We Are All in Newtown

It is mid-December 2012 and in the background of daily life are the impending holidays and the end of the Mayan calendar on December 21, which some people suggest predicts the end of time. Last week, I thought I would write this week about the holidays, celebrating Christmas in all its pagan glory when my children have been raised exclusively as Buddhists. Last week, I finished my weekly Whoopsiepiggle post on Thursday and planned to edit it one more time before posting it the next day. But last Friday, before I had posted, a friend told me of the shooting in Newtown, Connecticut. I didn’t post on Friday. I wondered whether or not to post on Saturday. Would posting, by resuming my weekly routine, help process such an emotionally eviscerating event? Or would holding off on posting show respect for the dead much like a moment of silence? I posted on Saturday and I’m still not sure if that was the better choice.

Mayan calendar or not, it may feel like the end of time has come for the families of the 20 first-graders murdered in their school. The friend who told me of the shooting takes my sixth-grader, Jules, to school each morning with her own first-grade son. After she called, I wanted to back up time to earlier that morning when we were chatting in my driveway while Jules climbed into her Jeep. The air was crisp but not frigid, the matte finish of frost coated the lawn and the sky pinked the horizon. At just past 8 o’clock, it was the beginning of the last hour of life for twenty little children and the adults who tried to protect them.

People die everyday. Approximately 150,000 of them worldwide. In 2000, it was estimated that roughly 1,500 people are murdered each day on our planet. Sometimes these events hit us because the person who dies is someone we know, someone we love dearly and when they pass, it can feel as if something inside us dies too. Other times, strangers die in ways that captivate our sensibilities and make us pause in our otherwise self-absorbed lives. The destruction of the Twin Towers on 9/11/01, the South Asian tsunami in 2004, last year’s tsunami in Japan. We gasp when other humans, particularly those who live most like us, suddenly stop living with little or no warning. If it could happen to them, it could happen to us is the feeling deep inside. Perhaps even relief that it happened to someone else and not to us.

This past year brought an onslaught of mass killings in the U.S. Humans killing other humans whom they didn’t even know for no apparent reason other than insanity. Last February, after a boy in the nearby town of Ravenna, Ohio randomly shot and killed three students, we practiced a lockdown drill at the school where I worked and Jules attends. The community at the private, Waldorf school feels like that of a healthy church community in the way we come together to help out the school and one another. The dogma is the Waldorf pedagogy we have all chosen for our children. I have long had a list of things I would buy the school were I to win the lottery—things like energy efficient doors and windows. After the Ravenna shooting I became acutely aware, as I sat at a desk from which I could see the main doors to the building, that our school was not adequately prepared for an intruder with an assault weapon. My wish list for the school is now very different. Then again, the fact that Sandy Hook elementary was far more prepared was of little consequence when the assailant just shot his way into the building.

A week after the Ravenna shooting, we learned of an Episcopalian school’s headmistress being murdered in her office by a recently fired teacher. They had let him in because they knew him and never suspected his guitar case contained a gun. Working at the K-8 school my son attends is the only job I have ever had where I felt a deep concern for my physical safety. Not because there was anyone I was afraid of but because it is clear that nobody at any of the school shootings this past year thought they were in any danger of inexplicable violence.

What’s Different?

With each mass killing this past year, not only at schools but also a movie theater in Colorado and a Sikh temple in Wisconsin, I observed something as grim as the murders themselves: We as a nation have become desensitized to mass murders committed with alarming efficiency. Until last Friday, I never expected uproar for gun control because I knew, as apparently did the politicians, that it was pointless. I have long had the sinking feeling that we will just live with these crimes in this country, that it is one of the negatives in the cost benefit analysis of living in the richest country in the world. People talk about Canada having a preferred approach to a number of social and criminal issues but I do not know a single American who has moved to Canada in response to American policies.

I wrote in Whoopsiepiggle last week that having children changed me, made me a better person. I was not a bad person before and, if anything, my kids have taught me to be kinder to myself. Losing a child under any circumstance would also change me. Perhaps more deeply than having them in the first place. To lose a child to unspeakable violence, to wonder what your baby’s terrifying last minutes of life were like, and to know that as the parent you were utterly incapable of protecting your child, these things shatter my heart as a distant observer.

That’s the difference.

According to a recent study, mothers who lose a child, even a child out of the home, have a 133% greater chance of dying themselves in the subsequent two years. This horrific event has made many turn inward, go deeper than we did in any of the multiple mass killings of the past year. This time there is much discussion of gun control, access to mental healthcare, and the fact that middle class white men have perpetrated the overwhelming majority of these massacres. These discussions are happening because this crime, even given our gun death saturated news cycles, was too much for us.

I don’t doubt that many people have turned to their faith to help them process this event. There’s nothing to make sense of, the killing of 20 innocent children and their adult educators is insane. My faith does not ascribe spiritual causation to events whether they are good or bad. But I have learned through my practice to observe our behavior when things are very difficult. Particularly at times of grief can our hearts become softer, more open, vulnerable and compassionate. It is a tenderness we would do well to cultivate, to carry into our interactions for as long as possible.

In the days following 9/11, the French paper, Le Monde ran the headline, “We Are All Americans.” As a nation and perhaps beyond our borders I see many people grieving as if we are all family with the people of Newtown, Connecticut. A friend posted on her Facebook wall yesterday: “I have to stop watching television. All I’ve been doing is crying.” Another person responded that she too had been crying and her TV was off.


An longtime friend who now lives in California stayed with us over the weekend. Also Buddhist, she and I briefly discussed that in this or any situation the question of why is irrelevant. Whatever has happened has happened, so now what?

But the soul cries why. Why were these children born if only to be taken? Why did the killer pick that day, that school, that classroom, those children? Why had the killer not been treated, hospitalized, or jailed? If I were a parent of one of the murdered children, I imagine I’d ask myself why I hadn’t kept the child home that day.

Questions of why only lead to despair because in the end, we have no control over what happened. The dead are gone, many now buried. And nothing will bring them back. We will all die and soon, in relative terms. For most of us, 99.9% of the world’s population will not notice our passing. And soon thereafter, within a few decades, we will be forgotten in the vast darkness of time.

What will we do with the very limited time we have? We will cry for those little children as surely as we cry for their families whose pain breaks us open and for the moment brings us together with people we will never know. We will try to sustain the compassion we feel for one another in the shadow of this tragedy because right now, in this holiday season when shopping seems so hollow, when the fiscal cliff now seems inconsequential, our perceptions of “us and them” are momentarily suspended while we grieve for the dead in Newtown, Connecticut.

And maybe, before we re-swaddle our conscious minds with our busy lives, we will finally address the complex issues of these now common massacres. Twenty children were heinously sacrificed. It need not have been in vain.


What We Keep

Max and I have a new fantasy for disposing of our extra furniture and belongings: buy a small house in Charlevoix, Michigan and haul it up there. We’ve picked out the house, it’s right next door to my step-mom and her husband and where we occasionally stay we visit. It’s small enough to be easily maintained and the kids can roll right over to Grandma’s in the mornings when we are there.

In our minds, we have already moved in. We know where the extra dressers will go, the three double beds we don’t need, the antique shelves, the 1950s dinette, the extra dishes, cookware and linens. Don’t forget the decorative objects, original paintings, coffee table books. All fit perfectly in our little pied-à-terre.

Never mind that the cottage is not for sale. Nor that we couldn’t afford it if it were. Nor that we already own three homes. And what about the fact that not only does the house we live in have a three car attached garage, there is an outbuilding that is the equivalent of a four car garage? All full, yet only the mini-van gets parked inside.

“We live like hoarders!” I plaintively whined to Max this past weekend as I listed the rooms stacked with boxes. We’ve been in the house just over a year and, as the demands of our daily lives overtook the formerly pressing need to unpack, we became oblivious to the boxes. So much so that now we blithefully trot the goatpaths between the walls-o’-cardboard. Yikes! We really are hoarders!

For every improvement, there is an attendant cost.

That sounds like a quote from someone historical, but it’s just me (I wish I could say, an equal and opposite cost, because it sounds catchier. But that’s generally not the case). I first struck on this notion when I was an undergrad and at the time was pondering computer software. Computers were beginning to make automatic corrections and, as someone who began writing in the days of electric typewriters, I wondered if grammar and spelling would degrade in younger generations. Looking at the writing of my teenaged sons, I think it has. Hugo especially has pervasive capitalization errors because he relies on auto correct to clean it up for him. Sometimes it does and sometimes it does not.

The word “cost” sounds negative and sometimes it is.

