Jeni Stepanek on Mattie Stepanek's Legacy

Nov. 2, 2009— -- Mattie Stepanek was a world-renowned poet whose mission in life was nothing short of promoting world peace. He died just before his fourteenth birthday, after battling a rare form of muscular dystrophy. Before his death, he inspired everyone from waitresses to firefighters, from Oprah Winfrey to former president Jimmy Carter. Now, five years later, his mother, Jeni Stepanek, pays tribute to his life in a new book.

"Mattie's body passed away five years ago but I wrote this book because Mattie's life is not about loss," Jeni Stepanek said today on "GMA." "His legacy is getting bigger every year. It was time to share the true story of his life."

She said from the time he was a small child, Mattie felt that his "purpose for being on earth was to be a messenger, to make people smile despite challenges."

The book is "going to make you laugh," she said. "It will make you cry in a few places ... but people need to understand that Mattie was an ordinary child who made extraordinary choices. Mattie's message is alive and each of us can choose to be a messenger."

Read an excerpt of the book below:

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

12 MES S E N G E R

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.

Nell was getting more and more soaked each time the water sprinklercircled back around. She had fallen off the boardwalk into the beachgrass on her way back from the ice cream shop and was now unable toget up, afraid she might have broken her leg. She also had a painful abrasionon her forehead.

Still, she was laughing to herself. While she waited for help gettingto 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 circledaround. Mema had wanted to stay right by Nell's side while others in thegroup went for help but had her hair done that day and didn't want itruined. So she would jump back with each spray, apologizing from adistance about her visit to the beauty parlor. This made Nell laugh evenharder.

We were toward the end of our annual week at the beach on NorthCarolina's Outer Banks. Mattie and I had been coming every year since1992, when he was two, courtesy of my dear friend Sandy Newcomband her parents, Mema and Papa (whose real names are Sue and HenryNewcomb). They always stayed in a two-story condo right by the water --a crazy flophouse with red and purple walls and more air mattresses andfoldout sofas than bedrooms -- and they had us down for a week or moreevery July.

The summer of 2000 had been better than ever in the sense that allour kin were able to make it for at least a couple of days. By "kin," Mattieand I meant the family with whom you didn't necessarily share blood but with whom you're related through life. These relationships were alwayswonderful to him, whereas blood relations could be sweet or sour.

Our "immediate kin" consisted of Sandy, who by that point had becomemore like a sister to me and like a favorite aunt to Mattie; Sandy'sdaughters, Heather and Jamie Dobbins, and her son, Chris Dobbins (allwere teenagers or young adults then); and Mema and Papa. We playfullycalled 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, includingMattie's best friend, Hope Wyatt; Hope's mother, Susan (Susan's husband,Ron, on a peacekeeping mission in Kosovo at the time, was the onewho brought Mattie the United Nations flag); and Nell Paul and herhusband Larry. Sandy had met Nell in a La Leche class when they wereboth expecting their first children, and through her I had become goodfriends with Nell, too. Mattie called us the Three Granny'olas.It turned out Nell hadn't broken her leg after all. And although thegash on her forehead was a nasty one, it wasn't anything time and somepain 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 difficultfor her to stand on her feet too long. But she offered to help Sandy makea chicken tetrazzini dinner that night by calling out, without a hint ofirony, that at least while sitting at the table, she could very easily "cut thecheese." When we all burst out laughing, she responded with someamount of confusion and indignity that "not being able to walk around alot has nothing to do with my ability to cut the cheese" -- which onlymade us roar.

Nell grew up a preacher's daughter in the South in the 1940s and 50sand simply didn't know certain idioms and other common wordplays. Wehad such fun teasing her all week about the T-shirts you see at the beachwith suggestive double entendres and such. We entitled that vacation"The Education of Nell," playing practical jokes on her as we went. Oneday 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.'" Mattiewent 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, "Nevermind, we aren't going to go there."

Later in the week, Mattie and Hope staged a tattling scene whereinHope accused Mattie of saying "duck on the head," and Mattie "defendedhimself" by responding that he was only telling Hope why sheshouldn't say it, and I "scolded" both of them. Nell felt terrible. She hadbeen repeating the phrase here and there in the belief we had been pullingher leg and thought it was she who got the kids going. We didn'tdisavow her of this notion. Then, on one of our last days there, we all tiedtiny stuffed ducks to our heads and went around the side of the poolwhere Nell was sitting, quacking at her.

