Down Syndrome Awareness Month: Over the Moon
October is Down Syndrome Awareness Month; a time to celebrate God blessing the world with a group of extraordinary people who astonish those around them each and every day. That special Trisomy 21 community includes our 1-year-old daughter, Natalie.
Every night after her mom finishes giving her a bath, Natalie and I watch a video of the classic Sesame Street song “I Don’t Want to Live on the Moon.” Her smile beams as Ernie sings about why he’d love to visit the moon, but not stay for too long.
Though I’d like to look down at the earth from above
I would miss all the places and people I love
So although I might like it for one afternoon
I don’t want to live on the moon
When Natalie got home this past Wednesday, I greeted our youngest daughter with her beloved Ernie doll. She immediately yelled “Ernie!” to the amazement of her big sister, my wife and me. She said his name again later that evening as we watched the video to complete our nightly ritual.
While a nearly 20-month-old child saying a Sesame Street character’s name might not seem like a big deal, I have seen how hard Natalie, her therapists and her mom have worked to achieve this and so many other recent milestones. Earlier that same day, Natalie stood on her own for the first time as the therapist and my wife cheered. She has made such remarkable progress thanks to her resilience and the hard work of so many compassionate and caring people.
Adjusting to having a young child with Down syndrome has not been easy for us or any parents who suddenly find themselves in the middle of this journey. I would be lying if I didn’t admit that I occasionally catch myself remembering the life we had before we learned of Natalie’s Trisomy 21 diagnosis. It has changed many aspects of our lives.
It all becomes worth it when we see Natalie smile not only when she watches Ernie, but nearly every moment of every day. Her first instinct is happiness, not frustration or sadness. Even in the most difficult moments, Natalie’s high spirits give a boost to not only herself, but her sister, parents, grandparents and hard-working therapists.
A Blessing, Not a Burden
Natalie has been hospitalized twice since birth; once for serious breathing difficulties and again, albeit briefly, for COVID-19. Even as her oxygen levels plummeted to dangerously low levels during the first hospital stint, Natalie kept smiling. Her toughness taught me to never doubt her ability to adapt and achieve things that I once assumed were impossible for people with Down syndrome and other special needs.
To me, that’s really what Down Syndrome Awareness Month is all about: celebrating not only the Lord putting these beautiful human beings on the Earth, but their God-given abilities and endless possibilities. Natalie will not end up alone in an institution later in life, she will always be surrounded by the family and friends whose lives she enriches with her infectious smile and laugh. She is a blessing, not a burden.
A Gift from God
It is my fervent prayer that through spreading awareness, more in our society will reach the same conclusion. While there is still bias, discrimination and hurtful language sadly aimed at the special needs community, I believe that many more Americans will come to realize the righteousness of giving people with special needs an equal seat at our country’s table.
Natalie was one of about 6,000 babies born with Down syndrome during the year 2020. As Stream Founder and Publisher James Robison told my wife and me shortly after we received the Trisomy 21 diagnosis, each and every child born with Down syndrome is a gift from God. It took me a while to realize it, but James was right.
Had I been given the option to go live on the moon during those dark early days, I probably would have jumped on a rocket ship and taken off. Almost 20 months later, however, there’s nowhere I would rather be than watching that Sesame Street video on the couch with my little girl each night.
I love you, Nat.
Tom Sileo is a contributing senior editor of The Stream. He is co-author of Three Wise Men, Brothers Forever, 8 Seconds of Courage and Fire in My Eyes. Follow Tom on Twitter @TSileo and The Stream at @Streamdotorg.