Wednesday, October 31, 2012

Day of the Dead


This Halloween season Jasper has been to an unprecedented number of parties, which means that I have too. Sometimes I know a lot of parents at the party; sometimes I don't know any. Sometimes I see people I've been trying hard to avoid. On Monday a mom who'd just hosted a party introduced me to another mom. "Do you know my friend L?" S asked. "C's mom. She was at my house last night. The one in the blue wig."

"I noticed," I said, smiling…well, I was going to say slightly or politely but really I don't know how I was smiling. It could have been distantly, or coldly, or maybe the smile that I was attempting never made it all the way to my mouth, much less my eyes. What I do know is that as soon as it was decently possible I got as far away from L as I could.

It was true I had never met L, but I knew who she was. I knew her by the baby in a carrier on her chest. A baby boy with blue eyes and light brown hair standing on end like baby chick fluff. Which is bad enough. But it's worse than that. This is a baby who very soon will be seven months old. I don't know if he was born on April 2 or April 7; I was a little bit preoccupied then.

The world is full of babies and I know I have to get used to it. Mostly, it's fine. But this one…this baby shines on the edges of my life like a cruel sun on a house flattened by a tornado.

L didn't come to school much while she was pregnant but I talked to her husband several times about how close our due dates were. I said I was glad there would still be someone I knew at the elementary school in five years and he said that they were probably going to be moving. Too bad, I said.

I took Jasper to a birthday party on April 20 and the dad brought the newborn to the bowling alley. I remember the way my heart leaped when they walked in, the way your heart does when someone you are madly and unrequitedly in love with appears in the doorway.

*

Tomorrow is All Saint's Day. Or, depending on what culture you claim, the Day of the Dead.

If I were Catholic I would go to mass tomorrow. Since Protestants go to church once a week at most, this Sunday is when it's celebrated. Celebrated isn't really the right word. Commemorated is maybe better. Or observed. I have my own WASP-y All Saints tradition: I go to church and sing For All the Saints and cry. I have done this ever since my grandfather died on October 28, 1988 and was buried three days later. This year, if I go, I figure I'd better have a whole box of Kleenex with me.

On the way to school today I was trying to explain to Jasper what a saint is and I realized for the first time that it has two meanings. It's a person in the Catholic Church who has attained exceptional holiness, like St. Patrick or St. Boniface, but it also refers to the dead in a more general way. I guess technically it describes those who have died square with the Christian God and in the hope of the resurrection, but I have decided on a more inclusive interpretation. A saint is anyone you love who has died, I told Jasper. After he heard that he wanted to make sure that I include a photo of our old cat Gerty on our Day of the Dead altar, even though he didn't like her much, because he knows I did.

Before I met Jonathan I never celebrated the Day of the Dead. But he's an Angeleno and a Hispanophile and from him I picked up the tradition of making an altar with photographs, candles, food and drink. I've got lovely framed photos of my grandmother and her sister on their First Communions. I have one of my grandfather as a boy. Jonathan has one of his grandfather, once a member of the Canadian rifle team, pointing a pistol at the camera. I have snapshots of everyone else so that no one in my family is left unrepresented. Jonathan always tosses a group photo onto the table, one of people he knew in Mexico, many of whom are dead now.

Do we put Balthazar in an ornate frame in the middle, the prince of the dead? Or do we let his picture lie casually flat, one among the many? 

When I watched the 1992 Barcelona Olympics, the commentators made a big deal out of Pablo Morales's father. Pablo Morales was a world record-holding Cuban-American swimmer and Olympic medalist who was making a swimming comeback after a few years off. His mother had died the year before, and his father brought a picture of his late wife to the natatorium and faced it toward the pool when Pablo raced. The TV cameras couldn't get enough of it; every time Pablo swam they panned up into the stands where that tiny old man held the framed picture toward the water and pumped his fist. My adolescent and Protestant self was completely creeped out by what he was doing. It seemed primitive and fetishistic and I couldn't understand it. Did he understand that his wife was dead? That she couldn't really see her son? That the picture was just chemicals and pigment on paper?