Mattie was having the time of his life. Chris would throw him into thedeep end of the pool, and he'd soon be bobbing to the surface, yelling tobe thrown in again. He also began interviewing all the kin for a fun bookhe and I were envisioning, The Unsavable Graces. He wrote goofy poemsand went to the top of a giant sand dune called Jockey's Ridge. He wentwith me to Mass recited in Spanish, which we did every summer; doingso allowed us to really think about the essence of God in rituals ratherthan just recite prayers from rote. He and Hope, both blond, ambushedChris, also blond, while Chris was trying to flirt with a pretty girl in anorange-pink bikini, saying, "Daddy, we're hungry, and Mommy said it'syour turn to fix us lunch." Chris later married that girl, Cynthia, and Mattiewas best man at their wedding.

Mattie's disability had progressed since the previous summer, but wewere used to that and always found ways to accommodate his conditionwithout letting it ratchet down the fun. For instance, when Mattie wassix 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 longas he remained attached to a tank of oxygen, he would be fi ne. We wouldrig a twenty-five-foot tube that connected the nasal cannula in his nostrilsto the tank so he could swim anywhere in the pool and never bewithout the supplemental oxygen.

When he wasn't in the water, he woulddrag the tank behind him on a cart, sometimes using his cannula andtubing 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 onthe back of it to get to the pool but could still move around pretty wellonce he was in the water. The summer he turned nine, he went from oneoxygen tank to two, but as long as he had the extra oxygen, he didn't havethe frequent feeling that he was suffocating.

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

Granted, this year there had been changes that were more markedthan in previous summers. At night, Mattie now had to be on a BiPAPmachine, short for bi-level positive airway pressure. It involves wearinga mask over your nose or mouth or, in Mattie's case, both, that helps youbreathe easier when you're short of breath. Mattie also had to wear itduring the day if he felt exhausted, such as right after pool time. This wasin addition to the pulse oximetry and cardiorespiratory monitors to whichhe was connected anytime he was sitting or lying at rest since the dayhe was born, which would let us know if his heart or lungs weren'tdoing what they were supposed to.

The dysautonomic in dysautonomic mitochondrial myopathy means things in the body that should happenautomatically don't always. For example, when someone switches fromphysical activity to sitting, the heart self-regulates by beating more slowly.But Mattie's heart could overshoot the mark and start to "forget" to keepbeating while he was at rest rather than simply slow a bit; the fine-tuningjust wasn't there. If his heart rate fell too low, the machine triggered analarm that would signal someone to jiggle him or provide other tactilestimulation or remind him to breathe more deeply for a minute until hisheart could receive the "signal" and get its pumping back in sync with hisbody's needs.

Understanding this condition and how to deal with it came slowly,across the lifespans of all four of my children. The medical communitydidn't even have a name for it until my two eldest had died. It wassimply called dysautonomia of unknown cause, and early on I was toldthat subsequent children would not be affected. Not until Mattie wastwo years old and my third child was months from death did doctorsunderstand that it was a condition of faulty mitochondria -- an essentialcomponent of every cell in a person's body.I was actually diagnosed first -- with the adult-onset form -- then thechildren. Two years later, after my third child died and Mattie was onlyfour, I was in a wheelchair. Now we were all too familiar with the condition'sdevastating effects.

We were used to adding supports and medical machinery to compensatefor the detrimental effects of this progressive condition, and then wewould keep going. But that summer, the changes weren't just in theBiPAP machinery or even in the fact that Mattie didn't have the energyto really swim. Hope, who was two years his junior, was now severalinches taller than he was. Mattie's shoe size, in fact, was the same as inkindergarten -- a child's 11. Growth taxed Mattie's autonomic system,and somehow his body knew that. In addition, he could not walk acrossthe beach to the ocean. Mattie didn't need his wheelchair because hewas incapable of walking; he needed it in large part because he wouldtire so easily.

