Never alone

By David M. Perry

Minutes after my son Nico was born, as he lay on the warming table, I noticed his eye was having difficulty opening. I asked Michelle, our nurse-midwife, if there was anything wrong. 

"No, his eye is fine," she replied, "but did you have any genetic testing done?" 

“No,” I said. This was true, not because of any philosophical plan, but because for various reasons we didn't know my wife Shannon was pregnant until we had moved past a lot of the test dates. The ultrasounds showed no troubles, anyway.  

Well,” she said, “he’s showing characteristics typical of Down syndrome.” 

My mind reeled, racing through images of people with Down syndrome. The word “retarded” flashed by. I immediately started imagining our life and wondered, “Does that mean we’re going to have to put him in an institution?” Later, my wife told me that her first thought on hearing the news was concern about his life expectancy. 

This was the moment, the birth of our first child, that should have been filled with elation. We had planned for it, dreamed of it, waited for it. But the words “Down syndrome” were so powerful and so negative that our minds turned instantly to institutionalization and death.

“What does that mean?” I asked Michelle. 

Michelle answered my question in the best possible way. She said that there was a big range of possibility, some risk factors, and also the strong likelihood of significant delays. I did not process this answer, not really.

“Should I tell Shannon?” I asked? Yes, Michelle said, I could.

Through classes and talking to doctors, Shannon and I both knew how things were supposed to go. After the baby is born, they clean him and wrap him and weigh him and make sure there’s no danger, then they give him to his mother. There are so many pictures and images of that perfect smiling moment: exhausted, the new parent and new person cling to each other. The baby, having taken his first breath, issues his first wail, a protest at having been extricated from the perfect home that is the womb. Nico was silent. Nico was not being placed on Shannon, and she sensed something was wrong. 

“Where is my baby?” Shannon cried. “Is he ok?” I mumbled something. “Is he ok?” she repeated. “He’s fine,” I said, “But Michelle thinks he has Down syndrome.” The words tumbled out of my mouth in a painful rush.

It was the first time that I said that my son has Down syndrome. I’ve said it so many thousands of times since, the meaning shifting as my understanding changed, from something that seemed so terrible to just a complicating fact, a fact intricately linked to the identity of my wonderful son. 

We have a picture of that moment, a moment when we first held our baby. I’m not sharing it. We do not look happy. But sometimes, I look at it, thinking back to those moments in order to see how far we’ve come.

The next few hours were not easy. We got to hold him, for what seemed like seconds, before they whisked him off to the special nursery. There was a phone call to my parents. There was a locked post on livejournal explaining our situation, to which I didn't permit comments. There were tears and anger and stages of grief. 

And then two things happened. First, I got to spend time with my son. He was covered with wires and tubes, but he was real, tangible. There was work to do. Here was a child who needed care. The presence of my son booted me from abstract to real. 

Then our community of friends and family, who had spent the hours since my late-night post learning about Down syndrome, kicked into gear. In those first bitter hours, among the more trivial of my dark thoughts was that the man we had asked to be Nico’s godfather wouldn’t want to be involved with Down syndrome. Perhaps I should let him off the hook, I thought. I felt ashamed of my son, of myself, of my thoughts. I wanted to hide. But our friends, including Nico’s godfather, were up to the task.

When they talked to me on the phone, when they came to see us, they said what you would say to any new parent: “Congratulations!” 

“Stop it,” I wanted to shout, “there’s nothing to congratulate us about! This is a tragedy. Lives are ruined.” 

But they were wiser, and stubborn, and just kept congratulating us. They came to visit laden with flowers and champagne and chocolate cake and presents. They showered us all with love. They told us our baby was beautiful and cooed over him. Together, my son and my friends carried me out of the first shock of grief. They shifted my perception so that I didn't see just a bundle of symptoms and potential problems, didn't just see a diagnosis, but instead saw my wonderful boy.  

By the end of the second day, Nicholas successfully latched onto his mother’s breast and nursed. We’d been told he probably wouldn't be able to nurse, that his jaw would be too weak, that he might need a direct tube in his stomach, or to be fed via a tube inserted down his nose, and all sorts of other things. But he nursed. And for the next four days, we’d be back in his room every three hours, providing a kind of rhythm to a life that so quickly became our normality. 

We transitioned from mourning to the joys of parenting thanks to the presence of a real boy for whom we could care and love, while being surrounded by a community that rallied around us so marvelously and so stubbornly. I’m still grateful, because those joys are immense.

But when I think back to that moment when my son was born and I heard the words “Down syndrome,” there was only grief. Fear. Ignorance. I was incapable of rational thought.  

Imagine being given that news over the phone in week 16 of a pregnancy. 

In the prenatal context, there’s no child to care for, to love, to nurture, and to see as something real. There’s no child around which the community can gather, praise, tickle, focus on. There’s just this diagnosis and a shape on an ultrasound machine. That shame we initially felt in the hospital, the desire to hide, was only countered by our friends showing up at the hospital with their powerful words and love.  

Absent powerful support structures—spouses, family, friends, faith, whatever it takes—how is someone supposed to get through that?

This is why community, correct information, and representation matter so much. It’s why we need to change the meaning of "Down syndrome" from something that's filled with fear and grief to something filled with the possibility of joy.

Sometimes people ask me what we would have done with a prenatal diagnosis of Down syndrome. I tell them that I can't answer that question. There’s no way for me to put my mind back into the state of ignorant abstraction prior to meeting Nico. Statistics suggest that I might have advocated for an abortion. Then again, we would have been alone, without community, without concrete knowledge of what life with Down syndrome is really like, good and bad. 

That's the goal of the work of so many writers, organizers, and activists—to let people know that we aren't alone, that the birth of a child with Down syndrome may come with a long list of worries, but also deserves congratulations, and can lead to a laughing boy sliding down a waterslide into the waiting arms of his sister (or whatever your life may bring). 

There are no guarantees in life, no matter how many chromosomes you have. We'll have many more obstacles to face. Some will make us weep, surely. And yet, we won't be alone. 

David M. Perry is a professor of history at Dominican University who writes about disability and related topics on his blog How Did We Get Into This Mess? His essays have appeared on CNN, The Atlantic, and The Nation. Follow him on Twitter @Lollardfish.