Life Upside Down – a guest post by Cary Denault

“Your baby has Down syndrome.”

Those five words changed my life. I was in the hospital, deliriously happy after giving birth to my firstborn son, when a pediatrician came in to break the news. I’d never met him—he happened to be on call at the nearby pediatric center—and I’ll never forget the look on his face as he sat down. He said that my son had a genetic disorder. That there was no cure. That he was deeply sorry and would do all he could to help me get through the next few days.

He was as kind and compassionate as a doctor can be when turning your whole life upside down.

To say that I was shocked is an understatement. All my prenatal tests had come back normal, so I was expecting a healthy baby boy. And that’s what I thought I had. I mean, the cord had been cut. The nurse had smiled, cleaned him up, and let me hold him. I’d kissed his sweet little face. Nothing had seemed out of the ordinary.

Disabled? Could it be true?

I didn’t know what to say or think or feel. The edges of the room blurred. My focus narrowed in on the doctor’s voice as he spoke of blood work, genetics, and something about an extra chromosome. I heard all of it, registered its meaning. But the deliriously happy had slipped away. In its place was an aching concern, coupled with fear of an unknown future.

All because of five words.

The fear didn’t stop me, and in spite of my worry, I was determined to do the best I could for my baby. But Garad (pronounced JARE-uhd) made things challenging right from the start. Less than 24 hours after being born, blue spells and a heart issue had the doctors rushing him to a bigger hospital (one with a Neonatal Intensive Care Unit) by ambulance. There, he stopped breathing and had to be resuscitated. The specialists kept him in NICU for ten days—pretty much the longest ten days of my life. Then they attached him to a heart monitor and let me bring him home.

While his heart was being carefully tracked, mine was a total wreck. I hardly left his side. Not knowing if he would live or die, I kept him in my arms day and night. He would noticeably fixate on me whenever I sang to him, so I sang all the time. We spent hours in an old rocking chair beside his crib—me singing, him watching me sing. The poor kid got to hear every nursery rhyme and classic country song I knew. But he didn’t mind. Even at a few weeks old, Garad was incredibly responsive to music.

He was also responsive to the sound of my voice. Whenever I spoke, he completely focused on me. The case manager from a local special needs agency told me she’d never seen anything like it. We had a strong connection, she said. As it turned out, we needed one, because he didn’t talk until he was three years old. We got by using sign language and a whole lot of intuition.

Even after Garad started speaking, though, he had trouble getting his point across. He just couldn’t express himself very well. He kept his emotions bottled up inside, leaving others to guess at what he might be needing. If they guessed wrong, he would have a meltdown. The strong connection I had with him made it easier for me, but his interactions with other people became increasingly unpredictable and aggressive.

As he grew older, the behaviors escalated. School and daycare were really tough for him. I’d also had another baby and remarried, so he had more people to deal with (and less of my attention) at home. I made the decision to put him on medication. It took the edge off, but didn’t make him any less unpredictable. Risky behaviors emerged. He jumped fences, bolted into streets, touched hot stove burners. The babysitters we hired couldn’t keep up. That’s when I quit my job to become a stay-at-home mom.

For me, this was the ultimate life upside down. I’d been working jobs since I was fourteen. Not earning an income felt weird. Being surrounded by children all day without a break felt even weirder. My first stay-at-home summer drove me nuts. We’d also moved to a small town for a quieter lifestyle, and Garad wasn’t adapting to the school system. I had to pull him out and homeschool him. My other kids saw this and wanted in on the fun, so I said ‘okay’ to being a mom, fledgling writer, and full-time teacher of three. I’d never been more upside down in my life.

But here’s the thing. You know what’s cool about being upside down?

The view.

Upside down, you get a completely different perspective. An uncomfortable one at first, with all that blood rushing to your head, but you get to experience the world in a new way. And after a while, I began to appreciate it. I found myself cherishing the quirky, upside down things. Like how Garad would hug anyone, even strangers, and make them smile. Or his funny habit of nicknaming teachers after food (we worked with Miss Cinnamon Roll, Miss Salad, and Miss Broccoli). Or the way his connection with me was so strong, he’d wake up ten minutes after I did, no matter what time I stumbled out of bed (thank God for coffee). Life was interesting, that’s for sure.

I sometimes stop and wonder what kind of person I’d be if the view had been different. You know, more right side up. Maybe I’d have turned out okay. Maybe, though, I’d have been someone with less compassion and a narrower perspective, who continued her career and never got the chance to blog, write, and sing a million songs to her little boy.

“Your baby has Down syndrome.”

Those five words changed my life. Radically. And guess what?

I wouldn’t have it any other way.


More about the guest

C.L. Denault is a speculative fiction writer who loves dreaming up tales of adventure and intrigue. Her debut novel, Gambit (read my review), was released on March 31, 2015 and is the first part in a Young Adult dystopian series.

Cary graduated from the University of Central Missouri with honors and a degree in Computer Information Systems. However, she was prompted to leave her career as a system analyst behind in order to stay home with her children (including a son with special needs). Currently, she can typically be spotted in Illinois, usually in some obscure, shadowy corner of a hip coffeehouse, or at home.

Cary loves to connect with people (especially those from other planets, dimensions, and the future). To find her, you may visit The INFJ Café. Or use a Stargate. Whichever is easiest.

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Shealea

First of her name. Queen of millennials and the constantly caffeinated. Protector of books. Breaker of norms. Iskolar ng bayan.

3 thoughts on “Life Upside Down – a guest post by Cary Denault”

  1. Very well written, thank you for sharing this guest post. When I was 17 my cousin (a special education teacher) invited me to volunteer at a camp for young adults with special needs. Up until that point in my life Down Syndrome, Autism, and Cerebral Palsy had a very minor impact on my life. I saw people affected by them, felt sad for a little while, and then continued on with my life. But attending that camp changed my life. People who are dismissed by society because of their perceived disabilities usually have more appreciation for the miracle of just being alive than people whose bodies function “correctly.” People with that kind of joy in their hearts are an absolute pleasure to be around, and now, seven years later, I look forward to camp week every summer. It’s the best week of the year. Thanks again for sharing this, great post.

    Liked by 1 person

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