This similarity is why I like hanging around with the parents of preemies. I appreciate the eerie visceral reactions we share. Certain key phrases are likely to have us glancing up across the room at each other, shaking our heads in solidarity, or knowing with certainty what the others among us are thinking. We know the short hand.

Most of us have curios of our experience to prove our membership in this club:

A few, priceless, fading Polaroid photos.

Bizarre baby memorabilia from the NICU. (Like me, you’ve probably learned just how difficult it is to find a spot for tiny commemorative IV cuffs in the typical baby book.)

And breastmilk collection cups. I can’t be the only who saved them.

I washed mine—somewhere in the vicinity of 1400 of them, I calculate—scrubbed off the permanent marker listing the date of pumping, and put them into long term storage. I just wasn’t able to part with something that was such an integral part of our life in the NICU. I still horde a sizable number of them—only now I use them for the storage of minute portions of leftover cooked carrots, stringing beads, sequins, nails, nuts, bolts, and live insects. These things have hundreds of practical uses. You can use them to rinse shampoo out of your childrens’ hair and clean watercolor from brushes. Last winter, when our sidewalks were treacherous, one of these cups served as a scoop for ice melting chemical. In my life--my life after the NICU—the breastmilk cup is a symbol, a discordant article that has become an accepted part of our lives, incorporated into our forever-changed, but semi-normalized life.

Maybe I’ve just gained the proverbial distance everyone talked about when we were in the hospital. "Someday," said kind-hearted nurses, their faces severe in the lighting of the NICU, "you’ll all be home and this will seem like a long time ago." Have I actually achieved the promised perspective? The memories don’t feel distant. Or fragmented. Maybe this is what time brings—or maybe it’s a trick the mind plays to live with a story that is disorderly and dangerous. All I know is, after all we’ve suffered together, my daughter Sophia, my husband Scott, and I have a shared story, and it is one of the most precious and useful gifts we have ever been given.

The best parts of our experience can be replayed in my mind. (Kangaroo care. Good test results. Going home.)

The story can be gently shared with parents just heading into the dark tunnel called premature parenting.

It can be used as an example when medical professionals ask, "What was most helpful during your daughter’s hospitalization?"—or, better yet—"Is there anything you’d suggest to improve the quality of care for parents and preemies?" I love the trusting innocence of that question.

Gathering up the shards of Sophia’s story and putting it into words—whether spoken or written—has been a way of living with what has happened in our family.

So let me tell you a story, one I know by heart. It is Sophia’s story, loaned to me for the weekend.

She was a 24-weeker born after very little warning. My husband Scott watched in stunned silence as she was delivered, all 1 pound, seven ounces of her, into a room crowded with physicians and nurses. She registered the shock of cold air hitting her raw skin and unfinished lungs with an unearthly, high-pitched crying. She sounded like a terrified full term baby on helium. I reached to cup my hand around her head in futile comfort. Her eyelids were fused shut and her mouth was open, and I saw her perfect pink tongue inside. She waved her spindly arms and legs in a pitiful attempt at escape. The instant the cord was cut, she was carried away to the station where the NICU team was gathered. Doctors and nurses leaned over her and in a moment, her crying stopped as the ventilator tubing was inserted. The air rang with the memory of her voice. The contours of her face had been burned into my brain. I could still picture them after she had been wheeled away inside a Plexiglas box.

When Scott and I visited her in the days following, my optimism came up hard against reality. Inside her isolette, and tethered by tape, IVs, lead wire, a blood pressure cuff, and ventilator tubing, she didn’t look early; she looked ancient, already depleted. Her ribs showed. She was just a handful of little bird bones and skin. Her chest heaved up and down to the ventilator’s rhythm. Her arms and legs flopped. There was hardly any life in her at all.

I had never seen a face so full of anguish. I didn’t want to hold her—the thought didn’t even occur to me—but I longed to protect her. I hovered beside her isolette, my throat constricted and my chest aching. Sophia Olivia. Wise bringer of peace. I am failing you. There is nothing I can do.

