March 21 is World Down Syndrome Day.
It’s celebrated on the 21st day of the 3rd month because Down syndrome is an additional, or 3rd copy, of the 21st chromosome. This additional copy gives a person 47 chromosomes instead of the traditional 46. The extra chromosome causes an over-expression of the gene. It’s like trying to push more sound through a speaker than the speaker can handle. The result is a distortion. (See: Down Syndrome Is Not My Problem)
It’s been 8 years since I saw my daughter’s karyotype in a small doctor’s office in Little Rock. It confirmed an already known diagnosis. The flat nose, almond shape eyes, a single crease across her hands, and a gap next to her big toe had alerted the delivering physician, nurses, and my mom whose years of teaching allowed her to immediately recognize the genetic condition.
Seeing it confirmed on paper brought finality. There would be no denial. We could count for ourselves—47 is not 46. 47 has consequences. Cognitive delay, low muscle tone, an increase prevalence of nearly every medical condition, early onset dementia and a shorter life-span were nearly guaranteed with one look at a single sheet of paper.
Human beings were meant to live on this earth with 46 chromosomes. Any more causes trouble. Yet over these past 8 years one question keeps coming to my mind—how many chromosomes will we have in heaven? I ask because while in many ways my daughter is different than me in a negative way, there are many other instances where she is different than me in a positive way.
She has an honesty which I don’t have. No doubt she knows how to lie in order to protect herself, but she is yet to learn how to lie in order to protect others. She has no problem telling the truth even if it hurts. One night before dinner I put her in timeout because she wasn’t obeying. When she returned to the table it was time to pray and she volunteered. Her prayer was, “Dear God, thank you for Mommy NOT Daddy, Amen.”
She has a simplicity which I don’t have. There is a wholeness about her. I’m a thousand different people in a thousand different places, Ella is Ella no matter where she is. Maybe she’s a bit more shy in public than at home, but for the most part there is no facade.
She doesn’t seemed as burdened with a drive to impress others as I am. The opinions of others which can keep me up at night doesn’t seem to bother her. I wish they didn’t bother me.
She has a trust which I don’t have. Her trust is a great danger in this world. My lack of trust is a great danger of keeping me out of the next world. I see problems everywhere; she sees them nowhere. While her naivety is not godly, her deep trust in that which is good is just like God. My skepticism while useful in this world, can prevent me from trusting the ones and the One who deserve my trust.
As I have written before, we stand in a real possibility of daughters like mine not being born. We might eradicate Down syndrome, not because of a cure, but by simply not allowing children with Down syndrome to be born. Part of World Down Syndrome Day is to focus on the contributions of people with Down syndrome in order to remind us of their worth. Our good intentions may come with great consequences. What would society be without people like my daughter?
While compassion is a positive, it’s nothing but arrogance to look down on people with Down syndrome as if it is a tragedy that they are not fully like us. In some cases it is a tragedy. In many cases it is a tragedy we are not like them. In every case, we have more in common then we have differences. (See: Five Principles for My Daughter’s Teacher)
So on this 21st day of the 3rd month, the world pauses to recognize the talent of those with an extra chromosome. As we reflect, I still wonder in what ways is my daughter more like Jesus than me. In what ways will transformation to Christ-likeness require me to look more like her rather than her looking more like me.
For another example of how Ella is more like Jesus than her father, watch this clip:
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