Nearly 5 years ago, I found myself at a wedding in a city far from my home, away from my 3-month-old twins who'd been born prematurely, and had recently been released from the NICU.

The fact that I would leave my family at such a time to travel to this wedding says a lot about the couple being married that day: I'd known the bride since girlhood and felt as close to her as if she were a sister.

Being mom to 3 children was still new to me, then; people would ask if I had kids and I'd answer, "Yes, a 4-year-old," and then hastily add, "And twins! The babies are 3 months."

Only sometimes did I say that my son Avery had Down syndrome. I didn't have the words figured out, yet. I didn't know how to manage my reactions as well as the reactions of others. Even the terms were problematic: sometimes I'd say "Down syndrome," sometimes I preferred "Trisomy 21," which sounded (to me) more scientific and was less likely to elicit stereotypes.

Too, I sometimes said too much. I'd go into great detail about all of it--my water breaking at dawn (what a lovely image!) and the premature delivery and Avery's diagnosis, on and on, until I was exhausted and so was my poor conversation partner, whom I'm sure was regretting the one simple question that unlocked Pandora's box.

My middle son Avery is sitting too close to the television, which is an old fight and not one I'm particularly interested in revisiting at the moment. Like most of America, we've watched the dazzling opening ceremonies of the Olympics in Beijing and we're hooked. I'm rooting for the moms: weightlifter Melanie Roach whose son has autism, and gymnast Oksana Chusovitina, who moved to Germany for her son's oncology treatments.

Avery has 2 favorite events: swimming and gymnastics. When the athletes line up across the pool, he counts, "One, two, three," and then says and signs the word "Go!" The sign for go is thumbs up, index fingers pointing forward, like a starter's gun going off.

If Avery's countdown matches the actual one, and the swimmers dive on his "Go!" he brings his hands to his face and covers it, shy, giggling, and extra-pleased with himself. Avery is 5-years-old. He's my middle son, a fraternal twin, and he has Down syndrome.

Having Down syndrome means, in this instance, that the gymnastics events of the Olympics are one place where he can watch other people who are as flexible as he is. He rolls around our carpet and spreads his legs into splits, or folds himself in half, pulling his feet up to his ears. For good measure, he flips back over and kicks his leg up into the air, so that his toes are almost touching the top of his head.

And when he's finished, he jumps to standing and raises his hands in the air, like the Olympians he sees on television. He waves to the crowd (usually me) then struts off into the kitchen, which is my cue to burst into applause. He returns, shy and giggling again, and dives into my lap for a hug.

Avery is healthy and has had excellent medical care since his birth. As his family, we've received help in the form of physical therapy and speech therapy and connections through our local child development center. We've been able to meet and enjoy other families who live with Down syndrome at annual events, like the upcoming Buddy Walks, which usually take place in the fall and are organized by the more than 275 affiliates across the country. All these things are a normal and natural part of living with disability in the United States; but these rights are not available everywhere in the world.

Before Avery came into my life, like most people, I was aware of another Olympics, a different one, a special one. But it wasn't until I was watching the Beijing Olympics with Avery that I began to understand their importance. The Special Olympics is an international, nonprofit organization dedicated to improving the life of children and adults with intellectual disabilities, by encouraging them to become physically fit through sports training and competition.

And with more than 500,000 athletes from China, more than 210,000 in India, nearly 550,000 in the United States, 600 in Afghanistan and 4,400 in Rwanda, the Special Olympics is more than a sports organization for people with intellectual disabilities--it's a powerful force for social change.

Before this year, my favorite part of the Olympics used to be the medals ceremonies. I loved the athletes for their single-minded pursuit of excellence; when they'd lower their heads ever-so-slightly to receive the medals around their necks, tears always came to my own eyes. To me, the athletes represented perfection, or at least, the human endeavor to obtain it.

But now, watching the Olympics in Beijing this year, with Avery twirling and spinning across our carpet to the music of the floor exercises, or seeing his delight and excitement when the swimmers kick and splash their way to the final lap, I can't help but think that I've been missing the point.

I recalled the opening ceremony--the thousands of athletes marching proudly around the venue. I remembered an announcer commented that most of the participants will not receive medals; that in fact, many countries have never received any medals. And yet they were there, part of it, their dreams shining as brightly as anyone's.

They remind me of Avery, and the extra hours of hard work it took him to learn to walk. Or the amazing concentration it takes for him to speak the word "Go." Or the truly remarkable resilience of the human spirit. It's not the medal that matters to me, anymore. It's where you start, and how you finish, and what you make of the journey in between.

A remarkable thing happened, here in our little valley where nothing much seems to be going on most days, where the grasses have grown tall and the seed-heads keep them heavy and nodding, sleepy, especially in the late afternoons.

By then, the hot summer sun has slipped behind the ridge in back of the house; then, the light filters through the cottonwoods along the little creek and the sounds of the day seem to quiet, distilling to the essence of summer. The wind in the leaves, the occasional cry of a hawk, the faintest trickling of water from the spring.

A mood of tranquility, a spell of summer, until it's broken by the cries of my kids, "Mom! Mom! Mom! Come quick!"