I now appreciate that in Hispanic cultures they acknowledge that the dead remain in some way present with the living. Because of course the dead are with Anglo-Saxon Protestants too, we just try to pretend that we are more rational and scientific than that. I like it that families go to the graveyard on the Day of the Dead and decorate the gravestones and leave, not just flowers, but tamales and tequila and candy.

Pablo Morales's mother was the reason he began swimming, because as a girl in Cuba she had almost drowned. If she had been alive, she would have wanted to be in the stands in Barcelona. Why not make visible the belief that she was present in spirit?

If Balthazar were here he would want to see the lavender bushes outside the school, and the little yappy sweater-wearing dogs, and the bikes and the kids. He would startle at the bell, and smile when he saw Jasper.

*

At a Halloween party S found me and not-quite apologized.

"I totally forgot about the babies the same age thing," she said. "L reminded me."

"I wasn't even sure if she knew," I said. I had assumed they weren't aware of me. I was sure her husband didn't remember talking to me. My hyperawareness of their every move was my own thing. "I hope you don't think I'm a bitch," I went on, "but I just can't be around her." I said her, but I really meant him, didn't I? "I mean, never say never, but for now."

"Yeah, we talked about it and she said it's just going to be awkward," S said.

It's not awkward, I wanted to say. This isn't a job that we were both up for and she got and I didn't. This isn't a boy we both liked asking her out instead of me. It might be awkward for you, I thought, or for her, but I'd choose a different word, like devastating or intolerable. Maybe it's not fair of me to expect her to choose a better word, but I did.

It's intolerable and I'm not going to tolerate it. I'm going to flee every chance I get and not even feel bad about it. But it will burn from a distance. They did move, it turns out, but they're staying at the school.

Every time I see that boy I will think, that's how old Balthazar would be now. That's what Balthazar would be doing now.

Do I dare carry a picture of Balthazar around with me tomorrow? Would I pull it out and show it to someone? Would I show it to L, or to S, even if they thought I was unhinged, or pathetic? Would I hold the picture face out so that he could see the garden? Probably not. But maybe the picture will be in my pocket.


Wednesday, October 17, 2012

Goodbye To All That


Last June I read a heartbreaking piece in The New Yorker by the novelist Aleksandar Hemon, about the death of his toddler daughter from brain cancer. I cried copiously as I read it, though I'm not, in general, a cryer. Afterward I felt wrung-out yet fulfilled, as if after a hard workout. My empathy muscles were stretched and tired. That, I thought, was a great essay.

I hadn't read Hemon's fiction, and my curiosity was piqued. I Googled his bio and looked at the dates and realized that the writer's daughter had died eight months before the essay was published, which meant, factoring in the endless lead times of print journalism, that he had begun to write it almost immediately after her death. How could he do that? I wondered in awe. How was he able to transform his grief into art so quickly?

Now, of course, I know exactly how he did it. I don't know what I thought grieving people did with their time. Stare into space, or claw at their faces, or attend therapeutic seminars.

Elizabeth Siddal was a secondary character in The Wayward Muse, my 2007 novel about the Victorian designer William Morris and his wife Jane. After she gave birth to a stillborn daughter in 1861, it was said that Lizzie spent hours rocking herself in a rocking chair, shushing the people who visited her and saying that they would wake the baby with their loud voices. This, and the fact that she overdosed on laudanum a year later, was given by various historians (and, to be fair, by her husband, the painter and poet Dante Gabriel Rossetti) as evidence of insanity brought on by the baby's death. It sounded plausible to me. Wouldn't giving birth to a dead baby make anyone crazy?

Now that I've had a stillborn baby and managed (so far) not to kill myself or shoot heroin, I see it a bit differently. I would say now that Lizzie's life was a sad mess before the baby died, and the fact that it ended tragically has more to do with drug use, an unfortunate choice of romantic partner, misogyny, and social class than with the loss itself.

