Over the last four years, I've thought about Trenton in light of what they call his syndrome - a genetic mutation, and I'm not satisfied with that terminology. The meaning of mutation actually means a "permanent alteration" (https://ghr.nlm.nih.gov/handbook/mutationsanddisorders/genemutation) in the DNA. I often think of it in terms of something negative however, and I'm sure most people are like me in this.
James 1:17 tells us:
"Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning."
"good" here means excellent in the Greek.
"perfect" here means complete or finished.
"gift" in the first instance is something given. "gift" in the second instance is used in only one other place in the New Testament, and here it is the gift of salvation. The Greek means gift, bounty, benefaction.
"variableness" - unchanging
"shadow of turning"- goes along with the unchanging in a way, because this phrase could be pictured with the shadow cast as the earth turns on its axis in a way that brings on night covering a portion of the sun.
So what can we gain from the true meaning of these words? We gain this: Every good or excellent thing given to us is from God. The finished gift of salvation is from God as is the finished product of our lives as we have grown in His likeness. He doesn't change so as to cast a shadow on us one moment and the next bring sunshine.
So what does that say for our difficult circumstances? What does that say for our trials? What about babies born with genetic syndromes that cause sickness? Are these not from God because they seem bad? Are they not from Him when one day things our good and the next they seem hopeless?
On the contrary, because we know God is in control of everything, and everything we are given must go first through the permission of the one true God, we know that everything he gives is excellent because it brings glory to Him, and it brings us to a better knowledge of who He is.
So then as we think about our children with a genetic mutation or an adult with a gene issue that causes cancer or some other disease, should we think of it as something negative? Was God not in control and He just let happen what would? Are these differences mistakes?
We know from the creation of the world, that He said it was all good. Yet we also know that when sin came into the world, so did sickness and death. Yet He has not changed from that first creator. His gifts are still complete and excellent. His creations are exactly as He chooses in spite of the fact that sin has it's hold in each of us when we are born.
Something that I have found with Trenton and I'm sure others would agree with their own situations, is that there are good differences with his particular genetic mutation. As I look at other kids with CHARGE syndrome, I see the most beautiful eyes you will ever see on anyone. I see the thickest most beautiful hair. I see determination that is often negative at first, but can become what spurs them on to do what they need to do.
Everything God creates is good for His purposes and His ultimate end.