10/22/2021
A friend shared this story about her child, Dominic, who was born with Down Syndrome. I've never met them in person, but I love Rose and Dom.😍 Rose Godfrey is with Brian Godfrey.
"Nine years ago, I got a call from the midwife to say that the ultrasound showed that this sweet child of mine had bilateral choroid plexus cysts. That meant that he had a little fluid filled spot on each side of his brain in the area called the choroid plexus.
By itself, one cyst in this area is not a concern, but two....well, two can mean that there is something atypical in development.
Based on all the information we had at the time, the midwife thought we had a very good chance of having a child with Trisomy 18. For those who don't already know the story, that means he would have an extra copy (trisomy) of the 18th chromosome.
I spent that very long weekend Googling and praying and wondering what the future would hold. The prognosis was dire. Life expectancy --at least at that time--was typically only a few days, and males were often stillborn because of that extra copy of the 18th chromosome.
Brian took the older kids out for a drive while I processed. I sat at the computer and put two songs on repeat: My Life is in Your Hands by Kathy Troccoli and I'll Praise You in This Storm by Casting Crowns. I read and sang (off key, of course) and cried and snotted all over the keyboard. And I had peace.
Of course, as you know, Dominic didn't have Trisomy 18; he has Trisomy 21 (more commonly known as Down syndrome). His extra copy of the 21st chromosome colors every part of him, and yet, he is so much more than a conglomeration of chromosomes. He is a gift of the purest form.
I tell this story, or a version of it, often because it is so important for me to share the beauty that my son brings to our lives. I wrote this post a few years ago and just updated it today to reflect the change in time.
There is not one thing I would change about Dominic. I am immeasurably blessed to be his mother.
Psalm 139, verses 13-16 says this (and I think that Dominic easily could be saying this):
For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
*****
October is Down syndrome awareness month. I have trouble containing all this awesomeness in one month, as you well know."🙂