I used to fear Down syndrome.
It’s that thing every mother carrying babies in wombs prays against, that diagnosis that somehow seems insurmountable.
Almost like a death sentence.
Lord, I don’t care if it’s a boy or a girl, I would pray as I carried my first two babies for nine long months in a belly that loved pregnancy about as much as it loved the bulging ankles that supported it. As long as the baby is healthy.
And then God opened my eyes.
And then I met JOY.
And then I realized that Down syndrome wouldn’t have been a death sentence.
It would have been my LIFE sentence.
My pass to living life FREELY! With sheer JOY! Without reserve.
To living a life not shackled to the expectations of the world but in the untainted FREEDOM that these children uniquely experience and give.
With no holds barred. With no judgements considered. With open arms and open hearts and the gift of loving others right where they’re at.
It would have been a lesson in what’s really valuable in life. In what means the most.
A lesson in beauty. A lesson in laughter.
A lesson in the absolute heart of God.
It would have been the biggest blessing, not the biggest burden, any family could possibly receive.
It would have been the JACKPOT.
A few months ago, a dear friend sent me this video. It’s a video of Frank Stephens, Down syndrome advocate and one who has experienced the JOY of Down syndrome his whole life long — because he himself celebrates a sparkly extra chromosome — testifying before Congress about the GIFT of Down syndrome.
“My life,” he says, “is worth living.”
(If you have Facebook, view a powerful clip of this testimony with subtitles as posted by Ashton Kutcher HERE.)
After living just one month with Joy, our former host child who will always be our “forever-niece”, I couldn’t possibly agree more.
In fact, Joy’s life isn’t just worth LIVING.
It’s worth CELEBRATING!
Which is why today, on World Down Syndrome Day, we do exactly that.
Maybe you’ve never had the privilege of knowing a superhero with a sparkly extra chromosome.
Or maybe you’ve subconsciously avoided them your entire life long.
Maybe you’ve been faced with the decision to abort the one growing now inside you.
Or maybe you know others who have.
Five years into life as a special needs advocate, I’ve learned that these sparkly chromosomes aren’t handicaps.
They make these children handy-capable.
Their extra chromosomes aren’t detractions.
They are shiny, upgraded accessories that upgrade the lives of every single person around them.
In fact, according to a survey by Brian Skotko published in the New York Times, 99 percent of people living with a child with Down syndrome over the age of 12 reported “personal happiness” in their own lives. In this same article, researchers found that the divorce rate of couples raising a child with Down syndrome was actually lower than those raising children with no “disabilities.”
The lives of our own children have been so enhanced by a superhero with a sparkly extra chromosome that the highlight of Superhero 2’s trip to Disney World wasn’t actually Disney World … it was a stop to see JOY along the way.
That the people our children look forward most to seeing are the people they now just call “cousins” — Joy and her forever family, who have become like ours as we’ve visited their home and they’ve visited ours.
That when our superheroes are out in public, they don’t avoid but SEEK OUT those with sparkly extra chromosomes … and then beg me to make friends with their mamas and invite them to dinner. (Superhero 2’s obsession with the “cute little girl with the sparkly extra chromosomes who is always waving at me after running practice” just earned me my newest beautiful friend and this weekend’s family BBQ play date.)
Down syndrome hasn’t shrunk our world; it’s blown it wide open.
And from one former fear-fretter to another, this life filled with sparkly extra chromosomes is far more rich and beautiful than all the dreams I had for babies without them.
#changethedownsyndromestory #upsyndrome #nothingdownaboutit
Want to read more about our experience with superheroes with sparkly extra chromosomes? Check out our former blog entries HERE:
Find Frank Stephens’ testimonies to Congress here: