Diagnosis

Jason and I recently discovered that Eliana's hearing loss is very likely due to a genetic condition she inherited from us.  This shift from "random unexplainable hearing loss" to "inherited condition" is an overwhelming one.  For the first time I have to consider the potential risk of any future children inheriting the same condition, and whether there's a level of responsibility I have to adhere to in terms of choosing not to pass this on.  I'm grieved, I'm angry, I feel sick.

If it weren't for our advances in terms of testing now a days (yes I'm ranting about technology again, sit tight), it would never have occurred to me that Eliana's loss was anything more than a random loss.  Now I have words like "mutation" and "deficiency" and "abnormality" running through my head, and it suddenly feels like my perfect little girl lives under a heading that makes her less valuable, or less acceptable than everyone else.  The language of it makes me feel as if our genes our "tainted", and in today's age where genetic pre-screening is a possibility in utero so that deficiencies can be caught and possibly terminated early, I'm battling against the suffocating darkness of a cultural message that might see her genetic defect as something that should have been weeded out.

This is where information does not feel like power, it feels terrifying, suddenly I'm to choose whether it's ethically responsible for us to have another child, instead of leaving this decision up to God.

After writing the above paragraphs, Jason walked into the room, seeing my tears and distress he said this: "Laura, God is wildly creative.  He shapes and forms us as expressions of that creativity.  Who are we to stunt His creativity by trying to weed out the very characteristics that embody it?  Eliana is a beautiful expression his masterful work, she is exactly who He intended her to be, and should He gift us with more children, they will be exactly who He intends them to be."

Sigh...  Yes.   She is exactly the Eliana He intended her to be, and I sit in reverent awe as I witness His great creativity at work.  My heart moves away from "defect" and towards "creation" and I feel... peace... for now.