The nurses came up with an idea—something called "pumping." It sounded like fun. When they led me into the pump room and described the process, I realized I had been wrong about the fun part. But it did give me a purpose. Every three hours it was my job is to carry a bag of plastic apparatus down the hall and lock myself in a brightly lit, 5 x 5 room. There I fastened two suction cones to my chest and read three-year old Women’s Day magazines until the impressive, overpowered machine had extracted every drop of milk from my body. This procedure made me feel foolish and bovine-like, but useful. I understood that breastmilk was one of the best things I could do for our baby. And I desperately wanted to do something.

The breastmilk cups came in sealed plastic wraps. At each session I tore one open, removed the lid, and poured in the cream-colored breastmilk. The pump bottle was spotted with dots of clinging milk. I shook them into the cup; every fraction of a cc was going into the freezer. Suddenly, I stopped and scanned the surface of the liquid. Any contaminant in the bubbly? A fleck of dust? A stray eyelash? I was terrified that a germ will be pumped into my fetus-child’s vulnerable body. I had dark visions of psychotic factory workers in the sterile prefab buildings where these cups are made deliberately contaminating them with bacteria or a virus. I knew I was being paranoid, but I couldn’t stop worrying. I had crossed over. It would take a long time to change my dark mentality and my everyday terror.

Pumping done, I returned to the isolette to stare at the little space alien in the plastic box and write barely legible journal entries, bits of an unfolding tale. It wasn’t clear why I needed to do this—perhaps, ironically, to record the painful details of our days--days I never wanted to relive. Perhaps to keep track of the flood of doctor’s and nurses’ jargon-laced assessments. Already I recognized their knowledge as a lifeline. It was my link to this tiny, new, important person in our life, Sophia. Knowledge wasn’t much protection in the middle of this war, with bombs whistling through the air and exploding on the ground ahead of us, but it was something. At least it was a little scrap of canvas covering over our heads.

Scott and I walked the halls of the hospital, recounting for each other the events leading up to Sophia’s birth. He was able to remember some of the details of labor and delivery that had been lost to me in my pain- and Mag-fogged cloud. He told me what had happened to Sophia after she first arrived in the NICU. And I could tell him how he looked when he returned from that first trip to the Unit—ashen-faced and hopeless. Having these gaps filled in helped us start to fill out our story. (It makes me think that every parent at risk of a premature birth needs someone of clear mind and acute observation skills to stand by and absorb the lost details of labor and delivery. Traumatized parents of preemies, who always give birth in crisis, may not even have memories afterward.)

The NICU was our new world.. The FUTURE—whether positive or negative—was unimaginable.

I watched parents pushing their children in strollers around the city lake near our home, only half believing that if everything went well we’d someday be strolling among them. There was no way this medication-dependent, unpredictable handful of wires and flannel could ever breathe room air, let alone the oxygen of the great outdoors. I silently absorbed the doctors’ statistics for the common medical problems of preemies. By wordless agreement, Scott and I did not discuss "What if--?" With so much risk ahead, it felt safer to concentrate on right this minute. "When you take Sophia home…" her nurses said matter-of-factly, but I couldn’t picture it. My brain was already crowded with fear and grief.

During this time, I know that I gave a fairly good imitation of normal function. I walked, talked, asked questions, and participated in cares. But secretly—in private—I felt like I was coming apart. Heel pokes, lack of privacy, eye exams, lack of sleep, IV insertions, lack of autonomy, and the very real danger of losing Sophia were rubbing away our layers of self-protection. I was down to the dermis now. I could hardly bear standing in the same room with people having a normal-volume conversation, my nerves were so frayed. Scott single-handedly managed staff and business as usual at our design firm, and even found the energy to be humorous and outgoing in the hospital. But…at home, in private, he was a different person—silent, overwhelmed, and depressed.

Of course there were the moments of exquisite joy that gave us a caffeine boost and the encouragement to continue on. But much of the time now we were functioning on automatic. Although I don’t think we did this consciously, we worked hard at hiding the strain and demonstrating that we could cope. We were leading a kind of double life because somewhere, in invisible ink, it was written that we couldn’t break down. We had to stay strong, even though every day we were standing on the brink of a serious, downward turn in our baby’s condition.

Our nurses advised us to take it day by day, but even that seemed impossible and overwhelming. What we had found is that contrary to the popular metaphor, having a baby in the NICU is less like riding a roller coaster than being dragged behind it by a long rope. The ride beats you up. It consumes every brain cell. It takes your energy, down to the last calorie. It makes you afraid of a ringing telephone.

You know how television characters are always trying to hold back the distraught mother when her child has been injured? That’s how an NICU parent feels much of the time--physically restrained. Close proximity became my own hope of survival. I stationed myself beside my daughter’s isolette. The hospital was the place where I could catch my breath, where panic didn’t overtake me. Scott coped in his own way, spending long, grueling hours painting the exterior of our house—i.e., "doing something" to allay his nightmare.

I went looking for commiseration. Understanding. A reason for why my husband and I came at this experience from such opposite perspectives, and why the distance between us shook the last block of security from under my feet. An explanation for the panic I felt when the need for sleep or work obligations forced me away from the NICU. An idea of how to get through the next few minutes, let alone the coming week. And ways to comfort this baby writhing under the photo therapy light. We were fortunate to be in a hospital where information was freely offered. The medical records were stored bedside, and the physicians were available for care conferences upon requested. Our nurses, who I grew to love with a passion second only to what I felt for Sophia, were (with only a few notable exceptions) warm, sympathetic, and steady. I leaned on them, gratefully. Medical texts and Sophia’s daily log armed me for my role as advocate. I consumed them like air. But they didn’t halt the progression of my sorrow and terror.

When I was given a brochure containing quotes from parents talking about the blunt force trauma of having a premature infant, I read it word for word in a kind of heart-pounding amazement. So it wasn’t just me. Reading how other parents felt calmed me. It reassured me that I was okay—acting rationally, considering the circumstances. In those stories, I recognized myself. I heard my own thoughts. Sometimes hearing the words said out loud—even if someone else says them for you—is healing.

I began to glimpse a profound truth: that the stories of fellow parents could help me cope with the prospect of walking back into the unit and finding my baby with an IV in her scalp. They made me feel, even when I was facing the unbearable, that I’d been here before—or at least that I’d seen the shadows on the wall. I wasn’t coming into the experience blind. This was a simple thing, but in the same miraculous way that kangaroo care is simple. As if something that offers such warmth and hope and normalcy can ever be adequately described with such a term.

Sophia offered her own brand of encouragement.

So there really was life after the N.I.C.U., life at home. How would we ever study enough, research enough, practice enough to be prepared for it? Where were the Preemie Parent Guidelines published—and where could we get an advance copy? And who would be our mentor and guide through this new, uncharted course?

I was surprised to learn that parenting a preemie after the NICU was a mixed bag, like having a baby in the NICU.

It was euphoria, of course---having Sophia at home.

It was relief—as much as we missed the people who had worked to get us here, we were overjoyed to be back on our own turf and in our bathrobes.

It was surprise--that the pleasure of having our baby home was regularly disrupted by monitor alarms, feeding difficulties, and reflux.

Just as Scott and I had been forced to revise our dreams of an ideal birth, we had to adjust our expectations for life afterward. Our experience would be different than the parents of those full-term babies we’d heard so much about. Flexibility and a sense of humor were required. Little by little—sometimes with grace and sometimes with groans of resistance--we adapted to fit the realities of parenting a preemie.

For us, the discovery of life at home with a former preemie was a gradual process, alternately challenging, painful, and blissful. We’ve had many mentors and many guides. We have sought input from doctors, teachers, and books. But one of the most powerful and unexpected keys to survival after the NICU has again been the voices of other preemie parents.

In the months after Sophia’s homecoming, we rocked her endlessly, in wonder. At last, unlimited kangaroo care! I couldn’t even put her in the crib after she’d fallen asleep at night. I just kept rocking, making up for lost contact.

I had overcome my desire to weigh every soggy diaper on the kitchen scale, but I was obsessively tracking each drop of milk or formula that went into her mouth, (even if most of it did roll out again and dribble down her neck). As near as I could tell, our condition was stable.

While she slept I made regular visits to the bassinet with a pocket mirror to be sure she was breathing. I watched the blink, blink, blink of the monitor, rehearsing the steps of CPR in my mind.

