When we moved from North Carolina to Virginia, we left a church there that had become, in one short year, a true family. On our last Sunday they threw us a goodbye party that ended with prayer. After we prayed, one of my good friends, Jennifer Cox, gave us a message. She had seen a picture in her mind of Andrew and I sitting at a table with a big photo album in front of us. We were turning the pages backward and looking over our past together. She said that we should always look back and remember how God had been faithful to us through all our years. At the time I was thinking, of course, of the challenges of medical school. I was pretty much scared stiff about what lay ahead, especially after hearing things like, "get ready to be a single mom."

I have not always been good at looking back, and I have been extremely discouraged through most of this pregnancy. I have even gone back to the question that seems to haunt my life: I know that God loves me, but what if His love only means a life of painful "lessons" designed only to make me "good?" That idea has never been enough for me. Lately, when looking back, I have only seen the pain that I have been through, and the future has looked black with possibilities of pain of the worst kind. If I had written a list of the worst case scenarios, it seemed like God was going down that list and checking them off one by one.

As always, my view of my life hinges on my view of who God is, and if I couldn't believe in His true goodness, if I could only see Him as an overly-authoritarian father-figure who is going to "keep me in line," how could I have hope?

Then I read Psalm 91. I have read it many times before, and even spent a week memorizing it during youth camp one summer with a good friend, but it somehow didn't seem relevant right now.  I don't even know why I read it.

I came to the verse that says, "A thousand may fall at your side, ten thousand at your right hand, but it will not come near you." This didn't make any sense at first - it seemed like the battle was very near me, and about to destroy me. But I started looking back again and seeing that, though in many cases my worst fears were realized, God, in His compassion, had so eased the difficulty, that really only my fear had hurt me. My husband was sent to war. Definitely a worst fear. But he was back within three months, unharmed. Medical school so far has not resembled single-parenthood in any way. And there are so many others things that have not been what they could have been.

So, as we get close to Cody's birth in just a few days, I am much more excited than fearful or anxious. God has promised me that "it will not come near" me, and His promises are always true. I don't know how that will work, but I believe that this will not be the worst case. From a medical perspective, there is a chance that Cody won't survive even one hour. I don't know that this won't be the case, but I don't believe it will be. I believe that God has given us a beautiful son who, whatever else may happen, will know how to love and be loved.

"He who dwells in the shelter of the Most High
Will  rest in the shadow of the Almighty.
I will say of the Lord, 'He is my refuge and my fortress,
My God in whom I trust.'

Surely He will save you from the fowler's snare
and from the deadly pestilence.
He will cover you with His feathers,
and under His wings you will find refuge;
His faithfulness will be your shield and rampart.
You will not fear the terror of night,
nor the arrow that flies by day,
nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
You will only observe with your eyes
and see the punishment of the wicked.

If you make the Most High your dwelling--
Even the Lord, who is my refuge--
then no harm will befall you,
no disaster will come near your tent.
For He will command His angels concerning you
to guard you in all your ways;
they will lift you up in their hands,
so that you will not strike your foot against a stone.
You will tread upon the lion and the cobra;
you will trample the great lion and the serpent.

'Because he loves me,'  says the Lord, 'I will rescue him.
I will protect him because he acknowledges my name.
He will call upon me and I will answer him;
I will be with him in trouble.
I will deliver him and honor him.
With long life will I satisfy him
and show him my salvation.' "

Psalm 91

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.”

  

I mentioned in an earlier post that we have a lot to be thankful for already:

Andrew is in medical school, which means that he understands a lot of what is going on, and is on the inside at the hospital. He can interpret a lot for me, and this is so reassuring.

Andrew's rotations have somehow been less demanding than usual. The residents and doctors he is working with have been very understanding about letting him leave when something is going on. One day we had appointments scheduled for the whole morning, and Andrew was in his surgical rotation, which is the most demanding of all. He was planning to come to our appointments anyway, but he didn't even have to ask for the time off - a surgical conference was in town, and he had the day off!

Andrew had already been through his pediatric and obstetrical rotations when we found out about Cody's diagnosis, which means that he has already worked with most of the doctors we are dealing with. The doctor that interprets our ultrasounds every month was actually Andrew's preceptor (sort of a mentor/boss) during his OB rotation. I don't know what kind of care other people get, but I can tell you that our care has been excellent so far. We have even had a doctor stay late after work to meet with us and answer our questions.

