Drop Stitch
Celebrating God’s Design in a Rare Genetic Disorder
I wish my daughter had come with an instruction manual. The manual would include chapters like:
- “Songs to Sing When ‘Jesus Love Me’ Makes Your Infant Scream”
- “How to Pretend You’re Happy When You haven’t Slept for Months”
- “Where to Hide Chocolate for Yourself When You Don’t Want Your Child to Binge on It”
- “How to Invest in Coloring Book Stock”
- “Christian Words to Say to Your Neighbor Who Forbids Her Child from Playing with Yours”
- “Best Places to Buy Soft Clothing Without Tags or Drawstrings”
- “Length of Time Your Child Can Safely Go Without a Bath”
- “10 Things to Keep Yourself Busy as Your Child Kicks and Screams on the Grocery Store Floor”
Unfortunately, there is no such instruction manual; but unlike most kids, Rose does come with an explanation. A geneticist wrote down her family history, all previous medical evaluations and diagnosis, added samples of her blood and thread them all into a chromosome machine – and, “Wirr, Wirr, Chang, Chang, Boom, Boom, Ptsuzzzzzzzz” out popped a diagnosis:
Variant in FBX011 Gene
I should have told the machine I preferred an explanation that someone, anyone, had heard of, or at least one that was popular enough to have a real name.
The rare few, world-wide, who’ve had the machine spit out similar results were also born with cleft lip and palate and/or a hole in their heart, have experienced developmental delays, intellectual disabilities, neurological differences, have long fingers and toes, big eyes, thin upper lips, and have sleeping difficulties.
So, now, when the 500th person tells me to rub lavender on my kid’s feet to enable her to sleep, I can always say, “Thanks! I didn’t know that lavender repairs broken chromosomes!”
Psalm 139:13 says, “For you formed my inward parts; you knitted me together in my mother’s womb.”
I can’t think of any more of an “inward part” then a specific gene packed in a bundle, forming a chromosome. When I think of God knitting Rose together, I think of her broken FBX011 as a dropped stitch.
There are two definitions of a dropped stitch in knitting. First, you accidently dropped a stitch, it is a mistake and you have to go back and fix it if you want your sweater not to have a hole in it. Secondly, knitters drop stitches intentionally in order to make a specific pattern. Dropped stitches create a light and airy pattern that is lacelike.
Since God is perfect, I can’t believe that as God was knitting Rose’s genes into chromosomes He said, “Opps, I accidentally dropped a stitch.” I choose to believe, instead, that God created a beautiful, unique knitting pattern for her life. He knitted a drop-stitch into the chromosomes to create a lace-like, see-through effect.
So that when God was finished knitting, He held Rose up in front of His face, and anyone who looked at His work of art would see glimpses of His face through the pattern.
I’ve asked God, “Why was Rose born with so many challenges? Why has she had to go through so many operations at such a young age? Why does she behave the way she does? Why does she struggle with depression and anxiety and obsess over the “small stuff”? Is it her biological parents fault for the gene they passed on? Is it my fault for not “controlling” her better? Is it her fault?”
And God has answered me, just as he did the disciples when they ask who sinned that a man was born blind. “It was not her bio-parent, or you, or even her – but that the works of God might be displayed in her.”
Psalm 139 continues, “I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.”
When I look at my daughter, I praise God, because she is fearfully and wonderfully made. God’s works are wonderful – the unique and rare drop-stitch that He used to design her allows me to see Him through her.
There’s no greater satisfaction for my soul than seeing the face of God in my daughter’s smile.
