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JeffsLife


Dot-net; Networking; The Talk; What We Want; Abstract Concept; What Nerve; Alex, Chapter One

Dot-net

The dot-com implosion has hit home.

First I must thank a woman named Amanda who went to my high school. She graduated seven years after I did, but nonetheless when big money was ripe for the picking off the Internet, she was the one in position to act.

Some two years ago, I approached her about carrying my essays on her parenting site. She accepted, and shortly afterward she offered to register the name "JeffsLife.com" and set me up with a hosted site for two years. I took her up on it.

Not long after, a huge parenting site started picking on Amanda, claiming that the name of her site was too close to the name of their own. (I thought at the time, and still think, that they were full of gigapoop.) Last I heard of my generous fellow-alumni, she was headed somewhere south to sit in the sun and try to forget the dot-com Borgs with the law degrees.

If that had happened to me, I know I'd want to see the last of the Internet. Maybe Amanda feels the same way. Sure hope she's happy and doing well.

I called the company with whom she registered "JeffsLife.com" and explained the situation. A young man who probably has a giant crush of Seven of Nine informed me that unfortunately Amanda remains the primary party on the name's registration, and that only she can authorize its transfer before the registration expires.

When that happens, my beloved "JeffsLife.com" gets flushed back into the public domain where I -- who believes that he made the name into whatever it means in the world -- will have to out-keyboard all the other nerds to hang onto it. Not my first choice.

This comes as things are happening a little bit. JeffsLife averages more than 80 hits a day now. More sites, and not just parenting ones, are taking my essays and apparently not regretting the decision. This month, a family magazine in Fargo, North Dakota, ran the first essay about Alex and says they owe me $50. I continue to try to get the essays into other paying magazines. I feel I'll be successful.

About a year ago, an invitation from Preemie-l inspired me to put together a real speech about fathering a preemie. I couldn't make Preemie-l's conference and never got to deliver the speech, but the incident inspired me to offer myself as a speaker and volunteer to New York-area organizations that may want a dad's perspective of the NICU and Alex's subsequent issues. And lo, this May I'm suddenly scheduled to speak at a conference in New York City and at another in Syracuse.

For the first time in four years, it feels as if I might soon shake off the job I grabbed in 1998 for the insurance policy, a job that wasn't my first choice no matter how well it's worked out, a job I fit poorly.

At the center of all these efforts, however, at the center of everything I think about my career and work right now, is this site. "www.jeffslife.com" is on all the business cards I pass out. It's right up-front in all the press packets of clips, printouts, and hopes that I slip together when the bosses aren't looking. Anything that endangers this site occupies my thoughts like cancer.

Not that it's too endangered. There's a mirror site on Tripod, with a clunky URL (which I guess stands for "yoU aRe Losing this name soon!"). Even if the dot-com should not be immediately replaced by the dot-net, the downtime would probably be only a few weeks, and I'm afraid that even now I can't believe people will riot if deprived of JeffsLife. Not that I haven't tried.

But I have to pace myself and keep sight of the big picture. "The whole point was never just having a Web site," I told Jill last night. I've also considered throttling the essays back to one a week while I concentrate on building the lecturing angle. I also have two little kids I sometimes almost forget about in the maelstrom of the work.

JeffsLife.net. "It's not as good as a dot-com, and you know it," Jill says. I do. I wish Amanda had written back.

She didn't, though, so now we change. Change is good. I just wish that one of these times, it would be my choice. (February 2002)

Networking

Early on the evening of June 14, 1998, I stood beside a clear plastic box and looked inside at my son. Bells were ringing nearby, nurses were yakking at each other, and babies were wailing behind their own clear plastic. No one brought me a chair. The last person to speak to me that afternoon had been Jill's OB-GYN, who'd muttered something about "a long road" and fled.

"Hello, Alex," I said to the G.I. Joe-sized baby inside the plastic box. G.I. Joe didn't answer, and I had no power to help him.

It has been a long road, and to a degree I've been alone. I've had the lifeline of readers. I've had friends and relatives and, eventually, Alex himself at home. Jill, of course, has also been alone with me. She recalls that the NICU made her feel cast down in society. "We had a social worker!" she still marvels. "People in my family don't have social workers. They are social workers!" It made me feel cast down professionally; for four years I've told people I don't have a job, I have an insurance policy.

I have a dream, of being un-alone in a stadium. Me as Billy Graham, Alex as God, the story of what happened to us the religion that would lift 70,000 people (tickets still available!) out of their seats and into a frenzy that would make them want to rush the stage and touch me, oh yes brother!, before they dashed out to reform how families are treated in the NICU.

At this point, my boss usually asks if I've finished the feature on marketing an accounting firm. This is the kind of work I do. Nobody would come to a stadium to hear me talk about it. I sure wouldn't.

So I'm a guy with a dream and the drive and most of the necessary talent. And the story of Alex has been itching to get out of me since I wrote the first Alex essay. First I put the story on a Web site, and people read it and that was fortifying. Then a few publications ran bits of the story, fortifying my spirit and, to a much lesser degree, my bank account. Then somebody asked me to speak about Alex. Then somebody else asked me to speak. Then, last summer, I started mailing out business cards and essays in carefully assembled folders. I started attending meetings about special ed. stuff. Then somebody asked me to help on a committee.

Three years, seven months, and a few days after talking to G.I. Alex in that isolette, I sat across from a woman at a conference table helping to plan a conference for healthcare professionals and parents. I showed the woman my essay, "The Classics," which relates some of the things said to me and my family in the hospital. I nudged her toward the neo's comment that Jill and I had interfered with Alex's treatment "to his detriment." "The doctor said what?!" she exclaimed.

Ahhh.

I have two projects now, carving my vacation time into half-day slices to work on one committee to plan that conference, and on another committee to spread the word about Early Intervention therapy. For the conference, Jill and I seem to be the anticipated emotional spice of a meeting of mostly perinatal professionals. For the EI committee, I help write letters and Jill lays out brochures.

Granted, the nightmare of a NICU cuts across social and economic lines. But geez, both of my committees meet in paneled offices or lavish apartments. I sit around some thick, sturdy table with the likes of a former TV producer, a neo who lost her own preemie 18 years ago, and other people who look nice and speak well and make me sit up a little straighter.

These people asked me here because of the story of Alex, and we talk and talk and it isn't about an accounting firm. It's about something I know. "I've written a little about Alex," I say to them, sliding a folder across, "if you'd like to read it." They usually do, and sometimes I even receive that exhilarating writers' gift of witnessing the spark of recognition in their eyes. I see their mouths pop open to say, "That happened to me, too!"

I also see a couple of things I didn't have on that afternoon, when my long, long road began. I see people who know. I see the seeds of power. (March 2002)

The Talk

May 8:

Trying to cram a week's worth of work into one day at my job. Conference is tomorrow. Haven't even had time to agonize that, 24 hours from now, I'll have talked about Alex and the NICU in front of an audience.

Dinner tonight with the conference presenters. Jill says that between the kids, the conference, and some freelance work, her head's about to explode. She should try chewing on one of my company's annual performance reviews: Mine due, of all days in the year, today. Mother of an Excel form that everyone hates. Delayed me working on my speech for tomorrow. Plus today I also had to book my flight for another Alex-related speech, in Syracuse next week. Going Jet Blue. They let you pick your seats online. I hear they have in-flight, private TV.

Did look over the speech on the weekend, and realized that it had little or nothing to do with its title. How did I miss this? Re-worked it. Lots of scribbles I barely had time to decipher this afternoon. Told Jill I didn't want to over-rehearse anyway, or rehearse at all. Told her I wanted to wing it tomorrow. Sounded like a stupid idea when I said it, and sounds stupider with each passing minute.

At dinner, informed that most of the general sessions will be in the auditorium of the New York Academy of Medicine. I was envisioning a Holiday Inn meeting room. Lots of people can sit in an auditorium.

