Fireflies: A Father's Classic Tale of Love and Loss Read online

  Make of the dove what you will. But I’ve been through hell, so now I’m willing to believe in the opposite. “Willing,” I said. But I’ve got a good reason to grant that possibility. To be more specific, I’ve got a reason to want to believe. More about that later.

  2

  Why did I write this book? The truth is I didn’t have a choice. It would have been impossible for me not to write it. I’ve never felt more compelled to put words onto paper. I guess you could call this a form of self-psychoanalysis. Something horrible happened to my son, and by extension to my wife, my daughter, and me. The worst thing. The most dreadful thing. I’m still trying to figure it out, to come to terms with it, to vent my emotions. In the months I’ve been writing these pages, I could barely see the keyboard because of the tears that blurred my eyes.

  Then why not quit? Why torture myself?

  Because even though it’s torture, this book is also an act of love. In my mind, I’m still at the hospital, holding Matt’s hand, stroking his forehead, trying to assure him there’s hope. I can’t give him up. He’s been dead for months, and yet each day I study pictures of him (how I wish we’d taken more photographs). I caress his slippers. I strum his guitar. But my mental images of him are becoming cruelly less vivid. One day they’ll be a blur, like my keyboard. So while he’s still fresh in my mind, I write about him, even if the events I describe make my soul ache, because I want to make him permanent, if only on paper.

  After his surgery, when Matt was told he still had a remnant of the tumor and would probably die, he murmured, “But no one will remember me.” I promised he would be remembered, and as long as these pages exist and someone reads them, he is remembered.

  But isn’t that being merely sentimental?

  In the first place, there’s nothing wrong with being sentimental. That emotion and others such as compassion set us apart from animals. They make us human.

  But in the second place, no, I’m not being merely sentimental. There are lessons here. Truths. They tumble through my mind.

  3

  Children are a gift. Throughout these pages, I’ve maintained that Matthew was a special child. His verbal and musical skills, his intelligence, his good nature were extraordinary. Everyone liked him. Everyone recognized his unusual potential. I truly believe that if he’d lived he would have made our world a better place.

  Or is that fatherly pride? I don’t want to nominate Matt for sainthood. He was special, but he wasn’t perfect. He and I had “discussions” about curfews and other household rules. But yes, I was—am—proud of him. And that’s my point. Every parent ought to have pride in his or her child, because every child is special, by virtue of being a child. From when Matthew was diagnosed in early January until he died in late June, for those six months, his mother, his sister, and I were with him almost constantly. Not always as a group, and not between treatments, when Matthew found the strength to go to school. But then his treatments lasted longer, and his sessions at school became shorter, and our family grew even tighter. For the last eight weeks of his life, Matt’s home was the hospital, and one or all of his family was with him day and night.

  When you think about it, the average parent sees his or her school-age child for an hour or two at most each day. In the morning, when the family’s getting organized, and in the evening, when settling down at supper, then at bedtime. During the intervals, everyone goes a separate way. But we saw Matt every hour. During his final six months, and in particular, his final eight weeks, we spent more time together than an average family does over a lifetime. Maybe that closeness was a backhanded compensation for the pain and terror Matt (and by extension the rest of us) endured. Maybe Donna, Sarie, and I got to know Matt better than we ever normally would have, and to love him with greater intensity. Maybe six months or even eight weeks can be a lifetime. Maybe it’s not how long but how well.

  4

  In the eulogy I wrote for Matt, I described how “I read in the newspaper about mothers who strangle unwanted newborn infants, about fathers who beat their children to death, while we wanted so desperately for our own child to live.” I asked, “Why can’t evil people suffer and die? Why can’t the good and pure, for Matt truly was both, populate and inherit the earth?”

  There’s a writer I admire. Andrew Vachss. To date, his novels are Flood and Strega. Read them.

  I admire him for two reasons.

  First, because his sentences are strong; his stories make me turn the pages.

  But the second reason I admire him is that he became a novelist out of frustration, because he wanted a broad audience to get the message of what he considers his true profession. He’s an attorney who deals with child-abuse cases. Some time ago, I wrote a rave review of Strega for the Washington Post. He was kind enough to send me a letter of thanks, not for the review but for emphasizing the message of his books. “Not for my writing,” he said, “but for my work.” After Matt’s death, he phoned to convey his sympathy.

  “I can’t tell you how sorry I am,” he said. “Truly it breaks my heart. But for what it’s worth, if this helps … I’ve seen so many dead battered children … at least your son had this privilege. He died knowing he was loved.”

  I started to cry but somehow kept talking. “Your days must be hell, dealing with …”

  “These scum who treat children like sacks of garbage? No. My days are victories. I feel as if I save the lives of more children each year than most doctors do in emergency wards. Tomorrow I go to trial against a fourth-generation incest case, and man, I can’t wait to put those perverts out of society. Abused kids are POWs. Establishing them with a decent family is like ending a war.”

  Child abuse.

  Intolerable.

  Unforgivable.

  Children are precious, to be cherished. I always knew that. Believe me, that knowledge has been reinforced.