Take for example, buying a house. You might improve your financial situation by paying for a mortgage, in sense paying yourself, rather than giving your money to a landlord. However, as the homeowner, you now must do the yard work and maintenance on the house. Maybe you love yard work and maintenance, so that’s great for you. But all homeowners have had those times when things unexpectedly break and you, not your landlord since you don’t have one, have to replace them.

When I divorced, I got the house. The same month I took sole possession the water heater broke. A few weeks later the dehumidifier died. Followed in short order by the refrigerator, the washer, the dryer, the oven and the garage door opener. I became well acquainted with Alan, a sales clerk in the appliance section at Home Depot.

I believed then as I do now that I had greater security for my children and myself by owning my home. But without Home Depot’s wonderful 12 months-same-as-cash programs, I would not have been able to replace everything that broke in a timely fashion. Even with interest free financing, my money was pinched making those payments.

In other cases, improvements may only seem like they have an attendant cost but as those cute t-shirts say, it’s all good.

In the first few months after I had Claude, my first child, it was impossible to get anywhere on time. Born in January, I’d feed and burp him, change his diaper and dress him in his little snowsuit. I’d put on my coat and as I picked him up to walk out the door, he’d poop. I’d take off my coat, his snowsuit, his pants and diaper, clean his butt and then rewind. Or he’d spit a belly’s worth of milk down his front, causing another adventure in tiny clothing. It was then that I realized I had lived a completely self-absorb existence pre-baby.

Six weeks before Claude’s third birthday, I had my second baby. I was better at getting a baby out the door and would often have wee Hugo bundled into his car seat before suiting Claude up for the cold. Still, anything that involved getting in and out of the car overwhelmed me. There is no dashing into a store when you have two small children. The stroller has to come out, the baby goes in the stroller and then the toddler comes out. Hopefully you don’t leave the diaper bag behind, because you most certainly will need it if you do. In those days when I would see a woman pushing a stroller with one baby in it and no other children around, I would think she doesn’t know how easy she has it.

Now I have five, count them, five children! The Episcopalian Church across the street from our home has a community dinner each Wednesday evening. We are not members of the church, but have many friends who are. One in particular has made it a point to invite us to come each week and who could resist? I don’t have to plan a dinner, the boys don’t have to do the dishes and we get to visit with friends. Best of all, the food is delicious!

“You know,” I said to Hugo and Jules as we walked over to the church last week, “there are five of us here right now, but it doesn’t feel like so many people.” I was holding Lyra and Hugo had Leif’s hand. Max had gone to visit his elderly uncle that evening.

“What are you talking about?” asked Hugo.

“Well, if you had told me when I was a young woman that one day I would have five children, I would have imagined some crazy scene, like kids running around all over the place. But I’m walking with four of you right now and it’s not crazy—it’s just us, you know what I mean?”

“Yeah, well, we’re each other’s company, we’re your peeps,” said Hugo.

Granted, I don’t have five little kids, which would be far more chaotic than having a young man (Hugo) and an adolescent (Jules) help me with the two peanuts. As my mother’s only child, growing up was very different for me than it is for my own children. I spent most evenings by myself while my mother worked in bars and my stepfather traveled for his job. I cannot imagine having only one child. Or as Lena Olin’s character says about small families in the film The Polish Wedding, “You wouldn’t bake just two cookies, would you?”

I greatly appreciate the fact that the human population is growing at a rate many find alarming and I fail big time on the reduce, reuse, recycle mantra in terms of putting so many humans on the planet. But I am a better person for having become a mother. Perhaps only one or two would have done the trick. But I had five. And I have learned from my five kids both that I am not the center of the universe but it is paramount that I take good care of myself in order to take good care of them. Children have humbled me and taught me how to hold my seat as the boss. They keep me grounded by reminding me who I am while pushing me to be my very best and to reach, reach, reach. Sound familiar? That’s because it’s also how I raise them—it’s a symbiotic gig. My kids bust my butt better and more often than anyone else. And they believe in me more than most do or will. Claude and Hugo regularly tell me to publish my book. That they believe in my writing makes me want to be a better writer. Every day.

Sometimes it’s a no-brainer that what you lose is better off lost.

Leaving a soul-sapping marriage is always an improvement, no matter how difficult it is to do so.

For years, I complained about what I did not like about my marriage. Then one day I did something different: I declared what I needed. I needed a partner who showed up, both physically and emotionally, for the boys and me. I needed sovereignty and for my partner to be a real partner. To support my ambitions just as I supported his; to invest in our children just as I had done; to build a life that on most days meant being together was better, easier even, than being single. And I was no longer willing to accept IOUs for changes in our relationship. That bank had gone belly up.

I got what I wanted, but not where I thought I’d find it. My demands were too high for my ex-husband, which is neither his fault nor mine. We found the meaning of “irreconcilable differences,” the cause often cited in newsworthy divorces. Our divorce was not newsworthy, but rather followed a predictable pattern to the bitter end, routinely confirming just how irreconcilable our differences really were.

I got what I wanted when, a year later, I fell in love with my friend, Max. He hit everything on my list. I fell in love with him a second time when many months later, he stepped into the lives of my boys and filled a void. Not by buying them things or trying to impress them. But simply by showing up. Even when it is inconvenient, even for situations that simply aren’t fun.

A New Life in a New House

Max had just built a three-story addition onto his home in a northeastern suburb of Cleveland when we converted from friends to lovers. It had been the home of Max’s father, who had died almost ten years earlier. Many of his father’s things—furniture, art, collectibles, papers—were still there.  Before returning to Ohio and his father’s house, Max had lived for more than a decade in other states and had packed a household of his own into the 1930s bungalow. While the older parts of the house were as full as a funky antique shop, the rooms in the new addition were invitingly open. A new life accepted the invitation.

My house is in Akron where, in 2003, my children and I solidly rooted after years of moving. When my ex-husband moved away, he took with him many family heirlooms he’d inherited including three dining room tables and two hutches. Beautiful as they were, it was a relief to see them go for they made me feel like the curator in a museum. If the house felt a little empty, or refreshingly open, it quickly refilled with furniture like water pouring into a capsized boat. One friend gave me a couch; another gave me dressers. Max himself brought over a leather wing-backed chair, a cabinet and tables. Soon my 1909 four square was as full as it had ever been.

For three years, we happily lived in two homes. When we had our first baby together, Max decidedly began staying most weeknights at my house and on the weekends we pretended his house was our pied-à-terre. His two cats grew terribly fat and lonely.

I don’t recall when we started looking for another house. We certainly didn’t rush and had we not had the world’s most patient realtor (www.barbsnyder.com), we might never have bought a third home. Time and again, a house would look appealing online and appalling in person. We soon realized that as much as modern floor plans have to offer, we prefer old construction. Solid doors, brass handles, curves in the plaster, quirks in the design, windows wherever possible. We’d go months without looking at any houses.

And then, like at the end of Miracle on 34th Street when child actress Natalie Wood sees the house she’s been dreaming of and makes her mother and (soon to be) stepfather stop and go inside with her where they find Santa’s cane in the corner of a room, we knew immediately when we had found our home. All other houses we had dashed through, knowing instantly that they were not what we wanted. In the house that was to become ours, we went from floor to floor, room to room, squeezing hands, whispering, “Look at this.” Because he was the most resistant to moving, we had taken Jules with us whenever we looked at houses, including that day. “Please buy this house!” he told us. That evening, Max made an offer. It was quickly accepted.

It took us six months to fully move in. First, we emptied and rented Max’s house. Then we did the same with mine. Things we had long housed were discarded. For Max, that meant many of his father’s things. What had once been hard became easy, as we built our future instead of holding onto another’s past.

But like archaeology, it has happened in layers. Since moving in, we have had garage sales, taken a truckload of things to Habitat for Humanity, sent boxes of art to Max’s sisters in Colorado, sold things in an auction, given more to the American Cancer Society’s local Discovery Shop. And the back garage is filled with furniture that doesn’t fit in the new house. Built in 1940, it calls for a mid-century aesthetic and we both came from Arts and Crafts homes. Our Arts and Crafts pieces of furniture look incongruous in the new home. We have loved them, but they don’t belong here.