May 9:

I take a seat in the auditorium during the first speech and scan the audience for Alex's first neos. Not here. Too bad.

I'm on later this morning. Scribble on my speech, rehearse it with my teeth clinched so nobody will think I'm a homeless man who wandered in and is now talking to himself. Scribble scribble. I look at the scrawls and the arrows and know I'll never figure this out when I'm under the lights. I look over the backs of the heads and tell myself that I'll own this audience. But wait: Wouldn't it be better to feel nervous?

At the break, I meet a neo and try to ask a layman's questions in one-syllable English ("layman parent" is going to be my schitck as a speaker; did I spell "schitck" right?). How do you feel about an informed parent? I ask. What's it like working in a field of medicine where the patients can't yet answer the question, "How do you feel?"

Getting nervous. Palms slick. Hot in here.

Done. It was fun. Flattened my speech on the podium, announced my name, and said that, as the audience had heard in the introduction, I am the father of two "reasonably well-behaved little boys." Felt the slight ripple in the audience. Then I was into it, speaking at the heads, the lights, and the faces (including grandma and grandpa and Aunt Julie, who claimed she did a crossword puzzle...), letting the words fly conversationally, so that if I made a goof it wouldn't sound so bad. Threw in a joke. Acted slightly angry. Half-way through my 15 minutes, the audience became a living thing I could make twitch or nod. Fun.

All day after my talk, people came up and said good speech. The conference organizer said I was "wonderful." Normally hate that word, but here it was music. Somebody from the March of Dimes was impressed. So was somebody from the National Perinatal Association. At least I think she was. Felt like fame. Felt like I finally sang a rock song in high school.

Exhausted at dinner tonight with attendees. Alert for compliments, though. Not as many. Wish I were speaking tomorrow. Wish I were speaking every day.

May 10:

Up at 5:30. Too excited to sleep. Been waiting for years to wake up like this. Coffee morning. Hungry. Stomach starting to protest change of routine. Stomach has no ambition. Six years since I was this excited. Did laundry.

Noon. It happened 24 hours ago. Glad lunch is earlier today.

At one point, Jill has chance to speak at the mike about bad discharges. She chickens out and blames low blood sugar. Later, she talks up a storm in a workshop; a NICU staffer comes up to her afterwards and says, "You've given me a lot to think about." Jill says she's going to write white papers on all this. I see her scribbling.

Meet a Brisbane neo at lunch. Nice guy. He suggests that NICU fellows spend two weeks in the home of a recently discharged preemie. His NICU also has an Internet connection for parents. Another doctor mentions my talk again, in a workshop. I thank her for the plug.

The two days zip by like a great date. Pretty soon the attendees who stay until five on this Friday are walking up the aisle of the auditorium and kissing each other on the cheek. Even some of the men. "I was thinking I'd be relieved when it was over," says one neo, "but I'm not." I hand out of the last of my photocopied essays and realize that on Monday it will be back to the job I've had to have since Alex was born. On Wednesday, however, I leave for Syracuse. I could get used to this. We all could. (May 2002)

What We Want

Last month I had business trips. I've had business trips before, often far away to Vegas or California. I'm well aware that such trips involve packing, hailing a cab, weaving my way to the ticket counter, taking my shoes off for security, then spending 45 minutes to two hours "dozing and floating," as Richard Yates called it, to places like Savannah, Georgia, where I have little time to roam because I'm stuck in a hotel.

Jill's mother has a saying: "You get everything you want in life. Just not when you want it." Well, I would've loved this job in the '80s, much the same way I loved watching TV. Back then, I still had time -- in fact, nobody much cared if I came or went, lived or died -- to insert a spare day on either end of a business trip. Said day I would have spent strolling someplace new, exploring strange new accents, and eating shrimp on somebody else's dime. The few times in my twenties when I took a cab and some company paid for it, I thought I'd arrived.

