AURORA
This is Aurora, my beautiful granddaughter. I usually call her Rora or Rory. She is three years old. I know that grandparents are supposed to gush about their perfect grandchildren, but she is not perfect. She is one my favorite things on earth, but she is missing pieces. She has a condition that I have never heard of, before now. A genetic microdeletion, more specifically a 2q13 microdeletion. It is so rare that there are only about 150 known cases in the world. She is missing some DNA in that chromosome including three specific genes.
The effects of this can range from severe autism to no effect at all. She is doing remarkably well considering what might have been. She is three but her competence is more like that of a one year old. She wasn’t really walking much until a few months ago and now she wont stop. She is very uncoordinated and falls down a lot. She can say a few words but not very well, although she is constantly chattering about something. I wish desperately to understand her. She is generally very happy but can go from bubbling joy to inconsolable incoherency in a minute. I think she gets frustrated by not being understood. She cannot tell us what is bothering her or hurting her. When we go on the beach, she keeps eating sand, which is gross, the more I tell her not to, the more she does. She is learning some sign language and her favorite thing to say to me is “No!” with the snap of her hand. She has attitude, but she also has a smile that can melt glaciers and end wars.
I am grateful that we live in a land with abundant services for her; physical therapy, speech therapy, occupational therapy, etc. there are so many things available to help and so many people that specialize in these things now. If you are one of those who work in these fields; thank you, you help make life doable for hurting families, you are the hands of God. While she is clearly developmentally delayed, 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 important 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; a doctrine also held by Jews and Muslims, or an analysis of biblical anthropology. 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 broke 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. Why must we suffer for what others have done long ago? That is a fair question. But would we have done better? It seems to me that everyday the manufacturer gives us a new car, call it a new day. And every day, in some way, we drive it into a ditch.
You may not agree with my theology, (that’s okay, most people don’t), but can you really look into the eyes of this child and not see the eternal? If you can, is it because it is not there, or because you do not wish to see it?
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. We are all like Humpty Dumpty in a way; 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. If you are able, please pray for Aurora. Pray that she would learn to speak and communicate more clearly, I think that is the next milestone her parents would like to see. And to all of us I would just say this…
Love the broken things among us. They are you.
p.s. if you wish to know more about Aurora and her family you can find it at greensinthedesert.com. it’s a blog written by her wonderful mother on being a military family. You can search “Aurora’s Story”.