{"id":4951,"date":"2009-11-13T14:01:53","date_gmt":"2009-11-13T19:01:53","guid":{"rendered":"https:\/\/www.pbs.org\/wnet\/religionandethics\/?p=4951"},"modified":"2013-05-10T15:20:33","modified_gmt":"2013-05-10T19:20:33","slug":"november-13-2009-jeni-stepanek-extended-interview","status":"publish","type":"post","link":"https:\/\/www.pbs.org\/wnet\/religionandethics\/2009\/11\/13\/november-13-2009-jeni-stepanek-extended-interview\/4951\/","title":{"rendered":" Jeni Stepanek Extended Interview"},"content":{"rendered":"

Read and watch Kim Lawton\u2019s interview with Jeni Stepanek, author of MESSENGER: THE LEGACY OF MATTIE J.T. STEPANEK AND HEARTSONGS (Dutton, 2009): <\/strong><\/p>\n

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Q: Why was it important to you to tell Mattie\u2019s story now?<\/strong><\/p>\n

There were a couple of reasons. One is Mattie\u2019s been gone for five years now, and in those five years more and more good things have come from his life. We have parks and libraries and school curriculum, school curricula growing, the Just Peace Summit where teens come from all over the world to study his message, and I thought, people are so inspired by Mattie\u2019s writings, by Mattie\u2019s message of hope and peace, I thought it mattered that people know who was the child behind that message, that people know the details of Mattie\u2019s life story, particularly because Mattie believed that he was a messenger, that that was his reason for being. and I knew that if something happened to me, nobody would ever know the truth of Mattie\u2019s story. So that was one goal, was to really lay down the details of Mattie\u2019s life. The other reason that I wanted to tell Mattie\u2019s story is people very often come to me and they say, \u201cI\u2019m so inspired. How could I ever be like this child?\u201d And what I wanted people to know is that he was really an ordinary little boy who made extraordinary choices and that each of us can make those same choices, that each of us can live an extraordinary life regardless of the blessings and burdens that are balanced into each day. And I thought that that mattered to share with people so they could identify with Mattie and\u2014you can\u2019t be Mattie, you can\u2019t raise your child to be Mattie, we can\u2019t ever be another human being, but we can use other human beings as our role models, and I wanted to show how plain and simple my son was. He was as witty as he was wise.<\/p>\n

Q: You write in the book about how he really did feel that he was a messenger. In what way? How did he feel that? He really felt it came from God.<\/strong><\/p>\n

Mattie first started telling me when he was about three or four years old that God put messages in his heart, and that his reason for being, that God\u2019s role, God\u2019s plan for him was that he was good with words and that he was to shape words around God\u2019s messages and offer them to other people so that they would hear God\u2019s message as well. Now when your three- and four-year-old says this, I thought it was very sweet, I thought he had some nice things to say, but I couldn\u2019t understand\u2014I didn\u2019t really understand about what he was trying to tell me about God putting messages in his heart, and when he hit about four years old, he began doing things like, in the middle of playing, he would drop to his knees, meditate for two minutes, 10 minutes, and then stand up and say, \u201cI need to write this down. I have a message from God, and I need to put words to it.\u201d And I began to get concerned, actually, and ask him questions like, \u201cAre you hearing voices? Is God\u2019s voice a man\u2019s voice or a woman\u2019s voice? High pitched, low pitched?\u201d I didn\u2019t understand what he was saying, and he looked at me like I had lost my mind, and he said, \u201cMommy, God\u2019s voice is not like this. It\u2019s a message in my heart, and my job is to give words, to give voice to God\u2019s message.\u201d Mattie spent his entire life saying things like this, and I spoke with priests and rabbis and ministers about this, and I have to admit I don\u2019t think I ever, during his lifetime, fully understood his role as a messenger. I believe he believed that he was a messenger for God. I believed that what he was saying and doing was all good.\u00a0 I could not understand how you could actually hear God\u2019s voice in your heart and use your own words and voice to offer a message to others. I think it\u2019s been more since he died, and the ongoing letters and emails and calls that I get from people who tell me that they remember Mattie from when he was alive, or they\u2019re just learning about Mattie now, and how he continues to inspire them\u2014that is almost like they\u2019re getting a message from God. And I think I\u2019m now beginning to understand that he really\u2014his spirituality and morality were really intertwined, that he did hear messages from God, not in a voice, not in some delusion, but that he was truly inspired with something good, which is God.<\/p>\n