We are the people we were before, for better or for worse, and we do the things we've always done. Grieving laudanum addicts take laudanum. Grieving carpenters build things, I imagine. And grieving writers write.

*

By the time Balthazar was conceived I wasn't convinced anymore that I was a writer. In fact, his birth was going to make it OK for me to throw in the towel. The voice in my head had been urging me in that direction for awhile. You're never going to sell anything else, it told me. You’re never going to publish anything else. You had your shot and it got fucked up somehow and now it's over. But hey, it's all right, because you're going to have this baby.

I was ignoring the voice as best I could, working with a mentor and trying to finish a memoir to give to my agent, but, faulty thinking or not, something was hanging in the balance even when Balthazar was still kicking like Lionel Messi. I had never thought of giving up writing when Jasper was born, but back then I had a book coming out and an advance to write a second. I had my whole career ahead of me, which I believed was now behind me. So in my heart I quit writing and I chose Balthazar.

I felt guilty about it. I knew that it was too much to put on a baby, that he could take the place of writing, the thing I'd wanted to do since I was nine years old. But if there was a choice to be made, I decided, I chose Balthazar. And then he left.

In the first days after his death, I found myself lying awake at night replaying the events that composed his abbreviated journey: the birthday party, the vanilla cake with raspberry filling, the Doppler, the nurse, The Voice, the blue blanket, the blessing. I cherry-picked details and snippets of dialogue. The thing about Captain Zimbo would make a great essay, I thought. I wrote the essay in my mind, and then rewrote it. I was partly horrified with myself but I also suspected that it was a sign, the only one I had then, that I would survive.

Five days after Balthazar died, I opened up my journal and started to write everything down. I had to do it in five minute increments because it hurt too much to do more. I just knew that I had to get it all down while I still remembered exactly. I told myself that I would need the journal entries later, when it was time to make something of them.

Then, a few weeks before I started the blog, I decided that I was going to quit writing, whether Balthazar was here or not. I was going to go back to school to be an ESL teacher. I was going to get a job at a Christian adoption agency. I was going to volunteer to run my son's school's art program. But even as I said that I was done, I kept writing.

*

There's a part of me that thinks he knew that I wanted writing more, and he gave that to me instead of himself.

"Babies are selfish," Jonathan says. "He would never have given you writing."

It's a relief to hear him say that. Living, as he does, only in my mind, sometimes Balthazar threatens to become as stiff and gilt-encrusted as a Byzantine baby Jesus in an altar painting. Jonathan reminds me that Balthazar was not a saint or an icon, but just a regular baby. One who would now be eating Legos and pulling the cat's tail and demanding all of my time and attention, not giving two shits whether or not I'd rather be writing.

What Balthazar took, when he left, were the last vestiges of an illusion I'd been sustaining for years. What I had wanted to give up all along, though I didn't realize it, was my "career" as a writer. I never wanted to stop writing; I wanted to stop pretending. That the manuscript would sell this time. That I'd get that big advance that would save us. That the option or the foreign rights would fix our financial situation. It's not just the money, but the praise, the critical validation, the attention. The dream of a National Book Award or a bestseller list, which, if you want to get all self-helpy about it, is just a proxy for parental approval anyway. Fuck it all. I've been clinging to that sheer rock face by my fingernails for a long time and now it's time to let go.

What Balthazar gave back to me were the words.

When I reread the Aleksandar Hemon essay again recently, it was different; or rather, my relationship to it was different. I recognized the tone, a certain plainness of language. He didn't write the essay for the money. He didn't write it for The New Yorker, or to win a National Magazine Award, or to impress an editor who would buy his next book. He wrote it because if he didn't write it he wouldn't survive. It's not anything as pretty as solace. It's just all we have and all we know to do.

My career as a writer is over. I don't know what happens next. Except that I'll be writing about it.

Tuesday, October 9, 2012

My Brother, My Pediatric Geneticist



"Why does it matter so much to you to find out exactly what happened?" my brother asked.