We were in isolation. Scott was working double shifts at our design business so I could work from a home office and care for Sophia. Sixteen weeks in the hospital had made us hyper-vigilant. We invited in no visitors or friends, although after several weeks of aloneness , I began to pray for UPS deliveries, phone solicitations—anything to relieve the monotony. Still, when the poor delivery guy came with new monitor equipment, I made him scrub his hands with antibacterial soap in the kitchen sink.

I struggled with breastfeeding and finally adopted the breast pump into our family as one of our own.

I grew accustomed to spending 45 minutes feeding Sophia—25 ccs of precious breastmilk!-- then having it come right back up--with force.

Our pediatrician (who should be sainted; he actually made house-calls)—gave us his home phone number so we could call him in the middle of the night and tell him, tearfully, that Sophia was setting off repeated apnea monitor alarms.

But it was strange to have no ready resources—no nurse specialists to turn to when we were unsure of ourselves. With no medical professionals on hand to give us a daily report on her condition—Scott and I became Sophia’s primary nurses and observers. This took some adjustment. Gradually we grew more confident in our own abilities.

Miraculously, Sophia grew.

We came to the end of our first winter of isolation with no disasters. The follow-up clinic pointed out some lagging areas of development, but we cheerfully assumed she’d grow out of them. Hadn’t we heard that preemies caught up by the time they turned two? This sounded plausible. We started loosening our white-knuckled grip. One glorious spring day we put our wide-eyed infant in a stroller and took her for the long, dreamed-of walk around Lake Harriet. Eventually we invited company over. (We still made them wash their hands, but we did allow them to enter the house sans surgical masks). Sophia caught her first cold--and aced it.

Success. It appeared that we had weathered the storm.

After a second winter of isolation, at 20 months, Sophia suddenly rewarded our patience by taking her first unaided steps. This kid was amazing. We were on our honeymoon, completely in love. The feeling was mutual. We’d been through so much together.

Now all that was left was speech. We were relatively new to parenting, so it took awhile to realize that her complete lack of language wasn’t typical. (This may be a skewed benefit of isolation—you can’t compare your preemie to other children.) She had two sounds she substituted for words—a very definite, negative "Ga!" and, when we failed to respond to that—an irritating, high-pitched whine. Mostly, though it was all smiles. We understood each other. Even without language, we had no trouble communicating. Still, it would be nice when she said "mama."

A second pregnancy tested our optimism, but we had intentions, this time, of "doing it right." We did our homework, consulted the perinatologists, had the ultrasounds, and were diligent in monitoring for contractions.

But my particular uterus is an organ of unique stubbornness and hostility (the term "irritable uterus" just doesn’t do it justice), and at 24 weeks, I started contracting again. The next three months were spent in a hospital bed in the high risk OB. I was a model patient. I stayed in bed and looked forward to the visits of the technician who came to replace the dressing covering my IV site, where magnesium sulfate entered my body. This was strict hospital bedrest. Regular contraction scares were treated with terbutaline shots. I didn’t complain because their effect were as close as I’d come to a cappuccino rush in a long time.

Sam was born at 35 weeks gestation when my membranes ruptured. Five pounds, eleven fat ounces. And Elvis sideburns to boot.

Although the experience had once again been nightmarish--including a brush with pulmonary edema, the separation of our family, and financial difficulty--we had once again escaped the dangers of the NICU without mishap. I was ready to add our family story to the legendary baby-in-a-shoebox ones we’d heard so much about.

Except that Sophia still wasn’t talking at two and a half. With baby Sam at home and our lives presumably returning to normal, I started tracking down assessments. After we had completed an inordinate amount of paperwork and Sophia had submitted to numerous sessions with observant therapists, she was diagnosed with apraxia of speech, a motor planning disorder. Somewhere between her brain and her lips and tongue, messages were getting scrambled or lost. From what I understood, there was no guarantee that speech therapy would enable her to speak. Sophia began meeting twice a week with a speech therapist, the first of many such professionals who would enter our lives.