I rush out the front gate, where I'm met by 3 out-of-breath boys. Carter, the oldest, holds in his right hand a butterfly net with a plastic orange handle. His left hand is squeezing the net closed. It's clear they've caught something and I peer through the mesh to see what it might be.

It's a frog.

Their excitement is contagious and my heart begins to race, too. I can't remember the last time I've seen such a thing, maybe never? My girlhood wasn't overly-full of frogs. I think about what a frog might need: a home, some food, rocks, water? Don't they eat flies?

I rush into the house and return with an empty plastic container, the kind that once held an enormous amount of lettuce. We poke holes in the top with a stick and Carter deposits the frog into the new, temporary home.

We form a semi-circle around the plastic container, regarding its contents. Even as we watch him (and I don't know why I think it's a him), he's watching back, 2 deep, brown froggy eyes trained on us.

He's not really green; he's more brown, but whitish underneath. There are large, black spots ringed with black circles on either side of his spine. His legs are thick with muscles and his toes are long and slender. He seems big to me, the size of my fist, or larger.

He tries to hop and the whole plastic container jumps with him. We all leap back. My middle son Avery raises his hands to his face, his mouth forming a wide, startled, Oh! And I have to agree: Oh!

It's amazing, to me, all of it: that we'd be here, the 4 of us, on this airy summer day; that Carter, who I remember so clearly as a tiny baby, has grown into this brave and confident frog-catcher of a boy; that his brothers are next to him, the babies I'd waited for and hoped for and even still, when they finally arrived, I was totally unprepared.

I remember everything--the days spent in and out of the NICU and my one wish, an unspoken prayer that was so simple, yet it seemed impossible: Please let my babies know this world. Please let them grow big enough to have a life outside this hospital air, these beeping machines. Please let them breath real air, let them feel the softness of a purple summer twilight.

Never once did I imagine we'd be here: it was a dream too big to hope for. And since then, there have been so many summer twilights, and I am greedy for them, my prayer now is like a child bumping 2 fists together, which is sign language for more. I want more--I want these days to last forever.

And the frog. Sometime back in the spring, when I was making scrambled eggs one morning, or buttering toast, he was there in the creek. When I fed the wood stove against the cold and the little boys practiced letters and numbers, he was there. When I swept the floor, or loaded the washing machine, or tucked the boys into bed, all the while he was there.

As my boys grew so did this frog, near us, touched by the light from the windows in the evenings, or the rumble of the Red Flyer wagon as we pulled it past the creek. Sharing the same sunshine when the spring turned to summer, and witnessing the same thunderstorms playing across the sky. And I'm reminded of how all things are connected. How even when we sometimes can't see it, wonders exist right outside the front door.

This was just after the twins were born and we'd gotten home from the NICU: the phone rang and my husband Tom took the call. A few minutes later, he hung up. There was a dazed expression on his face.

"That was the pediatric cardiologist," Tom said. "He called to tell us the good news. We won't be taking a life flight to Seattle for emergency heart surgery. " He paused, letting the words hang in the air around us. "I didn't know," he said finally, "that such a thing was even a possibility."

I hadn't realized it, either. But there were so many things I was just beginning to understand, then. I thought back to my many ultrasounds with Tally, whose name always made me smile (each week she took a tally of our babies!) and the numerous, grainy black-and-white images of Bennett, the small bones in his back like a tiny string of pearls; or of Avery who, more often than not, was sucking his thumb.

Each measurement--of the bones in each baby's leg, or the width of each head, or the blood pumping through four chambers of each heart, was met with, "Everything looks fine," and despite what eventually followed--the twins' premature delivery and 5 days later, Avery's diagnosis of Down syndrome--I still had faith in those words. Why would anything be wrong with Avery's heart?

As it happens, babies with Down syndrome are 40-50% more likely to be born with a heart defect: some of the conditions are minor, and can be addressed with medication, but others require surgery. Hence, our cardiologist's comment to Tom, which was indeed, good news.

Since that time, I've learned even more things about being mother to a child with Down syndrome. I've learned that one of the more common problems in babies with Down syndrome is called atrioventricular septal defect (AVSD), sometimes called AV canal, a condition that affects the walls between the two upper chambers and the two lower chambers of the heart.

Which is how I came to have, in my hands, a white manila envelope from the Kennedy Krieger Institute, an internationally recognized facility dedicated to improving the lives of children and adolescents with disabilities. And though the institute is located in Baltimore, MD, and we're in Montana, I've agreed to participate in a collaborative research effort designed to help identify genetic and environmental factors related to congenital heart disease in Down syndrome.

My role in this study is minimal: since we don't have any heart issues, we'll be part of the comparison group. I need to fill out a medical questionnaire, and sign some release forms. I need to supply the team with a copy of Avery's karyotype, which is a profile of a person's chromosomes. In Avery's case, it shows 3 genes at the 21st chromosome instead of the usual 2, and was how we confirmed the diagnosis. And the researchers need a copy of the echocardiogram, the one that the cardiologist telephoned Tom about.