\"bookcover_messenger\"<\/a><\/p>\n

Q: What were some of those messages? For people who aren\u2019t familiar with him and his poems, how do you distill the messages?<\/strong><\/p>\n

I think the messages that Mattie offered us from God really fell into two categories, and one could easily be summed up as hope is real, peace is possible, and life is worthy, and he has poem after poem, essay after essay, speech after speech where he discusses, or shares in a literary form, how those look. You know, why hope is real, why it\u2019s not just wearing rose colored glasses or being in denial or turning your head to the truth, that hope begins with an attitude and an attitude is a choice. So I think that\u2019s really one part of the message is all about hope and peace and life, regardless of challenges or the joys in somebody\u2019s life. And then the other side, the other flow of messages that he talked about as coming from God, was what he started calling \u201cheart songs\u201d when he was about 5 years old, and trying to help people understand that we all have a reason for being. Just like you read, or hear, in church God\u2019s plan\u2014Mattie called it our reason for being, our heart song. And the best I can understand it is that it really is the universal truth. It\u2019s what Jesus Christ taught us, it\u2019s what Gandhi taught us, it\u2019s what Martin Luther King teaches us, it\u2019s what any good speaker, any peacemaker teaches us: in giving we shall receive, in doing good, good happens. That doesn\u2019t mean you become rich in money. It doesn\u2019t mean you get miracle after miracle and you live longer. It doesn\u2019t mean that your life is peachy because you\u2019re doing good things, but it means that if you\u2019re open to God being a part of your life, if you can understand your reason for being and offer that to other people, it will come back to you. [It] took me a long time to understand that as well, and I finally came to understand that what he meant by heart song\u2014he told me once when he was about 12 years old, because I said I don\u2019t know what my heart song is, I really, I don\u2019t know my heart song. And he said, \u201cWhat do you need? What do you want most in life? What do you ache for? What would you do anything to have in your life?\u201d He said that\u2019s the first part of your heart song, because you know why it matters. You\u2019re close to it. If you need money, if you need love, if you need happiness, if you need to be known, you understand why that matters. Your reason for being is to offer that to others. And what Mattie needed and wanted was happiness and love that lead to hope and peace. So he gave that freely to other people through his writings, through his speeches, and in giving other people these messages of hope and peace, that came back to him, and I began to understand that\u2014that is God\u2019s plan for us, to be fully who we were created to be. And what we need we offer it to others, because we get why that matters.<\/p>\n

Q: And that\u2019s a spiritual ministry? I think people hear some of the poems and miss the spiritual dimension that seems to be the foundation. <\/strong><\/p>\n

Yes. Now not every poem that he wrote had a spiritual dimension. Some were just pure fun. Some were\u2014people would often ask him to write poetry for an organization or for a specific cause. But the bulk of his poetry, if you really read it carefully, there is a message of hope, of peace, of life, of offering, of finding what\u2019s at your core. When he\u2014I mean one of the most depressing poems I think he ever wrote is called \u201cAbyss,\u201d and it\u2019s when he began really wondering, is my life ending? Am I going to get another miracle? When is my mortality going to end? And he really wasn\u2019t looking forward to death, and he just really felt that he was in a dark space. But in writing about this so people go, \u201cYeah, I understand and I feel like this,\u201d he said when you\u2019re in this abyss, all you have to do is look up and realize even if you\u2019re at the bottom, there\u2019s the light. You just have to choose what you look at, choose your vision, and once you see it you climb right out. So even when he was struggling, he still would find some way to find inspiration or offer inspiration to other people by identifying with other people\u2019s challenges or sharing his own so that other people could identify with him.<\/p>\n

Q: What do you hear from people? You still get letters and emails. What kinds of things do people say, even today?<\/strong><\/p>\n

