Chapter One
The regretful word slipped out of my mouth before I could catch it. Before I could prevent piercing the soul of my child, who didn’t yet grasp the burden of frustration or fully understand its meaning. Or did he? He was still a child in my mind, even as the wiry hairs sprouting on his chin indicated an emerging manhood that filtered through the lines of his body. He sat next to me, his round eyes a murky hazel and his eyelashes blinking rapidly. These facial cues always came moments before a well of tears sprang forth.
It was springtime, and the housing market was booming. My husband, Erik, and I had chosen to put our house on the market—a decision not made lightly. Situated on a corner lot, ours was a favorite location for the neighborhood kids to play hide-and-seek. A milestone moment for parents who held their tiny toddlers’ hands as they mastered the three steps to our front door. A destination for selfies when the Halloween ghosts appeared or the Christmas cow graced our lawn. During the summer, the birds of paradise seemed to chat with our lemon tree as it bowed beneath its fragrant harvest. Over the sixteen years we lived there, our house welcomed three kids, one dog, one cat, two rats, and an insane sensibility that our lives were one big, messy puzzle in which all the pieces miraculously fit together. Neither Erik nor I knew anything about raising a child with a disability, nor, in fact about raising kids in general. Somehow, we made it all work. But we had reached a point where we wanted to move to a smaller town that offered better schools. Mainly, though, we were ready to mix it all up again.
Erik insisted we involve our teenagers in the decision, and I bristled at getting their input. I grew up one of nine kids, and my parents never involved us in any of their big decisions. My father was an electrician, and none of us were aware of his income, how big the mortgage was (if our parents even had one!), or how they managed to feed nine hungry mouths. My resistance to change forced me look inward. Why not involve them? From Erik’s perspective, perhaps this was the start of our kids collectively sharing responsibilities, learning life skills, and taking the first steps toward independence.
It was on this day we received a call to show our house with very little time to vacate, and I’d hoped to slip out the back door as the potential buyers came through the front. Hastening the kids out the door, our dog sensed the excitement and eagerly leapt into the chaos as I barked my commands to the kids to get moving.
“Don’t let Shaggy out the door just yet!” I yelled, hands grasping my purse, my phone, errant water bottles, and as many snacks as I could find in the kitchen. I stepped onto the patio and watched as my oldest son, Owen, partially opened the gate.
Sensing his freedom, Shaggy pushed between Owen and the door and nosed it fully open, then ran toward the street.
“Owen! Why are you so _______?” I screamed frustratedly.
And the word I had raised my kids to believe was so terrible—akin to the worst swear word anyone could say—effortlessly rolled out.
Almost as if time slowed, I saw the word unfurl from my mouth in incremental seconds: Stuuu-piddd. Yes, I said it. I told my son with Down syndrome he was stupid.
My daughter, Tess, glared at me. “Any one of us could have made that mistake,” she pointed out flatly. “Not just Owen.” She turned and reached for his arm ever so gently, locking it with hers, and they walked side by side to the car. Shaggy had reached the end of the driveway, and I grabbed him, desperate to get him contained. He’d had so many escape-artist moments over the years, with negative results to both him, others, and our family. My thoughts flashed back to when he ran out and threatened a passerby with bared teeth and a low growl, his appearance a cross between Doberman and German Shepherd, which would be frightening for anyone. So many apologies were given to neighbors and friends, assuring them he wasn’t a bad dog; he was just being protective. Every day he perched on the couch in the living room, his eyes watchful, his bark beginning as a low rumble, the full force of it directed at the dogs who pranced onto our lawn and marked a spot, arrogantly glancing his way. All day long he raced from the front door to the back door with an incessant bark that hurt my ears. I was on constant alert when the mailman came. Any delivery person who came close to our door and heard Shaggy’s bark immediately left the package and sprinted back to their truck rather than wait for the required signature.
At the car, the kids were silent as they piled in. Shaggy was wild, unwilling to jump in until I lifted his legs and he was forced to climb in, as if he knew change was brewing. Slowly driving away, I watched as a couple entered our house, lovingly holding hands.
The woman shot the man an understanding glance as if just catching his joke, then threw her head back in laughter. As I drove around the neighborhood, my stomach curdled, and the tension in the car was palpable. Owen wouldn’t look at me, and my shame made it unbearable to look at him lest I glimpse a painful reflection of myself in his eyes. I circled the neighborhood again, having no intended destination, until finally coming to a stop at the park near our house. This house showing could take fifteen minutes or an hour, depending on how interested the couple was.
My daughter finally broke the silence. “You’re so busy posting how much you love Owen on Facebook, but maybe you should tell everybody what you really think of him.” Her tone was defiant, and I fought back tears as her chastening echoed through my soul.
“I guess this is a lesson to you that not everybody’s life is perfect on social media, including mine!” I retorted. More silence ensued.
I glanced at Owen, not sure how to repair my destructive mistake, so I started with the words I knew he needed to hear.