I was stunned. How had I had missed this possibility—that there were potential hazards after hospital discharge. Had the message just failed to register? That didn’t seem possible. This was me, the one who worried about everything. A doctor only had to mention a possible disorder, and I started noticing symptoms. Here we had been in danger the whole time.

We were still reeling from the news of this diagnosis when the speech therapist dropped more bad news. She detected other areas of concern, and recommended further testing. Better to be safe than sorry.

Scott and I sat at a table while the testing occurred. We were getting used to this, having our daughter examined while we nervously observed. The evaluator tried to interest Sophia in fitting wooden pegs into drilled holes, and Sophia was refusing to cooperate. Typical two-ness, I said. Or maybe preemie feistiness. We’d always heard that fight and spirit were what brought surviving babies through the NICU. The tester shook her head, pointing out that when Sophia knew she could accomplish a task, she was more than happy to cooperate. "This is something that she has trouble doing and she resists participating." It was at that moment that I finally understood. Sophia’s delays were more extensive.

Very swiftly we were bombarded with more evaluation referrals, devastating test scores, a diagnosis of sensory integration disorder, and sudden enrollment in a five-day special-ed preschool with speech and occupational therapy support.

This initiated a dark period in our life after the NICU. My assumptions about our happy outcome had come undone. I wasn’t prepared to face it--not again. After everyone in the house went to bed, I wept. I was so alone. I felt as if I were back in the NICU. Although I had leaped back into my advocacy role--researching, reading, and asking questions--I was hungry to talk to someone who would understand the terror I felt. Scott and I were dealing with our latest bad news as we had during Sophia’s hospital stay. He preferred not to discuss our situation in depth, wishing to carve himself some space and distance from something he didn’t have the stamina to face.

Searching for information on the Web, I came across an e-mail support group called Preemie-L. The subscribers were at all points in the preemie journey and from all over the world. Some had grown children. Others had given birth just weeks before. Prematurity was the only connecting thread. I was a novice e-mail user, but I sent an introductory letter. In a matter of minutes I received three welcoming letters. These people listed their own children’s gestational ages and histories as if it were a normal part of conversation, and casually dropped terms like GERD and bronchopulmonary dysplasia. I was hooked.

Answers came as if by magic, appearing suddenly in my mail box. The letters gave me footing even when our little boat was still rocking.

Preemie-L taught me about the wildly diverse stories among parents, and about the amazing similarities. It’s where I learned—through the raw words of mothers and fathers themselves—that miraculous stories were sometimes offset by sad ones. It’s where I heard firsthand that for some parents, life after the NICU was a continuation of the unpredictability they had first experienced in the level 3 nursery: surgeries, crushing diagnoses, and emergency trips back to the hospital.

This international community linked us orphans together. It was the place where we began to construct for ourselves a new standard for "normal" or "expected." We shared stories and these stories somehow enabled our transition into parenthood, something that the parents of "typical" children appeared to do naturally and effortlessly. I remember sitting in the doctor’s office waiting for my post-delivery follow-up appointment. Sophia was about 29 weeks chronological age and still ventilated. I was surrounded by new mothers of full term babies. I had no idea what these women were talking about. I couldn’t imagine carting a newborn out into the world. I couldn’t imagine chatting nonchalantly with a stranger about layette sets, baby showers, and the joys of breastfeeding.

Preemie parents don’t get to experience the typical milestones of full-term parenthood so it is important that we find a place where we can share what is typical for us. Things like:

- Bittersweet birthdays.

Being part of a group of graduate parents helped me sort out which outside "helpful advice" to take in and which to politely tune out. It helped me to smile tolerantly when someone gave us the "Stop worrying" pitch. You know, the "I have a friend who’s cousin’s sister-in-law had a premature baby. He weighed less than a pound, and now he’s-seven-feet-tall." This is meant to be comforting, but it is not considerate of all we and our children have gone through to earn discharge from the hospital.

These same people like to give advice on all kinds of issues they know nothing about:

- If you are experiencing the gut-wrenching strain of oral aversions or feeding problems, "Let him get good and hungry. I had a kid who wouldn’t eat, and it only took one missed meal to get him back to the table. No kid will ever starve to death."

