On Learning My Son Had Down Syndrome

Down syndrome

I feared he would be bullied, that he’d be an outcast. I didn’t know exactly how to help this little spirit, but I knew I would protect him, come what may. 

Down syndrome. The words were a punch in the gut, a shattering of the heart, a cold arrow shooting down my spine.

Down syndrome. Until that moment, my son had resided in my mind’s eye as an amorphous little miracle buried deep in my partner Valerie’s belly. But now that his tiny body had been pronounced as Down syndrome, a thousand images flashed in my head. Corky from “Life Goes On.” The little girl in my 5th grade gym class who made me uncomfortable by constantly seeking out hugs. A woman I once partnered with at a volunteer respite job who, to my horror, expected me to wipe her butt after she went to the bathroom.

“He’ll be an outcast,” I concluded. My previous dreams for him were quickly dismantled and now replaced with short buses and special education classes buried in the basement of a high school. He’ll only see the light of day for lunch and gym.

“They’ll make fun of him. My son. They’ll bully my son.” And, with that horror in view, my spine began to straighten. A new image emerged, in vivid color and bold detail. “Not my son,” I whispered, and I pictured my 250-pound lesbian frame crashing into a schoolyard, into a group of would-be bullies, and sending them flying sideways and backwards like bowling pins falling after the perfect strike.

Not my son,” I resolved.

I’d pondered the life of my child as outcast before. I grew up with few close friends, often the target of teasing. I knew the terrible loneliness of a childhood spent as the other. And for years, I worried that raising a son—I have always pictured myself with a son—in a lesbian-headed family would do just that: create a child who was different in a way that would incite cruelty in his peers. For years I wondered if it was fair for me to become a mother, to make my son so different, to make him incur the wrath of the homophobes.

In time, I understood the fallacy of this fear. I was on my way home from work, just off Chicago’s red line el, standing at the corner of Broadway and Berwyn, my computer bag slung over my shoulder, staring at the concrete, ignoring the cars and pedestrians around me, thinking, thinking, thinking, traversing the familiar and fearful path. “I want a son. But is it fair?” Always, my answer had been a maybe, a but, a dangling participle with no object.

But finally, the epiphany came, not in the form of an eloquent bible verse or quote from the Dalai Lama, but with coarse words befitting the graffiti and pigeon droppings that surrounded me.

Why would you want him hanging out with a bunch of assholes anyway?”

And there it was, my moment of absolute clarity. Fear melted, never to return. Being a lesbian would actually work to my advantage. Instead of having to cull through my son’s friends and attempt to spot the bigots and the bullies, the no-good would just self-select themselves out of my son’s life. So he would be scorned by a bunch of assholes? Fine.

But that was when my son was just an idea, discussed endlessly by Valerie and me. Before the early days of Valerie’s pregnancy, when we dreamt of the future for that little one taking form in her belly. Maybe he would be a veterinarian and take care of our considerable menagerie. Or he would be an archaeologist—neither Valerie nor I would ever go to him, as our parents came to us, and insist that he major in something more practical. He would radiate happiness. He would be everything that my own life circumstances had prevented me from being.

But now he had Down syndrome. The magnitude of his life circumstances bowed me. But still that spark, fanned by the image of the playground mayhem I would wreak on those who would hurt my son, stayed lit. I didn’t know exactly how to help this little spirit, but I knew I would protect him, come what may.

We named him Bobby. We named him after my brother who was strong and kind and gentle. A good man. And by the time Bobby came to us, I was reconciled to the belief that all that mattered was that we raise Bobby to be a good man. Just a good man.

It wasn’t the sort of reconciliation that comes from an epiphany—there had been no moment where my worries melted away and I saw the truth of life laid out before me. It was a whack-a-mole reconciliation where I used a club to beat my fears into submission, where I stood still, body tense, waiting for a misgiving to emerge from its hole. Ready to club it in the head. I didn’t feel like a good mama, with my fears of Bobby’s Down syndrome running through my veins, but I would be a good mama just as he would be a good man. I would will it.

And in reality, I no longer had time to worry about Bobby being bullied or made into an outcast. My son came to us with a broken heart that required three open heart surgeries in three years. Concerns about development became trivial as our energy went toward keeping him alive. When his lips turned blue from lack of oxygen, I quit worrying that he would slur his speech someday. The numbers that mattered were the ones listed on his heart monitor—not some standardized test lurking in his future. I watched my son go in and out of the hospital again and again, with more resiliency and dignity than I surely could have mustered. My son was a fighter and a survivor. And I admired him and loved him more with each breath.

And my fear for him multiplied. No doubt there were many who cooed over his winning smile. Who admired the blond hair that fell into his eyes. Who celebrated his every milestone. But in my mind, I also heard the whispers of retard, waiting for him. Waiting for us. He was not going to have the physical strength of a fighter, nor my acid tongue. Hate was a wave headed for his shore, and Bobby could do nothing but be swept away. Unless I intervened.

Now 6, Bobby calls me Ma-Ma-A, in perfect cadence every time. He is still my prince and I ache with my wanting to protect him from the pain of life.

Sometimes I have to take deep breaths when Bobby is around other children. Bite my tongue. At the Children’s Museum, a larger boy came to the exhibit where Bobby stood, an exhibit where you could watch yourself on a TV screen. The boy rudely pushed Bobby aside and anger filled my heart. I shifted myself so that my considerable girth blocked the camera, preventing the rude one from enjoying his victory. Only after he protested did I realize that Bobby had just moved on to a new station. Embarrassed, I followed.

Another time a boy was purposely and continuously undoing Bobby’s work on an exhibit. Bobby patiently started over each time. For my part? I glared at the boy’s father, my best and most scathing look, until he was finally shamed into stopping his son.

And finally, in the most glorious of moments, there came yet another day when a big kid—several inches taller and 20 pounds heavier than my son—tried to take over Bobby’s space. Tried to push him out of the way while his father smiled, smug. I rose up, ready to intervene, but Bobby beat me to it. He stuck his elbow in the bully’s chest and pushed him backwards. It was my turn to smile at the father.

I know these children are too young to pick on Bobby because of his Down syndrome. He’s just small and in their way and they overwhelm him. I know not everyone is the enemy, even when they do understand about the Down syndrome. I was thoroughly charmed the day five neighborhood girls surrounded me as I took Bobby for a stroll. They peppered me with questions, obviously having noticed Bobby before and certainly having discussed his differences. “Why are his eyes slanted?” “Why does he talk funny?” “Why doesn’t he ever come over to play with us?” The last question was as important to them as the first and so I did my best to explain. Finally, they nodded, satisfied, and rushed off to solve a new mystery.

I work hard at looking for the good. The welling up with anger is not good. I know it’s not good. But then again, I am not about to spend my life explaining my son so that others treat him with respect, just as I don’t waste time explaining my marriage to a homophobe. I often feel like embracing the people who accept us and for the rest, well, I would never fool myself into believing that bullies are monsters under the bed. They exist.

And just as I know that Bobby will never be completely safe from the bullies, I hope the bullies realize they are never quite safe from me. I make no promises about bowling for bullies.

Anne Penniston Grunsted is a Chicago-based writer who focuses on her experience with disability (her son has Down syndrome and she lives with mental illness) and parenting. She has published in Chicago Parent and won the 2014 Nonfiction prize from Beecher’s Magazine. She lives with her wife and son in the Uptown neighborhood of Chicago.

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