This is my granddaughter, Aurora. She prefers simply “Rora”
She put on my hat, climbed up in my chair, and said, “look Jimdad, I’m you!” (My grandchildren call me Jimdad) she is going to be seven soon and is a total goof. She has what they call “special needs,” although I have never met anyone that did not have their own special needs.
She has a rare genetic disorder called CTNNB1-NDD (neurodevelopmental disorder). There are only about four hundred known cases in the world of this syndrome. That number is low because I would guess they often misdiagnose these kids with cerebral palsy or autism or something else.
Rora’s speech, vision, fine motor skills and coordination are all a bit of a mess. She is physically awkward, and her ankles are malformed; she refuses to wear any corrective braces or boots. She cannot negotiate steps very well because she has poor depth perception. She goes up steps on all fours like a dog and goes down them on her butt.
The other day we hiked up a small mountain near my house called Mount Misery. She led the way and did great. She stumbled and fell a bunch but only cried once. When I stumble and fall in this life, which I often do in many ways, I usually get up cursing and complaining. Aurora usually gets up laughing. She is trapped in a body that has betrayed her, and often trips her up, but she may be the happiest child I have ever known. She sings loud and terrible and I love to hear it. She screams happy screams just to make a noise and let the world know she is alive. Her joy is infectious. Every time she sees me, she says, “I missed you!” Grandparents live for such words.
When we go to the beach, she likes to eat sand. I tell her not to, but she just smiles, then ignores me. I give her my phone because she loves to take pictures of everyone and everything. Her favorite person to see in the phone is herself. Her innocent charm is a rebuke to my crusty heart. Aurora clearly has lots of developmental delays but, when I look into her eyes, I do not see distance or confusion; I see wheels turning, I see wonder, I see the image of God in the face of a little girl.
Speaking of God. Where was He on this? isn’t He the author of DNA? Your DNA code is three and a half billion letters long, did He somehow misspell her? If God cannot spell, we are all in trouble. I have friends who reject God because of things like this. They think that I am crazy to cling stubbornly to the notion of a personal God who is all powerful and all good and yet allows little girls to be born with microdeletions or heart defects. I sympathize with their point, although it seems to me that “life is hard, so there is no god” is not a very rigorous approach to the most critical issue in life. As a believer I must account for one thing, unjust suffering. I accept that burden, I do not take it lightly, believe me. As an unbeliever you must account for everything else, good luck. Faith is not blind. Faith is trusting in what you have good reason to believe is true. So, why do these things happen?
I will not bore you with the details of the Christian doctrine of The Fall. It boils down to this; we walked away from God; He did not walk away from us. We are like the man who buys a new car, drives it off the lot and strait into a ditch, then gets out and shakes his fist at the manufacturer. The world is broken, and we helped break it. Creation is out of balance, it wobbles, as if someone threw a stone at it long ago. The ship will be righted someday; those promises are clear and numerous. For now, we still bear the image of God; but it is a twisted image, as if seen in a funhouse mirror.
Aurora is incomplete, but so are we. Who among us isn’t missing some pieces? Who among us isn’t very coordinated about life? Who among us doesn’t get frustrated because we cannot communicate what’s in our hearts clearly? Who among us hasn’t eaten a little sand? We are all incomplete. Why do we spend so much time and effort pretending otherwise? Pretending to have it all together? Pretending to be complete? I am convinced that half of life is bluster. Fabrication. Acting. I am no more complete than Aurora.
I love this child dearly. I cry even now just thinking of her. I wish that I could hold her and heal her. I would give away every chromosome that I have just to make her whole. But I can’t. Broken people cannot fix broken people. We can only love each other. In a way, we are all like Humpty Dumpty; who had a great fall, “and all the king’s horses and all the king’s men couldn’t put Humpty together again.”
No, but the King can.
The King loves Aurora far more than I ever could. He has not stood apart from our suffering, he has entered in and suffered himself. There will be only one wounded person in eternity. It will be The King Himself.
The bible ends with a promise: “Behold, I am making all things new.”
This little girl will shine like the sun someday, she is already incandescent to me.