In a few weeks, I'll participate in a telephone interview too, answering questions about my medical history and my pregnancies. And Avery will donate 1/5 teaspoon of blood for DNA analysis--this will be, in fact, the most difficult part. Avery has his blood tested every year for TSH and T-4 Thyroid function, and we'll get the sample then. In the beginning, he'd approach these blood draws with his usual cheerfulness and good will, smiling at the nurses and even flirting a bit. It's happened often enough that now, just the sight of the medical clinic sets his chin to quivering, big teardrops already forming in the corners of his dark blue eyes.

Why would I consider such a thing? Before becoming Avery's mom, I probably wouldn't have. The world to me, then, seemed like something "out there" that was mostly none of our business. But having Avery made everything personal--the families in the NICU with us, the children we know at the CDC, the babies with heart surgeries, they are close to me, now. I'd once thought that having a child with a visible disability would isolate my family--but instead, most times, I've found the opposite to be true. Avery brings people together.

It's a small thing, our participation in the Kennedy Krieger Institute research, but it's what we can do.

When the twins were still babies, I used to sit with them in the rocking chair. I'd arrange them like the nurses in the NICU showed me, one in each arm, heads on my chest. The rhythm of the rocking chair reminded me of a heart beat, too--bump-bump. Bump-bump. And I'd feel it, then, our connectedness, all of our hearts beating as one.

For more information on the Kennedy Krieger Institute study contact Charnan Koller.

I have a memory from when the twins were about 2-years-old--I was past the intense worry of any relapse that would send us back to the NICU, and I'd finished reading everything I could find about Down syndrome. I began to poke my head up and look about and wonder, What are other families with kids with Down syndrome like? It was this curiosity that brought me to my first special needs play date at our local Child Development Center.

I remember rushing out the door, after spending too much time looking for an inexplicably missing shoe. I remember feeling nervous at the thought of meeting new people, especially other moms. Several times, I nearly turned the car around and headed home. Even in the parking lot, when I could see that a small circle of women had already gathered, I was overcome with doubt, thinking, Why did I agree to do this? and then telling myself, "It's for the kids; it's for Avery." But of course, it didn't turn out that way.

All these thoughts were familiar, and reminded me of my very first play group with my oldest son Carter. Both times, there was a wicker laundry basket in the middle of the room, filled with board books and stuffed animals and a Little People Yellow School Bus and bright Duplo blocks and a Lights and Sounds Shape Sorter. Nearby, there was an assortment of cookies and juice boxes. A mountain of shoes and jackets were piled in a corner, next to a stack of empty baby carriers and a line of parked strollers.

Other things were familiar: introductions, including the names of the children. The questions: "How many kids do you have? and "How old is your baby?" and "Where did you deliver?" Later, mostly told quietly, birth stories.

But these birth stories included a part about getting a diagnosis. Sometimes they were sad; other times they told of great relief in having an answer. The stories often referenced medical terms, and things like monitors and IV lines and extended hospital stays, even surgeries on tiny newborns.

The conversations covered practical matters, like PT, OT, ST. SSI, SSA, Early Intervention. Low tone versus high tone. Ear tubes, vitamin therapy. Dry skin, thyroid tests. And theoretical matters, too, like how prenatal diagnosis impacts the rights of the unborn, or how sibling relationships are affected by disability, or how various cultures view children and adults with visible differences.

The same, in both groups: mother guilt ("Am I doing enough?"); striving for balance ("Sometimes I feel overwhelmed."); and love ("I can't imagine my life without my child.") Both times, the hours passed too quickly, resulting in a mad dash to match shoes to feet, coats to kids until everyone was headed out the door, back to real life.

What I've come to realize is no less true for its obviousness: the play groups are as much for the moms as they are for the kids. It's a place where women can meet, if only briefly, with other moms who might share similar experiences--who might come to their mothering with common reference points.

Increasingly, I've been finding those shared experiences by connecting with other mothers online. Our words are what defines us; I'm drawn to the woman whose son might have a different diagnosis than mine, but her outlook on parenting feels like my own. Or a family halfway across the world, living in Australia--but they, too, have one older sibling and a set of twins, one with Down syndrome, one without. Sharing our stories--across the miles, across time--enables me to see our connectedness, our common bonds as families.

In the spirit of sharing, here are two sites that I love: Can I Sit With You? is an ongoing book and blog project that explores "The Stormy Social Seas of the Schoolyard." It's a collaborative effort fueled by donations of time and talent, and all proceeds are used to fund a local Special Needs PTA.

And identical twin sisters Janice and Susan, founders of 5 Minutes for Mom, recently launched 5 Minutes for Special Needs, edited by Tammy, who writes about her experiences mothering a medically fragile boy with Down syndrome at Praying for Parker. It's a group blog where parents of kids with special needs can find "support, insight, and inspiration."

What I've found, in all these instances--online and in person--is the value in telling our stories, to each other and because of each other. There we find strength, we find solace, we find commonalities. But mostly, we find ourselves.

Here's one thing you might not know about my son Avery: before each meal, he insists that we all say grace.

In our family, that means we join hands and say a little prayer, a simple rhyme for babies and small children that goes like this, "God is great, God is good, let us thank him for our food. Amen." When it comes to the end, Avery says "Amen" with such gleeful delight that he's nearly shouting; it sounds more like we're doing a team cheer than giving the food a blessing.