Even though these two recent trips were just on the East Coast -- how the Vegas economy survived this year without my annual input of $30 in nickels I don't know -- business travel is always tough. You have to look, speak, and act awake even after weathering the terror of being sealed in a dozing, floating, tube surrounded by strangers and aviation gasoline, and arriving at your Marriott to be told without expression that they've mislaid your reservation. You have to look at little boys crawling and running near the gift shop, and miss your own sons. For a minute. Still, the meals are still on somebody else's dime, and you're not with the kids.

Now, however, I have little kids. The TV is all Elmo; there are no spare days. I got back last night. I was tired. It looks as if Alex grew two inches while I was gone.

Our babysitter was sick on my first day gone during this trip, and my long-distance time was spent trying to fortify Jill. I told her not to scrimp, to spend what she needed to spend on back-up babysitting to keep herself fresh to handle two willful, non-talking animals who were masquerading as small humans. Put a bottle in Ned's crib when you go to bed, I advised, and this will keep him from screaming hungry at 5 a.m. Useful tips like that.

Jill didn't need me to say all this crap. She knew what to do. She had to do it on the front lines all by herself, while I watched non-Elmo TV and then slumbered all the way to the wake-up call.

Even though she accompanied me on one of the trips in May -- to Washington, where she spent the day in museums while I spent the day working -- Jill deserves extra combat pay, because one of the trips I took in May was to speak about Alex and our experiences, what I'm pushing as the future path of our (at least my) fame and fortune.

This was in Syracuse. Originally, I intended to take the train because I was scared of flying after 9/11. Then Jill convinced me to fly a cheap airline. Which meant I could go up there and get back the same day. Except I'd already made plans to attend all of the second day of the conference. Which meant another night for Jill alone with the Twin Terrors.

"We made some tactical errors this month," Jill told me long-distance, as I kicked my shoes off in yet another Ned-free hotel room. Indeed. The boys, or at least one of them, could've come with me to Syracuse, as there was childcare. We could've arranged better child-care support for Jill while I was gone. And, as she put it, "a thoughtful husband would have arranged for a babysitter and a dinner out for his wife when he got back."

Occasionally, you say the first thing that comes to your mind to get out of a sticky phone call, and it turns out to be a good idea. "You know," I told Jill, "there's no reason we couldn't work to get you to one of these events as a speaker."

Out of respect for what I've accomplished with this site, not to mention in front of a real audience, Jill paused a nanosecond before replying: "Really! I could use a night in a hotel! Ned, no!-"

So now, with May behind me and my family, I envision a future where the phone will ring or the little e-mailbox on the screen will open, and it will be an invite to a conference in some nice hotel, on someone else's dime. I might get a few days off for the kids, or Jill might. That's fair, because you get everything you want in life. Just not when your wife wants it. (June 2002)

Abstract Concept

I wrote this for consideration by the National Perinatal Association, with an eye to attending their conference this December. I'd never written anything like it, and put the job off for several days. After I started, however, the scientific and self-promotional language flowed with an ease that surprised me. I wrote it in one draft. - JS

CATEGORY: Parental self-empowerment

TITLE: Web site development and communication

PROGRAM DESCRIPTION:

Increasing evidence suggests that having a child born prematurely and enduring an extended stay in a neonatal intensive care unit (NICU) exposes parents to fear, guilt, uncertainty, and above all isolation, as many medical institutions do not actively promote parental interaction among NICU families.

Jeff Stimpson, a journalist whose son Alexander was born in mid-1998 three months premature and placed immediately in a NICU in New York City, experienced such isolation. He found that the unique structure of the medical field of neonatology, wherein a baby unable to communicate with medical staff is in fact the primary patient of that staff, often rendered a parent's needs and desires secondary. Further, Stimpson recalls that his son's institution made no effort to place him in touch with other parents, and that the ethnicity of the other families in the NICU was varied, thereby creating barriers of language to communication.

