March 21 is World Down Syndrome Day (Trisomy 21…get it?) and a great time to advocate and share with others what our loved ones mean to us. When I found out via a prenatal ultrasound in 2001 that my baby might have Down Syndrome, I was devastated. With little information and no real experience with the Down Syndrome community, I reacted with fear and spent the remainder of my pregnancy praying that this would not happen to us.
When I gave birth to Nicolas, the operating room went silent. Back in my room, there were no happy welcome packages. I was informed that I had a “Down Syndrome situation.” Because of his heart issues which included AV Canal and a PDA, I had to leave him in the hospital for a week. At home I worried about how I was going to handle taking care of him as well as my three other kids. People greeted me with the words “I’m sorry” after they learned about his diagnosis.
There was nothing to be sorry about.
Nicolas is now 15 years old. The impact that he’s had on our family and our community is immeasurable. I’m sometimes asked about his “level of function.” His quality of life doesn’t depend on how high functioning he is. He just is, and that’s enough.
- His smile and charisma light up a room.
- He’s taught me more than I could ever teach him.
- Because of him, my compassion for the disability community as a whole has increased a hundred-fold.
- I’ve met the most amazing people that I would never have crossed paths with if it weren’t for him.
Is it always easy? No. But parenting so-called typical kids isn’t easy either. Do I worry about the future? Yes. Parents like me always have to be one step ahead, thinking about what comes next and how to navigate the school system, social services, medical and behavioral issues while we try to tend to ourselves and our families.
Bottom line…with all of our challenges, I wouldn’t trade him for the world. In honor of World Down Syndrome Day, here’s a few of my previous posts about our life.
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