We were sitting at a picnic table near Hogan's Fountain while Jonathan and Jasper played in the sprinkler. It was June, and the first time we'd talked in person since Balthazar died. I couldn't tell whether he thought it shouldn't matter to me as much as it obviously did, whether he was being slightly critical, or whether he was just curious. And if it was the latter, was it personal or professional curiosity?

My brother is a pediatric geneticist, which is not a bad thing to have in the family when you are a person who never took statistics, trying to run the numbers on various prenatal diagnostic tests. During the pregnancy I told everyone about my brother the pediatric geneticist. "I'll have to check that out with my personal pediatric geneticist in Columbus, Ohio!" I would say to the midwife and the perinatologist. I'm sure they rolled their eyes behind my back, but it made me feel safer, like I had a guy on the inside. Which in retrospect is ridiculous. Having your own personal pediatric geneticist doesn't do a fuck lot of good, it turns out, when you have to call him from labor and delivery to tell him the baby's dead.

"I feel a responsibility to the child," I said. It was not hard to talk to my brother about the medicine; we'd been back and forth on the phone for weeks. It was excruciatingly hard to talk to him about my feelings. "I mean, if he was murdered, I would try to find out who had killed him."

The number of tests performed after Balthazar died were staggering, and the results trickled in maddeningly slowly. Enough had come in by my six week post-delivery appointment, though, that I could tell the midwife was gently preparing me to never know the answer. She had tears in her eyes as she told me that the autopsy was normal. She also had to tell us that the chromosomal sample taken the day we left the hospital had refused to grow, which meant, because we had not done a cvs or an amnio, that we had no genetic information on Balthazar.

A few weeks later, at our appointment with the perinatologist, he could only run through the sheets of paper, explaining what each test was, and that each one was negative. Balthazar did not die because of Antiphospolipid syndrome, lupus, fetomaternal hemorrhage, parvovirus, cytomegalovirus, toxoplasmosis, preeclampsia, or gestational diabetes. The placenta was normal. The cord was normal. The baby was normal in every way that could be tested. Even I seemed to be normal.

"It shouldn't have happened," he said.

What I told my brother was true; I did feel a responsibility to Balthazar, but one of the ways that manifested is that I wanted some medical proof that I was at fault. Of course I know that fault is an incredibly unfair word to apply. This wasn't a fatal car accident with two opposing auto insurance companies duking it out in court. Even if it was my "fault", I hadn't been driving drunk or texting. I hadn't run a red light, or even been speeding. And Balthazar could in no way be blamed. If it turned out I had an infection, was that my fault? If he had a heart defect, was that his?

But I kept getting a whole lot of nothing. 

Later in the day the perinatologist called back to say that based on some fibrin deposition on the placenta, he thought I might want to be tested for some genetic clotting disorders. My personal pediatric geneticist was dubious, but I went ahead, following my newly-discovered personal philosophy: leave no stone unturned.

That day in the park, my brother told me that his hunch was that there was something genetically wrong with Balthazar, something not obvious at autopsy, something that medical science didn't currently have the means to detect, something that meant that he could not have survived outside the womb. I didn't want to believe him, but I also knew that despite his self-deprecating persona he usually knows what he's talking about. A quality I really hate in him.

Before we both left Louisville I gave him my envelope of fetal demise pictures to look through. I felt for him there, outside the Bristol after Sunday brunch, when I handed him the photographs of his dead nephew and made him select the "best" of them to take back to his colleague. His 18 month-old daughter squirmed on his shoulder. His almost-four year-old son shouted for his attention. And yet I needed him to do his work for me, right there, and then drive his family in their minivan the four hours back to Ohio.

As I waited for the results from the blood tests and for word from my brother I constructed a scenario that made more intuitive sense to me than the one in which something was wrong with Balthazar. My mother has Factor V Leiden, a genetic clotting disorder, and though I already knew I was negative for that one, I could easily have another clotting disorder. A clotting disorder was my body's disorder. I could blame myself for it. Balthazar would remain inviolate.