I get a lot of letters from school children who didn\u2019t think they liked poetry until they started reading Mattie\u2019s material, and then they realized poetry is not something beyond them, it\u2019s not something way intellectual and that you can\u2019t understand, that it\u2019s shaping words in a special way on a page and carefully choosing each word so that it matters. I would say the bulk of what I get is where people say this is how my life has changed because of Mattie, because of what I\u2019ve read, because I saw him on TV, because a friend gave me one of his books. Right now there\u2019s History Associates, a local archive company. They\u2019ve taken 50 boxes from my basement of fan mail and publicity information about Mattie, and they met with me a couple of weeks ago, and they said, \u201cWe\u2019ve really tried to sort it, because everybody says they\u2019re inspired.\u201d So they\u2019re trying to say I\u2019m inspired to be a better person, I\u2019m inspired to pray, I\u2019m inspired to be a better parent, I\u2019m inspired to think gentler, to be less judging. They\u2019re trying to now categorize what that inspiration looks like or feels like to different people. I also, especially since it\u2019s been 5 years since he died, get lots, or a fair number, of letters and emails from people who ask questions like when is Mattie going to have a committee for sainthood? What is the prayer I can pray for Mattie, for his cause? I\u2019ve had a dozen or so people ask me for relics. And I go back and I tell people there\u2019s been talk, but there is no formal committee. That doesn\u2019t even begin until year five. But I even get, after he died I got mail from people all over the world that was addressed to \u201cMattie\u2014Child Poet of America.\u201d Or \u201cSt. Mattie\u2014First Child Saint of America,\u201d no other address, and these things would just end up in my mail box which, was very\u2014I mean that\u2019s an overwhelming\u2014it\u2019s beautiful, but the responsibility for me, when I sit back and think my son not only touched lives when he was alive, but since he died, he is continuing to touch lives, to inspire people. It\u2019s the most beautiful thing in the world to have somebody write to you.\u2026<\/p>\n

Q: What\u2019s that like as a mother, to know people think your child is a saint?<\/strong><\/p>\n

Well, I\u2019m really careful with that because, one, he\u2019s not recognized as a saint. I mean, if you take a saint as an ordinary person who lived an extraordinary life of holiness and called others to be their best self, absolutely my son is a saint, though not recognized. There are many, many people who are saints though not recognized, and yes, I do hope that one day there is an investigation for his cause, not because that would make me proud, because I think my son could continue being a source of intercession and inspiration for the world, which\u2014that happens more when people are aware of him. So yes, for that reason, I think it would be lovely. But, you know, when I step back and think of me as Mattie\u2019s mom, well, I was the one who would say, \u201cMattie is your bed made?\u201d And he would say, \u201cDoes it look made?\u201d It\u2019s like, well, that wasn\u2019t the question. I was the one that would have to answer his questions of, \u201cIf I\u2019m going to be a writer and peacemaker, why do I need trigonometry and chemistry courses?\u201d I saw the little boy, the human side, the child who cried when his feelings were hurt, who was scared of certain things. So I think that\u2019s a blessing for me that I saw the full spectrum of my son. But the responsibility that I feel and the privilege that I feel to think that my son is touching people and touching lives long after my lifetime, long after this generation\u2019s lifetime, is a profound thought that is very humbling, very, very humbling to sit back and think as rough as my life is I would never will or wish my life on anyone else in the world, but how grateful I am that I was chosen to be this child\u2019s mother, that that was part of my reason to be. What a beautiful gift that was that I got to be Mattie\u2019s mom, including the unmade bed. I\u2019m just thrilled about that.<\/p>\n

