I had never heard of Trisomy 18, nor had anyone else in my family or circle of friends, and while I was somewhat familiar with Down Syndrome, Edwards Syndrome was certainly not on my radar. (Nor, I might add, was having another baby.) On this day, I was likely homeschooling 7 of my kids while chasing baby Rhema around the house, trying to keep her out of mischief.
March 18, 2017.
Verity Irene was a tiny little mite who had been home from the hospital less than 24 hours after spending her first 17 days of life in the NICU. She had an NG tube she managed to dislodge a few hours after this photo, resulting in a frantic trip to the ER that night. Good grief. We hadn't even made it a whole day and already there was chaos! How in the world were we going to manage caring for this fragile, precious little girl AND keep up with our 8 other kids?!
March 18, 2018.
Verity Irene passed a huge milestone: she turned ONE YEAR OLD! Statistics had told us only 5-10% of Trisomy 18 children reached their first birthday. I'm thinking those are old statistics...but regardless, who cares?! Does this look like the face of a girl who gives a flying fart what statistics say?!
March 18, 2019.
Verity has now passed her 2nd birthday. She's no longer a tiny, fragile little baby, though she is small for her age. She is developing at her own pace, and we cheer at her every accomplishment. The world might not award much significance to her achievements--or even to her very life--but we know without a doubt that she is a gift from God. She enriches our lives and brings us joy in a way only she can.
March 18, 2020.
Verity Irene, like ALL of our Trisomy friends, is clearly a Trisomy RULE BREAKER!! At 3 years old, she has blessed our family and a growing circle of friends just by being who she is, the unique person God created her to be.
It is a strange time we live in to be sure. As I type this post, Trisomy Awareness Month has been overshadowed by COVID-19. I am not fearful, per se, of the virus invading our home, although I acknowledge it could definitely happen. I choose not to live in fear, but we are definitely taking precautions. Of course, some of those are not of our own design, as schools have shut down, my oldest daughter's university campus is closed for the year, churches have switched to livestreaming, appointments are pushed farther down the calendar, and so on.
But here's the thing on my mind during today, my fourth Trisomy 18 Awareness Day: IF my child gets sick (whether due to COVID-19 or another illness), and IF we need to get her into the hospital...WHAT IF the hospitals are overrun? What if by the time we get triaged, there aren't enough beds or equipment for what my special girl needs?
And even if it isn't Verity, WHAT IF this happens to our little Trisomy warrior and princess friends??
WHAT IF doctors find themselves having to choose WHO gets life-supporting equipment, time, effort, and resources?
What will happen to those society has already labeled "incompatible with life?"
THIS is why I think Trisomy Awareness Month is important to talk about, even though our newsfeed is already saturated with articles about the virus, the economics, the responses, and whether what we're doing is enough or is overkill.
Wait. "Even though??" No, ESPECIALLY since we are in the middle of a pandemic! This is ESPECIALLY why I think bringing awareness to some of our most vulnerable citizens is important.
And so here I am, standing in my little corner, washing my hands and keeping my family at home, shouting from my computer.
Please...please. Please think of people like my precious Verity, like her friends, and like their grandparents or others who are especially vulnerable. Please don't scoff at recommendations or skip out on washing your hands.
Let's get through this together, OK?