As Stimpson's professional background had included publishing op-ed pieces in newspapers, he began keeping a journal in similar style on his family's NICU experiences. These weekly pieces included the course of Alexander's treatment, narratives of medical emergencies regarding his son, comments made by doctors and nurses to his family, and his and his wife Jill's reactions to the NICU experience.

Jill, in the meanwhile, had been gathering online support from a variety of "preemie" organizations, most notably preemie-l.org. At the suggestion of many parents to whom Stimpson e-mailed essays, the pieces were collected and posted online at a site entitled JeffsLife. Stimpson's site differed from similar, personal narrative sites by preemie parents by virtue of the regularity of postings, Stimpson's professional background and the resulting professionalism of the site, and Stimpson's actively and regularly soliciting readers to the site. The latter was accomplished via numerous online discussion boards, and the publishing of selected essays on writing and parenting sites and in newspapers.

The purposes of the site soon included:

1. An outlet for Stimpson and his wife, and an empowerment device by which they recorded the positive, and, more important, the negative experiences of their NICU stay.

2. An avenue of documentation of this significant event in the lives of Stimpson, Jill, and Alex.

3. A source of identification and support for other parents of preemie babies.

Though scientific data is lacking on the overall results of this model of care for preemie parents, subjective analysis indicates that such an outlet can only benefit. Regular narrative expression of the NICU experience forces analysis of the treatment received, and serves, as noted above, as documentation of both the life experience and the medical treatment received. It also promotes an increasing and widespread awareness of the family involved, promotes support systems, and establishes contacts for information for when the baby graduates the NICU and must receive a variety of follow-up care independent of the medical institution. (June 2002)

What Nerve

I slipped into my shined black shoes, knotted my tie over my white dress shirt, pulled on my dark blue blazer with the silver buttons. No lint. Clean pants. Jill had picked out an artsy tie, splashed with blue. The bus down Fifth was quick. I walked two blocks, snatched off my baseball hat, and was through the door of the Marriott at 10:45. I was speaking at 12:30.

I was to be one of six Special Needs parents talking about their experiences. I was wearing my big watch (easier to time myself when nervous). My bag was leaden with ambition: cards, Alex essays, increasingly lopsided photocopies of that Newsday piece on JeffsLife, and speaking references. I hand these papers to anyone who won't hand them back. Crushed somewhere in the bag as well were three pages, in bulleted 20-point type (easy to read when nervous), of my speech:

"Alex born in a NYC hospital and put in a NICU on June 14, 1998 ... 21 ounces at birth ... First time saw NICU, they took me up right after Alex was born. Struck by how bright and how many machines. A big hanger for little plastic boxes. Since, I've also heard it called a 'casino,' with lights, attentive crowds, and similar talk of 'odds.' ... Standing over his isolette and the doctor informed me that 'this was the beginning of a long hard road.' In the way she said it, I KNEW she had no real idea what she was talking about."

"Mr. Stimpson?"

I turned. I was steered toward Danish and coffee, then into a broad room with round tables and white tablecloths, and sparkling water glasses. In the little rattling boxes that used to hold matches were explosive breath mints. I sit beside a mom who was also speaking. She said she was nervous.

I should've been, but wasn't. I have been, the three times I've spoken about Alex to large audiences ("large" meaning attendees numbering from 100 to four). Clipping my words, trying to keep my voice from cracking in mid-talk, trying to make eye contact without spilling my speech all over a stage.

We were guided up the steps and to our assigned seats. I was last. The keynote speaker took 30 minutes to tell about her child and her family. Her speech was well-built and heartfelt; she fought tears a couple of times, and everybody knew it was no act. She talked about her experiences and how she reacted. She didn't ramble. If I ever give a keynote, I hope it's that tight.

The four remaining parents ahead of me started in. We'd all been given about seven minutes. By parent three, I noticed common themes: the parallel world of special needs, finding schools, chummy bus drivers. The woman right ahead of me talked about how, for a long time, she hoped she'd outlive her child.