It doesn't matter to Avery where we are--we could be in a restaurant with servers in crisp white shirts and every time you take a sip of water, a busboy appears to refill it for you; or we could be seated beneath a picnic umbrella in the food court of the Costco, eating our hot dogs and soda (with 1 free refill) for a dollar fifty. Either way, Avery will not begin eating until we've joined hands and said grace.

Certainly, this burst of piety isn't something I expected when I learned Avery had Down syndrome. I don't know what I expected, really--my friend Kathy and I were recently talking about it. She's mom to a son with Down syndrome too, and we each had different, albeit wrong, ideas about what being the mom to a special needs child would mean to us. She felt, in part, that it would require her to assume some sort of mantle of "specialness." I thought (and I have no idea why I believed this) that I would need to begin driving a van. A white one.

None of these things have proven true, of course. Being Avery's mom doesn't make me feel any more, or less, special than being a mom to my other kids does. And Avery hasn't needed any extra adaptive equipment (other than the usual things, like when he was littler, a stroller, or now, a car seat) so there's no need for my white van.

What has proven true is that mothering Avery has brought people into my life that I might not have known, otherwise. Therapists, of course, and doctors and nurses. And other parents of children with Down syndrome, and parents of kids with CP and autism and Asperger's. Children who are learning Braille, or sign language. Children who simply don't fit the norm, for any number of reasons.

Sometimes people liken being the parent of a special needs child to having taken a detour in life--like finding yourself in Holland, for example, when you'd made reservations for a trip to Italy. I know this analogy works for some families, but not for others. I've come to understand that the one-size-fits-all approach is not a good model for human beings.

I like saying grace before every meal. I like that Avery reminds us to do it, that he requires us to slow down 3 times a day for a moment of gratitude. Because of him, we hold hands, and are thankful.

I feel that way about my fellow special needs parents. I don't know if you consider yourself in Holland or not, but wherever we are, whenever I poke my head up and look around, I realize I really like my fellow travelers. Parents who can talk PT or ST or OT, parents who know about g-tubes and canulas and oxygen tanks tucked in the corners of rooms. Moms and Dads who know infant CPR and how to insert a trach and what to do if a child turns blue.

We know all these things and we also play Peek-a-Boo and sing "Ring Around the Rosie" and count tiny toes with "This Little Piggy." We marvel at low-tone babies learning to sit up, or at the intricacies of a child decoding the pattern of raised dots in a line of Braille.

There are many things I didn't know about being Avery's mom, in the beginning. But I'm learning, from him, and from all of you. And I wish for us a safe journey to wherever we're headed--may we find our paths filled with lots of grace, and always, traveling mercies.

The man at the library, walking with 2 canes, drags his thin, weak legs behind him up to the water fountain, and one of my boys asks, "What's wrong with him?"

I lift my finger to my mouth in the universal sign for "shhhh." All 3 of my children look at me, confused. They don't understand why I don't want to talk about it--we usually talk about everything, a running dialog on the state of the day, like watching a DVD with the comments turned on, the director and the writers and the actors all adding in their 2 cents.

Just today, we'd discussed why grass is green (and a word that begins with P and sounds like "eff", photosynthesis!) and the new, Harry Potter-esque mural painted on the library wall ("Creepy!" said 5-year-old Bennett; "Cool!" said 9-year-old Carter), so my reluctance to talk about the man using canes stood out simply because of its difference.

Just like the man, himself. And the thing is, I don't know why I was reluctant to talk about it.

Here is a man with a story to tell. One he may, or may not feel like discussing at the water fountain with me and 3 little boys of varying ages and abilities. But how he talks about his life, and how he feels about it, is something I'll never know. I won't know because I didn't have the right words to use to ask.

I've written before about wishing there were a secret handshake for people who love children and adults with Down syndrome. A way of recognizing each other in a crowd--a way of saying hello, without actually having to speak. I'm thinking here of motorcyclists flashing their headlights as they pass each other; a little gesture that announces, I see you.

My son Avery's speech therapist, Molly, would be proud of me for these thoughts. Very early into our sessions, she began trying to explain the concept of Total Communication. What she taught me was that language is only one of the tools we use to communicate with each other. There's also how you say the words--the tone you use, its timbre and pitch. And there's what you choose not to say, which often speaks volumes.

You might be tempted, as I was, to think of the '80s concept of body language, and if you're recalling those cheesy come-on lines ("I can tell by the flip of your hair that you're into me...") you wouldn't be too far off. So Molly worked at teaching me to see the complexities in everyday speech and language; and I worked at breaking down those sequences into their smallest parts, to better teach Avery.

As it happens, even the smallest parts of communication are complicated. Take, for instance, a smile: is it happy, or sneaky? Is it smiling-through-the-tears, or shy? Malicious? Or simply joyful?

Which brings me back to the man at the water fountain in the library--sometimes communicating with each other can be a very tricky endeavor. Later, after the kids and I had left the library and everyone was buckled in the car, I tried to explain, and failed miserably.

I began with a story about a man with one blue finger, and I tried to show how his finger was normal to him; something he may, or may not want to talk about. He might want to have a little discussion about it, or he might want to go about his day, drinking a cool arc of water from the fountain.