In previous years, he had the energy to walk across the sand to thewaves so he could bodysurf (always attached to his oxygen). He had to.We didn't always have a special beach wheelchair that could get tractionover the sand. But this summer, after the first day of walking out to thewater, 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 thewaves that first day, and I told him he could hop on while someonepushed. But he said no. He was aware that he lacked the energy tohandle the waves. And he knew he wasn't up to getting overheated onthe hot sand; his condition also compromised his temperature stability,so that once he became too hot or too cold, his body had a hard timereadjusting to normal.

Mattie didn't have the strength to climb Jockey's Ridge, either, a massivesand dune in the middle of the Outer Banks that offers stunningviews of the barrier island chain from the top. Park rangers drove us upin a jeep that year. He was still his charismatic self, chatting up the rangersand people who had hiked up to fl y kites. But instead of turning cartwheels at the top, as he had done the year before, he sat on a lawnchair.

We treated all of Mattie's limitations as challenges to be gotten aroundrather 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 theassaults on his body could always be taken in stride, that any new weakeningor new machinery were just part of life rather than shifts thatcalled life into question. I even managed to convince myself much of thetime that no symptom of illness was something a combination of medicalhelp, 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 theyhad come to the beach house that summer, either videotaping their responsesor writing them down. It was all note-taking for the UnsavableGraces book. Everyone gave silly answers. Sandy said she came to learnBraille 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 upmost of the time. Nell said she had been planning on thinking three deepthoughts but had already done that in the car so was at a loss as to whatshe was going to do the rest of the week. Chris said he was a plumberand had come to fi x 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 justlooked at me and said, "I really need to consider the meaning of life thissummer, because life is changing."

Caught off guard and wanting to keep away from that subject, and notwanting to spoil the others' fun, I chided him. "Mattie, we're all clowningaround, and you're being serious and philosophical." Immediately, I sawthe hurt in his eyes -- and have regretted to this day the words that fellout of my mouth at that moment. He was headed someplace else, evenon day one.

Mattie remained ahead of me, however. After that exchange, he keptwhat he needed to say bottled up throughout the week, making sure hiswords mirrored the general festive mood. He jumped into as much physicalactivity as he could handle. He participated in the practical jokes.He played board games with the rest of us. Even when he had to takebreaks more frequently than he used to, he would beg off joining in somegroup 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 -- hisfatigue was that overpowering). Not that he didn't truly enjoy himself tothe hilt. He did. But it wasn't until our sunrise on the pier that he spokehis 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 thinspace. A preacher once described thin space to me as that place whereyour spirit and God are in closest contact. Generally, we're all aware wehave a spirit, an essence, that's deep inside us. At your thin space, the veilseparating your essence from your being becomes transparent enoughthat the spirit becomes undeniable. Instead of being a silent voice, yourspirit more or less shows itself to you; you know it intimately rather thansimply being aware of it.

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

I had been coming to this stretch of beach since 1976, long beforeSandy invited me to join her on family vacations. I didn't meet Sandyuntil 1989, but by coincidence, we had both fallen in love with the sameplace. After my first two children died, I even pitched a tent down onthe sand near the pier to try to catch my spirit up to my life. When youlose a child, your body keeps moving, but your spirit doesn't want tocome along. It drifts behind. At the beach, my spirit told me there's stillmore there. It allowed me to feel the essence of my children and thepresence of God, which put it back in sync with my body and allowedme to go forward.

Now the beach, this pier, was the place where my spirit and Mattie'scould talk to each other directly, without anything muffling what got saidor what got heard, even between parent and child.

It never mattered whether it was a cloudy sunrise and the sun didn'tshow. An unrise, as we called such mornings, was just as signifi cant.We always came down to the pier before fi ve A.M., at least a full hourbefore 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 beforemoving forthward, as Mattie called it.

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

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

After a few turns around the bank of escalators that stood in themiddle 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, andthe next thing I knew he was wheeling gleefully from the store into themall 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 inbacking up, he had hooked on to a lingerie cart and had left the storewith a bevy of unpaid lady's undergarments in tow.

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

We began our talk the way we always did, with Mattie asking abouthis sister and brothers. "Tell me about Katie," he would implore. "Tell meabout Stevie, about Jamie. Tell me about how Jamie took care of me, howI 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 atoddler because the trach tube he had in his neck at the time limited theuse of his vocal cords. But he got around it by communicating withAmerican Sign Language. Jamie, for his part, couldn't see what Mattiewas signing because two years before he died, he lost meaningful use ofhis vision. Yet Jamie would sit there and smile as Mattie signed for himthe illustrated stories in children's books. They had found their own thinspace between them.

These reminiscences were crucial to Mattie. When he was aboutseven years old, he started crying hard, seemingly out of the blue, andwhen I asked him what was wrong, he told me he was beginning to losehis memories of Jamie. He remembered sitting in Jamie's bed and squeakinghis little yellow caterpillar in his brother's ear after Jamie had lost useof his sight, Jamie smiling in response. And he remembered the two ofthem sitting in each other's chairs for fun and my reading to the twoof them together, and Jamie's little white casket with the contents I putin that he would take with him to Heaven -- but not much more, and itfrightened him as well as saddened him to be losing touch with memorieshe held sacred.

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

When Mattie finished talking about his siblings, he asked me what Iwanted to be when I grew up. It was part of our pier ritual, our way ofmoving by degrees from what was to what will be. And I always told himthe same thing -- that I wanted to be eighty-three. He would laugh andrespond 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 theocean and sharing thought-provoking stories."

This would lead to my asking Mattie what he wanted to be. In yearspast, Mattie always talked about wanting to be a daddy -- not simplya father, who wasn't necessarily close, but a daddy. He was going tohave seven children and had already named them. The oldest was anamesake, Matthew Joseph Thaddeus Stepanek, Jr., who would be calledTad. Second would come Kathryn Hope, to be called Katie Hope afterhis sister, Katie, and his favorite word (and also his friend Hope, whohe was fine with being his children's mother). Third and fourth would beSteven 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'snames, she'd be a girl. Her middle name would be Margaret after hisgreat-aunt Margaret, who died around the time he was born but hadbeen very good to me while I was growing up. Mattie liked that he and Iplayed Parcheesi with the same dice Margaret and I had rolled when Iwas a child.

Fifth came Patrick Noah ("Patch," for short), followed by TheresaRose, 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 wifewasn't going to like that, he always explained that he'd make it up to herby letting her name the seventh child whatever she wanted, with theproviso that if she didn't choose a name within thirty days, the right togive a name would revert back to him, and in that case he would chooseSophie 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'ttotally in the realm of fantasy, and he knew that. Mitochondrial diseaseslike his are invariably handed down through the mother because virtuallyall 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 madeit through adolescence -- and one doctor had even told him that adolescencewould be a make or break point for him because the body goesthrough so many changes at that time -- he could have children and notrisk passing on his disease.

But as night shifted toward dawn that morning on the pier, Mattiedidn't talk about having children. Instead, he went "off script" and saidthat 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 roomand stay there until he could come out and cope, that he'd end up havingto shave a very long beard because that's how long it would take him tobe able to move on. But he would move on, he said, because "you can'tlie down in the ashes of another person's life." He talked about how aftera 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 amother does in my situation -- told him that I'd stay here as long as Icould. While a prognosis is something of a moving target, the one I hadbeen given left me with a vague "six months to ten years." But Mattiewasn'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 lifewas spent on the edge, yet we had always managed to skirt it, to findsome 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 myresponsibility 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 themonth, in the seventeenth minute of the seventeenth hour (5:17 P.M.),measuring seventeen inches and weighing 2,017 grams, and I had alwaysused that to calm his fears -- not to mention hang on to it myself as if itwere a prophecy. Mattie nearly died minutes after he was born. Seventeenyears 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 thatmatters to you. That's how you touch the world. But I have to reconsiderwhat it's like to leave a legacy. I think my life is the opposite of what itsays on your coffee mug."

On my coffee mug it said, "I may have to grow old, but I don't haveto grow up." Mattie said, "I think I may have to grow up without growingold." He went on: "I think we're going to have to define differentlywhat I'm going to be. We're going to have to define my growing updifferently.

"I want to be remembered as a poet, a peacemaker, and a philosopherwho played," he added after a pause. He had mentioned those thingsbefore in various contexts, and even at the pier in prior years. But thatwas the first time he had strung them together in a definitive way, underlinedthem, so to speak.

I didn't want to hear Mattie creating an epitaph. At the same time, Ihad to let him talk. His mortality was facing him, and I couldn't pretendotherwise. I had already shortchanged him earlier in the week.Now I understood why he reacted so strongly a few days earlier whenNell had to go to the emergency room. He had been really worried, cryingand praying for her, afraid that something was very wrong. I felt Iunderstood at the time -- Mattie's whole life was filled with loss, withvisits to emergency rooms that ended with long stays in the hospital andlife-altering compromises. But what I realized on the pier was that evenwhile I was aware he was losing ground, he was sensing it in a way Iwasn't able to see. As close as I could possibly be, I was an outsider lookingin.

It wasn't as if once he brought up living a truncated life, we abandonedall that was ritual in our visit to the pier. We still spoke, as we didevery year, about choice -- about how you can't choose whether you'regoing 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 withoutmeans at times that you have to stand in line for handouts at a churchfood pantry. Mattie lived a life in which these and so many other thingshappened that would never have been anyone's choice that we made it apoint to list the things you could choose: whether to talk about someonebehind 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, whetherto go forward despite challenges or sink into despair.

We also assessed our week as we always did, reviewing all the practicaljokes and shenanigans with everyone. We talked, too, about Mattie'spoetry, which was so important to him.

But there was a new urgency about it, about the poetry and about thefuture. He said he needed to get his books of poems published. He hadwritten several volumes of Heartsongs poetry by that point, "Heartsong"being a word he coined for himself to get at a person's essence -- thelongings and hopes and feelings that both describe and stir each of us. Itis 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 giftyou 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, tofi nd out "if I'm doing peace right," and that he needed to get his messageof hope and peace on Oprah so that it could be spread.

He had been talking about these things for a while, but previouslythey 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 howto 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 poetrypublished, it'll be like I'm having children." Mattie and I had talked inprevious years about a person's creating something that lasts beyond hislife span -- his echo, his silhouette. That day, he was addressing it moreas a plan than a philosophical musing.

Then he said, "I don't think I'm ever going to be back here. Marchthirtieth is a dark day for me."

I felt a kind of nauseating ache start to rise. My daughter, Katie, wasonly twenty months old when she died, but the day before, she put awayall her toys and refused to play with them. "Bye-bye," she said. "Allthrough."

"What are you talking about, Mattie?" I said. "You've always been onmachines. 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 pierin my future." The pier marked time for us. It was a kind of punctuationmark to our lives, a breather to go over where we were at that point andhow we were going to move forward, how we were going to celebrate. Itwas where we planned our "what nexts."

The pit in my stomach rose higher. "You've got summer camp nextyear," 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 onMarch thirtieth? Because we'll watch. We'll take extra care to watch youaround that time." I had debated whether to say it out loud, consideringthat if the thought remained unspoken, I might be able to hide it, keepit from having a chance to become reality.

"I'm just saying I can't see past March thirtieth," he said. "I can't fi tanything after that into a context."

"Don't you see anything at all after that day?" I asked. "Easter? Yourbirthday?"

"Maybe Thanksgiving at Sandy's house," he answered finally. "But I'mnot sure if I'm seeing it, or just wanting it."

"Well, what do you see? Do you see people? The table? Do you seeChristmas 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 totape a minute of sunrise, shut the camera for ten minutes, then tapeanother minute so that everyone back at the beach house could see whatthey had missed.

"No, I'll remember what this looks like, what it sounds like. I have tomemorize what this feels like," he countered. His voice had no trace ofsadness or melancholy. It was more like an expression of "Wow, I'm reallygoing 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 aruby pink with shades of orange. Mattie commented that it looked morelike a sunset than a sunrise -- a gift from God, he said, because it combinedhis 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 lookedout to the horizon. I put my hand on top of Mattie's and told him I lovedhim. We said that to each other a hundred times a day, every day, and wemeant 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 tosee movement in the water -- dolphins. It was a common sight on theOuter Banks, but one that always delighted us. Except this time we sawwater spouting up. It wasn't dolphins but whales! Water was spouting outof their blowholes -- calves and their mothers. We could even hear theirbeautiful, haunting song.

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

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