Three weeks from today my little guy should finally be here.

So this is how it is supposed to go: Cody is scheduled to be delivered by c-section on January 19, 2010, at 9:30am. We will get to see him for a minute or two before the doctors take him to be evaluated. Sometime in the first 2-24 hours he will have 2 surgeries: the first to repair the defect and the second to place the shunt. Then he will be in the NICU for a week or so, while he recovers. We won’t be able to hold him while he is in the NICU, but he will be in an open-air bassinet, so we should be able to touch him. Visitors are welcome J  (as long as they are not sick). From there he will go to the Intermediate Care nursery, to work on eating on his own (without a gastric tube) and other issues. There are rooms in the Intermediate Care nursery where we will stay the last couple of nights for a “trial run.” We will take care of Cody in our room, as if we were at home, but still within easy reach of any help.

Then we will take him home. He will have to go home in a special car-seat in which he can lay down, as he will still not be ready to be placed on his back. From there we will begin physical therapy and dealing with strong possibility of shunt malfunctions and infections, especially in the first two months. In those cases the shunts will have to be replaced. Any time Cody has a fever, is lethargic or sleeping more than usual or more irritable than usual he will have to go the hospital so that they can evaluate his shunt. And all this is just the first 8 weeks of his life. Whew – so much to think about, and so nearly impossible to keep from thinking about it!

I haven’t posted in quite a while, not because I have been too busy or lazy, or because I have forgotten, but because things have just been too difficult for me to want to write. The last few months have been a dark place. The anticipation of what is coming has been torturous, and I’ve never been good at controlling my thoughts, or at “positive thinking.” I have not been anticipating the worst, just anticipating. I can’t wait to see my little one, but I am still grieving the lack of “normalcy” that this birth experience will involve. Meanwhile, my self-imposed bubble of ignorance about what parenting a child with spina bifida will entail has been slowly disintegrating. The bubble was a good thing – why would I want to be inundated with overwhelming information about which I can do nothing? But as the time has approached to start educating myself on what the first bit of life with Cody will be like, I have been completely overwhelmed. 

A couple of days ago we had our 4^th ultrasound. The news is not good. Cody’s hydrocephalus has become quite sever in the last few weeks. What doctors like to see in measuring the size of the ventricles is a width of 10-12 mm. Cody’s ventricles have gone from 14.5 mm at our first ultrasound, to 39 mm. This means that a shunt will need to be placed immediately after he is born. It also means an increased risk of brain damage. There isn’t any direct correlation between ventricle size and amount of damage to the brain, but when the ventricles measure over 15 mm, the chance of damage presents itself. In some cases it is severe brain damage. We won’t have any idea how much damage there might be until he is older and meeting or missing milestones. This frightens me more than any physical damage could do. I want my child to be here, to be present. To be able to smile and snuggle and talk and play, like my other children. I don’t know what I will do if that is not the case. The idea simply brings me to my knees. And please don’t post any truisms about one’s knees being the best place to be because that is when we are forced to trust God. That might be true, but I don’t want to hear about it. What I mean is that the thought devastates me.

With the coming of Christmas season I have been thinking a lot about Mary. I mean this in the most humble way possible, but I think I may know a little bit about how she felt in anticipating Jesus’ birth. It must have been very frightening to be travelling so far from home when 8-9 months pregnant with her first child. She would have had no idea when and where that baby would come, and if there would be help available to her if she needed it. I have been on partial bed-rest for several weeks now because of pre-term contractions, so I have some idea of what that daily uncertainty is like. And travelling on a donkey! Any woman who has been pregnant can imagine the agonizing discomfort that would have caused. On top of this, the knowledge that everyone knew she was pregnant before she married, and the stigma associated with this.

And then there was both the knowledge and the lack of knowledge about what Jesus’ future held. She knew that she was carrying the Messiah, and must have had some hint from prophecy of how his life would go. This would be overwhelming in itself. But how could she know what the day-to-day challenges would be in raising God’s Chosen One – His Son? Unless she was a much stronger woman than me, she must have struggled with a great deal of anxiety. And yet, what choice did she have but to believe in the words of the angel, that she was “highly favored,” that God had chosen her for this task?

I think a lot of my struggle in the last few months, and the cause of my wavering faith and feelings of despair, have come from a mistake in what I am trusting in. I have been trusting in my beliefs about Jesus, instead of trusting in Jesus Himself. When I try to fit this situation into the framework of what I believe about how Jesus uses and orchestrates our circumstances, I get a bleak view of life, and one that, really, if I look at it logically cannot be explained away. Hence my inability to “think positive.” When I pick my beliefs apart with logic, the conclusion I come to is a pretty infallible argument for the meaninglessness of suffering. 

But when I just believe in Jesus, with blind faith (that’s right, I said blind faith. What else can one have when the future is a complete, uncontrollable and frightening unknown?), then hope comes. Without which hope life is unbearable. I can’t explain why, but I know that it is true:

“Turn your eyes upon Jesus,

Look full in His wonderful face,

And the things of earth will grow strangely dim,

In the light of His glory and grace.”