And then I realized that my story, and my reaction to the man, was based on the assumption that he would feel bad about his legs, and not want to have attention drawn to them. I don't know this to be true. And I don't know if not talking about disability is any better than talking about it.

When people ask me about Avery, most of the time I'm happy to share what I know about Down syndrome. I'd rather people hear it from us, than make assumptions. I see it as a chance to encourage right-thinking, as opposed to wrong-thinking.

But what is right-thinking, in this case? I suspect the answer is as varied as the 50 million Americans living with disability. In this instance, I take my cues from Total Communication--the man kept his back to us, his eyes down. He didn't engage the boys or me in any way; he seemed busy and intent, a person not interested in casual conversation. And therein lies the key: seeing the person as well as the disability. It's what I wish for Avery--and what I wish for us all.

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"You look like a flag," my husband Tom tells me and I smile, because I know what he means. We go through this every summer in the days leading up to the 4th of July. It's a bit ridiculous, I know: cheesy and sentimental and a little over-the-top. But I can't help it.

I dress myself in red, white and blue.

It's my summer compulsion--just as surely as the days become progressively warmer, the color red pushes its way toward the front of my closet. Combine it with the already-busy whites plus the blue of my trusty jeans, and you've got the makings of an American flag.

Tiny white stars on a red background begin to appeal to me this time of year; alternating stripes of blue on a white background (or is it white on a blue background?) look lovely. And for this brief time at the beginning of July, I see red, white and blue everywhere: red flip-flops, red bandannas, ripe, red strawberries in the grocery store. Blue skies, blue jeans, plump blueberries the size of marbles. White puffy clouds, white petunias, white whipped cream. You know where this is heading, right? A resplendent vanilla flag-cake in the fridge, which is a whole new level of flaginess--not only am I wearing it, but I'm eating it, too.

I usually work in the mornings when the house is quiet, before the rush and hum of our lives takes over the day, like so many parents everywhere--trying to carve out a few extra moments; trying to keep my hand on the slim thread of my life before there were kids, and peanut butter toast and jam-faces to wipe and milk to pour and now, a puppy to feed and walk, too.

But lately, in these quiet, early mornings, I've had company. My middle son Avery wakes to my softest footfalls, and climbs out of bed just one step behind me. I can hear the door to the boys' room open (Avery is careful not to wake anyone else) and the thump of his tiny bottom as he slides down the stairs. Soon enough he's in my lap, head tucked beneath my chin. He doesn't ask for anything; he doesn't try to stop me. He simply sits in the cup of my lap and falls back asleep, while my fingers plink away at the keyboard on the desk.

This is not what I expected, when I learned I'd be a mom to a child with special needs. It's nothing I could have predicted, based on the books I read or the information we got from the hospital. Back when I was a new mom to Avery, I was hungry for stories about moms of kids like mine. I wanted to be able to imagine our future, but all I could come up with was sadness and adult diapers. I needed help.

One mom writing about her life with her son with Down syndrome is Emily Perl Kingsley. In her widely-read essay, "Welcome to Holland," she uses a travel metaphor to explain her new, unexpected life: she'd been planning to go to Italy like everyone else, but the itinerary changed. Her destination was a different place--not better, not worse, just different. Hers would be a trip to Holland.

"Welcome to Holland" came to me via one of the nurses in the NICU. It was a battered, graying photocopy. Someone had taken the time to add a picture of tulips across the top, and at the end there was a little string of stylized Dutch windmills, more than a dozen marching across the bottom of the page.

At the time, I wasn't sure what to make of such a thing. That the woman writing the essay (Emily) had a perspective to share was clear; whether I would come to agree with it, was not. That the person who created the photocopy wanted to help women like me, mothers trying to find their way, was also clear; how these worn, aged pages would aid me, was not.

This is what happened: I began seeing references to Holland everywhere. All the nurses in the NICU wore a particular brand of shoes--they were clogs. There was, improbably, a reconstructed Dutch windmill just off the highway I traveled each day to and from the hospital. And the farmland windmills dotting the wide, open grasslands (which had always looked to me like symbols of the American prairie) made me think of the windmills of Holland. They, in turn, made me think of a simple children's toy--pinwheels. How could I not have seen all this before?

And the same became true of Down syndrome. I began seeing it everywhere--a lady waiting to cross the street on the corner; a young man pushing a grocery cart with his mother; a baby with a tall shock of brown hair; on television, in the news, in the New York Times.

I've been Avery's mama for 5 years already, and it's not just Holland I see. These days, I'm more likely to notice the man walking with the limp; or the young woman with rigidity in her muscles; or the child overwhelmed by sounds. The causes for such things, or the names for them, are not important to me--what I see is the man, the woman, the child. I see what's different, but I also see what we share.

Even still, I'm sometimes caught off-guard. We live in a 70-year-old log home; its walls are covered with layers of dusty wallpaper that peels from the ceiling in long strips. Each weekend, we tackle another room--scraping, sanding, priming, painting. In the kitchen, beneath the fake-brick wallpaper and the magenta paisley paper, we uncover a pastoral scene: horses, riders, trees, a lake. And at the water's edge? A Dutch windmill, of course, just like the ones on my photocopy.

