THE BLOG
04/07/2013 12:07 pm ET Updated Jun 07, 2013

Love, Loss and a Surprise Diagnosis: What I Learned From the Birth of My Son

The first time I saw the two blue lines on the pregnancy test, I bought a scrapbook. It was April 2010, and we were going to my mother-in-law's 60th birthday celebration that weekend. I decided I was going to make a grand gesture: I would fill the first page of the scrapbook with a poem about giving her the best gift of all: Her first grandchild. I was giddy.

But when I went in for an ultrasound just two days before we were to leave town, all that was there was a hollow black hole. The baby, the doctor said, hadn't developed properly, even though my body was telling me everything was fine. An anembryonic pregnancy, she said; I would likely miscarry sometime in the next few weeks.

"You can try again," she said and patted my leg.

I spent the celebratory weekend quiet and exhausted, my body still foolishly believing that it was creating life instead of carrying around a useless sac that would eventually have to be extracted because it stubbornly refused to go on its own. I took the scrapbook I had purchased, shoved it to the back of the hall closet, and tried to forget about it.

When I saw those two blue lines again, an arduous year and a half later -- a period that spanned a job loss and the death of my father-in-law -- I made a silent plea to whatever spiritual being might be overseeing the machinations of my little world: Please, let us have something good happen for a change.

At ten weeks pregnant, I woke up bleeding and terrified. We rushed to the doctor's office and there on the ultrasound was the good news I had asked for: a small bean-shaped being, already rolling over in my womb. My husband put his head in his hands and cried. I put my hand on my stomach. Thank you, I whispered.

Still, I wasn't convinced we were out of the woods. At 12 weeks, when my husband wanted to tell our families, I held my breath and said OK, even though I feared what would happen as soon as the words were out of my mouth. At 15 weeks, when I felt the first little flutters of movement, I breathed a small sigh of relief, but I counted those movements religiously, much earlier than I should have. At 24 weeks, I acknowledged that, if born, the baby would likely survive, but I still refused to buy anything for the nursery. I prefaced every statement about the baby with "if everything goes all right."

It wasn't until the baby, a boy, came squalling into the world one Tuesday morning in July that I finally felt like I could relax. After a long and difficult labor -- 32 hours with no drugs and no sleep that finally ended in a c-section -- my son, whom we named Atticus after Harper Lee's amazing lawyer and Allen after my amazing father-in-law, was born, and he was perfect. At that moment, my child finally became not just part of me anymore, but wholly himself. I was thankful, but more than that: I was relieved.

Those first hours after Atticus was born were wonderful. My husband and I marveled at him: How had we created something so incredible? How had my body known how to assemble his tiny skeleton, to string it with muscle and sinew, to thread it with veins and to fuel it with the tiny fist of his heart? I had never known such wonder or such joy.

When the nurses took Atticus to the nursery a few hours after his birth because his temperature was low, it didn't occur to me to be afraid. The worst is over, I thought. The baby is safe and healthy and so am I. Even when a nurse entered the room with a doctor who introduced herself as a neonatologist, it didn't trigger an alarm. I was so filled with happiness I could not prepare for what was coming.

"We think Atticus has Down syndrome," she said. I remember sitting in my hospital bed, my legs still numb from the spinal, holding out my hand and my husband crossing the room to grasp it. I only remember snippets of what she said next: details about how a 20-year neonatal nurse had first noticed the signs, like an extra fold at the back of his neck and two webbed toes on his right foot, neither of which we had noticed, and if we had, neither of which we would have cared about. I remember she said that the diagnosis was not confirmed -- it would take several days for the bloodwork to come back -- but that she was fairly confident she was correct.

"I hope I'm wrong about this, but I've never been wrong before," she said with a smile. There was no ego in that smile, only sadness.