At 10 to one, the emcee introduced me and my Web site; the parent next to me scratched the URL on a Marriott pad. I looked at my watch and could see with no trouble at all that every parent had run over seven minutes, and that now every one of my syllables was going to eat into the workshop time.

I decided to admit that, opting for what in this biz is known as the "soft opening." "I really don't have anything to say," I started, "not after the stories we've heard here. I'll keep this short, as I know we all have to get to workshops and we've all been sitting here a long time, and I really have to go to the men's room."

Big ha's. Love the ha's when they're intentional.

"Long story short," I said, and began chopping away at the bullets and the big print. When I got to the part about Jill lugging around Alex's first oxygen tanks, I rang the bell: "And any applause for me," I said, "should also go to my lovely wife Jill, right over there..." Warm point, big hand. Her cheeks turned into beacons. First time I've ever done that, and I may do it again.

No nerves at all, even as I found myself repeating lines used in other talks, such as being "drafted" as a special needs parent, and that you shouldn't compare your kid to other kids ("It's not fair to the other kids." Applause. Ahh.) I summoned another laugh (knew I would) when I told how Alex's bus driver halted all southbound traffic on Fifth Avenue one workday morning by pulling the bus diagonally and getting out to hold up his hand. I got another laugh (knew I would) when I said we were still trying to get free diapers through Medicaid ("If anybody can figure out how to undo that knot, I'd be grateful."). I need to get paid for this stuff.

I summoned a moment of silence over outliving your kid. "Maybe we think about it more than we like to admit to ourselves..." I don't want to think about that subject too much.

"And that's about it," I said. In the biz this is known as the "dribble ending."

We got a standing ovation. Three or four other parents came up afterward. "I am going to call you and leave a message on your machine where you can get the diapers!" said one mom. "What you need is the gray form and a prescription from your doctor," said another.

Here came Jill. I asked her how I did. She kissed my cheek. "You sounded nervous in the beginning," she said. (November 2002)

Alex, Chapter One

(This is an introduction to a proposed book on Alex's story that I recently submitted to an agent. It was rejected within hours, but any comments would be much appreciated. - JS)

I used to think five years was a long time. Five years once took me from junior high school to college. I got off a bus alone in Port Authority bus station, and five years later was making a living as a writer in the toughest city in the world. I went from never having seen Jill, my future wife, to celebrating our first anniversary. I used to think I was alive in a way I'd always be, and that by any sane measurement, five years was a long time in a life.

Five years can also be a long time for a family. "After you have kids," goes the maxim, "the weeks go slow but the years go fast." My mother had her own twist on that one, mainly that the older you get, the faster the years go. If a five-year span for a family includes having children, then the period can be a lifetime of its own for the parents. Having kids, I've learned, is one of life's magnificent changes, one of the biggest. Why have kids? childless adults wonder. Why have sex? I reply. Why get married? Why date? To those who don't want kids and can't understand why anyone would, I reply that it's on that level.

My son Alex will be five next month, so I have another question: Where have the years gone? I wish I didn't have an answer. But I do. They have gone to doctors, hospitals, conferences, hatreds, gratitude, envy, frustration, and worry. It began before he was born, a period when medicine invaded my life with scans, tests, and pretty young doctors with crucifixes around their necks who said, after eyeing my wife's sonograms, that they "would pray for us." That period, however, lasted mere months, and, medical-intervention-wise, turned out to be a mere rehearsal. Alex was born early on a June afternoon in 1998, in a hospital in New York City. He was three months early. They shouted "Boy!" and rushed past me, where I stood by my wife's head, trying to keep my Chuck Taylor off the patch of her blood on the OR floor. I forgot almost everything when Alex sped past me. His head was a gray tennis ball; his arms and legs thick as magic markers. The father's first kick of awe and love sank into a feeling that Alex was too small to be human. He must have been a toy. The doctors dove on him.

He was not a toy. He was human. I was his father. I still am, of course, and I can't remember what life was like without Alex. Some of the five years have gone to joy and laughter, and I haven't left that out here.

