, frequently. But when I feel like that, I'm trying to remember Mattie, his (and his mom's) daily struggles, and be thankful for each day I have here! And to play after every storm...that's a lesson I need to make sure my kids know, as well.

This really was one of the best Christmas presents I could have gotten!

[Mak M. · Rating 5 out of 5]

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!

[Brittany · Rating 5 out of 5]

I believe what Mattie says, that he was placed on Earth to be a messenger for peace. In his short, challenging life, Mattie inspired millions of people to celebrate life and play after every storm. I admire and thank Mattie’s mother, Jeni Stepanek, for her ability to put it all out there and share her son with us. I marvel at her talent for parenting to foster such creativity and spirituality in her child. This book provided the dialogue for me to express my emotion about mortality and the fear and rewards of loving those with health problems. It was as if the author was speaking the words of my heart. If you haven’t heard of Mattie Stepanek, prepare yourself for every raw emotion when you read this book!

[Anf]

Only 31 pages in and already I've choked up and felt the tears welling up in my eyes.

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 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."

This is a remarkable story about a remarkable spirit who left this Earth three weeks before his fourteenth birthday due to a terminal disease. Mattie Stepanek - poet, peacemaker, and philosopher.

[Becka Lloyd · Rating 5 out of 5]

Being from the DC area, this was not the first I had heard of Mattie Stepanek. A radio station I listen to in the morning had him on before he passed away and have had his mother on regularly. Anytime I hear anyone speak of this kid...i run down into tears.

Reading into his story was a heartbreaking journey. It made you smile in places...made you cry in so many and made you wonder about how someone so young, could be so strong and so peaceful and so smart. This kid touched every single person he met and has heard his story. If you read this and don't feel something, you really have a heart of stone.

[T · Rating 5 out of 5]

A very special friend recommended this book, “Messenger”, to me. I am glad she did. This is one of those scenarios where I judged the book by it’s cover, and never would have considered picking it up on my own. I began reading, and within the first few pages alone I was moved and completely engrossed. I honestly believe this is a book that everyone needs to read. The power this child (Mattie J. T. Stepanek) had to touch peoples lives didn’t end with his death, because he touched mine simply by his mother telling the story of his life. This is a book that could change peoples lives, if they gave it a chance. To my friend who recommended it to me….. Thank you so very much.

[Beth · Rating 5 out of 5]

I am in no way an "Oprah bandwagon jumper", but I saw one of the episodes of the last season and she was talking with Jeni Stepanek and I bought this book that evening. The optimism and love these two amazing people have is indescribable. Jeni wrote this book about Mattie (who is being considered for sainthood) and included some of his "heartsongs" within, told the story of his far too short life and all the millions he touched. Definitely a book to share with all generations and will inspire you to look into Mattie's many published volumes.