- If you are growing concerned about your child’s complete lack of verbalization, as I was when Sophia was two, "I didn’t talk until I was four, and then I just started spouting Shakespeare."

What was useful was talking to a parent who had experienced the blow of a diagnosis , sought out resources, advocated with passion, and cheered every success, whether large or small. Preemie-L gave parents a voice, and it gave me a lifeline during a period of confusion and despair.

This is an important place for our stories to be heard, but, at first, an intimidating one. What did I have to offer in an environment that valued objective information? I was an anecdote, which placed me low on the scale of useful data, less than a statistic, and certainly lower than a measurable result. It took me a long while to see the value and power in the stories themselves, minus statistics and footnotes. It’s not that "narrative" knowledge is more valuable than "objective" knowledge, just that they can’t be read separately with any hope of gaining a true picture. Statistics are important, but their drone becomes something humans can understand and respond to when it becomes the solitary hum of one family’s story.

I’d still feel better if I could drop a meaningful statistic in here.

Our stories can give meaning and purpose to science. They can, potentially, change the standard of care for preemies. Without them as a reference point, medical professionals—no matter how parent-focused they are—cannot imagine what it is really like for a parent. Parent stories give them a chance to try on a painful experience and imagine themselves in it, which should always improve empathy and result in better care.

So it will take patience and encouragement to uncover the stories of underrepresented parents, whether dads or people of color. And in our rush to address the problem of inclusion, there may be a tendency to attempt to make each story representative of a whole group. The real picture is always more complicated. Although it is flattering to believe that one of us might capture the whole experience as it is for all parents like us, we know from participating in Preemie-L and other support groups that it isn’t possible. The nearest we can come to a complete picture is a bubbling soup into which we all throw ingredients.

We need more picture books. I wish every NICU kept a book of the preemies admitted to their unit, grouped by gestational age. Multiples could have their own special sections. It could contain photos, footprints, and the hand-written tales and outcomes of former Unit graduates written by parents for parents. This would be therapeutic for the those writing their stories and helpful to new parents looking for hope, reassurance, and reality.

We need more parent resource libraries.

We need more graduate parents visiting NICUs as presenters at seminars and panels—twice a year per hospital would be nice—with compulsory attendance of nurses, respiratory therapists, neonatologists, administrators, lactation consultants, and social workers. At least the mean one who need it.

We need honest magazine and newspaper articles, ones that paint a realistic portrait of life after the NICU.

We need more conferences like this one.

It is tempting to listen to other people’s stories as if they predict the outcomes of our own. Of course we glean hope from the many stories of preemies who have amazing outcomes. But our stories are neither predictions nor prophecies. None of our children have read the Preemie Handbook, either, and they are full of surprises.

Sometimes new parents want to hear that Sophia has had no issues, no glitches, and they’re disappointed and anxious when the answer is more complicated.

In truth, her story is more heartening than I can convey in a short summary, and even the difficulties have been part of that. This is a child who counters every delay with an unexpected gift. She makes me ache with fierce and unbearable tenderness. She has come a long, long way, and we’re at a hopeful spot.

One of the hardest parts of life after the NICU, has been waiting for the story to unfold. When we were sitting beside Sophia’s isolette, it was the not knowing that was so frightening. And I still want to know what our "outcome" will be—right now. I want assurances that major issues can be ruled out, that we’ve had the last of our surprises. But I have to wait. In the meantime, it is comforting to know that I am not alone.

Sophia is no longer a recent grad of the NICU. She is a grown up girl and the proud older sister of brother Sam. She who taught herself to read at four and can now read Laura Ingalls Wilder and A.A. Milne until all hours of the night. She likes me to transcribe the animal tales she makes up. She uses words like "particularly" and "quite." Two months from now, on October 30^th, she will be officially seven. (See, you never stop correcting for prematurity.) Seven years is an eternity in the world of preemie-dom.

She started mainstream kindergarten last fall, something that was unimaginable to us three years ago when we were enrolling her in special ed preschool. Her speech is lovely--articulate, even. In gross motor and fine motor tasks, she still lags, but she’s come so far, and I have great faith in her.

And when she sleeps I can still imagine her sprawled in her isolette.