When you have lost many things in your life, loss becomes a familiar bedfellow. I first felt it when my aunt died at age 37 of breast cancer. I was only 11, and it nearly crippled me, it so took me by surprise. By age 34, after losing jobs and babies and 18-year-old friends and fathers-in-law, you believe that you've had enough experience with it now that you are able to steel yourself against it. You tell yourself that the next time it appears, you'll be strong enough to say, "Hello, old friend. I've been expecting you."

It took a moment after the doctor left the room for me to bear the full weight of this new loss, and when I did, it didn't feel familiar at all. This pain was so raw and new and terrible that I couldn't speak. My husband collapsed to the floor next to my bed and cried. The only other time I'd ever heard him cry like that was when he lost his father. It was only when I realized what he was going through, this man who had just lost his father and who now in a way felt he had lost his son, that I was able to put my arms around him. I wished there was someone to hold us both up, but our families were hours away. We had to deal with this on our own.

I thought of everything I'd imagined Atticus would be: big and strong, smart and athletic like his dad, bookish and writerly like me. In that moment, I believed that his diagnosis meant none of those things would come true. The vision I'd had for my son's life had been destroyed, and in its place was -- what? I didn't know. I knew very little about Down syndrome, but what I did know made me incredibly sad -- medical problems, developmental delays, ridicule from children, shunning by adults. The thought of it broke my heart, and the pain was so real that I clutched my chest and cried.

A few hours later, I wiped my tears and went to visit my son. Even though he was breathing through an oxygen tube and his skin dimpled with electrodes, he gripped my finger with surprising strength. When the nurses put him in my arms, he sucked down a bottle, nestled into my shoulder and drifted off into an unapologetic, open-mouthed sleep. At that moment, I realized he was more like typical babies than he was different from them, but most importantly, he was mine. The desolate, isolating grief lifted, and I realized that we would have many more moments like this. Yes, we would have moments when his diagnosis would overshadow everything else, but the majority of his life would simply be this: me loving him, and him loving me.

Atticus is now almost 8 months old, and my prediction has proven true: He is more like other babies than not. He smiles and laughs, he plays, he is ridiculously proud of himself when he stands up and jumps in his Jumperoo. Yes, he still has Down syndrome, but I know more now than I did then. What I know makes me realize that we can count ourselves among the lucky ones: So far, we have avoided many of the major health problems associated with DS.

But, we still have our challenges. We have doctor and therapy appointments every week. I struggle with resentment when other babies reach milestones before he does. I get unnervingly angry when I tell someone that Atticus has DS and then that person can't meet my eyes because they don't know what to say to me. I bristle when I hear the word "retard," and then I tell myself to get a grip: There are more important battles for me to fight right now than that one. And yes, my sadness that he will not live the life I envisioned is still an undercurrent in my life. I expect that, in some way, it will be with me always, but it has lessened, and it is bearable. The losses I have already experienced and the tremendous hardships I've watched others weather have made me understand how much, much worse things could be than this. They have helped me see the good, and I am thankful for that, because there is so much good to see. I have also realized that while Atticus may not live the life I imagined, with my help and my husband's, he can and will live a great one, filled with all of the love and success and happiness that he is capable.

But most of all, what makes it bearable is my dear, sweet boy. I no longer tell myself that he is perfect, because he is not. None of us are. Atticus is deeply flawed: He screams like a banshee and gets horribly chapped cheeks and pees routinely on the nursery wall. But he is flawed in such beautiful, strange, and awe-inspiring ways that he's far better than perfect. I am utterly captivated by his imperfections, because they make him that incredible person, wholly himself, that I instinctively knew he was the moment I gave birth to him.

I watch him as I write this: He is babbling over a toy; he yells, he laughs. He turns his head as the dog passes by, impishly opens his mouth when she licks his face. He smiles at me, shakes his rattle and rolls onto his back, his feet in the air. This is not a scene where "Down syndrome" is the star, featured in neon lights. It's there, of course, hovering backstage, but it doesn't even have a walk-on role.