Q: What is that responsibility that you feel? <\/strong><\/p>\n

I think the responsibility is to\u2014part of that was the reason I chose to write this book. I feel the responsibility to share with people the truth of my son\u2019s life. What I don\u2019t want people doing is thinking, \u201cOh, Mattie,\u201d you know, and putting him up on a pedestal: he\u2019s a little guru, he was perfect, he never got angry, he never got sad, he only spoke bits of wisdom. I mean, he wasn\u2019t\u2014that\u2019s not who Mattie was. So I think the responsibility is for me to share as much information as I can about my son, about his life, so that people do know that he was real. They do know that living a good life doesn\u2019t mean living a perfect life. It means always having God being a part of your life, always, if you have one of those dark moments, that you know instead of saying well, okay, I\u2019m down, I might as well stay here. You pick yourself up, you choose to get out of bed another day. I think it\u2019s my responsibility to offer that information to other people which was kind of hard for me, because I\u2019m more of a private person. Mattie\u2019s an extrovert. I mean he just loved sharing anything and everything with crowds. I\u2019m a little more private, and it was a little more difficult to go out in public to share all the details of our life, but I think when the details of your life can inspire people to find hope when they\u2019re really struggling, or to realize,\u00a0 you know what, I am doing a good job parenting, or despite my burdens I have blessings\u2014whatever the inspiration is that you draw for yourself, for you family, for your coworkers in whatever you\u2019re doing, I feel like it\u2019s my responsibility and my privilege, they\u2019re hand in hand, to share that message\u2014my story, Mattie\u2019s story\u2014and to share those details in a way that brings people closer to him in a very real way\u2014not in a little guru way, but in a very real way.<\/p>\n

Q: How has your faith changed in the last five years? How has everything that happened affected your spiritual journey?<\/strong><\/p>\n

I don\u2019t know that my faith has changed dramatically in the last five years. I can say that my faith has grown dramatically across the 20 years that I had with my children, and it\u2019s continued to grow on that spectrum since I\u2019ve buried my fourth and only surviving child, which was Mattie. I think one of the greatest changes I had in faith came during Mattie\u2019s final months. I\u2019m very good at, through prayer, giving God a to-do list, all right? Dear God, this is where I need you, and this is how you can meet my needs. And I give God the little to-do list, and I think I began to realize, towards the end of Mattie\u2019s life, prayer is not just giving God your wishes and your to-do list, it\u2019s asking God to be on my to-do list for the day. It\u2019s asking to bring God into whatever the moments are in my day, so that really started before Mattie died. Since he died, I\u2019ve hit some very, very low points. I think about a year and half after he died, you know, people think if you get through that first year it\u2019s all going to be okay, you get through that first year, and everybody\u2019s there for the first anniversary, because everybody remembers Mattie died. Even my first three children, people are there for the first Christmas, the first birthday, the first anniversary. But then people go back to their everyday life, they go back to their norms, and I can never go back to my everyday life. I can\u2019t go back to my norms because my norm was parenting my children. And it\u2019s not that your life ends, but there\u2019s this dramatic shift. Your path is no longer\u2014you\u2019re still going to end up at the same end point in your life, but you\u2019re taking a totally unplanned path. You\u2019re really starting all over again. I have had mornings where I\u2019m not quite sure what the sane reason is to bother getting out of bed. I always find one, and if I can\u2019t find one, what I\u2019ve learned is to allow other people to give me a sane reason to get out of bed. And I think that\u2019s one of the gifts from God, is that God is present in other people, in my kin family, in my friends. So as sad as some days are, and as much as I miss my children, I really work hard to open my spirit to God\u2019s presence through other people, because I believe my children are with God. I don\u2019t believe that heaven is some place up in the sky, up in a cloud. When people say, oh, Mattie\u2019s right up there, I don\u2019t see that. I see Mattie as right up here. I see spirit and heaven as being wherever there\u2019s goodness, and if that goodness is in a space or in nature or in other people, that goodness is God, and my children are with God. So, you know, I seek to feel what I am looking for, a connection through heaven and goodness, through whatever I can find in the world that\u2019s good.\u00a0 I don\u2019t know if that makes sense or not, but that\u2019s where I am. I\u2019m more praying that God just shows me doors and windows, because I\u2019m really not sure what I\u2019m supposed to be doing in life other than doing good, being my best self. So I ask God to help me recognize any opportunities to do that.<\/p>\n

Q: You have an incredible support network. You have some really close people who\u2019ve walked with you from the very beginning. Talk a little more about the role those people have played in your life.<\/strong><\/p>\n