In occupational therapy two years ago, Sophia worked hard at learning to ride a tricycle. Pedaling was unexpectedly complicated. It took a lot and strength and planning. She had to remember to push down with one foot, wait for the other pedal to rise, push down with the other foot. On top of that she had to simultaneously watch the road and steer. As I watched her struggle, I thought of my friends’ daughter who hopped on her new bike on her third birthday and raced down the sidewalk. My heart ached again for how hard Sophia had to work to achieve what might have been easy if not for the circumstances of her early birth.

Suddenly during an OT session, Sophia got the trike wheels to make a couple of rotations. She actually pedaled! The OT and I shouted our praise. For a "typical" child, this may have been no big deal, but for Sophia this was cause for celebration. Another goal achieved.

To encourage her (and to keep up the therapy), we visited a bike shop and allowed her to choose a shiny pink two-wheeler with training wheels. The practice sessions at home didn’t go very well. Staying upright, pedaling, and steering all had to happen together, and it was a workout for all of us.

One evening she and I had some time together, just the two of us. "We can do anything you’d like," I told her. "What sounds like fun?" She didn’t hesitate: "Riding my bike." She wanted to go around Lake Harriet, on the path I used to dream of pushing her in a stroller.

We had a wobbly start. The path was crowded. She was nervous, and the bike kept veering off the asphalt. I gripped the handlebar, and we hugged the edge. But after several blocks, I let go—and she stayed upright! Full of concentration and purpose, she pedaled. Her training wheels hummed.

What I’ve learned on Preemie-L is that it doesn’t matter much what hemisphere you live in; the experience of premature birth tends to cut along similar patterns. We may differ in the little things--whether we want to be called by our first name or by the title, "Mom" or "Dad" by our child’s caretakers, for instance. But when it comes to the big issues, we are often alike. And we want and seek the connection of shared experience.

Parents like us naturally and instinctively find each other where we most like to hang out. NICU reunions. Parent support groups. And conferences like this one.

When we meet for the first time, there is a flurry of swapped stats—How many weeks gestation? Weight (in grams)? What hospital? Pre-eclampsia or HELLP Syndrome? We compare generalities to get our bearings. Then we can settle down to the stories behind them.

I find it such an optimistic act—trading stories to give empathy and information to others—whether to a parent just coming into the NICU or one seeking support services from the public schools. Our stories carry the possibility of hope and help. Just months out of the hospital I realized that now I was the parent of an "older" preemie, with empathy to offer parents just dealing with the birth of their child. I, in turn, looked for wisdom from moms and dads of school-age children, people who knew the ins and outs of IEPs, methods of dealing with insurance companies, and how to get the most out of occupational therapy.

I haven’t tired of telling Sophia’s story; there may be some people who really wish I would. Though her early birth had the effect of an explosion in our lives, though it was harrowing and could easily have ended in tragedy, her story is dear to me. Seven years after it occurred, I begin to describe for you how I felt when I first looked through the isolette porthole and saw her inside, naked and covered with wires and tubes. In an instant, I am back in the hospital, and I’ve taken you there with me. We stand together in the unit for a moment, watchful and powerless.

I share this because you don’t have to try to imagine how it feels, you know the sensation of an overheated baby lying against your chest during kangaroo care…the smell of adhesive remover…the sound of a monitor alarming…the raspy sound of suctioning When I revisit these memories, I don’t have to go alone. Even after all this time, it is relief to have someone with me.

I am so honored to be part of this community of parents—among people who, even when their voices are quavering with emotion, seem so strong and wise.

Because of the fortifying power of your stories, I am strong enough to tell my own. They have turned me into a listener. My ear is tuned. We, the frugal and the sentimental, have collected them and stored them away like recycled cups.

So tell me a story. Tell me about the time you thought, "this can’t be happening." Tell me about the moment you realized that you were in the midst of a life-or-death battle. Tell me about the moment when you first held your baby and dared to touch your cheek to his head. Tell me your story.

There’s no handbook for this journey, but there are people who have gone before us. For advice and guidance, we have the invaluable skill and experience of excellent doctors, therapists, and educators.

But for the stories, we have each other.