I only have one piece I’ve yet to let go of (yes, other than books of mine waiting for shelves to be built, the rest really is Max’s stuff). An antique child’s armoir-dresser built of dark wood in Mission style. It was in my room until I was in high school. Years ago, my mother called and said she was going to sell it unless I wanted to pick it up. Hugo used it for several years, but doesn’t fit in any of our current rooms. Corralled in the back garage with the other outcasts, a man spied it at our last garage sale and insisted on buying it. He kept coming back to the house to offer me more money until I cried. I just wasn’t ready to let it go. Not yet. Soon. Maybe.

p.s. Max reminds me, and wants me to inform you, that we have more rooms without goatpaths (kitchen, dining room, living room and four bedrooms) than with (our two offices and the basement). 

p.p.s. The basement is really big.

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Learning About Lyra

“Is there a vagina?” I immediately asked the midwife.

After a summer of crop-killing drought, it rain fell the day my last child was born. For the first time in two months, we turned off the air conditioning and opened our windows and a soft breeze cleared out the re-circulated air. Sitting on my side of the bed, I looked out the screen door to our veranda while I waited for each contraction, watching the soft rain, breathing in the fragrant storm. When I began to push, just a couple of hours after hard labor had begun, the storm seemed to move with me. Still falling in straight lines, the rain grew heavy and splattered noisily on the heat-hardened ground. Fifteen minutes later the baby emerged, the rain stopped and, as unbelievable as it sounds, the clouds parted just enough for a shaft of sunlight to settle onto the soaked lawn.

My fifth child is my first daughter. Or so the doctors had told me during a level II ultrasound eighteen weeks into my pregnancy. But reading an ultrasound is a subjective art and there are no guarantees of the analysis. We knew this.

Lyra on her fifth day
Lyra on her fifth day

Because I was 46, I underwent many prenatal tests while expecting my last child. The extensive blood work and high-level ultrasounds did not reveal any abnormalities and when, in my last trimester, I had a fetal echocardiogram, the cardiologist said everything looked beautiful and beautiful is better than good. Having decided we would not terminate a pregnancy if the fetus had Down syndrome, my partner and I passed on an amniocentesis. More importantly, I felt certain I would lose the baby if I had an amnio. Like me, my grandma, who mothered me unlike anyone else, had four boys. Her only daughter died at birth because of the Rh blood factor. Grandma had negative blood and, like her first child, her baby girl’s blood was positive. At the birth of her first child, a boy, Grandma’s blood created antibodies against his positive blood type, which remained in her body and, later, killed her daughter. I, too, have negative blood and my daughter’s is positive, but since the 1970s there has been a remedy for this. After each of my babies’ births, I was given a RhoGam shot that prevented my body from building antibodies to positive blood.

Grandma kept trying for a daughter, even when my grandfather did not agree, but she only had boys. When I learned my fifth child was female, I believed an amniocentesis would cause me to lose my baby just as the Rh factor took Grandma’s daughter. It isn’t logical, I understand, but I felt very strongly about this connection. I still do.

Bluish and slippery when the midwife handed her to me, the baby screamed long and loudly. Her eyes remained closed as I began nursing her. Her skin pinked up, her umbilical cord was cut and our girl, whom we named Lyra, was perfect. When she finally opened her eyes, I mentioned that they looked “Downsy.” Then I saw the bulk of skin on the back of her neck, and then the ghostly pallor of her pupils. I mentioned these things to the midwife, who had listened to Lyra’s heart the moment she was born, and she told us she’d fully examine the baby in a bit, to just hold her for a while. In the middle of our bed, Lyra’s father and one of her brothers huddled with me around our new child. The midwife knew. So did my friend who was there to photograph the birth.

My daughter has Down syndrome. And, when she was born, she was blind. The murky white of her pupils, the color of breast milk in a glass bottle, was due to bi-lateral cataracts. Leaving me to revisit what I thought I desired in a daughter, what it is to have Down syndrome and, ultimately, what it means to be fully human.

The first weeks of Lyra’s life whirled past us as we dashed to one appointment after another, first verifying her Down syndrome (DS), that she had no life threatening conditions (as can often be the case with babies with DS), and, most urgently, taking care of the cataracts in her eyes. Once her eyes were surgically cleared, we had an impending presidential election to absorb so much of our attention—along with daily life in a family of seven.

We made ourselves busy. Too busy to really take in what it means to have a child with Down syndrome. Too busy to spend time with uncomfortable questions as they slither up from the cracks of my mind. On the day Lyra was born, the midwife wisely counseled us to stay off of the computer for a while, to just spend time with our daughter. But just as important was to find support and accurate information as to what a diagnosis of Down syndrome means today in the United States.

I wish I had worried less about who my daughter would become and enjoyed the baby she was. ~ a mother, quoted in Babies with Down Syndrome

The test for Down syndrome is a yes-no test. Your child either has an extra 21st chromosome or she doesn’t and the results are back in as early as 48 hours. Lyra was born at home on a Tuesday. On Friday, we received the call confirming her diagnosis. But no test can tell you the severity of your child’s Down syndrome. You just have to wait and see.

There are, however, varieties of Down syndrome, including something called Mosaic Down syndrome in which not all of the cells contain the extra 21st chromosome. To learn what type of DS a child has requires a karyotype test, for which it takes many weeks to receive the results. Even though about 95% of children with DS have Nondisjunction Trisomy 21karyotypeTrisomy 21, or an extra chromosome in all of their cells, for nearly three months, I held on to the odds that Lyra was one of the 5% with Mosaic DS. She has few markers, I reasoned with myself, she’s developing beautifully and while there are no guarantees that a child with Mosaic DS will have milder symptoms, fewer medical problems or an easier life, I wanted it to be so.  I wanted it because maybe, just maybe, Lyra would have fewer struggles. And, yes, be more typical.

Which is just magical thinking.

Magical Thinking 

In a healthy mind, magical thinking can help us cope with something very difficult. In 2005, Joan Didion published her memoir, The Year of Magical Thinking, about her life in the months after her husband died suddenly of a heart attack. In essence the first three stages of grief on the Kübler-Ross model—denial, anger, and bargaining—all represent an element of magical thinking. The last two of the five stages, depression and acceptance, strike me as the points at which reality sets in.

Oldest & Youngest: Claude and Lyra
Oldest & Youngest: Claude and Lyra

Did we grieve because Lyra has Down syndrome? I know I did. But not all the time. Max immediately saw her as perfect and has continued to do so. The constant refrain from all of her brothers was and is, She’s so dang cute! Mostly, I enjoyed her for the baby she was, sweet and easy to hold, but I cannot help but wonder, as a child and adult, who she will become. At three months old, she only weighed 9lbs. 12 oz., which is less than two of my boys weighed at birth. She didn’t hold her head up as well as they did at three months due to hypotonia, or low muscle tone, which is a common characteristic of Down syndrome. But she remained in the range of normal development, even when compared to a typically developing baby her entire first year.

I have heard many people with Down syndrome children speak of uncanny coincidences, odd and, yes, magical things that occur with and around their children. Martha Beck wrote an entire book on it, Expecting Adam. When word got out that Lyra has DS, many friends recommended the book and one gave me a copy. Beck and her husband were in PhD programs at Harvard when they discovered they were pregnant with their son Adam, who has Down syndrome. Odd things happen throughout the pregnancy that Beck ultimately decides are very spiritual in nature, perhaps the work of angels or other spiritual beings.

On a warm day in late October when I had just finished reading Expecting Adam, I was overwhelmed with my day’s schedule, our clutter-filled house, the children needing to be reminded of things like, shut the door when you come in. Where are my angels? I have a child with Down syndrome too! I thought petulantly. That evening, I took two-month-old Lyra and went to a Down syndrome support group meeting, leaving my two-year-old son, Leif at home with his older brothers. As soon as I pulled into the parking lot where the meeting was held, my son Hugo called me.

“I don’t know what happened,” he said, fear in his voice.

“What?” I asked.

“Well, I was in the living room and Jules was in the kitchen,” he said.

“Yeah, so?” I asked.

“Leif had been in the basement, at least I thought he was in the basement, watching a movie,” Hugo continued.

“Okay, what is it?” I asked holding my cell phone ever tighter in my right hand.

“Well, I don’t know exactly what happened,” said Hugo and I wanted him shake him.

“What the hell happened?” I yelled.

“You don’t have to yell!” Hugo snapped back. “Leif must have gone out back through the porch and, uh, somehow the gate wasn’t locked because, well, this lady came to the door with Leif. She said he was on the street.”

We live on the busiest street in a small city. There are four lanes of traffic in front of our house. Across the street is a large church that has a playground where we often take Leif. A few days later, I learned the entire story. Leif had started to cross the street with no regard to traffic. A woman driving down the street saw a man, who was walking on the sidewalk, stop and pull Leif back onto the sidewalk. And then the man continued on his way. When the woman in her car saw that Leif didn’t belong to the man who’d pulled him to safety, she parked her car, got out, and went up to our little boy. She asked him where he lived and brought him home. Later, the woman told a friend the story. The friend knows us and called me.

