A Change in The Story

I realized recently that I never wrote about our visit with Dr. Dobyns (the neurologist and geneticist we saw in July and the leading expert on microcephaly). I think I haven't known how to write about it so I just haven't. But it seems time to share.

Essentially he told us that Sage will definitely have difficulty speaking and walking. He was sure to emphasis for us the difference between speech and language and said she may or may not struggle with language, but she will definitely struggle with speech and using the muscles in the lower half of the face. He told us about some speech options that may later be available to her - some even through the iPad. He said she may learn to speak eventually, but it would not be easy and it would not happen in any sort of regular time frame.

As to her walking, he said that because of her MRI and her muscle tone this would also be a struggle for her. And said if she did learn to walk it would only be with a lot of help.

He said she won't be able to support herself or live on her own.

All of that was pretty much what we've been preparing ourselves for ever since we first found out about Sage's polymicrogyria. It confirmed my fears instead of easing them, but it wasn't really surprising.

What was encouraging though was how pleased Dr. Dobyns was by Sage's sociability and responsiveness. He said it makes her a great candidate for therapy and recommended that we work up to twice a week with therapy for her. He also said it could also be a good sign for her mental development and that if she was going to have a severe mental impairment she wouldn't be showing that sociability or awareness.

What was really surprising though, was what he said about the cause... He did not think it was genetic. He seemed fairly certain that her struggles were caused by me contracting the CMV virus during pregnancy. He said her blood work showed some signs of that although because it was taken a bit late he couldn't be totally certain. He also shared that as he sees a LOT of cases of polymicrogyria he has started to put together that the vast majority of these cases are indeed caused by this virus.

The CMV virus is very common, and adults can get it without any symptoms or with just vague cold/flu symptoms. Some people will experience it simply as fatigue. Because its very common it's not really avoidable. Most people get it when they aren't pregnant and then it has no real risks, but if you happen to get it while pregnant, as we think I did, it can cause problems for the baby.

They want to run a few other tests to try and verify that CMV was the cause, but Dobyns seemed relatively certain that it was.

Learning this has been really emotional for me. On the one hand it is a relief to learn that it's not genetic as it means that it is not something that could effect other family members (such as Thad's children someday) or any potential future children we may have (although we are not planning on any more). But, for me personally it was actually easier to think of it as a genetic problem.

When it was genetic it was completely out of my control. When it was genetic it was just who Sage is, she was always this way, she was never going to be any different. But suddenly that wasn't true. At one point my precious girl was developing normally. And then something happened to her. Something that isn't my fault, something I couldn't stop. I have struggled to come to terms with the fact that at one point my sweet babe had her life stretched out before her, a life free of the struggles that now face her. And then something happened to her, she was hurt, damaged, and that life was taken away from her. There was a fork in the road and her life could have taken a very different path. But it didn't.

Somehow it doesn't help that I couldn't do anything about it, or anything to stop it. I just feel helpless. I couldn't protect her.

Here's what I've been thinking about through this sudden change in what I know about the cause of Sage's disabilities. The stories we tell ourselves about our histories and our origins matter. The stories we tell ourselves about who we are and where we come from matter deeply. They influence how we view who we are and how we feel about our circumstances. The information we have and how we craft that into story shapes how we view ourselves and each other.

When I thought Sage's polymicrogyria was genetic I didn't feel grief. For me, as long as there was no possibility of Sage being any different there was nothing to grieve. Now the story has changed and I do grieve. I grieve for the life my daughter could have had. Sometimes lately, I look at Sage and my heart just breaks.

I want to allow myself to feel this new story, to feel this grief. But I know I also don't want to stay here. I don't want to feel pitty and grief every time I look at Sage. Slowly I try to accept what is. Slowly I try to accept my helplessness when it comes to protecting my children from some things. Slowly I try to give over my children to God and accept that the Spirit is good and knows what's best for me and my children. Slowly I surrender. Slowly I accept.

Rejoicing in the journey,

Bethany Stedman