To Myself on the Day My Son Was Diagnosed With Down Syndrome


I constantly wish I could go back to that day. Sit down and talk to myself when I first heard the words “Down syndrome.” When the blood test came back, and then the amnio. I remember the gut-wrenching feeling like it happened just this morning. I was at work; it had been days since they drew the blood from my arm that would change the course of my future. I remember being so mad tests like that took so long. With the way technology has advanced, why hasn’t blood work gotten any faster?

It was just a normal day. My belly had started getting in the way when I tried to do things. We knew he was a boy and his name would be Oliver. What we didn’t know was just how much that day would change us. I could hear the vibration of my phone on the counter. I looked down at the number; I knew it was the doctor. I answered the phone, and it was a nurse telling me the doctor needed to speak to me — and I already knew. If it were good news, the nurse would probably have just told me.

I could feel the hot tingles of adrenaline coursing through me, a sick feeling coating my stomach, but this time it wasn’t morning sickness — this was something else. Something life-altering, the end of the path I once knew. After what felt like hours on hold, he finally was on the other end. “I can’t believe I am telling you this, but the result is positive.” The doctor had tried to convince me not to do the blood test; he said I was too young, and one small, shiny spot on an ultrasound said nothing. He thought it would be a waste of time. I stopped really listening after that. There was something about an amnio and more apologies. I couldn’t even think. I just knew I had to run, I had to get out. I couldn’t breath. My boss could see it all over my face and he told me to go. I ran out the door, collapsed into the car and called my husband Joe.

I’m not even sure he could understand me through my sobs. I finally got the words out: “The test was positive.” He was calm, like he would be for the next few weeks — my rock, my positivity that always finds its way through the darkness.

During the 45 minutes I drove to get home, I did something I’ve never done before. I begged God to make it not true. I sobbed, “Please God, not my baby. Not my son.” I wish I could go back, be in that car with myself, and explain how unnecessary my fear was. There was no need to beg God for anything. I got home to open arms from Joe, and we told my mom the news. She took a deep breath and said, “OK.” It’s like she already knew — knew it didn’t matter, that he was exactly who he was supposed to be. She left Joe and me alone while I sobbed. He just held me and let me cry. I’ve never cried harder than I did that day. We hadn’t even had the amino done, but somewhere in the depths of fear and confusion, I already knew the truth. No matter how hard I denied it. No matter how many articles I read, calculating the numbers over and over again as to what percentage of a chance it would be a false positive. But the results came back, and we all know how that story ends.

One night after we knew it was real, we were sitting on our bed and I told Joe I didn’t want this life, that I wasn’t the kind of person who could handle it. And he just sat there and let me talk. He listened, kissed my belly and told me it would all be OK. I wish I could go back and be on that bed with myself to explain there would be nothing to be afraid of. That I could absolutely do this. That I was, and am, “that kind of person.” That I can handle so much more than I ever thought I could. That I would become an advocate for my child. That this diagnosis would change me in ways I never expected. That I am a better person for it.

Days turned into weeks, tears turned into preparation, sadness turned back into excitement. But it was always there in the back of my mind. Will he go to college? Get married? Have kids? Will he get made fun of?

I still have these questions, but I have realized something. Every parent asks themselves these questions. None of us know what our children’s futures will look like or who they will grow up to be.

So here I am now, approaching my son’s second birthday, and I write this letter to you, past self, and I write this letter for every parent who has gotten this diagnosis. I write to tell you the real story — what really happens after you get a Down syndrome diagnosis.

I wake up every morning to the biggest, bluest eyes I have ever seen. I wake up to my best friend. He’s tiny and loud and hilarious. He makes me laugh until I cry, and cry until I laugh. We get up and play and eat breakfast and watch his favorite shows. We run errands together and visit our friends and family. I tell him about my day, and he greets me with kisses after work. When the stars come out, we snuggle and watch “Bloop and Loop,” and I trace the outline of the most beautiful face I have ever seen.

I get the honor of watching him learn and grow and understand when things are funny, and laugh until he falls over. I get to watch him learn to crawl and stand and walk and applaud himself when he realizes he got it right. And I get to love — love more than I ever thought was possible.

I wish more than anything I could give you this letter, past self. I wish I could tell you not to grieve what you thought you lost, because you got something so much more. You have a child who teaches you grace and patience and kindness and strength. You are one of the lucky ones.

Image via Contributor.

A version of this post originally appeared on In His Own Time.

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