The doctor delivered the news just five minutes after we had delivered and fallen in love with the first superhero to ever join our family.
Super-Spouse and I had just completed the feat of all feats — staying awake for 24 hours without anything but a sneaked-in Handisnack to keep us energized, cheering one another on in our tiny post hospital room as we prepared to change our official titles.
From young, naïve IDIOTS to young, naïve, idiotic PARENTS.
We were holding sweaty hands, smiling from ear to ear and just in total awe and amazement at the little boy we had somehow created, now being observed and examined in the careful hands of his doctor.
We were mesmerized.
We were in love.
And after spending nine long months dreaming about and imagining what this baby and this moment would feel like, we didn’t think anything could possibly bring us down.
Until the pediatrician our delivery doctor had summoned spoke.
“The bridge of your baby’s nose is wide, his ears aren’t aligned and frankly, he’s just what we call an FLK,” the pediatrician told us. “A funny-looking kid.”
Super-Spouse and I looked at each other, and after 24 hours with no sleep and more than an hour trying to push out a baby, I was delirious, in pain and almost couldn’t process what the doctor said.
Our baby, our beautiful, flawless baby, minus the bruises and the head malformation that came from hours of pushing, looked perfect to us.
“I’m going to order a full chromosomal karyotype,” he told us. “Since you two aren’t FLPs — funny-looking parents — I’m concerned about your son’s health. If he doesn’t have Down syndrome, I’m 99 percent sure he has something. This chromosomal analysis will tell us what it is.”
And then, as quickly as he entered our life, he left it … in complete and utter upheaval.
I cried. Super-Spouse withdrew. And our five entire minutes of sheer joy and post-delivery glory faded as we tried to brace ourselves for a life we never planned.
Because we didn’t want to worry our friends and family, who lived thousands of miles away while we were living in Alaska, we told almost no one. We comforted each other, held our baby tight and promised that we would love and serve this baby the very best we knew how, no matter what challenges he might face in this life. We loved him fiercely, and NOTHING, not even an extra chromosome, would change that.
But we both worried.
We both couldn’t sleep at night.
And we both just couldn’t shake the thought that our child might have that dreaded thing we always feared … the thing we prayed against our entire pregnancy long.
After two weeks with the tiny superhero who immediately captured our hearts, Superhero 1 and I farewelled Super-Spouse, who had to return to a business trip for the next eight months.
For four more weeks, from separate continents, for day after fret-filled day, we worried. We prayed. We wondered. We planned. And we waited for the results of the chromosomal analysis that would tell us exactly what was “wrong” with our “funny-looking" son.
As my friends and family came to visit Superhero 1 and me in our Alaska home while Super-Spouse was away, they would say all the normal things that doting relatives say to a woman who has just given birth to her first baby.
“He’s so cute!”
“He’s just precious!”
“What an adorable child!”
And every time one of them commented on our son, I would practically interrupt them just to reply. How cute? Really cute? Or just semi-cute? Cute like the kind you tell the women who have the really ugly babies to make them feel better? Or cute like the kind I see through my mom beer goggles when I look at this child? On a scale of 1 to 10, how blind am I? And how big of a liar are you?
Because we didn’t share our news or experience with almost anyone — NOT something I would recommend — I lingered at every word that contradicted the “funny-looking kid” diagnosis that had led to a chromosomal analysis that we were still waiting to read.
And I just prayed that if other people found our son normal-looking, maybe our chromosomal analysis would find him normal, too.
Six weeks after the day our pediatrician told us our son had something, he called our phone to deliver the news.
“Your chromosomal analysis came back completely normal. Everything looks great. It appears we had nothing to worry about in the first place.” He laughed, checked the call off his list and moved on with his day and his life.
I hung up the phone, made plans to bring Superhero 1 in the nastiest, poopiest diaper possible to his next pediatrician appointment (sorry, Jesus!), emailed Super-Spouse and cried tears of joy for several days on end, all while I wished that I had never allowed a possible diagnosis to steal six weeks of joy from my brand new mama life.
We’d never told that story to our superheroes before, and today, on World Down Syndrome Day, I read it to them aloud.
When I finished, I asked them what they thought about what almost happened to their oldest brother.
Superhero 1, who today is an honor student in the gifted program and ACTS way funnier than he LOOKS, just looked up at me innocently.
“Why were you so worried, Mom?” he asked, totally confused. “I would love to have a child with Down syndrome.”
My heart stopped.
“Yeah,” chimed in Superhero 2. “Joy was the happiest person I know.”
My heart felt convicted.
Superhero 3 just smiled and agreed, then added, “Down syndrome is not scary — it’s fun! Why you not want it?”
And my heart just exploded.
Because these boys at ages 5, 7 and 10 know what I as a 23-year-old, selfish, petty, perfectionist, scared-out-of-my-mind mama couldn’t wrap my head around — the fact that when it comes to Down syndrome, there is NOTHING DOWN ABOUT IT.
After a month with the 7-year-old host child who sported her sparkly extra chromosome like a designer purse to be envied, our boys are not one bit afraid of Down syndrome.
They’re not intimidated by it.
Instead, they tell us how blessed they would be if God trusted THEM with a child with Down syndrome later in their lives.
While I selfishly and stupidly spent months praying AGAINST it, THESE boys pray to be trusted WITH it.
They DESIRE to be around children with sparkly extra chromosomes.
They ask when we can host one again.
And they talk constantly about all the adventures that Joy made more fun just by her contagiously joyful presence in our home.
They know the absolute wonder and BEAUTY of these kids the world sees as “slow.” How they might think more slowly, but they catch on SO QUICKLY.
They’ve EXPERIENCED the limitless affection and endless love.
They’ve OBSERVED the free spirit that doesn’t control and calculate and count the cost of love before issuing it.
And they’ve been the recipients of the hilarious antics of a girl whose memory frequently brings our family to tears.
This child whose mama likely abandoned her at age 4 because of that sparkly extra chromosome left such a huge hole in our hearts that Superhero 2 and I have cried over her absence at least once a week since we put her on a plane back to China.
When we dance, like Joy, like no one is watching.
When we eat at the places where she made laughter fill our tables.
When we plan little boy birthday parties … and can’t invite the No. 1 best friend on the party invitation list because orphans in China can’t catch planes to 7-year-old birthday parties in April in the United States.
Joy’s Down syndrome wasn’t a BURDEN to our family; it was truly one of the very biggest BLESSINGS our family has ever received.
Just like I know now it would have been if God had entrusted our family with that special extra chromosome ten years ago.
If I could go back to that girl in the hospital room — the one who was devastated when she found out that her newborn son might have an extra chromosome — I wouldn’t tell her to brace herself.
I wouldn’t tell her to abandon her dreams.
I would tell her to bust out the party poppers.
Splurge on a cake.
Hang some neon streamers.
Because THAT girl, and every other girl who gets the news that her child has a sparkly extra chromosome, SHE would have won the JACKPOT.
The pot of gold at the end of the rainbow.
It just took us a decade to figure out that Down syndrome is really UP syndrome in disguise.
#nothingdownaboutit #worlddownsyndromeday #ajackpotofextrachromosomes