I hope I would have discovered this way of being in the world on my own, but in truth, I think it's something I owe to becoming Avery's mama. And the thing is, I'm grateful for it. I like my eyes that see. Call it whatever you please--Italy, Holland. I like it here, and I don't want to go back.

My 5-year-old son Avery is a master of the bait-and-switch.

This is what I mean: if we're working on his words, and I say, "Cracker," he'll say, "Dadah," and I'll say, "Try again, cr...cr...cr...cracker" in my loud, clear, speech-therapy voice, and he'll say, "Yummy!" or he'll sign eat (and laugh) or even, he'll reach in and kiss me.

When we're reading, I'll ask him to think about the letters we see, about the phonics and the text, and he'll point to the pictures instead, and smile his sweet little smile, and tell me (in all earnestness) about the tiny gold bug sitting in the corner of the picture, or about the little lost mitten, and how mittens are for when its cold. "Brrr..." he'll say, and pretend to shiver. "Cold!"

And eating. He's the best of my 3 boys at pushing food around his plate. He'll sign all done, and when I ask him if he's eaten one bite of everything, he'll crinkle his elfin eyes and say, "Yes!" But when I look at his plate, I can see that his 7 beans are still 7 intact beans; only now, several of them are hiding beneath an uneaten piece of bread.

If all else fails, his go-to move is pitching a little fit. He'll throw himself to the ground, fold in half like a pocket knife (he's very flexible), and with his head in his lap, he'll cry great crocodile tears, "Wah wah wah," only every now and then he'll peek to see if anyone is watching.

Avery is my middle son. He has dark blue eyes. His hair is the color of sunlight. His bangs hang down across his forehead and his hair curls a bit at the back of his neck. His skin is so soft. More than my other children, Avery has held on to his babyhood.

He has tiny feet and small hands. Chubby fingers, still, and his soft hair reminds me of a baby. He's the only one who can still fit in my lap. He climbs up and tucks his head into my neck, resting between my chest and my chin, a perfect fit.

He's really pulling out all the stops.

The 2 little boys, Avery and Bennett, sit at the kitchen table and Tom is there and big brother Carter, too, and we are the perfect birthday scene: me carrying the homemade layer cake on a big white plate across the kitchen, everyone singing the "Happy Birthday" song. It's like a picture from a dream I had a long time ago, only it's real.

Of course, the day involved the usual mishaps. I'd briefly wondered if I should make 2 cakes, one for each boy, but quickly dismissed the idea when I realized I only had enough flour for one cake, whole wheat at that. And then there was the birthday candles gone missing, which we solved by lighting long, thin tapers in two silver candlesticks. And the fact that everyone had sniffles and what appeared to be the beginnings of a summer cold.

All of these things, blessedly ordinary.

When it was time to blow out the candles, each boy staring intently at his flame, concentrating on making the perfect wish, I wanted to make one, too, a wish and a prayer--a thank you, sent up to the heavens on the curling smoke of the twins' birthday candles.

Five years ago, it was a sunny June Sunday, an azure-blue day, a lemon-yellow day, only the babies were too small and I was whisked away in the back of an ambulance to a far-off hospital that would become the babies' first home. Days stacked up, dozens of them, and only on occasion, when I was feeling especially brave and hopeful, would I allow myself a dream like the one at my kitchen table. A day of songs and cakes and misplaced birthday candles--ordinary sniffles, the common cold and nothing else. A regular life.

Five days after the ambulance ride and the early delivery, our pediatrician touched her hand to my sleeve and said, in the nicest possible way, "Avery has Down syndrome." I didn't know what those words meant, then, and I repeated them to her, and myself, and anyone who would listen--a question and its own answer: "Avery has Down syndrome? Avery has Down syndrome."

Shortly after, it was Father's Day. Another June Sunday, this one meant to celebrate fatherhood and children and family, only that year, it felt like a cruel joke. The dream of the birthday cake and twin candles was one we only sometimes believed--there was, then, the possibility of an equally real scenario that involved another kind of day, one of grief and loss.

Five years ago and five days. Life and death, love and loss, twinned together. And fathers to celebrate. Tom's parents were helping out and we all--Tom and I, his folks, and our 4-year-old son Carter--made the trip to the NICU to see the babies that Father's Day. After, we ate at a steakhouse where they served us a giant fried onion, open like a flower, blooming in the middle of us.

What I remember most about that time is kindness washing over me like rain; kindness tucking in around me like a blanket. Strangers stopped me to tell me of another family they knew with a baby in the NICU, or with a child with Down syndrome. Books carefully placed in the black nylon pocket of the breast pump, or on top of my pile of paperwork. Words, too, like "I'm proud of you" and "I love you."

And the kindest of all was Tom with his gentle steadiness, his constant presence. Packing up the plastic baggies of milk for the babies; cooking grilled cheese sandwiches for Carter, pickle on the side, slicing the pickle into long spears, so no one would choke. Washing dishes, picking up the house, stuffing dirty clothes into the machine and dumping the powdered soap on top. All this without being asked, or asking anything in return.

We went out to eat that Father's Day five years ago because it seemed like the right thing to do. Tom said he didn't want to remember it as the day we didn't celebrate--the one year in a long string of years remarkable for what didn't happen. So we went--part bravado, part stubbornness, part desperation, part hope--which is the worst combination for digesting a rich meal. I don't think anyone ate very much.