Of course science doesn't care what makes intuitive sense to you. A few weeks later the results came back and I had tested negative for all the clotting disorders. Though of course there are more clotting disorders than were tested for, the truth did not seem to lie that way.

My brother sent word that based on the photos his colleague thought Balthazar probably didn't have Trisomy 13, 18 or 21. But then, those genetic disorders usually make themselves pretty obvious.

With these pieces of information, I spent the summer trying to absorb the idea that Balthazar's physiognomy was incompatible with life. Obviously I hated the idea, but it eased some of the agony of the what if's: what if I'd gone to the hospital on April 1? Said to hell with the kick counts, this doesn't feel right? What if I'd had a prenatal appointment scheduled for April 2? Maybe he was still alive then. Maybe he could have been yanked out in the nick of time. If he was genetically compromised in some fatal way, none of that would have made any difference.

Then in August I sent my brother all of my medical records from the pregnancy, and after looking them over, he called to tell me what he thought.

"I don't know," he admitted.

He said that there was no red flag, no worrisome pattern that even an ob/gyn might not notice but an eye trained in this kind of thing might see developing. I think he had really thought he would see something, because he is good at seeing. I know he wanted to see something, for my sake.

A moment of compassion here for all of the medical professionals whose job involves telling desperate people that they don't know what's wrong with their dying loved ones. That they don't know why their child died. All these problem solvers, these know-it-alls, these Type A overachievers, having to face the desperate and grieving and admit that they have no answers to give.

I can now add my brother's reluctant "I don't know" to that other trenchant observation that medical science has offered me: "It shouldn't have happened." What, exactly, am I supposed to do with "It shouldn't have happened" and "I don't know"? Because we couldn't both be fine; it's impossible. Full-term fetuses don't die for no reason.

My ob-gyn friend thinks it was a cord accident that wasn't visible at delivery. Lacking evidence for anything else, a cord accident is the perfect gloss. Where do you place blame? It's not really his body, not really mine. It is literally the lifeline between the two. And if somehow it got wrapped around his neck and asphyxiated him, how is that anything but a piece of horrible luck?

I just read an article in the New York Times about a technique that has been developed to quickly sequence the DNA of critically ill babies, with an eye, not to curing them, but to rapidly finding out what kind of fatal genetic disorder they have. The only benefit is to minimize their suffering and to give their families answers. The doctors said they were surprised by how much it helped the families to know what rare genetic defect their dying infant had. It doesn't surprise me. Reasonable people don't expect doctors to save everyone, every time. But even reasonable people want answers, even when there is nothing good about the answers. It's true that Balthazar is gone whether we get an answer or not. Life is about mystery, and living with not knowing, and yadda yadda yadda.

I can live without knowing why some people think homosexuality is a threat to them, why someone dear to me has not been in touch since Balthazar died, why the marketing executive at Atria failed to do her job. I can live without knowing why Balthazar died, if I don't have a choice. But I sure would like to look his killer in the face.



Tuesday, October 2, 2012

Six Months


Last week I picked Jasper up from an afterschool playdate and on the way to the car I asked him how his day had been.

"Mrs. H wasn't there for part of the day," he said. "We had a sub. And do you know why? It almost made me cry when she said it. She was at the hospital. Her friend was having a baby."

I put on my therapist voice. "Did that make you sad?" I asked. He nodded. "You were thinking about Zimbo?" Jasper hates the name Balthazar and only calls him Zimbo.

More nodding. I got him in the car and started driving home.

"I'm different from other kids," he announced a minute later. "I mean, I look like a normal kid on the outside, but I'm really not."

"You think the fact that you had a baby brother who died makes you different from other kids?" I asked, hating my syrupy, condescending active listening even as I employed it. Because wasn't he saying, in the way that children have of cutting to the heart of things, exactly what I'd been thinking too?