“I’m sorry, Owen. I’m so sorry. I didn’t mean to call you that.” His eyes began to blink faster, and even as I knew he was going to cry, he valiantly tried to hold in his tears.
“You always say things . . .” His words trailed off, and I cringed at what he’d not said but felt. I knew he meant to say, “. . . like that.” I had actually never used the s-word in relation to Owen before, but I frequently acted annoyed or frustrated, urging him to hurry up, to stop getting distracted, and to move faster. The word slow came to my mind often, and even though I never said he was slow, I wondered if he knew that word lived in my unspoken language. Owen was so intuitive. My tone was constantly on the verge of yelling, as if by raising my voice he would heed what I was asking. I hadn’t realized he was listening to my tonal cues and internalizing them as much as my other kids did. Big, fat tears started to squeeze out of his eyes, then slowly slid down his face.
“Owen, please know that I didn’t mean to call you that word. I was trying to make sure Shaggy didn’t get out and hurt anyone.”
“He wouldn’t hurt anyone, Mom,” Owen assured me, his shoulders rising and falling with each wave of a sob. He cried hard for a moment as he always did, but the storm was sure to lift—as it always did. I thought of his response to me and how he seemed to inherently understand our dog more than I did. My unease came from the few times Shaggy had come dangerously close to nipping at our friends. These same friends were now verifiably terrified when they showed up to our house. Owen looked at me, but there was no anger or judgment evident, only a deep well of truth radiating from his eyes.
“I love you, Mom,” he said. Immediately, the shame I felt was now bathed by the glow of his unfiltered love. I was once again reminded of Owen’s inability to hate or hold a grudge. I knew I would be the bearer of my own guilt for crossing the line that I had always set for myself, not my son. The regretful word was on a loop in my brain, and I didn’t know how to make it up to him, or to any of my kids. I recalled my childhood memories, certain that among the echoing voices of parents, peers, and siblings, I had been called stupid at some point too. “Hurt people hurt people” was a phrase I’d read recently, and it had stuck in my mind ever since. I knew I was perpetuating the same cycle of childhood trauma. I recall having a sense of how tough my growing-up years must have been for my mom, who, while raising nine kids, constantly refereed fights between the siblings, planned and prepared meals daily, purchased clothes and shoes while sacrificing new threads for herself because we grew like weeds, and made certain we stayed in school. How had she gotten through it? And how was I failing so badly with my tribe of three? Perhaps I was finally experiencing the humility that inevitably occurs while raising kids. I thought I was good at it—even better than some—but at the end of the day, I was no better than my worst moment of parenting.
I didn’t dare tell anyone about my parenting fail until a week later, when I spoke candidly with my friend Jen, whose daughter, Ava, also has Down syndrome. Owen and Ava had created a special bond over the years, and we had planned a date to meet up.
Jen and I spoke quietly a short distance away from them as they chatted. My bottled-up confession came pouring out, and I felt the searing shame pierce me again as I told her what happened. She looked at me with no judgment.
“Don’t worry,” she said conspiratorially. “I’ve said it too. Do you know why though?” She paused but I didn’t answer. I needed to hear her confession in order to feel somewhat human again.
“Because we expect Owen and Ava to know better. We are not giving them a hall pass because they have Down syndrome. You’re not the first parent to say something you regret to your child, and you won’t be the last.”
I chewed on her words for a moment as I watched the afternoon breeze ruffle my son’s hair, his smile cajoling a conversation out of Ava as she preened in her new bathing suit. I knew my choice of words was wrong—that was apparent—but Jen was right. I expected Owen to know better—not just in that harried moment before the house showing, but in other situations too. I inherently knew he was smart. Although Owen didn’t deserve the overly reactive verbal berating I dished out, I was sure that he was aware of appropriate actions and did know better.
I often think of the early days when my son was a newborn. Being my first, it was like Christmas morning every day. I couldn’t wait to wake up and snuggle his tiny limbs, kiss his round, pudgy face, and watch his eyes roam the room, searching for invisible delights that made him point at the ceiling. I had a theory that he was watching spiritual beings as he laughed and clapped. One time, he fixed his gaze intently on a bottle of wine as I slowly poured a glass. Erik and I joked that he was an old soul who had lived during the Renaissance, eating and drinking among the royalty. Maybe I wasn’t far off. Owen was my prince, and he would grow into a king one day. Every night for many years I told him as much when I knelt by his bed, watching his body morph from a baby into a toddler. He always fought sleep, and I recall hearing the click of his pacifier as he sucked it vigorously to soothe himself.
When his breath slowed, the pacifier would fall out of his mouth and he’d lay there, arms flung straight out as if he were waiting to receive a blessing. Those nights I prayed over him as he drifted off, halfway between wakefulness and sleep, my words were both a fervent prayer to him and to God.
“You are going to do great things one day, Owen,” I’d whispered over and over. “You will change the way people think.” Little did I know the peaks and valleys I would go through to arrive at the very same conclusion as he rounded the curve into adulthood.