  5

  Cancer. I used to be afraid of it. Not anymore. Because it once was an unknown enemy. But now it’s horribly familiar. And what’s familiar isn’t as fearsome as the unknown.

  A few days ago, one of Matt’s doctors came to visit. I told him what I was writing. I expressed my concern that someone afflicted with cancer might be advised not to read this book.

  The doctor shook his head in disagreement. “Matt’s cancer was rare, and it chose a rare site—a rib instead of an arm or a leg. As near as we can tell, though, we cured it.”

  “He died!”

  “Because of an infection of a type that almost never happens. A biological accident.”

  “Whatever, he’s still dead!”

  “David, listen. Based on the autopsy results, I have to believe Matt would have survived. From the cancer. You’ll hate me for saying this. Your son was unlucky. Rare cancer. Rare site. Resistant to chemotherapy. Finally responded. Shrank, but metastasized. Surgery got most of it. Chemotherapy combined with a bone marrow transplant got the rest of it, but a biological accident killed him. What we learned from Matthew’s death takes us a step ahead in curing Ewing’s sarcoma.”

  “What’s that got to do with—!”

  “Whether a cancer victim should read this book? Your son, God bless him, may have been the only victim, in this country, of that rare cancer in that rare site. And he stared it bravely in the face. He went all the way with it. Successfully. Except for the septic shock. If Matt could stare that rare cancer in the face, imagine the inspiration he can provide to victims of much more common cancers, of malignancies we usually can cure. He provides an example. If Matt could be brave, given the worsening complications he stoically accepted, maybe he’ll show others how to fight their illness. David, you know we’ve had successes, even with Ewing’s. You’ve spent six months in the cancer ward. You’ve seen patients go home.”

  “Some didn’t.”

  “There are no guarantees. What I’m saying is, panic’s an enemy too! But Matt didn’t panic! So finish the book. And if civilians read it—not a doctor like me and a veteran like you—maybe
they won’t be so ignorant about chemotherapy and how it’s administered and why a patient goes bald and what the chemicals do and why and how and what and …”

  So today I’ll finish the book, and maybe some readers will find it frightening, but maybe other readers will learn.

  6

  But why did I write this book as I did, so a portion of it was fiction? In a paradoxical way, the fictional portions too are fact.

  I never believed Matt would die. To his final hours in Intensive Care, I remained convinced that he’d survive. After his death, I still could not accept it. Sure, the doctors came out to the waiting room and told us he was dead. Donna and Sarie saw the body (I was on the verge of another panic attack, physically incapable of standing, of going into his room). They described how pathetically lifeless Matt’s scarred, bruised corpse looked, finally out of pain.

  “There must be a soul,” Donna said, “because without it he didn’t look the same. He just looked empty.”

  Donna explained how the Intensive Care staff prayed along with her and Sarie over Matthew’s corpse. Then of course there was the autopsy, the cremation, and the funeral.

  But even when we deposited the urn containing Matt’s ashes into the crypt, I still did not believe Matt was dead.

  This isn’t real, I thought. This can’t be happening. It’s a nightmare. I’ll wake up, and Matt’ll be fine. For days afterward, and especially the nights, I used to pray for the terrible hallucination of Matt’s death to end. The only reason I was able to sleep is that I couldn’t wait to wake up and discover Matt’s death had been only a vivid nightmare.

  Each morning as my consciousness focused, I’d feel a surge of hope, then realize that the nightmare hadn’t ended, the hallucination hadn’t faded, and I’d plummet back into despair. But still I’d keep saying, “This can’t be real.”

  That was one of my reactions. Another was my utter conviction that if Matt’s death impossibly was real, there had to be a way to reverse what had happened, to go back in time and save him.

  I truly believed that. I thought if I concentrated hard enough I could turn the clock back. I spent many hours praying for a miracle, for a time warp, for a chance to leap into the past and somehow keep Matt alive. Throughout Matt’s treatment, the doctors had given us detailed explanations about his disease and how they were trying to fight it. After Matt’s death, the doctors gave us equally detailed explanations about what had killed him, about the staph and the strep and the septic shock. Every stage of Matt’s treatment had been based on logic.

  But a biological accident destroyed him. In case he developed a fever, a wide range of antibiotics was ready to be administered, and those antibiotics were given right away, the instant his fever started to rise. The infection was killed, but the shock the infection caused had been too strong for his weakened body.

  In hindsight, the only way to have tried to save him (and I emphasize “tried” because there’d have been no guarantee the effort would have worked) would have been to administer the antibiotics before the fever started, to get a head start on the infection before it developed with the devastating swiftness of a fire storm.

  But as a doctor explained, “Antibiotics are toxic when they don’t have anything to fight. Bacteria can get used to them, so if an infection does occur, the antibiotics aren’t effective.” In other words, prematurely administered antibiotics might have made Matthew’s condition even worse. Still, given the fact that Matt died anyhow, those antibiotics (if given before he seemed to need them) were all that might have saved him.

  If. Might. Such despair-producing qualifiers. That’s what cancer patients die from, “but ifs.” If only this had worked or that hadn’t happened. If. I believe that Matthew’s doctors did everything in their power to try to save him. I understand how unorthodox it would have been for them to administer antibiotics before his symptoms demonstrated a need for that kind of treatment.

  I’m not criticizing. I want to make that clear, and I also want to make it clear that parents of cancer victims shouldn’t try to be doctors or think they know better than medical experts. It isn’t even wise to go through medical texts, because those texts are often outdated (especially in terms of cancer research, which constantly develops new techniques of treatment).

  But I keep telling myself this can’t have happened, it isn’t real, Matt didn’t die. And I keep telling myself those antibiotics were his only chance. So finally I wrote this book—to tell you what happened to my son, and at the same time to dramatize my sense of unreality.

  Am I still in a faint on my kitchen floor? Has all of this been a nightmare? Will I wake up to discover that Matt didn’t die and I didn’t write this book?

  I pray so. Or am I dying forty years from now, recalling the greatest loss of my life, still trying to find a way to bring Matt back? Anything’s possible, because as far as I’m concerned the impossible happened to Matt.

  That’s what I meant when I said that even the 10 percent of fiction in this book is paradoxically true, because my fantasy dramatizes two phenomena of grief—the sense that it’s all a nightmare, and the need to go back in time and make matters right.

  My final scene, in which Matthew dies in 1987 while “David” dies forty years later and their souls as fireflies surge blazing toward each other, illustrates something else I said. I mentioned I’m falling off the fence of agnosticism. I’m starting to believe in God and an afterlife. Because I need to. Because I so desperately want to see my son again. Believing in God gives me a hope. Can faith be far behind?

  7

  Is there no pity sitting in the clouds

  That sees into the bottom of my grief?

  —SHAKESPEARE

  Romeo and Juliet

  I’ve been told that the loss of a child you loved is among the worst agonies a human being can suffer. A subjective statement, of course, and I certainly don’t want to get into any contests about grieving. My stepfather died eight years ago. That hurt me a lot. One of my wife’s sisters died the following year, and that hurt a lot. Those were my only experiences of powerful grief. Until now. But those two painful losses can’t compare to my present agony. I shudder at the thought that I might survive my wife. For the moment, though, let’s grant the statement. The loss of a child you loved is among the worst ordeals a human being can suffer. The promise of youth destroyed. The potential for zest and goodness torn away. The unfairness of it all, and you miss the kid so much.

  There have been days when I didn’t think I could survive the pain. I contemplated suicide. What stopped me is that a month to the day after Matthew died, my daughter found the body of a friend who’d shot himself to death. He’d placed a towel beneath his head before he pulled the trigger. To minimize the blood. I couldn’t put Sarie through more torture. I couldn’t bear forcing her to attend the funeral of her father.

  So I survive day by day, and the thoughts that help me are as follows.

  8

  The world is based on entropy, the messiness of the universe. Physicality is imperfect. Disintegration and random chance are the rule. If you have a good day, count yourself lucky. And if you wonder how God could cause something so devastating as the death of your son, you’d better rephrase the question, because God didn’t cause your son’s death. The chaotic nature of the world did. God is perfect. The world is not.

  You could say that God should have done a better job when creating the world. But Perfection can’t create Itself. It can only create a lesser version. You could also say that God should have intervened to prevent the death of your child. But that would be a miracle, and no one has a right to expect a personal miracle.

  I remember praying for a miracle. When Matt was close to death, I tried to make one of those bargains that Elisabeth Kübler-Ross refers to in her books about the nature of death and dying. But I couldn’t think of a reason for God to help me instead of all the other troubled souls in this world. I finally thought I’d found an argument that couldn’t be refused.


  Dear God, I prayed, just as you’re supposed to be a father to me and to love me as your son, so please identify with the love I feel for my son. Please help my son, because Your son is asking You.

  The prayer didn’t help. But I’m not bitter that it wasn’t answered. After all, I was trying to make a deal, and maybe that’s the wrong thing to do, to try to make a deal with God. Maybe if I’d believed in Him totally before Matt got sick, maybe if I’d had faith in Him to start with and not just now, Matt would have lived.

  Well, that’s another issue. The miracle did not occur, and God neither caused nor took away my son’s cancer, because the nature of the universe He created doesn’t permit His intervention. That’s why there’s a heaven, I want to believe, because it’s a goal, a step up from the chaos of earth.

  9

  If you believe in Original Sin, you understand why the world’s imperfect and why God tests us instead of intervening.

  But if you don’t believe in Original Sin …

  Compassion.

  I’ve said that Matt believed in the value of good nature. If everyone every day showed good nature to everyone else, most of society’s problems would disappear. Recently an editor acquaintance called me and paraphrased a quotation from a book whose title he no longer remembered. “From the start of human history, there’s been so much pain and suffering the stars should have stopped in their tracks.” My acquaintance ought to know. He’s suffered twice my tragedy. Two of his children have died. I don’t know how he keeps going. But my acquaintance (I keep using that word because I see him but once a year, and that’s what impressed me—he wasn’t a friend and yet he was phoning me) spoke only briefly about his own tragedies. He said he was calling because he’d heard about my son’s death, and he wanted to tell me how deeply it filled him with sorrow.