I think if you were to stop and think about the details of Mattie\u2019s life and my life, you think, okay, there\u2019s been financial problems. There\u2019s been a divorce. There\u2019s been four children with disabilities who\u2019ve died. I have a disability that\u2019s progressing every year. You think about those details, and you think, wow, what a horrible life. And since all of my children have died you would look at me and think I\u2019m very much alone. And in all honesty, there are times when I feel alone, because I love my children and miss them. I will never stop mourning the loss of my children, but I also don\u2019t go through each day miserable, because Mattie and I have always had people around us that bring light to our life. In the book you learn more about what Mattie called our \u201ckin family,\u201d and he said you\u2019re related to kin through life, not necessarily blood. It may or may not be blood. But he said blood relations can sometimes be sweet or sour, and kin relations are through life, and life is always good. So Sandy Newcomb is more like a sister to me than a friend, and her three children, who are now adults, two of them with their own children now, they\u2019re like family to me. They\u2019re my kin, and we celebrate holidays and, you know, when one person\u2019s sad we\u2019re all sad, and when one person\u2019s having a moment of joy we all feel joy. I do talk about in the book at one point Mattie asked Sandy, why do you always do such good things for my mom and me? And when Mattie asked her this question he had been in the ICU for about 5 months. At the time Sandy still had two children living at home. She was working two jobs. She herself is divorced and a single parent, and yet she came to the hospital at least three days a week and would spend most of the night there with Mattie so that I could go in the waiting room and take a little break. And she said because that\u2019s all that God asks us to do is to do good for others, to love your neighbor. And she told Mattie that your neighbor is whoever God puts in the path of your life, and if we just all reorganize that and do what we can in the moments that we can, life goes on. Mattie and I have often prayed in gratitude that we have people like that in our lives, that we have such an incredible circle of support. I mean, I\u2019m in two different churches. I\u2019m a Roman Catholic, I love Catholicism. I love the Holy Eucharist. Sandy is Presbyterian. I go with her to her church as well, where I find the most wonderful fellowship, the group of people that are there, just\u2014there are good people everywhere. You just have to be open to that.<\/p>\n

Q: You\u2019ve mentioned your speech about not looking at life as how long you live, but how you live. Tell me about that.<\/strong><\/p>\n

One of the speeches that I give is called \u201cOur Dash in Time.\u201d I first heard it in the Presbyterian church from a minister who was talking about the difference between chronos and kairos. Chronos is really a two-dimensional look. It\u2019s a measurement of life in seconds and centuries, whereas your kairos isn\u2019t just seconds and centuries, it\u2019s looking at the depth of the time that you live. So you can look at Mattie\u2019s life, and the dash that marks 1990 to 2004 was not quite 14 years, and you think, what could somebody do in less that 14 years? But because of how Mattie chose to live, because of the kairos of Mattie\u2019s life, the depth of his time, my gosh, I mean he lived an incredibly full life\u2014not just with opportunities to do things, but with how he thought, how he chose to treasure a sunrise, a sunset, a baby holding his finger, I mean, just taking little tiny moments and cherishing them and making them that memorable, that celebrated, and inspiring others to do the same. Not that we don\u2019t want many, many moments in our life; everybody wants to have as many heartbeats as they can. But it really is the measurement of your heart songs, or the depth of your life, that is how we\u2019re going to be remembered. So Mattie, in less than 14 years, is remembered with this powerful legacy, and people smile when they hear his name. It\u2019s sad that he\u2019s gone, and people shake their head at that. But anybody that you say the word \u201cMattie\u201d to that knows who he is. They smile. That\u2019s powerful. That\u2019s how I want to be remembered, with a smile, not as, oh, that poor woman, she buried her four children, but, wow, that poor woman, she buried her four children, but boy did she love life, and boy those kids were sure happy. I want to be remembered as a smile on people\u2019s faces just like Mattie, and that comes from how you life your life, not how long you live your life.<\/p>\n