And now we are 5. Many of the details of those early beginnings have already grown dim; what remains is vivid and bright. I see the love of a father for his grown son. I see the love of another father for his small children--a fragile situation, a precarious time, but his love is real and strong and steady. And I see that onion, unlikely flower, blooming anyway--a sign of things to come.

My son Bennett, who is 4-years-old-going on 5, has a habit of saying, "It's a miracle!" Sometimes he says it of things that, to me, don't seem particularly miraculous, like when we find the missing rain boot, or when the VCR finishes rewinding, or when the waffle pops out of the toaster.

But other times, I'm bound to agree: watching the first green buds on the lilac bush grow into leaves and flowers; lying in the grass noticing the clouds move across the sky; stumbling upon three small blue eggs in the perfect circle of a nest hidden in the tall grass.

Bennett's twin brother, Avery, copies him and echos, "Mir-mur." Avery is two minutes older than Bennett, but you'd never guess it by looking at them, because Avery has Down syndrome.

I've been Avery's mama for nearly 5 years now, and mostly, it feels normal and ordinary to me. So when we recently met a new family, and the woman emailed me and invited us to lunch, I didn't think much of it. I wrote back and asked, "What time, and what can I bring?" She replied, and at the end of an otherwise ordinary exchange, she asked, in the nicest possible way, how she should prepare her children for Avery. What should she do? What should she say?

And there it was--a tiny stab to my heart. Why would she ask such a thing? I wondered. She'd already met Avery; couldn't she see he was just a child--no more, no less?

Being Avery's mom is a little bit like being the mom of a low-level rock star, or a minor sitcom celebrity. People have often heard something about Down syndrome, but it's not always helpful, or true--one mother I know was asked if her child spit and was a biter; I was told Avery probably only ate candy. People sometimes think our kids are always happy, or that they're angels. (One mother I know was told her child was the Bodhisattva.)

The new woman's email didn't say any of these things, of course. But I began wondering what she knew, and didn't know about Down syndrome; what she might be expecting of Avery, or me. The more I thought, the more anxious I got.

I remember feeling a similar mama-apprehension years ago, when I my oldest son Carter was a baby. I packed him into his infant carrier and pulled on my fourth-trimester jeans and my best shirt. I brushed my hair and swished mouthwash and put on lip gloss and mascara. It felt as if I were getting ready for a first date.

I can laugh about it now--those first playgroup women have been friends for years, and we joke about how we used to park all the babies in the middle of the living room like circling a wagon train, and how they would all stay there, and sometimes even sleep, which is so much easier than chasing them through a playground, or coaxing them off the highest level in the play-land, or running as fast as you can after a tiny person who has just figured out how to pump the pedals on a bike.

I write the new woman back and thank her for her questions. I tell her that the best answer is to treat Avery like any other child. I explain that he has no dietary issues or physical restrictions, and that there's nothing especially different about him, other than he's smaller than children his age (most kids just assume he's younger) and he's still learning his words, again, like a littler kid.

I tell her that Avery knows sign language (ASL), all my boys do, and that sometimes Avery signs and kids don't know what he's saying, but he's patient, and he'll keep trying until someone asks, What's Avery saying?, which is like a little game we all play (even me!) until we eventually get it figured out.

I add that in my experience, the littler children know there is something different about Avery, but they don't give it much thought. They see he likes to play, and laugh, and do kid-things, and that's good enough for them. Sometimes older kids have questions like, "What's wrong with him?" and I say, "Nothing, he just goes at a slower speed than most other kids," or "Is it contagious?" which it's not. Often, one or two children will form a close attachment to Avery and will speak for him and help him and care for him, which is always very sweet, but not necessary, though Avery loves it.

I finish the email and hit send. I hope I've been clear, but not pushy; friendly, open-hearted. Which is what I hope this other woman is trying to be, too. It's all very confusing, just like it was in the early days, when we circled the wagons--each of us trying to find common ground, for ourselves, and for the sake of our kids.

A few hours later, a reply arrives. She says they can't wait to meet Avery. Their family has been studying ASL and they're excited to have the chance to use it. I feel like Bennett: It's a miracle! The day is full of them, big and small.

If today were a book it would be Alexander and the Terrible, Horrible, No Good, Very Bad Day.

I woke to a puddle of puppy pee waiting by the back door. Bailey, the guilty party, doesn't like to be out in the rain, and it's been raining rainy-rain for 3 days straight, now it's number 4 and the forecast is for more "precipitation," which why don't they just go ahead and call it what it is: the crazy-making, stuck-indoors weather that causes the puppy to whine and the kids to throw Lego's at each other.

Inside, everywhere I turn there are projects to finish and work that needs to be done. It's beginning to feel to me like a silent reproach. If I could work faster, be better, be more; if I didn't need sleep or those pesky things like baths and teeth-brushing, I'd have it all done by now! The final straw: I slammed the hinky door shut (which is the only way it will close when it rains) and I smashed the tip of my thumb in the door jam.