I read the paper every day. Bad things happen all the time. Two strangers likely saved my son’s life. Was it the work of angels? Fate? Or mere coincidence? I can’t say. But I hung up the phone and thought of my earlier complaint. “I’m sorry, I take it all back! We’re good! Thank you!” I said outloud.

Max and I both believed we could have a child with special needs if we were audacious enough to try for a second baby together. At least, we occasionally mentioned it to each other in the year after we had Leif, who was born without any diagnoses when we were 44 years old. I wondered if trying again was hubristic, was I daring the gods, did I think I was somehow superior to the odds of having a baby with an extra chromosome, which were high? No, I did not. In fact, I quietly believed the odds were more than high. I believed they were certain.

Clearly many would see this as an unacceptable outcome because more than half the women in the U.S. who learn they are carrying a fetus with Down syndrome elect to terminate the pregnancy. Others, like Martha Beck, may see having a child with Ds as a gift, a reward for parents who might feel chosen by a higher power. To me, it’s neither.

As with all my children before I conceived them, I felt that there was a child out there, the last one, waiting to come to our family, and that it was my girl. Max would also on occasion say things like, “It would be nice for Leif to have a sibling close to his age; he’ll be so young when Jules goes off to college.”

And so, when Leif was just two months shy of his second birthday, we bought an ovulation kit and Lyra was conceived the first month we used it. On Thanksgiving Day.

But What Can We Expect?

On Lyra’s second day of life, we had a long discussion with a genetic therapist. She took her time with us as we began to learn that the expectations for children with Down syndrome are radically different than they were when we were growing up. For example, consider this fact: When I graduated from high school in 1983, the life expectancy for someone with DS was 25. Now it is 60 and increasing.

Today, children with Down syndrome benefit from early interventions including speech, physical and occupational therapies. There are highly organized support groups nationwide including, in Northeast Ohio, The Upside of Downs, a group who has been tremendously helpful to us from the moment we first contacted them. There are also national organizations including the National Down Syndrome Congress whose video, “More Alike than Different,” explodes old notions of what adults with DS are like and what they can do. As does the documentary movie, Monica and David, about a married couple, who both have DS.

The success stories are encouraging and truly heart warming—I easily become weepy watching them. But like buying a new car and suddenly seeing everywhere the same car, in the same color, it now seems that I see children and adults with Down syndrome all the time, not just at functions for families in the DS community, but as I am out in daily life. And clearly not all of them function as highly as the young people in the aforementioned videos.

The truth is none of us know what our journey will be with any of our children, whether or not they have Down syndrome. I have two sons with severe dyslexia who have required significant interventions. I have one son who turns to gold anything he sets his mind to—academics, sports, music, visual art. And it is that son who regularly commandeers immense amounts of my parenting time, attention and certainly energy. I could not have predicted any of these journeys with my oldest three sons when they were babies in my arms. I love none of them any more or any less for who they have become. Rather, much of the joy in having a large family is getting to watch both how similar and how different each child is from the others.

With Lyra we are immediately aware that we have a unique journey. There is a helpful analogy often told in the Down’s community about giving birth to a baby with Down syndrome. It’s as though you were preparing for a trip to Italy—you found your dates, purchased the items you thought you needed. Perhaps you’ve been to Italy before and are looking forward to returning. Or maybe it is your first time, but friends of yours who have been to Italy before tell you what to expect, how to plan for your trip. The big day comes, you board a plane and make the long, tiring flight to Italy. But when you disembark, you find yourself in Holland.

My view of Lyra while hiking with her in the baby carrier on my chest. December 6, 2012
My view of Lyra while hiking with her in the baby carrier on my chest. December 6, 2012

We arrived in Holland with Lyra, because we quickly knew she had Down syndrome. And like customs officials at international airports, in the first year of her life, we met with an onslaught of medical officials as we worked to make sense of where we were.  Even after more than a year of familiarizing ourselves with our situation, we don’t yet know on which roads our journey with Lyra will take us or what cities we will end up in. Only as she grows, and we learn how having that extra chromosome specifically affects Lyra, will we be given our unique map to follow in this territory that in one short year was no longer felt foreign.