Heart Thoughts-Reality

Today we had an appointment with the geneticist. We saw her when Waverly was in the hospital, but that was a long time ago and just after her diagnosis, and we were so overwhelmed at that point that it was more of a listen wide-eyed appointment than anything. So today I was able to go in and actually ask more questions, and learn more. It was a good appointment in that way, but difficult also.

I saw the MRI images of Waverly's brain that they took when she was 2 days old. We saw them the day that we got her Lissencephaly diagnosis. (I will write a post about that at some point. I just haven't felt quite ready yet. It's a tough day to bring back to mind.)

Of course, we were so shell-shocked with all the information that they were telling us about our brand new baby that we briefly saw the MRI images, but don't remember much about them (and didn't really know what we were looking at). So, to see them again, this time with a little more clarity of thought, was interesting but hard. Below is a picture of a normal brain scan on the left and a lissencephaly one on the right. Waverly's looks like the one on the right, although with a little more open space in the two lower sections as well (where she is missing brain matter also). Image credit: http://www.newswise.com/articles/researchers-identify-cause-for-severe-pediatric-epilepsy-disorder

There are different degrees of "smoothness", and the doctor showed those to me. Waverly's is pretty much as smooth as you can get. I already knew the answer to some of my questions, but I still had to ask (again).

Was it anything that I did or didn't do to cause this?

My pregnancy was pretty difficult with her, with lots of sickness and just not feeling great. But she assured me that that would not affect it. The chromosomes that were already a part of Waverly already existed, from the moment she was formed. Johnny and I both got the genetic test to see if one of us had a rearrangement of our 17th chromosome that could be passed on to her to cause the deletion, but neither of us did. It was just a "random" mutation that caused the genes to be deleted off of the chromosome.

She said it was just "one of those things that happens", but of course we know that she was "knit together" in my womb. We truly believe that she is God's special gift to us (just as our other two children). But to see it, to hear the prognosis, and to talk frankly about the future is still emotionally draining, as sometimes the reality is grim.

Of course we know that we have a big God, who is in control and has all the power in the world. We know He can choose to heal her if He wants (although it'd be a pretty amazing healing to make a brain where there isn't much!).

But the larger reality is that her healing will probably be in heaven. How cool is it, though, to think that her first steps will be toward the outstretched arms of Jesus? That her first words will be His praise on her lips? What an amazing picture of her healing, and I can't think of a better way for that to come about.

Lord, may I focus on Your glory in this, and not on the sadness, on the hope that we have instead of on the loss that we feel. May Your light shine in and through this little girl.