I have already had two c-sections. This might not seems like such a blessing, but since this one would have to be a c-section anyway, it means one less scary unknown. C-sections aren't fun, but at least I know what to expect. And, again, Andrew's knowledge this time around has helped to explain some parts of the procedure that were particularly scary.

Living about a two-minute drive from UVA, the best of everything is right at our doorstep. This especially includes the spina bifida clinic, where all the resources are in one location. A lot of people would have to drive for hours to get to one.

We have extremely supportive family, who are willing to drop everything to be here when we need them, for as long as we need them. 

Because Andrew is in med-school and I stay at home, the boys and I are on medicaid. This means that every single medical need that any of us has is covered. All of Cody's surgeries and care will be covered with no co-payments at all. What an unimaginable relief! I watch enough TV to know that not everyone can just sit back and relax about medical payments.

I have always been a pretty negative thinker, but somehow with this (on most days), I can see the positive. That in itself is something to be so thankful for - there is no way I could just change my personality and see things differently through self-effort. I know, because I have tried. I only know one Person who could make a change like that in me.

Lest I start to sound too perfect . . . I am having a really sucky day today. I have a terrible headache, and I am completely peopled-out.

I had to take the boys to the doctor today for flu shots and Austin's three-year-old check-up. Turns out that Austin has to have surgery to repair his herniated belly-button. Lots of kids are born with them (Jack was), and they usually heal up on their own, but Austin's didn't. It is really a no-big-deal, non-invasive surgery - possibly even outpatient, but still. Seriously, life? Seriously? The poor kid has already had rabies treatments this year, not to mention everything else that is going on. I really don't feel as sorry for myself as I sound - I know things could be so much worse. But I am not coping real well with anything today.

Jack and Austin's school pictures were yesterday, and I didn't find out till today that you have to pay for them ahead of time in order for any pictures to actually be taken. So Austin will have no school picture for his first year of school. Really stupid thing to be upset about, but I cried all the way to Lowes after I dropped them off. Jack's first school picture is so precious, I hate that Austin won't have one.

All of this is the worst thing about our situation for me right now. Having to wait 4 months between finding out about Cody's diagnosis and actually dealing with it. The day-to-day stuff is just unbearable sometimes. I have this huge thing looming in front of me, and I have to deal with tantrums and poop and picky eaters and nightmares and permission slips and dishes and headaches . . . . It sucks sometimes.

To top it all off, pregnancy seems to have inflamed my carpal/cubital tunnel syndrome till it is worse than its ever been, and I can't knit at all. I almost can't even cut my food or wring out a dishtowel. So, I have no outlet or interest to give me a little bit of fun and a feeling of accomplishment. I didn't knit last week, and it didn't help at all. I feel like a zombie.

A sweet friend of mine, who is due with a baby boy just a few weeks after Cody is due, asked me if I mind her talking about her baby. I don't mind. I don't feel badly about Cody's diagnosis. I am sad about it sometimes, and I get really scared and anxious about some of the details sometimes, but I don't feel disappointed or like I am getting gypped. I couldn't love this baby more if I could somehow know he would be the perfect child. I can't wait to see him and meet him! As my husband said today, this is right. This isn't some kind of mistake - this is the gift God has given us. A few years ago I think I would have seen Cody's condition as a form of discipline - something to make me "better" or more "righteous," or as some kind of test. But now I see it as a gift of pure love. He is a little boy - not a trial. Yeah, I might not always feel this way - I'm sure I will be angry sometimes, and overwhelmed with the responsibility. But thank goodness how I feel doesn't dictate reality. I have perfect peace about it, and that passes all my understanding.

We had another ultrasound today, and a consultation with the neurosurgeon. There isn't really anything new to report. Cody is growing well - 1lb, 9oz, in the 50th percentile. The lesion is right where they thought it was, and the hydrocephalis hasn't increased. Now it is just monthly ultrasounds until time for the c-section.

P.S. on the latex thing: whatever causes the allergy in latex is also found in tropical fruits: bananas, papaya, passion fruit, mango, kiwi . . . . If this kid ever goes to visit his grandparents in Trinidad, he may have to go in a bubble! There is so much to learn - we have a book about spina bifida, but every time I open it I get freak out and have to close it. I guess there is plenty of time to learn most of it.

Meanwhile, I am already sick of even saying, "spina bifida." I think I have spent way too much time on the phone explaining things in the last week.