Rebeccalou: This Writer’s Life

At 4 p.m. this afternoon, 60 years ago, my parents were married at the altar of St. John’s Lutheran, a small country church affectionately known as Green Meadow. The year was 1948. The war had ended and in its wake, Americans believed that anything was possible. At 26 and 19, I suspect Orlin Lee and Alice Neumann felt much the same. They began their life together during a postwar period of economic prosperity and simpler values, an era devoid of terrorism, energy crises or global financial panic, a time when doors were rarely locked, children went out to play and weren’t heard from until dinner, and roles for men and women, particularly in small midwestern towns, went largely unchallenged. Women married, stayed home and raised children. Men worked.

Thanks to several of Dad’s friends, he drove away with his bride that evening in a black Ford that reeked of pungent Limburger cheese once the heater kicked in. The couple left the familiar grounds of Green Meadow and embarked on a journey that lasted almost 54 years.

A few days ago I pulled out the piece I read at the 50th anniversary party my brothers, sisters-in-law and I threw for our parents ten years ago. At 69 and 76, Mom and Dad were headed into their later years in apparent good health, with energy and grace on their side, supported by kids and grandkids who loved them, and many devoted friends. In all likelihood, the malignant tumor that would be unearthed two years later was firmly rooted in my mother’s body, but on that afternoon in July, surrounded by family and lifelong friends, there was no sign of what was to come, no hint of her impending illness or my father’s subsequent disinterest in living without her.

On their Diamond Anniversary, I enclose parts of the piece I wrote for them a decade ago.

July 11, 1998

I walk my daughter through the streets of our north Denver neighborhood the last afternoon in May and think about 50 years of marriage. Fifty years of good morning, sleep well, is something the matter, I love you. Ali and I pass a bed of peonies, and on the corner, a triangle of purple iris bending in the breeze. I see the backyard of our house in the 1950’s. A row of white and pink peonies lines the north side of the lot near a hedge that Dad sheared with electric clippers we kids were not allowed to handle. Our job was raking the clipped leaves and branches into a pile at the alley where Dad burned them into a tiny mound of ashes. A chokecherry tree grew against the white fence next to a rusted green swing set. In the years the tree bore fruit, Mom made chokecherry jam, its bittersweet flavor piled on warm toast through the months of winter that stretched long and endless before light broke through and summer finally sat around the corner, plump, sweet and juicy.

Black drapes with bold flowers of many colors hung at the picture window in the first house I remember. Our family calls it the Louie Bloom house. Dad bought it from Louie for $7500. Mom and Dad lived in a converted garage by the clinic when I was born, but the Louie Bloom house is the one I remember, with its bunk beds and ladder and play table and chairs in the tiny second bedroom. Chicken pox and measles were part of that house. So were falling down the basement stairs and going for help the winter Bryan got stuck in a snowbank and drifts were piled high as houses. It was where we lived the summer Dad convinced me that I was ready for him to remove the training wheels from my blue Schwinn. More than 40 years later, I hear him cheering as I cruise down the street, feel the pleasure of wind in my face from atop a bicycle, and see him at my side when the front tire wobbles in sand and I lose control. Bryan paraded through the Louie Bloom house wearing his Davy Crockett coonskin cap, christening the hardwood floors with his cowboy boots. He rode up and down the sidewalks on a child-sized Minneapolis Moline tractor, a replica of the one his grandfather and Uncle Howard drove on the farm that was like a second home to us in the years we were growing up. 

Our family left the Bloom house when I was 7, maybe 8, and a year later, on a frigid morning in early February, Eric was born. My mother had wanted one more child before her 30th birthday. Eric was her wish come true. Gone were the days of children who sat still in church, or waited patiently for Dad while he closed up his office at five o’clock. Eric’s world begged to be explored. Dad’s adding machine was jammed on more than one occasion. Dirt from the planter was strewn across the carpet while Mom braved a phone conversation in another room. Eric shared his precious bottle of milk with the dog for years, and simultaneously engaged the push button gears in our red Chrysler one summer evening while we ate ice cream under the trio of elm trees lining the gravel driveway at the farm. That same summer, he ran barefoot over a bed of simmering charcoal briquets that my grandfather had poured behind the parked cars after the burgers had been grilled. I remember my mother shaking her head a lot when Eric was little. “If he had come first,” she often teased, “he would have been an only child.” Eric made her laugh, kept her young and, in all ways, was the perfect last child.

Warmed by early summer sun, Ali dozes off, leaving me to contemplate the paved surfaces, bumps and potholes of a marriage I have witnessed rather than been a part of. None of us really understands much about someone else’s marriage. We witness our version of life between two people but cannot know the nooks and crannies, the chipped woodwork, the hidden spaces in the days and nights common to husband and wife. There were jokes that only our parents shared, giggles that came from the room across the hall. I remember the house going silent one Sunday dinner when Mom was in tears over lumpy gravy. We kids were confused, too young to see that gravy had nothing to do with what was happening between them. 