Q: How are you feeling these days?<\/strong><\/p>\n

Health-wise I have a progressive condition, which is very frustrating. Mattie and I are very resilient, optimistic people. When you have a disease that\u2019s constantly changing, getting worse, you can\u2019t ever just get used to it. You know, we moved into this house a little over three years ago, set it up accessible, and everything was right where I could reach it. Oh, my goodness, a year later, it\u2019s like, well, I can\u2019t reach this anymore, I can\u2019t reach this, so you change things.\u00a0 It\u2019s like, every year, you don\u2019t notice it day to day, but when you go to decorate your Christmas tree or when you go back to the same place, you go to the beach every summer, and you suddenly realize I can\u2019t lift my arm high enough to do this, I can\u2019t transfer independently, you know, out of my wheelchair, I can\u2019t decorate even the closest branch on my Christmas tree anymore. That\u2019s not a lot of fun. Losing the ability to drive, you know, I feel like as I hit middle age, where you have the opportunity to really synthesize academic knowledge and experiential knowledge and spiritual knowledge, and you\u2019re hitting a point where you just feel so blessed with it\u2019s beginning to come together, you actually can do less and less and less physically, and you become dependent on other people, and that\u2019s been really hard for me. And medically I\u2019ve hit a few scares in the last year, with, like, cardiac-type things. It\u2019s kind of scary, but I try as hard as I can to live in each moment and to not think about what\u2019s going to happen. You have to think about what\u2019s going to happen tomorrow, but you can\u2019t focus on that. You have to have a vision for it but not get lost dwelling on it, in the same way with the past you can\u2019t look at the past and get stuck in it in a way that you can\u2019t move forward, and you can\u2019t look at the future and what might happen tomorrow in such a way that you\u2019re afraid to enter it. So I think that\u2019s what Mattie meant with hope. You don\u2019t live in denial, you don\u2019t say the past didn\u2019t happen and the future\u2019s not going to bring its challenges, but you move through it the best you can and have a good attitude. You reflect the moment in a way that God\u2019s there with you.<\/p>\n

Q: For a lot of people it\u2019s about control\u2014what you can control and what you can\u2019t.<\/strong><\/p>\n

I\u2019m all about control. I\u2019m an OCD, love control, absolutely, and it\u2019s hard giving that up, you know, and it\u2019s little things, you know. I like cleaning my own house. I like folding my own laundry because I fold in thirds. I\u2019ve learned compulsive people fold in thirds. But now it\u2019s I\u2019m so grateful for anybody that does my laundry I don\u2019t care if it\u2019s folded in quarters or halves or thirds or fifths. I\u2019m happy that people are doing it. But it\u2019s really hard letting go of that control. It\u2019s really hard knowing I will always be the passenger in a car. I will never be driving again. That\u2019s a really, really tough thing when I\u2019m a doer, a giver, a be-er, and you have to be the recipient and call someone and ask them to do something for you. That\u2019s a tough lesson for me.<\/p>\n

Q: What are you doing professionally these days?<\/strong><\/p>\n

I would say I\u2019m an advocate and a consultant, a motivational speaker. I love writing, speaking, doing research, and the fields that I work with range from education, health care and family-centered care collaboration, but also peace and hope. I do a lot of mentoring of teenagers around the world who want to understand, how is peace possible? And I help people understand Mattie\u2019s premises. Mattie called it the three choices for peace. What are these choices, how can we embrace them\u2014that peace is not just an absence of violence, peace is also a conversation with people you don\u2019t know or don\u2019t understand. Peace is taking care of the earth. Just helping people understand how basic needs, equitably meeting basic needs of people, leads to peace. So my speeches are everything from how to work with families whose children might be dying to why does it matter that people feel happiness, hope, and have food and water and education? How does that lead to peace? And I love the work that I do.<\/p>\n

Q: And the Mattie J.T. Stepanek Foundation<\/a>?<\/strong><\/p>\n

After Mattie died, people that are in my neighborhood, in the city of Rockville [Maryland] in the King Farm community, they said Mattie\u2019s message is not one that we want to get lost with the fact that he died barely a teenager. Had Mattie been [in his] 30s or 40s when he died, there\u2019s a chance that he would have had an automatic place in history, and there were people who knew Mattie as a person, and part of the reason that I said I wrote this book\u2014that\u00a0 he wasn\u2019t a guru, he was witty and wise, he was very real. So people who were his neighbors said we need to make sure people understand who Mattie was, what was his message. So they started the Mattie Stepanek Foundation, and really the mission of our foundation is to make Mattie\u2019s message available and accessible, accessible meaning understandable. So we are working on curriculum guides so that teachers who want to incorporate peace or poetry or character development into preschool, into high school, into a university course, that there\u2019s different worksheets or presentations, videos that they could rely on to introduce anything from \u201cHeartsongs\u201d to the three choices for peace to their students, and there are actually schools around the country who are already doing this type of work, and we\u2019re trying to help incorporate what they\u2019re doing with what we are doing. But it\u2019s really just keeping that message of hope and peace out there and alive, and I think what we believe the foundation is, is that Mattie\u2019s message is not unique. He offered us the universal message, you know: Give and you shall receive. Mattie\u2019s life was unique. Mattie\u2019s experiences were unique. Mattie\u2019s choices as a young child were unique. So as a messenger he\u2019s very powerful, you know. People listen when they hear Mattie\u2019s words either on a page or on TV or even in the park named after him, the sound bites you can listen to. So because of that the message is the same thing other people say, but as a messenger he\u2019s very unique, and people are drawn to him for any number of reasons. So it\u2019s to keep that available for people, and I\u2019m proud to be the eternal chair of this foundation.<\/p>\n

