Please know I understand and appreciate the sweet sentiment behind World Down Syndrome Day. We want to celebrate people with Trisomy 21, raise awareness of the condition, normalize it, challenge misunderstandings, squash prejudice...Hurray!
All good goals.
Yet I hope and pray for something else, something more. Way, way beyond celebrating this precious child of mine with a random extra chromosome.
An outlier myself, I’ve never been much of a joiner, so when I learned at my twelve-week sonogram that Isaac might be born with an extra 21st chromosome, I didn't rush to confirm a diagnosis, join a group, or even to learn more about it. Actually, I started to, but quickly discovered there was no telling much of anything about who Isaac would be.
One of the features of DS is that there's an unpredictably dramatic range of potential medical conditions, cognitive abilities, mental health risks, level of function, behaviors, etcetera. Honestly, even the best books only filled me with dread rather than the joyful anticipation of my baby boy's arrival. Moreover, as an overthinker of the most dangerous variety, I didn't need any help imagining this foreboding unknown future.
Having had a very challenging life myself, Isaac's diagnosis was a terrifying curve ball, one that filled me with anxiety, hard questions, and anger that God would allow this after all I'd already been through. Very Type A, I knew this was something no amount of hard work, analysis, or smarts would change.
I wondered how I could possibly be the right person for this job.
These are not easy things to admit over coffee.
Friends, family, Isaac's dad, doctors, specialists, pastors, and other DS moms sent my way all tried to comfort, encourage, and support me early in my process, but there was no way around it. I was alone...with God.
I still remember clearly nursing Isaac in his bedroom glider, cuddling him, gazing at his cute little face, weeping, and talking to God in uncensored terms. Day after day. Night after night. I read my Bible, searching for clues about what God was doing.
Then suddenly...that is, suddenly after months of agonized seeking...I was flooded with a sense of surpassing peace and the first sunlight of mystical joy that continues to stun me.
Grace.
Not only were none of my fears realized, but Isaac has also proven to be a custom-designed gift for me in the most intimate, knowing sense. I trust Isaac blesses others in unique ways, too.
I’ve also discovered that, much to my surprise, I’m very much the perfect gal for the job of being his mom.
God did this. I hope it will encourage anyone dealing with a devastating or merely disappointing detour.
Let me say that this isn't just about the Down syndrome cliche of abounding love and perpetual fun. Okay, that's true. Isaac is way better at loving than average with a vast repertoire of insightful and effective loving expressions. Yes. Isaac is a special kind of delightful fun.
He's also a master manipulator, a whole new class of obstinate, special-messy, obstructively lazy, and has a distressing ability to hold petty, punitive—albeit fast-passing—grudges. Cognitively, saying he's delayed is simplistic and doesn't tell the whole story. While he can't read or write too well, I gather that he sees the world differently than the rest of us. Maybe more accurately. I'm convinced he has one foot in the heavenly realm.
Admittedly, some of these traits are well-documented among people with Down syndrome. But I know they vary greatly. Isaac's friends may share some common characteristics, but they’re unique individuals with their own personalities and physical attributes. They are so much more than their diagnosis, just as we all are.
This is where I want to land this plane today.
Yes, I do see the merit in Down Syndrome Day. I see the merit in International Women's Day, Hispanic Heritage Month, Autism Awareness Day, Black History Month, or any of the countless other observances based on one or more defining human characteristics, born or bred.
Recognizing and rejoicing in our differences is a beautiful thing. But there’s so much more to it!
More than ever before, I long for humanity to be unified. I want so much for us to know deeply, down to our toes that we’re one.
To get that we’re delightfully different by Divine design, but equally precious and beloved.
To understand that our most precious, common differentiator is our beloved humanity.
To realize there’s a transcendent Creator who can enter our most dastardly detours--including those we create--and do good in, for, and through us.
To rest in the knowledge that this sometimes tragically messy world isn’t the end of the story.
To be reassured that this God wants to help us not hurt us.
To know in our hearts and souls that we are so loved by God.
So loved.
It just happens that in my case, it was Isaac, who happens to have Down syndrome, who is teaching me all this.💙💛💙
“For God loved the world so much that he gave his only Son so that anyone who believes in him shall not perish but have eternal life. God did not send his Son into the world to condemn it, but to save it.” John 3:16-17 (TLB)
Thanks bunches! Love, Isabella