Having a baby marks you on the outside, but not forever. I gained 46 pounds during my pregnancy. By the end my friends would smile sympathetically as they watched me lumber up the hill from school after dropping off Jasper. One day the guy at the coffee shop, who hadn't been paying attention to my growing girth, finally noticed it. "Yikes!" he exclaimed, passing me my ham and cheese croissant. Yep, I agreed. Yikes. Pregnancy is a huge physical commitment and sacrifice that is quickly forgotten and totally worth it, unless you did it for nothing.

Now I look like a normal kid. I look like my biggest problem is the chip in my windshield, the dearth of country ham in Portland, OR, or the flying ants trying to invade the living room. If you saw me at the grocery store or the coffee shop, you wouldn't have the faintest inkling. If you hadn't seen me in awhile you might think I had had a relapse in my ongoing struggle with brownie addiction, and that my son's nightmares or my obsession with internet shopping had kept me up a bit too late at night. If I didn't tell you, you would never know.

I try not to look at women who have just had babies. I try not to look at the babies who are always with them. The mothers have giant breasts and flabby midsections too, but the reason is obvious. It is nestled right there on their bodies where everyone can see.

Apparently it's a thing to get a tattoo in memory of your dead baby, for that very reason. You mark your skin to make visible that your baby was here. You display that loss on the outside. I'm just a little too old to be part of the tattoo generation, and I'm from Louisville, after all. As a child I read The Preppy Handbook, and not ironically. Yet I've thought about it. Just his name, I think. On my chest, over my heart? Or do I want it somewhere where people will see it and ask me about it? Do I want a reason to tell that story over and over?

My insides have never matched my outsides anyway. In high school it was often thought that I was snobby. When my husband met me he thought I was a "sweater girl from Connecticut." The weird, the goofy, the shy, the radical; it doesn't necessarily show. Maybe I'm getting tired of the incongruity. I've never been a normal kid, why should I look like one? Maybe now I want it all on the outside.

Honestly, though, a tattoo seems a pallid response to the situation. Really? That's it? A little ink under the skin is all I've got for my dead baby? A shaved head, I could see. Sackcloth and ashes. Some mortification, maybe.

We all understand that you never know what's going on with anyone, but it's easy to forget. The guy I accidentally cut off in traffic who then rolled down his window to flip me off more emphatically as he passed, was his daughter just diagnosed with leukemia? I never think about that, I just think he's an asshole. The checkout lady at Zupan's who didn't smile or make eye contact, did her mother just die? We assume everyone is OK because that assumption makes every transaction easier. Until we're not OK and then we're reminded, brutally, that there are uncounted millions walking around with their guts ripped out. 

*

"Well, stillbirth is very uncommon," Jasper said when I asked him if his brother's death made him feel different from other kids. He sounded about thirty-seven years old. "Do you know anyone else who had stillbirth?"

Oh fuck, I thought, I should have called the Dougy Center. Portland has this great resource for children in grief. But we thought he seemed OK, and we wondered if putting him in a room with kids who'd lost parents and older siblings might make him feel more alone than not.

I told him again about Tanja and the grief group I went to a few times and the blogs I read. Later I asked him if he might like to meet W and O, Tanja's stepsons, since they had been around his age when their brother died, and they would understand what it was like.

"Yeah, I bet they would understand," he considered, looking off into the distance, remembering. "It was horrible."

Everybody's got stuff, a writer said to me a month or two after Balthazar died. This is yours, she said, and I wanted to kill her. She wasn't wrong, her timing just sucked. This is my stuff. This is Jasper's stuff too, and I can't fully know all the ways in which it affects him, all the things he thinks about and doesn't tell me. I hope it doesn't warp his life. At Back to School Night he showed me a book he had written, entitled All About Me. All of the children had done them, and responded to the same prompts. One of his pages said "I feel happy when my mom hugs me. I feel sad when someone I know dies." I imagine he was the only child in the class who finished the sentence that way. But, then again, I don't know. Maybe we are different than the other kids, or maybe not. Maybe we are more like them than we think.