Q: Other people say they have sensed Mattie. Have you?<\/strong><\/p>\n

I have had people who have contacted me to say they believe Mattie has interceded in their lives. They believe that Mattie has healed their child or touched their spirit or turned them back to God or prevented them from suicide. I have gotten messages; some of the messages I think are very profound and very believable. Some I think are people who want to feel something good. I personally have not felt my son, I would love to feel him, but I think if\u2014I think my son, if he is speaking into people\u2019s hearts or spirits, if he is interceding in people\u2019s lives, and people recognize it\u2026things like that are very powerful for me to hear, and what I would give to have my son come and stand and just say hi or yo, just say anything, just touch me, but I know that that would be wrong, and I think that my son is wiser than that, because if my son came and spoke to me or touched me, and I knew without doubt this is my son, I so miss him that I\u2019m afraid I\u2019d never emotionally or physically be able to move from that spot. I would be trapped, thinking OK, if he could do it once, this must be the magic portal. I\u2019m going to stay right here, and I find that the people who tell me they have received some message from Mattie are ones that are able to move on after that. Those are the ones I believe more\u2026.<\/p>\n

Before Mattie died, in the final week of his life, I mean, Mattie knew he was dying and I did, too. But a parent can never, ever just say, OK, it\u2019s time, you can go. I mean, that\u2019s a really tough thing, even as your child is dying in front of your eyes and your heart. You can\u2019t give them permission. You can\u2019t be OK with it. You can give them permission, but you can\u2019t really be OK because that goes against everything that parenting is. It\u2019s not okay to bury a child, it\u2019s not OK. No matter how good a life that child lived, no matter how graceful the death is, the death of a child\u2014nothing makes it right. So Mattie was clearly ready to go but wanted me to be, he wanted me to let him know that I\u2019d be OK, and he had said things that he had said to other people before: you can\u2019t lie down in the ashes of another person\u2019s life. He had said all kinds of profound things: Take my message forward. Your message, my message are so similar, Mom, be a messenger for me. You know, take the torch, give more light to your own message, beautiful things. I think the thought that was most meaningful, and if I ever write about my life story about grief\u2014because this book is not my story, it\u2019s Mattie\u2019s story. It\u2019s not my story of loss. It\u2019s his story of life\u2014if I ever wrote my own story it would be called \u201cChoosing to Inhale,\u201d because that was the challenge my son gave me. He said when I\u2019m gone, promise me you will choose to inhale, not breathe merely to exist, and that means finding some worthy reason to move into each next moment, and that\u2019s the most difficult choice I face every single day, but it\u2019s the most worthy choice. Once I\u2019ve made that choice to move forward, to move with God, to be a messenger, to give a speech, to write a book, to serve as a consultant, all the different things I do, I have to choose that, because the easiest thing to do would be to lay in bed until it\u2019s my time to be with my son again. But he challenged me to make life more than breathing. Choose to inhale.<\/p>\n