Lately the last of the five years has disappeared into the worry that Alex will never live on his own, will never live with fulfillment, that maybe he will never live at all. The worry that he will die, not before us, but after. That he will live in the care of strangers for whom he is a paycheck. Who don't appreciate his laugh, who can't see the boy beyond the grabs and pinches. Who laugh at him, and who wish he and the mushrooming population like him would just get better, find some drugs that work, or disappear.

The first thing Alex did, besides start doing a good job at making the weeks go slower but the years go faster, was to shatter what had been my life's pattern of fortune. All my life, I'd gone through crappy events for a period, then had it all turn around in a wave of good luck. I believed in balance. I believed that if you stayed at the table long enough, you'd draw aces.

Our Alex Game was played out first in a NICU, or neonatal intensive care unit. Most people you know will never see the inside of one. More of your acquaintances and friends than you realize, however, have probably had a baby in a NICU. Most people stay in NICUs for a few days or a week. Some people, the ones most people walk by with silent pity, stay longer. The NICU has been compared to a casino, with bright lights, beeps, people clustered in small groups with tired faces in which the patience is cracking. The babies live in plastic boxes. Tubes run in and out of the boxes. Wires and tubes run into and out of the babies. There's always a bell going off. A lot of people talk about "odds."

There was no balance to Alex's life first months; never when he was in the hospital did I sense that things could quickly change for the better. He weighed 600 grams at birth -- that's about as much as a couple of sticks of butter -- and he didn't grow in the NICU for, well, a lifetime. Lungs are the last thing to develop in a baby in the womb: preemies often have trouble breathing. Alex was intubated, and pure oxygen was pumped into his lungs. He wiggled. He didn't make a sound, because the tube was between his vocal cords.

The only balance came from the give and take, the pluses and minuses, of medical treatment. The drug Lasix, for instance, got the liquid out of his lungs but also checked his weight gain. The same vent that kept him breathing delivered oxygen that scarred the tissue of his lungs, making the absorption of oxygen into his blood difficult. It's called BPD, or broncho-pulmonary disease.

"It's 'damage,'" Jill used to say. "Call it what it is: 'damage.'"

Alex spent six months in the NICU, came home a week, suffered some kind of respiratory crash in a pulmonologist's office -- we think a nurse put him on an empty tank of oxygen -- and he went right back on the tube and right back in the hospital. The toughest city in the world became positively inhuman when we graduated to the pediatric ICU, where they had to keep this alert, willful, 6-month-old baby chemically paralyzed to prevent him pulling out his breathing tube. Around Christmastime, as I watched the nurse wet his eyes with artificial tears (little boys paralyzed by drugs can't blink on their own), somebody came by with a charity Christmas present. I unwrapped it, looked at the little plastic panda face, pressed the nose to produce the tinny circus music, and wondered what in hell I had ever done to deserve this.

On Christmas Eve, I went to a psychiatrist. She happened to be pregnant. "What you've been through," she said, looking out her office window at twinkling lights, "it's inhuman." Good word, doctor.

What happened through the next five years of my life, the life of my wife and family, continues. There has been no plateau." "That's what the story of Alex needs," people have said. "It needs some plateau." I agree. But the essence of the story, the secret of whatever power it contains and whatever message it carries, is that there is no end, no blatantly wise turn in the road. The heart still beats.

The boy laughs and pinches, and sometimes he picks up what we ask him to pick up but usually he doesn't. He's in school now. He spills his Cheerios on the floor, yet has carefully walked the length of our living room holding a glass cake plate without so much as a ding. He has a little brother, whom he has caressed, shoved, hugged, and bitten. He screams when we put him to bed. He lives on chicken nuggets, some pizza, pretzels, Goldfish, and other crunchy crap. He likes Elmo and he likes to paint. He can't sit still. He has a few words. A month ago, in the grip of a fever, he said his first sentence: "I'm thirsty." He still wears diapers.

He's going to be five. His mother and father have aged many, many more years than that.

This is how he began. (June 2003)

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