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A big one and a little one

Right from the beginning, I felt like a celebrity.

People would see me waddling toward them and clear a path. Strangers would stare at my belly and say, "Oh my, that's going to be a big baby!" I'd smile and hold up my fingers in a peace sign and say, "Two. It's 2 babies."

What I thought of as the "twin people" emerged, people who seemed to be in love with the idea of twins. A man with a graying beard broke into a big smile and said, "Double blessings!" My sister admitted to me that she had 2 cribs, 2 layettes, 2 of everything in her attic waiting for the day she and her husband began their family. She was hoping for twins. And from my own grandmother: "I finally have my twins. It's the last thing I wanted in life."

My infamy grew when Avery was diagnosed. I became the mother of twins, one with Down syndrome. Statistically speaking, we were one in a million.

A NICU nurse told me, "Be happy there are 2. This one (she pointed to Bennett) will lead the way. This one (she pointed to Avery) will follow." At the time, the thought overwhelmed me. My babies were so tiny. They were wired to so many machines. That we would ever have any other life outside the hospital seemed to require more imagination than I could manage.

But soon enough, we were home. Our kitchen became command central with lists taped to the fridge: telephone numbers for the NICU and the neonatologist, the pediatrician and the pediatric surgeon, our local hospital and our family practice doctor, the lactation consultant and the early intervention specialist. The home health care company that provided the pulse-ox monitor and the flexible tubing and wires and tanks of oxygen that went with it.

And schedules: feeding times for baby A (Avery) and baby B (Bennett). A schedule for pumping. A calendar with big black Xes through the days. All this, and we still hadn't reached the babies' full-term due date, mostly forgotten in all the chaos, except for the big red star on the day in the calendar. Watching it approach made me feel melancholy for all the dreams and plans we'd left behind at the automatic revolving door of the hospital.

At first it was difficult to be grateful for 2. Two preemies. Two sets of health concerns. Two different schedules of doctor appointments. Two feeding schedules. Two meant that I never had enough arms for 3 children. Two meant I was constantly short. Two was too much.

We began early intervention services with Avery--he had a family resource specialist, and a physical therapist, and a speech therapist. I'd leave Bennett at home and would take just Avery to these appointments. He was a happy baby, a contented soul, easy compared to his twin brother, who seemed like a grouchy old man in a baby's body. Bennett was disappointed with everything, always fussing, as if saying, You woke me up for THIS? Avery took it easy on me, made my life with 2 a little less impossible.

Bennett grew full and long and lean. Avery grew also, but more slowly. I remember the doctor's appointment when Bennett, who had always been the smaller, more sickly baby, outweighed Avery. We'd been told to expect this. One of the more common characteristics of Down syndrome is a slower metabolism, and a smaller stature. I knew it would happen, but even as it was happening, I wasn't really prepared. I'd seen the karyotype, the map of squiggly lines that showed Avery's extra chromosome on paper, in black and white. And yet, it hadn't fully occurred to me, until the weigh-in when Bennett jumped ahead, that Avery's path would be different.

The extra chromosome manifests itself in other ways, little, surprising things, such as: all of my boys have the same color hair, which is like mine, only Avery's isn't curly. His skin is softer. He has the same, distinctive big toe as his brothers and his father, but his feet are much smaller, and flat. His eyes are blue like the rest of us, but he has little white flecks in the irises that sparkle in the sunlight.

At age 4, Avery retains his toddler Buddha belly, while Bennett 's body has stretched out, not a toddler shape anymore but that of a boy. One thing has remained the same--Bennett needs to know were Avery is at all times. "Where's A.E.?" he asks, whenever Avery is out of sight. They sleep together, as they always have. Sometimes Bennett climbs into bed with Avery and I find them like this, a tangle of arms and legs that I don't dare separate, for fear of disturbing the peace.

Now, when I mention the boys are twins, people look at me as if I've lost my mind. "Twins? You mean the big one, and the little one?" Yes. The big one and the little one. Twins. It's gotten to the point that I avoid bringing it up, so that I don't have to explain.

When we first saw the twins on the ultrasound screen, from that initial moment, Tom and I had hoped they would be different. We'd wanted them to have their own personalities, and they do. As unique as night and day. Oil and water. Salt and sugar. And yet, what we'd wished for now makes me sad--it means that this special twin bond of theirs is mostly a secret, mostly invisible.

But I can see it. It's in the way Bennett leads and Avery follows, just as the NICU nurse predicted. Bennett walked first, then held Avery's hand while Avery learned. Bennett talked first, then taught Avery to make sounds too. Bennett runs and skips and jumps; Avery tries to do these things because his brother can. They are a part of each other, just as all of my children are a part of me. And I can see now that 2 is not too many--it's just enough.

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