I had four children in a four-and-a-half year time span, which makes me a very firm, good Irish Catholic woman, which is what I am. But when I was having these children, I did not know I was going to give birth to children with this condition. When I was having children, I was apparently healthy, active, running two to five miles a day, coaching and playing sports, working on my first doctoral degree, had no clue\u2014and it was clear something was wrong with the children, but they were misdiagnosed, and with the misdiagnoses came the misprognoses of recurrence. So I thought the first one was a fluke of nature, the second one was recessive, you know, they told me the third one would be healthy. Mattie\u2019s my fourth. I had, I mean, I was doing, practicing many ways not to have a fourth. He was clearly a spirit meant to be, not an accident, a spirit meant to be. So yes, by the time Mattie was born I had already buried two children and had a third that was going to die from the same condition, and I knew that Mattie, short of a miracle, was going to have this mystery ailment that afflicted my children. We found out when Mattie was two what was wrong with me, and that\u2019s when they went back and backtracked and figured out what was wrong with the kids, and I had no more children after that. What kept me going through all of that\u2014while one of my children was alive, what keeps you going is very different than what keeps me going now. When your child\u2019s alive, your number one focus is keep that child alive, and if the child\u2019s not in an active medical crisis, then make that child know life is good despite the equipment, despite the ventilator, the trach, the needles, being in the hospital. Why would you want to celebrate life? Why would you want to live longer?\u00a0 So how I coped during the bulk of the 20 years when I had my children was by teaching them that life is a celebration\u2026.I gave my children a celebration of life in whatever few months or years they had. So even though you grieve the loss of your child, when there\u2019s still another living child, not that the grief isn\u2019t there, but you have to focus on celebrating life with that child, with the one that\u2019s still alive. You can\u2019t give them your grief just because you miss their sibling. When Mattie died, that\u2019s when the grief became so overwhelming, because where do you put your mommy role? It\u2019s really difficult to be a mommy to children who have died. You know, bringing flowers to their grave, cutting the grass around their marker, that\u2019s\u2014it\u2019s a very unnatural role, but you don\u2019t suddenly not feel like you\u2019re a mommy any more. You want to nurture, you want to take care of things, and you want to teach somebody to celebrate life. So while my children were alive, clearly I coped, you know, through religion, through faith, through spirituality, but also I had my children. That was my celebration. It\u2019s a very different thing once there is no child there, and you really are relying on God, your spirituality, and the kin family of support that\u2019s around you to help you choose to inhale everyday.<\/p>\n

Mattie knew his entire life that he had a condition that could lead to early death, that he had a life-threatening condition. When he was 10 years old, he realized that that possibility of an early death was becoming more of a probability. We really thought he was going to die before his 11th birthday.\u00a0 We\u2019re not quite sure how he eked out those last three years. We\u2019re thrilled that he did. I think it was when Mattie was 13, it was the fall of 2003, Mattie had several conversations with me where he said, \u201cGod\u2019s no longer giving me messages. God\u2019s just walking with me through my life,\u201d and at that point he realized his time on earth was complete and that he would probably die sometime during the coming year because he had fulfilled his reason to be. And he was not excited about that. He really wanted God to say you\u2019ve done such a good job I\u2019m going to give you five bonus years. I mean, he was not anxious to die. But I think he realized when he was 13, I\u2019ve done what I came to do. I\u2019ve done it well. There was a sense of urgency that he felt to get as much in place as possible that could go on after him. He called it his echo and his silhouette. You know, get as much writing down; get as many video tapes in so that things would last. So he always knew that he would die soon. I think at 13, I think on the day that he turned 13 he knew he was not going to turn 14. He was very clear. He tried to tell me spring of 2004 before he went into cardiac arrest. He kept trying to prepare me for what was about to come, and I couldn\u2019t listen to him. I just\u2014I couldn\u2019t. I knew what he wanted to say, and I thought, if I listen to you I\u2019m going to tell you, it\u2019s almost like saying, OK, all right, and I couldn\u2019t do it, and I feel very badly about that now. I feel like I didn\u2019t\u2014it was one of my mommy decisions that I regret. You know, I should\u2019ve just put my arm around him and said that must be really difficult, you must feel very alone. But I thought if I did that he\u2019d think I\u2019m saying, wow, this is really sad but it\u2019s\u2014you\u2019re right. So I wouldn\u2019t even let him talk to me about it. I just\u2014I couldn\u2019t tend to it, and I feel very badly. I will forever feel badly about that. But I don\u2019t think he holds that against me, I think he knew that I was being a mommy.<\/p>\n","protected":false},"excerpt":{"rendered":"

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