My Son With Down Syndrome Needs Me to Stay in the Present

After receiving the news while pregnant that my son Cody had Down syndrome, the best advice I received was to not fast forward into the future too much. It was OK to go there, but I was encouraged to quickly get back to the present. That was especially good advice to hear during that traumatic time as I battled fear of the unknown. I had no idea what to expect raising a son with Down syndrome, and it was easy for me to craft a future in my mind full of all my fears and uncertainty. I would speculate and assume my upcoming years would be full of gloom and negativity and worry and unhappiness.

I know now this is not the future I will experience. If I hadn’t taken the advice to stay focused on the present, I would have wasted so much time surrounded by false worry. You can’t control the future, you can’t predict it and it usually doesn’t end up as bad as where your mind takes you. I have to constantly remind myself of this.

Cody’s heart surgery at 4 ½ months old fixed the majority of the issues with the holes in his heart, but he still has a leaky valve. Cody sees his cardiologist once a month to make sure everything looks OK. He’s also on medication three times a day. For 29 days of each month, I don’t even think about Cody’s health problems. But once a month, I have the brutal reminder that his body is not functioning as well as we would like. My time at the cardiologist is always full of questions. Most are questions the doctor doesn’t know the answer to. Is he going to need another surgery? How will these issues affect his growth? Will he be able to do any physical activities because of his heart condition? The doctor also reminds me to not get ahead of myself, “Stay in the present. If we have to take any other action we will deal with that when it comes. For now, he is fine, enjoy him. Don’t miss out on how great he’s doing now by drowning in the unknown.”

Although I feel less worried about having a child with Down syndrome than I did in the early days of Cody’s diagnosis, there are still so many questions, and there always will be. How old will he be when he walks? How well will he talk? What will his schooling look like? Will he ever be able to live on his own? Will he have any more health issues? These are all good questions, but why dwell on them now when the answers are not there?

Too often I stress about a future we cannot control or predict. I’m striving to focus on the present. The present is raising a little boy who is full of life, full of happiness and motivated to learn and grow. What he can and cannot do in the future doesn’t matter. It’s what he’s doing today that brings me joy and happiness. This is what I must embrace and relish.

I don’t want to miss the wonderful moments with my happy baby who is full of smiles and energy. So I try to worry less about tomorrow and find reasons to enjoy today. Fixating on an unknown future will rob me of the joy the present is offering us.

Follow this journey on Growing With Cody.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Down Syndrome

A baby boy with Down syndrome lying on the floor on top of a blue blanket during tummy time

Down Syndrome? Bring It On!

After a beautiful water birth, my baby was scooped up into my arms and my husband was excitedly declaring, “It’s a boy! It’s a boy!” Pure elation overtook me and tears of joy came streaming down my face. We stared at our beautiful, perfect little boy and named him Harry. That was Monday. Little did we [...]
mother holding sleeping infant

To the Mother Who Approached Me and My Baby Girl With Down Syndrome

I have a distant memory of you. I know it was a cold winter day where the temperature was too frigid to bundle up my toddler and let him play in the yard, but he needed activity to keep from running laps down the small outlets of our hallway. Neither my carpet nor my patience [...]
baby sitting in mom's lap on the grass in front of a tree

How My Child With Down Syndrome Changed My Perspective on Diversity

Before I was pregnant with my son, Augie, I had only met one person with Down syndrome. My limited experience, both in breadth and depth, resulted in stereotypical perspectives of Down syndrome molded by general information anyone could find on Google. It wasn’t a negative perspective; it was just narrow and lacked any real substance. I had a [...]
little girl with down syndrome in front of christmas tree

25 People With Down Syndrome Show Off Their Individuality

Oftentimes, people think Down syndrome has one “look.” While many people with Down syndrome share characteristics, we know every person is an individual. We asked members of our community to send us a photo of themselves or a loved one being proud of their individuality! 1. “This is Sloane being sassy testing out her new [...]