The rains have brought more than precipitation--they've brought the gray cloud of unhappiness, and it's settled in around all of us. I see it in my children--the petty fights ("Mommm! He LOOKED at me!") and the weepiness ("No goldfish crackers? Why don't we have any goldfish crackers?")--and it feels as if I should know how to fix this; I should have a magic Mama-Wand that I wave and poof! Everything is all-better.

My 4-year-old son Bennett says, "It smells like the pool, Mommy" and I know exactly what he means. He's talking about the bleachy smell our new towels have, which reminds me, too, of the chlorine in the swimming pool at the hotel we visited (unexpectedly) last year, when our travel trailer broke a leaf spring on our family camping trip.

Or sunscreen. It's like having the beach in a bottle; as soon as I smear Banana Boat on the kids, I recall long days throwing rocks in the lake, or floating belly first on inter-tubes, trying to catch the tiny minnows that flash and dart in the shallows.

The lilac outside my window reminds me of the ones by my parent's house, when I was a little girl. I have a memory of falling asleep tucked between cool, clean sheets, to the gentle fragrance of a bunch in a jar by my bedside.

Which of course reminds me of my own Mom--on the nights she and Dad went out, I'd sit on the edge of her bed and watch her finish getting dressed, in the big, long mirror over her dresser. She'd put on a necklace or earrings; then perfume, which she kept on a little mirrored tray on her dresser. She'd let me twist open the lids and smell the fragrances with names like Charlie or Anais Anais, then she'd reach down and dab a bit of whatever she was wearing on each of my wrists.

The 2-track dirt lane that wanders into the little valley we've been calling home lately splits off from itself. You can follow it to the weathered and worn 70-year-old log house, or you can take the path that leads over a hill and through a falling-down gate to what my kids call "the fishing hole."

"The fishing hole" is no more than a wide spot in a tiny, seasonal creek, but to 9-year-old Carter and 4-year-old twins Avery and Bennett, the creek is a river; the wide-spot, a lake.

I'm not sure how, or where, my children (lead by Carter) got the idea that rivers were for fish, and fish were for catching, but soon enough they'd made plans: a string for a fishing line, a paperclip for a hook. Sticks for poles and worms for bait.

I didn't encourage them--how could I avoid explaining the river was too small; the lake, nothing more than a good imagination? But I didn't stop them, either, which is something new for me, as a mama.

In the past, I'd likely rush in and try to save my children from what I perceived to be certain disappointment. I'd divert them from this activity to something else, something safer and more sure, like blowing bubbles or digging a giant hole in the soft dirt behind the wood pile.

Maybe it was the way the light slanted through Bennett's wispy blond hair, or the brightness of Carter's smile. Maybe it was watching the 3 of them work together, sharing string and dividing up the house in a well-mapped search for extra paper clips. I might have been distracted by my own thoughts of what to have for dinner, or of how much milk was left. Whatever the reasons, this time, I let the adventure run its course.

I didn't say anything when Carter told me to get the net, or when Bennett asked that I bring an empty, rinsed-out peanut butter jar (family sized!) to put the fish in once it was caught. I didn't think about what we'd actually do with a caught fish, or how I'd explain it to them, the life-and-death part, the eating-means-taking conversation I sometimes struggle with, even among adults.

But, no. Really, I had no thought it would ever come to that.

Our little party headed up the 2-track lane, through the broken gate and past the rusty, junked model-T. Over the rise and through a grove of cottonwoods. Down a slope covered with last year's grass, yellow like straw, and there below was a trickle of water the color of coffee with cream.

Carter and Bennett ran up ahead. I was pulling Avery in the red Radio Flyer wagon with the supplies--the empty peanut butter jar, the net, extra paper clips, extra string, a blanket, and a baggie of jelly beans--when I heard Carter yell, "I saw a fish, Mom!"

"Wonderful, honey," I said in my distracted way, so sure was I that there were no fish in that tiny brook. I continued toward them, and got Avery settled with his stick and string, then sat on a rock at the water's edge, again, waiting for whatever the day might bring, but certain that it wouldn't be fish.

Until the splash of a worm in the water, the excited shouts, the flash of silver, the flop of a fish nearly in front of me--round "O" of a mouth sucking in air, a "V" of a tail flapping the muddy ground.

"The jar! Get the jar!" Carter yelled.

Dumbfounded, I did as told. He gently held the fish in the cupped palm of one hand while filling the jar with creek water. He slid the fish inside, and twisted on the red plastic lid.

A fish, impossibly. And yet, here it was, alive and swimming in circles, trapped in a peanut-buttery cage. It would seem that a plan needed to be made, that I might be the one to make it, but again, no.

"We could take it home and look it up on the Internet," I suggested.

"It might miss its mama," Bennett said.

"Mama," Avery agreed.

"And his father and brothers and sisters, too," Carter said. "We should let him go." Before I could add anything else (what could I add?), the jar was out of my hands, the lid twisted off, and the fish was again cupped in my oldest son's palm.

The boys regarded it for a moment, its fishy-ness, its giant eye, its fins for hands and no legs at all, then it was gone, a silver streak released into the coffee colored water. And I regarded them with the same wonder: my 3 boys, hunched over the creek bed, their voices mixing with the sounds of the water, hearts beating out the rhythm of the day.