Then It Became Personal: A Testimony by Laura Feiler

That’s so “retarded.” You’re such a “retard.” Retard… one of the few words that physically hurts me when I hear it. My heart aches; my stomach clenches; my eyes sting. It always takes a beat before it registers; did someone really just say that? As a special educator, I especially hated that word. Then 8 years ago, it became personal.

The time to give birth to our second son was here. I remember back to those days where my only worry was having 2 kids, and how I was going to be sleep deprived and still have to get my older son off to preschool. Even when I went into labor the day before Easter, I kept thinking, with a twinge of sadness, that our older son would celebrate Easter without us. Searching for eggs and his Easter basket… the rituals of the new beginnings that spring brings. Little did I know, the newest beginning of them all was nearly upon me.

As I lay on that table, exhausted from 32 hours of labor and 4 hours of pushing, I birthed our son into this world. And all I heard were whispers. All I saw was a bunch of people standing over our brand new son. My husband went over to meet our baby and came back to me and I will never, in all my days, forget the look on his face. I cannot describe it in words but it is etched into my memory. If I close my eyes, I can see his face so clearly… even he could not say the words to me. I begged him to tell me what was wrong and he kept telling me, “Nothing’s wrong… nothing’s wrong.” But his face told me he was lying. I think he was trying to protect me. Let me hang on to the last few seconds of thinking that my biggest worries were two kids, sleep deprivation and getting our older son off to preschool.

I finally cried out, “Will someone please tell me what’s going on?” And a nice NICU nurse came over and in a sing-song voice told me, “I feel like we’re talking to everybody else in the room but you!” I remember feeling so annoyed because she was so cavalier, like she was asking me if I’d like to go get a cup of coffee. I knew she was going to rock my word and here she was, so upbeat. Truth be told, I don’t think there would’ve been any right way to share that news but in that moment, the irony of upbeat and soul-crushing was too much to bear. Then she finally said the words, “Your baby has some markers that lead us to believe he has Down syndrome but we have to run some tests to be sure.” Someone finally said it. And I went numb. I think I said, “Ok, ok, ok…” about fifty times. A mantra of sorts. Ok, ok, ok. I couldn’t think, but I could feel. And all I felt was fear.

They told me our son had Down syndrome before I even held him. Before I even saw him. Did he have hair? Did he look like his brother? Was he short and chubby? Was he long and lean? Were his eyes closed or open, taking in the world? They handed me a diagnosis, and not my son.

All the fears, all the stereotypes, all the worries. What would his life be like? What would our life be like? What would this do to our older son? The unknown terrified me. I could only see Down syndrome. I could only see what I thought he would not be, what I thought he would not do.

And then, it seemed his birth day wasn’t done with me yet. His oxygen was low and he was taken to the NICU; they heard a heart murmur and ran some tests. When they escort you into the parent room, you know they’re going to rock your world again. And when the lady opening the door for you has a “Your Child Has a Congenital Heart Defect” booklet in her hand, you know that your life will never, ever be the same. Our son was not even 20 hours old when they told us he had 3 holes in his heart and something wrong with his valves and would need open heart surgery as a newborn. More fear.

I remember that night, sitting in the corner of the NICU, with the curtains drawn all around us, telling my husband, if we could stay like this — all of us tucked safely away from the world — that we would be ok. And it was in that moment, rocking our son in that safe little corner of the hospital that I saw him. Really saw our son.

Those hours gave way to days and weeks of getting to know him — Ian. As he began to unfold himself to us, I got to know our son. I would look at him and say, “You. Are. Ian.” I realized that I did not have a “baby with Down syndrome”… I had Ian. I could have never known in those early days that he would give my life even greater purpose, perhaps its greatest purpose.

He makes me want to move mountains for him, to show the world — HE IS IAN! He is fun and funny and smart and capable and loving and full of so much joy! He is not a label. He is not a stereotype. He is not defined by an extra chromosome. He is not scary.

But when people use the r-word, they instantly dehumanize our son. They make him a diagnosis… something scary, something to be afraid of, something different from them. I know that fear. I lived that fear in the beginning. And look at what I have now that I know him… I have Ian and all his glorious lessons on life and love and perseverance and what really, truly matters.

When people use the r-word, they make our Ian “less.” And when you do that, you miss out on meeting one of the most incredible people you’ll ever know. You miss out on seeing the person. What would happen if others started to see people, rather than a diagnosis? Rather than a stereotype? Rather than someone “different”? What would happen if people started seeing people for who they are and not for what others think they are not? Would they see a future co-worker? A friend? A classmate? A roommate? A neighbor?

Words matter. They have the power to uplift or crush. They can empower or dehumanize. They can instill confidence or fear. I know. Because the words “Down syndrome” brought me fear in the beginning. Until I saw our son, until I knew him. And when someone uses the r-word and makes him “less,” they miss out on his light. His light that illuminates all darkness; his light that has shown me the way. He makes everything wrong, right; makes everything sad, happy; makes everything hard, worth it. See his worth. See that words matter. See that words have power. See him. See our son. He is Ian.