The saddest I remember seeing Mom was the rainy, cold day I opened the car door and found her whimpering in the driver’s seat. She had come to pick me up from school. I think I was in the fourth grade. 

“What’s the matter?”

“Bryan may have leukemia,” she muttered, more to herself than to me.

“What’s leukemia?” I wanted to know.

“Leukemia means he’s very sick,” she answered, and said no more. The dark, wet afternoon wrapped around the car like a shroud as we drove home in silence. Dr. Kinkade would know the results of the blood test in 24 hours. I was told not to say anything to Bryan as I watched our parents stand in the doorway of their worst nightmare, and wait. Fear lived and breathed among us like a ravenous dog who had wandered into the house in search of food. Rainy skies broke a day later. Bryan did not have leukemia, but instead one of those benign viruses that came and went with some frequency throughout his childhood. Like the others before and after it, this one slipped away in its own time. The door was unlocked and the mad dog was chased into the night. No one spoke of the fear again.

I cross the street and steer Ali into the shade of elm trees and cottonwoods as I walk the last mile toward home. Fifty years is forever. Fifty years is a blink. We gather tonight in a room filled with family, friends and memories of younger days, of babies crying in the night, scraped knees and elbows, laughter around a campfire, the deaths of our parents’ beloved parents. Nothing stays the same. The Buddhists teach us that impermanence is the great lesson of life. Suffering comes when we grasp and try to hang on, too afraid to let go of thoughts, expectations, people. To accept things as they truly are is to greet the life we are given as an old friend.

I turn the corner at Newport Street and walk the last block to our driveway. Ali opens her eyes when I stop moving, and taps her right hand with her left. More, she is saying, I want more. Give me another ride. I’m not ready to stop.

Parents of children with special needs hear a lot of questions: How old is she? What happened? Does she go to school, have friends, work? Will she always live with you? How do you do it?

We ask ourselves many others: Why her, why me? Is there freedom in being different? Will the world be gentle, kind, forgiving? Who will take care of her when I no longer can? What will happen?

Ali was 13 the Saturday I went to my first workshop about planning for the adult lives of our kids with special needs. The leader, himself a father of an adult child with Down Syndrome, asked us to name the three things we feared most when we thought about our kids being here without us. I wrote isolation and loneliness, and started crying. I remember little more about the day, except that I was not alone in my sadness: nearly every parent in the room expressed those same fears. Most, like me, were in tears.

We parents leave workshops like that one and watch lines come to our faces, see puberty blossom in our kids, see the signs of their growing up and our aging appear simultaneously, the harbingers of life to come. We establish Special Needs Trusts and fund them with life insurance policies on ourselves. We talk with family members about serving as trustees, wondering if they have any idea what a “yes” would entail if we were hit by a car on the way home. We create a master list of all the agencies and individuals who provide services for our children, with names and phone numbers, and put the list in a labeled file. We give copies to our brothers and sisters-in-law. We look at our other children, at our nieces and nephews, and wonder who among their generation will step up to help manage our child’s life in 20, 30, 40 years. We practice yoga. We look for angels. Like a mantra, we affirm that we stay healthy and strong. Much has been asked of us; more is yet to come.

Of course, I don’t know how life will unfold any more than you do. I set the stage with props and lighting, and lean on trust, guessing that the biggest issues will be things I haven’t even thought of. The thread connecting my heart to Ali’s is crafted of blue steel, indestructible, unbendable, tough as nails. I have imagined snipping that thread and dropping my end into a canyon, so heavy it’s become, only to hear the imaginary echo and shudder to recognize my own level of exhaustion. Other days my eyes well with tears at even the thought of her living somewhere other than in our home. When she is away at camp, I’m struck not by how the days grow big with freedom; that would be expected. I’m struck by how much I miss her. Not the lifting or the loud music or the ongoing requests for assistance, but HER, that positive energy, remarkable insight, and those frequent outbursts of unbridled joy. I take myself out of the picture and squint to see the future, waiting for the blurred edges to come into focus. I think I recognize an image but it doesn’t last. I can only know now. 

From time to time I’m asked to talk with groups of parents whose kids have special needs. Usually the kids are younger than Ali. Having traveled more miles on a journey few of us have chosen, I offer the perspective of time. The invitation comes with an expectation: show us what’s ahead, we want to prepare. “They want to see that you’re still standing,” says my friend Caroline, herself one of us.

So what do I tell them?

That even though we’ve never met, I know them. I know what defines them above all else. I live with their fears and I understand their love. I show them that I have a life and so does my child, and that our lives are moving out of intertwined and tangled into side by side. They see that I haven’t forgotten how to laugh or cry, haven’t gone numb or been consumed by the sheer managing of all that’s asked of us. I’m convinced it’s not so much what I say but that I am there to say it. I show them I am still standing.

Near the end of our time together, we hear Ali squealing out in the hall. We hear her smile before we see it. She zips into the room, asks me how much longer, turns on a dime and takes off again. On her own, happy, communicative, engaging.

Does anyone have a question?