I wrote about the power of a name when our son was born. (I gave a secret name to our daughter as well.) Having a name for his condition gave a sense of power over it in a way. It answered a lot of ‘what’ questions, though the ‘why’ questions were not really addressed. A genetic fluke, one in a hundred thousand and not transferable.

Then our daughter was born with one of the same symptoms.

By definition, she shouldn’t have Goldenhar’s, and in fact, she only exhibits one trait of it. But if he has a choanal atresia (nose blockage) and she has a more severe one…

maybe he doesn’t have Goldenhar’s after all.

At that point, it felt like the earth shrugged just enough for me to lose my balance. You think you know a thing or two and it turns out that you are wrong. Nothing bad in being wrong. It’s actually pretty healthy for folks like me. Still, this isn’t the ego adjustment type of wrong that brings refreshing humility. This is the worrisome type of wrong that robs you of sleep. The former brings answers you didn’t want to hear. The latter brings only questions you don’t want to consider. I can stand being wrong and admit my hubris.

I cannot stand being afraid of what may never be known.

My wife visited with the geneticist today and talked about various things. It would seem that no matter what name or label is given to our children, we are going down the road of ever increasing rarity for a diagnosis. The new name we heard today is Townes-Brocks syndrome. It’s like Godlenhar’s, but without the facial deformities. There have only been several hundred cases ever reported. However, it has a name because it has been linked to a specific gene. Our daughter is being tested for the presence of this gene.

If that is not the right name for it, then we pursue the more obscure corners of pediatric textbooks. The effects are the same, though. There’s really not much in the way of treatment. At this point, it feels like we are just searching for a name. If a suitable name is not found for both our children, then we may get our own (Lutz’s Syndrome) or our son will keep his diagnosis and our daughter will get her own. Worse yet, we may simply be labeled UGD (undiagnosed genetic disorder).

Still, there is only so far that answering ‘what’ questions can get you. After this has happened twice, I am finally getting down to the business of why. Why do my children have cranial deformities?

From a medical standpoint, the answer is because of the genetics. It may be the SALL1 gene, it may be a result of an odd combination, it could be that one or both of us are a recessive carrier of a malformed gene. The medical answer is not really of any comfort. It reinforces the idea that forces beyond our control acted upon us and our children to create this problem. In dealing with forces beyond our control, the why question inevitably becomes emotional and spiritual.

Where was God when all of this happened?

I appreciate my well-meaning friends that have wished me well by saying, “God is in control”. I must confess that God was in control during the first trimester when this happened. If he was in control in utero when the genetic problem first began, it leaves me wondering if my children’s issues are the result of a deliberate act, or an allowed act. Jesus did not do anything to clear up the confusion, when his disciples asked why a man was born blind, he said that it was for the glory of God. Moreover, when he was crucified and allowed to die on the tree, you could argue that his suffering was both allowed and deliberate. (Results may vary, your theology may differ. Those that adhere to both/and theology are known to experience the following side effects: paradoxical thinking, equivocation, mild dizziness, and depression. Those that have taken both/and theology state that the side effects are usually mild. Please consult your clergy for more information.) This act, too, was ultimately for the glory of God, otherwise I would not be a believer today. His suffering opened up the way to the Father for me. Without his suffering, I would have no hope.

Still, why does my family suffer with this?

You could say that we are in a fallen world and this type of suffering was bound to happen to someone. After all, mankind is dramatically affecting our planet in ways that will not be clear to us for some time. There’s enough radiation in the world that maybe we are bringing genetic defects upon ourselves.

If this is the case, my family won the lottery. The wrong lottery, mind you, but a lottery just the same. We happened to be the 100th person in line when the transformer behind the grocery store blew or our parents were within 50 miles of a secret government experiment gone awry. Take a pick, I’m sure there are more creative ways to say the same thing. Genetic malformations in general are caused by man’s evil upon the planet itself. Maybe the evil is not intentional like living in an area that is a hub of telecommunications between East Coast and West Coast. (We’ve got Internet2 here.) Who knows the effects of so much cable buried underground with electricity running through it. Still, it’s a variation of the effect of man on the environment around us.

You could say that God has visited this upon us in order to teach us a lesson. Paul shared similar sentiments to the Thessalonians.

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One of the things I have learned for a congregational study of Hebrews is that sometimes God remains unknown on purpose. Consider Melchizadek. He was king-priest of Salem. Abraham offered him a tenth despite predating the Torah by a few hundred years or more. Why Melchizadek?

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over radiated mash potatoes – Ed from Ed, Edd, and Eddy