The Days I Didn’t See Coming for Myself and My Daughter With Down Syndrome

I never thought this day would come.

No, not the day when they told me my baby had a heart defect. Not the day when they told us more than likely this heart defect was associated with Down syndrome. Not the day when I cried myself to sleep thinking about what life would be like for my precious baby. Not the day when we took ultrasound after ultrasound and lots of testing.

OK, maybe the day when the doctors asked us if we knew what we were doing, telling us if we were to terminate our pregnancy, we must decide before week 22. Maybe when I felt like the doctors treated my pregnancy, my sweet baby, like a piece of paper you could just throw away in the garbage. Not when I went in for a check-up, only to hear our precious baby would be born on that beautiful day. Not every day when she is beautiful, happy, and seems healthy!

No, not the day when she pulled herself to a sitting position, holding onto my thumbs her second day of life, or that day when she rolled over at 6 weeks old, or when she said her first word.

No, not that day that had to come when she had open-heart surgery. Or all those days that she had echoes and ECGs to make sure that the surgery had gone well.

Not the day when she smiled, or laughed, or cried. When she rolled to get her toys, or when she sat and scooted for the first time. When she stands in her crib by herself and says “mama” each day. When she signs and communicates so well.

Maria and family
Maria and her husband and daughters.

Maybe those days when we get weird stares, when people look at my beautiful daughter, then me, and turn away quickly and pretend they weren’t actually looking at us.

No, not those days when I get how cute and sweet my baby girl is, and how some flock to see and talk to her. I love those moments!

I never would have imagined the day that I published my book “A Princess Wish,” to help every child grow up knowing that being “different” is the new “normal.”

No, not those days when my older daughter pushes my younger daughter on the swing.  Not those beautiful days when we go for strolls, or on family bike rides.  Not those beautiful times we share together as a family.

But today, when someone asked me what side effects this “disease” of trisomy 21 caused. Yes, today, when a lab technician asked, “Don’t they tell you when you’re pregnant about trisomy 21?”

Today, when I felt sorry for another human being for being unaware of life beyond “normality.” For not having the privilege to know and love someone like my loving daughter, someone who shows me love in ways I didn’t even know were possible.

Today, I thought of the amazing words a dear friend said: “I wish every family had a loved one with Down syndrome.” How I feel like people who don’t know what life is like with my sweet baby are missing out on an angelic piece of heaven.

I’ve known how lucky I am to have been given what I believe is a unique gift from God, and to be in this “secret society” filled with love, from the moment I met my baby girl, when she looked up at me with those wondrous eyes.

On this day and every day, I wish you understanding, true love, happiness, and most of all the gift of knowing and loving an angel here on earth with Down syndrome!

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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

Related to Down Syndrome

Adopting Our Daughters With Down Syndrome Was Like Discovering a New Color

A year ago today, we sat in a hotel room in China preparing to meet our daughter, Yuanyuan. She wasn’t Josie yet. She was Yuanyuan “Beauty beauty.” Our darling beauty, beauty magnified in a tiny Chinese baby girl body that came toddling up to our hotel door, and in a quiet voice, filled with fear [...]

World Down Syndrome Day 2016

People describe how they are celebrating World Down Syndrome Day 2016.

What This Movie Star Wants You to Know on World Down Syndrome Day

David DeSanctis is a star in the film, “Where Hope Grows.” He wants to share what he’s doing for World Down Syndrome Day. Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today! Available for purchase on Amazon and iTunes.

To the People Who Showed Us Down Syndrome Isn’t So Difficult

On World Down Syndrome Day, in addition to wearing blue and yellow, rocking our socks, performing random acts of kindness and bringing blue and yellow cupcakes to my son Evan’s preschool, I want to take the time to say thank you to all the allies we’ve encountered on our journey. Though I know our lives will be peppered with [...]